Jackie's TMJ Story!
TMJ STORIES!
Candle of Love, Hope and Knowledge
This candle signifies the light we wish to shine on the
Knowledge needed, to continue our struggle against our
pain, suffering and injustices...Please, don't let the light go out...
FOR ANGELS UNITED WE STAND TOGETHER!
We need justice. We need toleration, honesty and moral courage.
These are modern virtues without which we cannot hope to
control the forces science has let loose among us.
-I.A.R. Wylie
This is me at the age of 21 before all the surgeries! This all started in July of 1976. I had just turned 18 years old. I went into the hospital to have my tonsils taken out. My throat swelled and I was having trouble breathing. The doctor was not able to get an airway down me; so, they had to dislocate my jaw in order to do so. That is when all this trouble began.
A few months later, I started having trouble with my jaw locking open and closed. I went to see a dentist about it. He told me I had TMJ and, at that time, all he could do for me was to wire my jaw shut in order for the muscles to heal. So, for two weeks once a year, I had this done. After the second time, I refused to have this done again because I was at work when I became sick and I was not able to leave. Had I left, I would have been in my car and unable to cut the wires and I would have choked to death. That really scared me.
So, the next time I was in pain and the locking started, my doctor decided to use rubber bands on me. That was fine until they started to snap on me and that really hurt. It was now 1979 and I had already suffered with this for three years. Now, I wanted to just ignore the whole thing, so I did. Big, big mistake. I was also told to get a football guard (now called a sports guard or night guard or splint) that you heat in hot water and put in your mouth to get the bite that you have and to wear this at night to help take the stress off the TMJ and to stop the grinding and clenching. I was not about to wear that, let alone sleep wearing it!! I should have listened to them and perhaps I would have never had the troubles I have now!
I had moved out of state and was living with my aunt and uncle. I had a new job and was doing well with just a few minor setbacks - a car accident and my knee operated on in September of 1981. Then, December of 1981, I had to have my wisdom teeth removed and my dentist did this in his office. I had never thought to tell him about my TMJ! He had put me under and, when I woke up, he told me that he was unable to take them out due to the fact I was having trouble breathing. He then noticed that I had TMJ so he sent me for X-rays to have temporomandibular joint arthrograms done which showed bilateral, anteriorly displaced discs and an osteophyte on the right condylar head.
The dentist then explained everything to me and I was told that this was only fixed by having surgery and that was necessary since the cartilage on the left side was moving towards my eye. I needed surgery but I had no medical insurance and, since I was working as a waitress full time, I was not able to receive welfare unless I was fired from my job. Even though I tried to get fired, my boss would not fire me because I was the only employee that he trusted to work nights by myself. So, I was stuck as the hospital refused to do it without $10,000 down. My life was a living nightmare. The pain was unbearable. I was now taking pain pills and muscle relaxants and, when that didn't work, a few beers would. I had taken too many pills with beer after Christmas and ended up in the hospital for several weeks.
After several months in pain, my doctor called me to his office as he had found a hospital that was willing to help me. Cleveland Metro, a teaching/learning hospital. I had to drive about 20 miles three to four times a week for treatment; but, it was worth it just to be out of pain once and for all.
March 31, 1982- I had a surgical exploration and meniscoplasty of right and left temporomandibular joints and arthroplasty of the left temporomandibular joint. After the surgery, I had physical therapy three times a week; then, after therapy, I was to be seen by my doctors and I had quite a few of them. I then had to change my job because after getting off work at 7 AM, driving 20 miles one way, then getting home by 1 PM was becoming tiring. So, I changed jobs and found a room to rent just five minutes from the hospital. This took place in August of 1982.
The pain was getting worse and I was seen almost daily at the hospital. I had all kinds of pain medications, muscles relaxants and splints, one after another. Nothing worked. So, now, I was going to the ER for shots to help ease the pain. I had called off work one night for the first time because of the pain. When I went in, I was fired because it was a Friday night and my boss did not accept the note from the hospital as an excuse. At this point, I had no idea what to do my since doctors had no idea as to how to help me. They would call me and have me come in so they could pull some teeth, thinking that is what was causing the pain. They would just keep telling me they would call me when they had something that would help.
Well, losing my job was the last straw for me. So, I took a lot of my pills and downed them in beer. I was so angry that this was happening to me and I could not deal with the pain any longer. I drove my car to a parking lot, waiting to die. I was in front of a phone booth so I decided to call one of my doctors and tell him off. I was so angry that they could not help me. Well, he had two phone lines and he called 911 and they traced my call. I was, again, in the hospital for a while and all my pain medications were taken away from me.
I knew I had to get on with my life somehow. That's when I started to turn to God. I had no one but him. I found another waitress job and was making really good money. I was told by my doctors that they thought braces would be the answer and I needed at least $400 to get them. They went by income as to what I had to pay. OK, I wanted to try that. Well, I never did get the braces. I met my first husband where I worked. I was so alone and scared. I thought I was in love with him. We were married November 19 and, in December, I found out I was going to have a baby. Then, another nightmare started for me soon after we were married and I found out I was pregnant, he told me he married me to get a green card and he was going to be deported if he didn't get one! What a shocker for me! Well, my doctors called me and said they could help me with a new implant that was made out of Teflon that would last a lifetime. Because of the pregnancy, I was not able to have it done until after the birth.
My husband filed for divorced after my daughter Sheila was born in July and, while I was in the hospital, he moved me out of our apartment and to a friend's house to keep and eye on me so that I would not go to the immigration office! The doctors would not do the operation until my stress levels were down. I was left alone to raise a baby and my family was unable to help at this time and they were 100 miles away. And, they had no idea what kind of marriage I had! In August, for the first time, I found myself alone in the apartment and I made plans to get Sheila out of this mess so she would be safe! I was given Sister Hope's phone number to place Sheila for seven days until my sister came and got her! Then, I moved myself out to a friend's house! Then, in October, I had to go get Sheila because my sister broke her leg in five places and her youngest was five months old and she could not care for a newborn. I then had to place Sheila in foster care.
I worked two jobs until the surgery on December 22, 1983. At that time, they did a surgical exploration of the right and left temporomandibular joints with insertion of proplast Teflon implants right and left side, meniscectomy on right and left side, removal of osteophyte right condylar head.
I was pain free for a short time. When I started to complain of the pain, I was told it was all in my head and that these implants would last a lifetime. (Oh, what a joke!) And, did they ever know about this! And, check this one out and check the date, February of 1984. Did they know this when I said something was wrong with the implant in May of 1984??? Was I part of the study that was going on from 1982-1987? Was I a cover up for the study? And, is this the reason my complaints of pain and something wrong during that time were blown off and is this the reason? They told me that they could not help me because I moved out state!
"NEW ORLEANS, LA 70119-2799 (504) 948-8565 DEPARTMENT OF ORAL AND MAXILLOFACIAL SURGERY FEBRUARY 14, 1984 DR. CHARLES HOMSY PRESIDENT VITEK, INC. 3143 YELLOWSTONE ROAD HOUSTON, TEXAS 77054
"DEAR CHARLIE:
"I HAVE RECENTLY REDONE A RIGHT TOTAL JOINT PROSTHESIS FOR WILLODEAN WILSON WITH ABSOLUTELY DEVASTATING RESULTS FROM THE FIRST PROCEDURE WHICH WAS A SYNCAR FOSSA ARTICULATING AGAINST A BOX TYPE CONDYLE. YOU MAY RECALL SHE IS THE ONE THAT IS OPENING AND CLOSING IN THE MOVIE AND WAS DONE APPROXIMATELY 18 MONTHS AGO. BECAUSE OF RECURRENT PAIN AND SWELLING, WE RE OPERATED HER LAST FRIDAY AND FOUND A SIGNIFICANT 2 MM THICK ENCAPSULATION WITH HEAVY BLACK PIGMENT OVER THE RIGHT ZYGOMATIC ARCH. THE METALLIC CONDYLE HAD DUG ITS WAY INTO THE FOSSA TO THE NOMEX LAYER. YOU WILL BE RECEIVING THE CONDYLE FOSSA AND CONSIDERABLE TISSUE WITHIN A FEW DAYS TO EVALUATE THIS CONCERN OF MINE ABOUT POTENTIAL FOSSA WEAR AFTER SUCH A SHORT PERIOD OF TIME. IF THIS REPRESENTS A RESULT AFTER A COUPLE OF YEARS OF SEVERAL HUNDRED PATIENTS WITH TOTAL JOINT PROSTHESIS, WE HAVE A CALAMITY OF UNBELIEVABLE PROPORTIONS ON OUR HANDS. I THINK WE NEED TO DISCUSS THIS AND CONSIDER SOME LABORATORY STUDIES TO GIVE SOME CREDIBILITY TO WHERE WE ARE GOING WITH THIS SYSTEM. I'LL BE GIVING YOU A CALL TO DISCUSS THIS LATER IN THE WEEK.
"SINCERELY YOURS,
JOHN N. KENT, D.D.S. BOARD PROFESSOR AND HEAD DEPARTMENT OF
ORAL AND MAXILLOFACIAL SURGERY
"And of course, we did end up with a calamity of unbelievable proportions on our hands." This is an example of one of the transitions that fosters iatroepidemics." (This letter has been in the public domain of Usenet for several years.)
Well, I had to get on with my life and I had a baby to get out of the foster care. My family wanted me to move back to Pennsylvania so I did in February of 1984. I found a job and got an apartment for my daughter Sheila and me. And, in June, I was able to go get her out of foster care in Ohio and take her home at last!
I kept after my doctors in March, April and May that I was hurting and something was wrong with the implant! They told me it was all in my head and I was fine; after all, those implants were made to last a lifetime! A lifetime is right! It is a lifetime of hell for me!
I was able to receive welfare and, because of everything I went through, my case worker suggested that I stay home and bond with my baby. So, I did. And, the pain got worse. Cleveland told me, because I had moved out of state, they were no longer able to treat me. So, I went back to my old dentist who had first treated me in 1976. He refused to touch me because of the implants and sent me to Dr. T. Wilks, a specialist in TMJ but not a surgeon. He was a great help to me. He took X-rays and found that the implant had fragmented on the right side. He could not see the fragments because the implant was gone and, what he was seeing, he could not believe. My jaw was a mess.
He called my doctor in Cleveland and found he still refused to treat me because I lived out of state. Dr. Wilks then called all over the state of Pennsylvania and no one would touch me. I was in trouble. All he could do was send me to physical therapy and make me another splint that I kept wearing down overnight. He finally had to put metal in it to help.
By the grace of God and for some reason, January 29th, 1985, I was pain free!!! March 21st, I was married to a man that I had known for ten years. He was in the Coast Guard and he was moving Sheila and me to Coos Bay, Oregon. Dr. Wilks told me, if I was still pain free in six months, I was to find a doctor who would be willing to put braces on as my jaw was now in the position that the braces would help.
I did find a Doctor out west but he wanted me to fly to Seattle to have the treatment done. Well, after talking to my husband, we decided to wait until he was transferred to a bigger city.
The honeymoon didn't last. By August, I was back in Pennsylvania and he filed for divorce. No real reason was given to me other than he just could not be married. So, I came back to Pennsylvania to start my life over again. I never did get the braces which now, from all the other stories I have read, I think was a good thing not to do.
I was out of pain until August of 1990. The left side started to hurt and lock on me. I went to see Dr. Wilks again and he did an MRI. The left implant was breaking up and you could see where it was trying to push through the skin by my left eye. My jaw was a mess and the nightmare had begun again. Dr. Wilks said that God had sustained me for some reason. I had nerve damage and that is why I was pain free all those years, which was a blessing for I was able to raise my little girl who was now six. She was now old enough to understand, somewhat, about the pain and was able to make sandwiches and heat food in the microwave when I was unable to do so. My family had been a great help by taking her for the weekend or for the night!
9-19-90 The MRI report of Temporomandibular Joints:
"Fair characterization of both joints in the oblique sagittal plane and the closed and open (22 millimeters incisoral) mouth positions is accomplished. There is gross distortion of the architecture of the left TM joint. In particular, the apex of the condyle is severely misshapen and the condyle itself relatively thin. The eminence is irregular, possibly reflecting postoperative change. Coronal views of the joint reveal what may represent the implant disc seen lateral the position of the deformed condyle and likely represents lateral dislocation of that prosthesis. There is very little motion of the condyle with opening, with no significant translation occurring but with a small amount of anterior motion documented. The right joint is somewhat better defined and reveals the presence of a significant change within the condyle, again with thinning and irregularity of the apex of significant condyle. Low signal structure at the apex of the fossa, on the side, may represent prosthesis. At the signal structure at the apex of the fossa, on that side, may represent the prosthesis. At the signal anterior margin of the joint spaces, adjacent to the eminence, is seen a second area of decreased signal, irregular in shape, which may represent another portion of the prosthesis or could represent reactive change and scar formation or even disc remnant. Again, although there is a small amount of anterior motion of the condyle with opening, physiology translation does not occur.
IMPRESSION: Gross distortion of both joints is present and described above. The most striking finding is the severe change in the morphology of the condyles and eminencies. The remnants of the prostheses are likely identified and are described above."
I didn't want to go back to Cleveland but I had scared Sheila one night when I was eating and my jaw locked shut on me. I was choking and my little girl, bless her heart, started to rub my jaw trying to help me! By December, I had no choice but to call Cleveland back to remove those implants since they had been recalled by the FDA.
On February 1, 1991, they were removed. Postoperative Diagnosis: Bilateral temporomandibular degenerative joint disease. (Also noted on this was: I was 32 year's old and previously had a re - operation in 1983 with bilateral temporomandibular joint discectomies and placement of Teflon. Patient did well until August of 1990!) I did not do well! That thing broke on me sometime in February of 1984!!!! I had that Teflon in me for about nine years! And, they did not get all the fragments out and it is still in my body somewhere!!!
1/18/1991 Unit NO: 591317 CT OF THE TEMPOROMANDIBULAR JOINTS "Coronal CT scans of 2mm slice thickness were obtained without contrast material. During the course of the examination of the patient moved within the gantry thus it is not possible to obtain quality 2-dimensional reconstructed images. "The coronal images demonstrate on the left side that the implant has subluxed in a lateral direction. Anteriorly within the joint space metal clips are seen medial to the implant. The left condyle has an erosion or nitch along the lateral pole. This could be post surgical change.
"On the left side the implant intact although it is thickened and may be balled up within the glenoid fossa (scan C1). There is marked deformity with loss of bone involving the right condyle. Specifically most of the lateral pole is no longer present. There is thinning of the medial pole. The area of thickening in the implant that is seen may have caused erosion of the lateral pole of the condyle.
"IMPRESSION: 1. Left TMJ Lateral subluxation of the implant. Deformity with notching or erosion of the left condyle. 2. Right TMJ marked erosive deformity of the condyle as described. Thickening of the implant within the glenoid fossa." Operation: Removal of bilateral temporomandibular joint Teflon implants and placement of costochondral cartilage. I spent three weeks in Cleveland with my aunt and uncle and returned home on weekends. I was able to receive physical therapy here in Pennsylvania. Gene, my PT, was wonderful as he seemed to understand about TMJ even though I was his first patent who had had all these operations.
I was almost pain free and happy. In July, I took a part-time job with my church, cleaning, and I was able to do that on my own time. In November, I took another part-time job working in an appliance store. It felt so good to back on the work force again.
Then in December, the pain returned again. I was seeing my doctors about every six weeks now. I was put back in PT for muscular trouble, so they said. By February, the pain was unbearable. I had to quit working for the church. With a daytime job, I cleaned the church one evening during the week and again on Saturday unless they had a guest speaker in. Sheila was being neglected. I came home from work, took a pain pill and fell asleep on the couch. Sheila was so quiet; I would never hear her come in. I would wake up about 7 PM and she would be sitting there watching TV. She would say, "Mommy, I made supper, soup and sandwiches." She was only eight years old. I was in so much pain that I would forget to check her homework which didn't get done. She almost failed. I went back to Cleveland In March of 1992.
I was told to avoid stress and, at some time, I would end up having a metal jaw put in, more physical therapy and I should come back in June. I went back in June and, this time, he took X-rays, came in the room to look at them, grabbed them and was gone for about half an hour. When he came back, he had two other doctors with him. He explained that I was going to need more surgery and the metal jaw he talked about was out of the question because it was found to deteriorate the skull.
He suggested I come back in July. Well, I quit my job just for the summer because I didn't want to leave Sheila with any sitters. I was busy in July with company since my dad and his wife came to visit for about three weeks and I just didn't have time to run over to Cleveland. I was also dealing with my uncle's death, the uncle I had lived with in Cleveland. He died in May, the day I had planned a big Memorial Day picnic at my house which my aunt and uncle were planning to attend. Instead of the picnic, I had to be at the funeral!
So, I just didn't want to go back to Cleveland again just then and returned to Cleveland in August. And, to my surprise, I had a whole new set of doctors who had no idea what was going on with me. And, nothing in my records said anything about needing more surgery! I asked to see the Chief of Surgery since he had been on my case since 1982. He had retired! I was told the pain was all in my head again. I talked to the new oral surgeon and she told me that the X-rays were normal, nothing was wrong with me and to come back in six months! I never went back. Something was wrong there!
I went back to work when school started. I began to have trouble with my right foot - a bone spur. I was being treated for that and I did not handle the cortisone very well; so, with the pain medications he gave me, the pain in my jaw was covered up. In December, I was to have my foot operated on. That surgery was canceled on me because I was allergic to the antibiotic Vicamycin. I was never allergic to any medication before. This was something new. The surgery was set for January. This time, my doctor wanted to wait until after the operation before giving me anything. Everything went well and I got my medication filled; it was Percodan. I was allergic to that, too! I could not understand why I was having trouble with the medications all at one time.
I was then put on Nubian and then Darvocet-N the same thing with the allergic reaction! So, I was given Anaprox and I was OK with that. I was on that until July. Then, my jaw started hurting again. I filed for Social Security in 1991 and my lawyer told me that I had to find a doctor. Well, I was on welfare again and I discovered TMJ was not covered! After a dozen phone calls, someone finally suggested the University of Pittsburgh. It was a teaching/learning hospital. There, I found Dr. Braun. Even though now I still have to drive 100 miles to see him, it is worth it. A CT scan revealed that I had bone fragments all through my face.
9/15/1993
CT scan of the TMJ Joint:
"Technique: Cornal views through TMJ and axial views with sagittal reconstruction were obtained without V contrast.
"Findings: No Prior study was available for comparison. On the right side of the condyle is small and may have been partially removed. There is a corticated bone fragments medial to it that may be due to residual bone graft. The right glenois is flattened and irregular. "IMPRESSION: 1. BILATERAL DIMINUTIVE CONDYLE PARTIALLY SURGICALLY REMOVED. 2. FLATTENING OF BOTH GLENOID FOSSA. 3. NARROWING OF THE TMJ JOINT ON THE LEFT SIDE. 4. BONY FRAGMENT MEDIAL TO THE TMJ ON THE RIGHT SIDE AND CALCIFIED MATERIAL LATERAL TO THE TMJ ON THE LEFT SIDE AND CONSISTENT WITH RESIDUAL BONE GRAFT."
So again, October 26, 1993--1. BILATERAL TEMPOROMANDIBULAR JOINT ARTHROPLASTY WITH RELEASE OF ANKYLOSIS. 2. LEFT COSTOCHONDRAL RIB GRAFT FOR RECONSTRUCTION OF RIGHT TEMPOROMANDIBULAR JOINT. 3. RECONSTRUCTION LEFT TEMPOROMANDIBULAR JOINT WITH TEMPORALIS MYOFASCIAL FLAP...with seven bone screws put in. That was four operations at one time, four cuts and ten hours in the OR!
PATHOLOGY REPORT- 10/26/93
"GROSS DESCRIPTION: The specimen is received in buffered formalin in two parts. Part 1 is labeled 'Cartilage graft right TMJ.' It consists of seven irregular segments of rubbery, firm, tan-white cartilaginous tissue, ranging from 0.7 to 2.0 cm in greatest dimension and measuring 2.5 x 1.6x1.0cm. In aggregate, with adherent fragments of pink to white, soft tissue. There are also several synthetic blue-green suture segments ranging from 1.5 to several synthetic blue-green suture segments ranging from 1.5 to 3.0 cm, in length. The cut surfaces of the cartilage are dense, smooth and pink to white. Representative sections are summated labeled 1.
"Part 2 is labeled 'Cartilage graft left TMJ.' It consists of two irregular segments of rubbery, firm, tan-white cartilaginous tissue, 2.1x1.2x0.6 cm. in aggregate. The larger segment shows a focal disruption with adherent coagulated bloody debris, and the cut surfaces show focal evidence of calcification. Representative sections are submitted for routine decalcification labeled 2."
I was only in the hospital a few days and doing well. Back to PT again - this time Gene was not there and I had a new physical therapist that was afraid to touch me. He said I knew more then he did.
Then, in November, my sister gave me an article on TMJ she read in Woman's Day magazine. I read the article by Paula that was a lifesaver for me. Paula Beaulieu, a TMJ Survivor! She had the Vitek Implant in and this explained a lot to me and I now understood what was going on with me!
For some reason, I was always getting sick, sinus infections, colds and I felt like I had the flu. I, now, was getting some light as to what was happening to me. The implant fragments were still in my blood stream. That was why I was having trouble with the medications. It was not until I had pneumonia in December that I realized I had overdone it and the stress was high at that time. I have, since then, learned to rest, rest! When I feel a cold coming on, I get out the vaporizers and stay home and rest. Since then, I hardly ever get sick and I now get a flu shot each year.
I also used Paula's story to help me get on Social Security since they needed to see something in print as to what damage the implant did! TMJ not very many people are aware of it, let alone understand it. And, I had a good lawyer. I received the SSD in March of 1995.
Then, the pain started again in August of 1994. I was in and out of the ER so many times they thought I was a drug addict. I was also allergic to Stadol and Dolobid so I was put on Vicodin.
On 10/26/94 I had a CT scan of the TMJ Joints:
"On the right side, the patient has a rib graft. The vertical height of the cartilaginous segment is approximately 4-5 mm. The osseous portion of the rib graft does not appear to the base of the skull at any point. More medially. However, the native condyle does cause some degenerative changes. There does appear to be lucency, and I am not sure whether this is actual bony contact or it is slightly distracted from the skull base. A small osseous fragment which could be dystrophic bone is seen medially relative to the head of the condyle.
"On the left side, the patient has a very irregular head with shortening of the head itself. There is irregularity of the glenoid. A very thin lucent line separates the two bones. I cannot see definite material (soft tissue) between the two bones. However, this is usually difficult to visualize. Irregularity of the cortex is frequently seen in the postoperative case. The lucency between the bone comes through of 1-2 mm. "IMPRESSION: RIB GRAFT, RIGHT SIDE WITH NO BONY ARTICULATION OF THE GRAFT BUT WITH CLOSE APPROXIMATION OF NATIVE CONDYLE TO SKULL BASE. IRREGULARITY OF THE CONDYLE AND GLENOID ON THE LEFT WITH A NARROW LUCENCY REPRESENTING SOME SOFT TISSUE. THE MINIMUM SPACE IS 1-2 MM. THERE ARE SOME AREAS WITHIN ARE SLIGHTLY WIDER. BUT BONE DOES COME TO BONE IN MULTIPLE AREAS."
Now, Dr. Braun told me to prepare for more surgery in the near future! I had enough of surgery and I held off as long as I could on this one; but, the pain and locking got the better of me!
I was not able to work at all at this time and Dr. Braun told me to avoid stress at all cost. So, I told him to raise my teenager for me. Well, I had to get on with my life. Right?
January 9, 1996--I had to have more surgery but just the right side this time. A RIGHT TEMPOROMANDIBULAR JOINT ARTHROPLASTY, RELEASE OF ANKYLOSIS RECONSTRUCTION WITH TEMPORAL MYOFASCIAL FLAP AND ZYGOMATIC ARCH OSTEOTOMY.
I tried physical therapy again and was told the same thing. I found out that Gene had his own practice so I went to see him. This time, he was not able to help me and he said now I knew more then he did. And, at this time, I had 12 bone screws and he did not think it was a good idea for me to be out in the cold when I could be at home with the heating pad.
And, again on May 13, 1997--RIGHT TEMPOROMANDIBULAR JOINT ARTHROPLASTY WITH REMOVAL OF DEEP BONE PLATE AND FIXATION DEVICES.
I now have 16 bone screws in my jaw. And, in the hospital, I found I was allergic to Decadron and, three days after I went home, I was allergic to the Vicodin; so now, there is not too much I can really take for pain. Then, I finally found a physical therapist that was willing to try to help me. And, he did his best. He was able to get me a TENS unit and sent me to a pain clinic where they discovered that I had Fibromyalgia. Now, I knew why I had trouble sleeping and why my bed all of a sudden seemed so hard. I went out and bought a water bed and, boy, that really has helped me to sleep and the moist heat is wonderful! The doctor at that pain clinic was unable to really help me. I received two treatments and they were not helping; plus, with each treatment, I would pass out and my blood pressure would drop too low, too fast and I was scaring the staff!
From May until December, I received PT three times a week. I finally needed a break so I had to quit and Jeff was at that point where he was unable to help me anyway. I took a break from seeing Dr. Braun until August of 1998. And, I was tired. In February, I rented this house which was next door to me and redid the inside of it with the chance I might be able to buy it later. I stripped wallpaper, plastered the walls, sanded, painted and put borders up. I put about $600 into this place! By April 1. I was ready to move in and then the surgery was scheduled for May! I really needed some time to myself and to spend more time with my daughter. She was 14, could not stay out of trouble, ran around with the wrong crowd and I needed to be home to be with her!
When I saw Dr. Braun in August, he wanted me back in PT. The pain was getting worse so Jeff called him and told him he could not help me. I was scheduled for surgery on January 12, 1999, for a Bilateral TMJ Arthroplasty. Well, my surgery was canceled due to low blood supply at the blood bank due to the bad winter we had that year. I am now allergic to Tylenol 4 which was helping me for the pain.
March 2, 1999-Bilateral Temporomandibular Joint Arthroplasty. Also noted was, "The patient is a 40-year-old women with a long history of previous bilateral joint surgery with previous right reconstruction via a costochondral graft and left temporalis myofascial flap reconstruction."
"Procedure: Operated today under general anesthesia she underwent exploration and arthroplasty bilaterally of the temporomandibular joint. At the time of surgery immobility was identified and was able to be improved to approximately 22mm. The joints were noted to be freely mobile, however potential impingement may occur at the level of the coronoid processes, Lateral excursions were able to be readily achieved at the dimensions of approximately 3 to 4mm and into protrusion. Through examination confirmed that any additional surgical procedures must include consideration of total joint replacement and coronoidectomies."
So if he is going to do anything on me it would be a total joint replacement!!! So as of right now he can not do anything to help me!
This will be the last operation my doctor can do on me since I don't have much left to work with anymore. I last saw him in July of 1999 and was doing well at the time, the best he had ever seen me; but, he would not be able to do any more surgery on me! In April, two weeks after my surgery in March, I moved into a quieter area where there were NO dogs barking, neighbors playing loud music and yelling at me because they did not understand the pain they were causing me. This had been the situation in my previous neighborhood where a few people did not try to understand it because I looked fine to them.
One of the neighbors, who did not understand anything at all about TMJ, thought I was lying just to get on disability. He tried everything he could just to get me to move and I had to get the police involved when he tried to break into my house because my motion detector light went off! So, he bought the house that I had rented, fixed up and was thinking of buying when I could! I was glad that my landlord would not let him into the house or property until I moved out and that I was allowed to move out when I was able. Then, the closing date would be set for after I had moved out! I told him to set the closing date for June 30th as this would give me time to find a place and to rest after surgery! Well, I did move two weeks after I had both sides of my jaw operated on, but only because I found a nice quiet apartment in a very nice neighborhood. I have a side yard next to a creek and my garden with tomatoes.
That was the best thing for my daughter and me. When I removed myself from the previous, stressful environment, I found it played a big role in my not having so much pain. I had lived there for two years, having moved there in 1997 after living in the house next to it for 10 years. This house was in better shape and he never bothered me before when he was just two houses up. Then, he moved down one house and I moved up one house and I still didn't really hear him playing his music when I was in the house or his two dogs barking, either. He didn't like to be asked to keep his music down so I wouldn't hear it in my house. In this city, there is an ordinance regarding loud music and barking dogs with a $300 fine if the police are called three times on it. I would always ask him, first, to turn it down or do something about the dogs. The other neighbors had no problem with me asking them when I was hurting as they knew me and had seen me in pain. I asked them to turn it down first before I called the police, that was being fair and it was only when I was in so much pain, I could not stand it! But, this jerk was a big jerk! Well, anyway...
Dr. Braun told me Last July 1999 he can no longer help me, so if my jaw shuts down I am in trouble and on a feeding tube. It is now Feb., 27, 2000, the pain is back not as bad as before, but Tylenol is not helping. My PCP told me he could not help me because DR. Braun was treating me and he didn't know about what I had done, so far my bite is good, I do stretch my jaw as open as I can get it, I have a thero-bite to use but it puts me in more pain and I don't use it all the time just so it don't close down on me, Dr. Braun has discharged me from his care now, I called to get more pain medications, and he is unable to do so.
So now what, I have no idea what to do next and I am scared. What do you do when you are so beyond help that no Doctor can help you now? Dr. Braun was so good to me and had really tried to do all he can and it is not his fault I have nothing left to work with, I mean by that, the condyle. so far gone he is no longer able to do anything to it. The pain has been really been bad the last few weeks and I am not sure anymore if I want to continue anymore experiments, Since 1976 my life revolved around the pain and work then around raising my daughter and taken care of the house and the pain always won. So now I just want some kind of life of my own and I really don't want to travel so far away now and I am tired of hearing we cannot help you. I need a life and now that I have started dating again which is nice. But I can't hide the pain from my date or cancel the date because of the pain so where does this leave me???
Well I heard back from Dr. Braun and he is not able to help me at all being he has discharged me from his care not even put me in PT let alone tell me if John Hopkins can be of help all he tells me is go if you want to! Why go if I don't know if they can be of help! That is more of a pain then the pain I am in! So where does that leave me again? My family Dr. is trying to find someone that can help me now. So time will tell what will happen to me now!
I have been trying to keep myself busy and so I don't sit around and feel sorry about myself. But it hard because on my good days I over do it and end up tired and in pain. And if I make plans to do something like a wedding or baby shower most times I can't make it because I am in Pain so it is not easy to really have any kind of life unless I ignore the pain and force myself to go and then I am in more pain. So no matter what I do it is so hard to promise someone I can be there or do something I have to live day by day as to how I feel depends on what I do!
Well On June 28th 2000
I will be seeing this Pain DR. who thinks he can help me! I think he will be more of a Pain to me! I have to joke about this now, I am so tired of being in pain and I think my daughter learning to drive is the real reason for the pain! I had received and e-mail from Paula B sister Lindy. I had found her email on Paula's site and email her, she told me I needed a MRI done to check for giant cell, told me to Educated my PCP so I took over all the information to him on the Vitek implant my operative reports and anything I could find that would help him so he can help me! He then understood the fear and that I have on the fragments in my body and order an MRI!
June 4 2000 - Good news!!
I did called Dr. Braun's office today and talked to Susan his secretary to find out why he discharged me, I wanted to find some answers! AND I did, Susan told me that when Dr. Braun seen me last July and because I was doing so well he didn't see any further need to continue treating me and he did tell me that he would not be able to do any more surgery on me, so when I called for pain medication and to see if he can place me back in PT he had discharged me and was not able to do that. Susan told me he had left a message in my chart that If I start to have pain again or any questions that I could see him in the office, so I have an appointment on July 27th so I will then be able to find out for sure what he will be able to do as for treating me at least maybe he can get me in PT!
So much for miss communication! When I called I was in so much pain and was upset to hear he had discharged me I never thought to ask why He discharged me! I canceled that pain DR.; I didn't think he would be much help to me any ways!
So please before you call your DR. or see him, write down what you want to say! Ask questions! If I had done this sooner I would have been in to see DR. Braun by now not go through all this crap! Being in pain you sometimes lose judgment as to what you need to say or ask!
On July. 27, 2000. I went to see my OMFS DR. Braun and he was not able to read the MRI that my family DR. had order for me. "I have to much mental in my jaw!" So Dr. Braun did another x-ray the one that spins around your head, and the findings are normal for the type of surgery I had done, no change. If you call a rib and 16 bone screws normal! So he did put me on a new pain medication called vioxx to see if that will help, I am also on Effexor XR for the stress. Most of the pain I was having was mostly caused by stress. So far after a year and half since the 15th operation I am doing as well as can be expected. Just need to limit the stress in my life, how do you do that with a teenager learning to drive? Good question, but I am glad that everything is fine and hopefully this will be the end of my nightmare and now I can I have some kind of life! Just need to watch for the stress and not over do it.
Having TMJ or TMD is an endless problem that never seems to end and will there ever be light at the end of this nightmare? Will the pain just go away and leave me alone so I can have a life any kind of life will do!
I had started writing poems in 1991. A friend had put six of them to music and she sang and I did sign language and did like a dance to the music we performed in our church and was asked to go several other places with it and when the pain worst I had to quite doing this it was hard to plan something like this and have a schedule date and you can not cancel. It was fun while it lasted, but the pain was getting worst. SO I now have about 11 poems published.
I now have this web page where about 13 of my poems up., out of a hundred I managed to get up last winter of 1998, when it's to cold to go out side. I work on that and spend as much time with my daughter that I can and do things with her when I am having a good day. One of her favorite things to is just go for a ride with me that is when we have our best talks. Now she does the driving!
I also go inter tubing down Clarion the river and get a bunch of our friends and family to go and then a lot of food to eat because after about 4-5 hours on the river we are hungry! The times that I am in pain I try to take Sheila out for ice cream and I can eat that. If not I'll rent a movie and we watch that together. It is so important to be with your kids as much as possible when you are not hurting and make those memories with your children that they can know what you are like not in pain. Do something crazy, have a beach party in the winter in the middle of your living room. Make those summer foods. Laugh, play games do whatever it is that you have to do to try and make memories. I used to just try and get caught up on my housework, but a dear friend notice Sheila being upset and she took the time to talk to her and then me. Boy that was an eye opener. Bake and cook with them let them make a mess, look what fun you'll have cleaning up together. And only do this on a GOOD DAY!
Now that Sheila is old enough to help me with the house work we split it up, we work to together so we have more time together.
Sheila is now 16 soon to be 17 in July 2000 and she has been such a blessing and so helpful through all of this, when we moved she did most of the packing and caring boxes and helped moved most of everything in and set the house in order for me, I did what I can when I was not hurting so bad and my friends and relatives pitch in when they could. But Sheila did most of it and even put up mini blinds and curtains!
Sheila now has TMJ and is wearing a splint at night to help her, when she has not lost it! Which she did a few weeks ago and in her room and so far we have not found it as of yet, tore that room apart looking for it, it was $400 and my medical Insurance will not cover it and DR. Wilks let me make payments on this but after a few payments I notice Sheila not wearing it so I made her pay for it, at least it not my money being wasted and DR. Wilks and I have yelled at her about how important it is for her to wear this because she could end up like me needing surgery and I will Never Never allow that to happen to her knowing what I know now about TMJ and surgery!
I finally found her splint! Sheila has a dresser drawer under her bed she keeps her socks in and it was in there! I took them out to sort them and found it what a blessing! If only she will wear it!
I hope my story can be of help to someone. Please listen to your DR.! Write down your questions! And if you’re having jaw pain, or your jaw making noises go find a good DR. to help you. Also please try and avoid any surgery if possible so you don't end up like me! I know I needed the first surgery I was going to lose my eye I had no choice in that one. The implant was going to be a sure deal, the pain over ruled my judgment with that, I should have done some checking on that implant or get a second opinion to see what other options I had at that time.
So please don't let the pain over rule your judgment as to what to do for what is best for you! I do know Dr. Wilks had been so great as to trying to help me When Cleveland refused to take me back and so has Dr. Braun. They were only trying to keep me from the pain and fix my jaw that the implant messed up! And there are many options out there don't just go for the first one, do your research on this first get on a TMJ List and ask your questions state your fears! I only wish I knew all this 18 years ago! I would have never let them put an implant in me! I was a guinea pig to be tested on!
This is what I had looked like in 1995!
The above photo is what I look like on a good day, I look normal and healthy no one can tell I am disabled unless they live with me and see me when I am in pain and my face is swollen like a balloon, and believe me no one wants to see me on a bad day! I hide in my room in the dark away from everyone! My family and friends have learn to call first to see how I feel before they come over. I have kicked them all out at some point when I am in pain and I do not tolerate anything, all I want is to be left alone in my quite world and I just start yelling at anyone who bothers me for any reason on those bad days!
I gave up all hopes for a future and take one day at time... I can not handle any more pain and rejection that this disease has caused me. Any dreams I had and hopes for a future are gone. I start to reach my goal of wanting to work or date and more surgery or more pain hits me and I am down again starting over again fighting to be pain free again.
I would like to get married again after 17 years of being alone, but having two divorces that never lasted a year has scared me and my major concerned when my daughter was 2 years old was rising her in a stable home with my having so many surgery's and being in pain was hard enough on her let alone up rooting her again only to have to start over again if the marriage didn't work out was not fair to her. I could not have raised her alone without the help of my family!
My sister's and Aunt and uncle and my friends took Sheila when I was in so much pain and could not get out of bed to feed her and at times my dear neighbors would feed her for me when she told them I was sleeping and in pain!
Now that she is 18 and working and wanting to be with her friends. I find myself alone a lot, I have dated but nothing that will last, being they don't understand TMJD and what hell is like and it scares them away.
So finding that special man who is willing to share those golden years with me will have to find me and understand what TMJD is really like when the pain is so bad that all you want to do is hide from the world and anyone and everything has to wait until the pain finally decides to leave.... and planning on anything is a day by day thing as to how I feel when I get up and what I can and can not do for that day.
Any man that is willing to put up with day by day living as to the pain level for the day to decided what to do for that day or something that was planed far in advance as to what to do, do we go or do we cancel and to understand anyone with TMJD and willing to stay for better or worst has to be very special man to be my husband or any tmjd’s suffers husband or wife!
Where my life is now due to this disease... Well my day depends on the pain level and I now have learned not to sit around feeling sorry for myself and I force myself to get up and do something any thing, cleaning, cooking, working in the garden trying to be out side as much as possible before it gets cold and I am stuck indoors all winter! I make sure my 17 year old is taken care of first. being she is in school and working I am home alone a lot, So I am on the computer a lot pain or no pain the computer is my friend at night when I can't sleep I find something to work on like this or the family web site on myfamily.com. Or my web site and trying to get all my poems on it. Or chatting with my friends. I read when I am not in any pain. Or on the cold winter nights I am making an afghan for someone for Christmas and helping my niece with her two small babies, I try to date and go out but that depends on the pain the pain controls my life which now is not much of a life when I am in pain!
What would I be doing if I had not suffered the losses associated with TMJD and the Vitek from HELL!
I WOULD BE WORKING AND HAPPILY MARRIED AND SHARING
THOSE GOLDEN YEARS WITH SOMEONE VERY SPECIAL!!
I went to school for keypunching and word processing which was a waste of my time and money being I cannot work now! I had work for Blue Cross in Cleveland Ohio. I was a waitress for many years and loved waiting on tables!
My aunt Sharon has wanted me to help her in the safe house for women that have been abused or raped, I tried to go to the 60 hours of class room training and after 3 day's I had to quit the stress was too much for me to handle and the pain was back. That is something I know I would be good at and doing right now if this disease had not taken control of my life.
Most of my family including my dad are involved in this and I wanted so much to be part of this, my aunt feels I would make a good counselor being I know first hand what these women are going through for I have been there, My first husband beat me and I have been raped twice and I know the pain and heart aches these women are facing as to the fear of starting over with their lives for I have had to start my life over many times. I can say to them I know and understand the pain you feel and cry with them because I have been there! And to have someone who fully understands what you are going through is a rare find.
I did go for stress management, but they thought if I relived the stress I had in my life 25 years ago and re-lived my dad who had accidentally shot my Mom On Dec, 16 1975. I would be able to get rid of the stress I have now! They told me they can help me get rid of the pain and understood what I was going through and it was important to deal with the stress in the past! That is bull to me; I wanted to know how to deal with the stress of everyday living now!!! Not deal with something that happen 26 years ago! So I asked them do you have TMJD? Did you have that Vitek Implant put in? Did you Father accidentally shoot you mother or someone in your family?? Do you understand the Pain and frustration that we go through when we are told we can not help you right now we will call you when we find something that will help?? Of course NOT! I told them when they every go through what I have gone through to give me a call! I needed someone who understood what hell I was living!
Someone who understood me for who I am! I was not a guinea pig that they think they can help the pain and suffering I had gone through, I been hurt enough and I need friends that understood this!
I never did find a counselor that understood the TMJD pain, but I did find many TMJ friends on the Internet that I can cry with when they tell me the pain they are in or they can cry with me when I am in pain and that has help me so much to get through this fight of pain knowing I am no longer alone in this I now have friends that can understand because they have been there.
That means so much to a TMJD suffer is finding someone who has been there to be their friend and understand the TMJ of hell! I have suffered with this since 1976 and in 1997 I got my computer and I found many web sites on TMJ and on yahoo support group Or the Delphi site to where I can talk about my pain and someone reading it and sending me a message back of encouragement to keep on fighting this.
In 1998 I finally learned to make my own web page and put up my poems and tell my tmjd story! I had no Idea that people were reading my story! And through that I found my TMJ friends and more when I found their story on the Internet and I e-mail them.
Right now I am in touch with a tmjd friend from Florida who is going through all the surgery's on the grafts and it not taking because of a cyst eating the bone, she just had her cyst burned out and her jaw wired shut, MRI and CT Scan every week to make sure the cyst don't come back and hopefully In March she can have the rib grafts done and be pain free or have a some kind of life.
We have spent many on hours chatting on the Internet and talking on the phone, she found me March of 2000 when she came across my web site and was so happy to find someone who had has the rib grafts done and understands the pain she is in. Before she got connected to the Internet in Feb., she could not find much at all on TMJ and she is a paralegal! And could not find anything to be much help to her! I let her vent out to me on how she is feeling, then she can laugh and feel somewhat better because I can relate to what she is going through and share my experience that I had and we can laugh together.
The day of her surgery In Oct. 2000, she called me after the surgery to tell me she was alive, I could hardly hear her she was drugged out and her jaw was wired shut, I told her I was happy she was alive and now it was time for her to shut up get some sleep!
It took her a long time searching on the Internet to find someone who understood and care what hell she is going through, she is happily married and has a teenage daughter, but they don't really understand the pain and fear she is facing, and to know someone who has gone through the pain and knows the fear of tmjd surgery and wondering is this what I need, I am seeing the right Tmjd surgeon, we talked many hours on this, she had many things to work though she did get a second option that Doc wanted to put in a implant in that was not approve by the FDA at that time.
It is now but she was worried about the cyst being cut out again by this Doc. we even talked about her seeing my Tmjd Doc, And she had a friend in Long Island N.Y. that worked for a OMFS and wanted to see her as well! She found out she had options open to her and she was able to make the right and best decision for her. Her Doc called her in Sept and she had not heard from him since July decided to burn the cyst out and wait to see if they grew back before any more rib grafts which was I feel the best thing for her.
Even though I was disappointed she would not be coming up here, I would finally meet her but she needed the surgery badly and was in a lot of pain and this was a good choice for her. Please read her story and email her that would mean so much to her if she had more friends that has gone through this, I have never had any cyst's nor had my rib grafts destroyed like she has had.
Shirlett's Up-date December!
Good news it was not the cyst growing back in on her left side it is tissues muscle from her stomach that has nothing to attach to since the left TMJ joint is gone and she has a lot of bone loss as well! And Her OMFS has decided to hold off on the grafting until Sept, 2001! He want to wait more to be sure that the cyst will not come back and do more damage! Even though Shirlett is in a lot of pain and now has CFS and would like the surgery to be done and over with she can understand why the wait! Sept.17 2003 Up- Date on Shirlett! She did get a total joint implant in The TMJ Concept Implant. She is doing well.
It is so hard for anyone going through any kind of surgery let alone TMJD surgery there is not much out there on the TV or in magazine's on TMJD surgery, and not everyone can afford a computer to start searching for help on tmjd! My friend in Florida was scared and didn't know what options were open to her at this time and finding me or someone to give her options helped her make the right choice!!!
When the Vitek implant was pulled off the market in 1990 there was some coverage not much but coming across Paula Beauieu in Woman's Day Magazine about TMJD. At that time helped me to understand what was causing me to be sick and understanding how my immune system was affected by the fragments that were not taken out. My Doctor's In Cleveland never told me this! I then got my operative reports and read for myself that they could not get out all the fragments! I never knew the side affects I was having was associated with the Implants! I never read Woman's Day Magazine until my sister brought me that magazine article that was talking about what I had!
That saved my life knowing what was going on with my body and what was causing it. I would have never been able to get Social Security if it had not been for that little bit of coverage on TMJD and the implants! I had been trying for three years, then when I had something in print something they can read in a well know magazine that related to what I had. I was then granted the SSD and SSI.
My Friend in Florida was being turned down by SSD also I told her what I did gave her Paula's web site, I told her to print that out and mine and the other's I gave her to read and she was granted her SSD! In Nov. She was turned down twice with a letter stating that TMJ is not disabling, after she sent out the information on TMJ that it is disabling she got a letter back saying they would check more in to this! Now in Sept when she seen her OMFS he called the SSD and told them over the phone that she can not work!
We think he just pushed it through a little bit faster, and she feels if she had got that information on TMJ into the SSD office they might not have turned her down the second time! Not even the people in the Social Security office understands TMJD! They see we look fine we can walk, talk go shopping on our good days we are normal, but if they see us on a bad day then look out! We re label as crazy!
If my friend did not have a computer she would not have learned the options open to her she would not have been able to print out the information to help her get her SSD. She would have made a wrong choice as to what kind of surgery was best for her, she might have had the second opinion and might have took that option and once again have the cyst cut out and the implant put in and her life might have been ruined.
When we first started talking and she found out her rib grafts were gone a month after her surgery and the cyst was back and the pain un-manageable and SSD turning her down and Her Doc not knowing for sure what step to take next, talking with someone who had been there and letting her know the options to her, even telling her know a moist heating pad helps for pain she went out right and got one and found out the pain was more manageable with the heating pad! The heating pad for TMJ is made from Battle Creek it is a Thermophore! If you can not find one at the drug store you can write to:
Battle Creek Co.
307 West Jackson Street
Battle Creek, Michigan, 49017-2385
My friend works in a drug store and went to a conference and seen this and order it for the store she knew I need something like this, It is for TMJ and it has straps on it held with Velcro to stay in place over your head! It is moist heat and you don't have to wet anything! So you can do what ever you want like be on the computer! Now you have to hold the handle and my dad fixed mine by using Velcro to hold it down and I love it and I am on my second one wore the other one out! Now I have found out this can be cover by your insurance company or Medicare! And if you have a prescription from your Doctor and have a medical supply store near you, you might be able to go that way to get yours! Check with your insurance first to see if they will cover this for medical reason!
I ended paying for my second one, being the store in my city moved and the medical supply company that does Oxygen didn't cover it with the insurance. But they called and found a place 30 miles from me. Well at that time I was in so much pain I started to cry, and these lady's believe it or not had only one TMJ heating pad that was to be given away in a drawing, let me take home and let me make payments on it! They could see my face was swollen and I was hurting so badly and I was no shape to drive 30 miles to get it! I paid $37 for mine, but my friend in Fl. Paid $17 for hers and has seen them at Wall-mart! My friend might have killed herself because of the lack of coverage on TMJD! And she has told me this herself! When she was upset she has someone to call someone to vent to someone to just listen to her!
I know I been there! I tried to kill myself so many times because of lack of understanding of TMJ, not knowing the outcome of TMJ, not knowing when this pain will end! Having Doctors who had no idea how to treat me and not having someone who understood the pain I was in someone I could relate to a friend to listen.
At that time of my life I just wanted to end it, when my daughter was born she was the only reason I am not dead yet she gave me the will to live, the will to fight this! She was my reason to go on living this nightmare that never ends! I would have missed out on so much. But there are many others out there who can't find someone to understand what the hell they are going through and they give up to early! The only coverage on TMJD is the Internet! And most of it's because of people like me or Paula or someone with TMJD wanting to tell our story and get the word out on TMJD! And not everyone has a computer but everyone has a TV a radio or someone reading a magazine that can inform them about TMJD!
How many others like us have died by there own hands because lack of understanding of TMJD??? By there spouses or family not understanding the pain of TMJD. The boss who fired them because of missed worked and not understanding what TMJD is and how it affects our every day lives? Or because a Doctor butcher them beyond repair and failed to inform them he made a mistake! Then being turned down because of no Insurance my friend had to fight this one also! Or those who were told you are beyond help we can not help you so instead of looking for more options on the Internet since there is no other coverage out there as of yet, they give up the fight of TMJ and give up their will to live! They miss out on seeing their children grow up and miss out seeing their grandchildren.
Update- Nov.23, 2000
I am now allergic to the Lora-tab that was helping me for pain when I needed it. Now My Dr. wants me to take antidepressants one every night I tried it and it does help the pain and helps me to sleep, but I can not function the next day and I do not want to take anything unless I am in Pain. My DR. told me it is more effective taking it everyday then it would be taking it just when I need it, I am so tired of this. I just want something to help with the pain when I need it not something I have to take everyday and I am not depressed so what do I do now? She mention about me getting on the patch for pain but I don't want that either. I am not in pain all the time and now the weather is colder it has set the pain off again and I just need something to take when I just need it. I have gotten to the point I just don't care to take any medication unless I really need it, once I am on something for a while I end up being allergic to it then having to start all over again on finding something to take again and the Lora tab I was able to take it on and off for the last two years when I needed It. Now this DR. Is my new PCP that is now working with my other PCP and he wanted me to see her not him, that surprise me, until I learn she has TMJ! And had no clue as to who to see in this area! Nor what to do, she never had Surgery so I suggest DR. Wilks to see if she needed a splint.
I had to educated her on the Vitek Implants and most of what I sent in before were in my Records for her to read, but also she gave me her e-mail so that if I find anything on the net that would help her help me I could send that to her as well. You know when you have to start educating your own Doctor on something like tmjd you know there is not enough information out there for them unless they know where to look on the Internet!
Up-Date Dec. 19 2000
I was on list server on TMJ support and one of the people read my story here and the trouble with my meds, pointed out to me about being allergic to most of the pain killers told me it was my auto immune system was sensitive because of the fragments and that is why I was just having itching because it He also pointed out to me that Vicodin and Lora tab are the same thing! I never knew this so I looked up all the medication's I was having trouble with and all of them have sodium in it, and depending on the sodium level in my body was the reason for the itching, After talking to my Dr about it she agree that that might be my trouble and she then has me on Zoloft, Ibuprofen 800 mg, nor flex and she put me back on Vicodin as needed with the pain, to be taken with Zyrtec that don't make you sleepy or Diphenhist which is Benadryl. That really seems to be helping. It was such a blessing for that person to bring that to my attention, it is such a shame that the only information is here on the Internet and not on the news or somewhere for those who have this disease can find out more information on it!
Update March 16, 2001
A lot has happen since Dec. 2000. I have not gone back to my DR because I am afraid of what he might say. My PCP helps me with pain medication and I see her about every 3 months.
There we share our TMJ problems and vent out how we feel.
My Jaw is shutting down on me again, but fear of more surgery and implants that don't work scar me. I want a life to live and the computer is the only life I have right now. That is where I meet my TMJ Internet friends.
I wish I had the answers that so many of us ask? What do we do now and where do we go for help since the Vitek of hell ruin out lives?
I wish I never had made that decision to have it put in but I was lead to believe it was a cure all and I didn't have any other options. Now PTFE is in by blood stream and the DR's don't have an answer for us.
I would not take legal action or never will against any DR. the reason for this is I don't want to sign a gag order let alone be without help. So many I know can not find a DR. that will be willing to look at them and they are left with no where to go.
What hurt me so much is the fact the hospital that put mine in would not take it out until it was recalled and they just blew me off. Once they did take it out that is when I got my recall letter on the Vitek implant.
My Life right now is a mess, I am scared, I hurt a lot and I don't want the patch or pain pump. I live my life day by day as to what I can and can not do. My daughter will be 19 in July and she still don't understand why I can not work! And she lives with me she sees the pain and yet can not understand the life I have nor does my Family.
No one really knows the pain we have with the loss of family relationships that don't work out or the job losses. If they can see I have no legs they would understand that or if this disease was cancer or aides they would understand that as well.
But this disease from the Vitek implant is not labeled as of yet so no one really knows or understand what we go through!
When I first starting seeing Dr. Wilks in 1984 he explained to me a way to describe the pain so others can fully understand how we feel. The jaw joint is a load bearing joint! It takes more on the jaw joint then the knee does when you walk! So see yourself in a swimming pool your walking around in 3 to 4 feet of water. You do not feel the 400 pounds of pressure around you, because every thing is working correctly, just as your jaw is working correctly you do not feel the pressure when you talk or chew because every thing is working that it is design to work. You get out of the pool you are walking along the edge then someone pushes you into the water! Ouch that hurts! You do a little belly smacker! You did not go into the pool correctly and you hit the water! But that pain is something you can live with it. On the pain scale from one to ten this about a 5. For those who have TMJ and live on pain medications we know we can handle some pain on a daily bases and we can live with it. So you just laugh that one off and go on with your swim.
You then decided to go on the high dive and you do a perfect swan dive! You hit the water with ease and feel no pain because you did every thing correctly! You get out of the water and want to go back up and do one more swan dive! You go out on the diving board and get ready to dive into that clear blue water! Then some idiot comes up behinds you and pushes you into the water. You hit the water full force and you just did a big Hugh belly smacker! You come out of the water crying the pain is so bad that you start screaming at any one that is in your way, all you can think of is the pain and getting rid of that pain! It don't matter who comes over to help you! The pain level is a 10 but feels like 100! You had hit the water full force and feel the 400 pounds of pressure! All you can think of is getting rid of that pain!
Just as your jaw joint any type of stress can put you in more pain when it is not working correctly. You just want to be left alone!!
I know when I am at the pain level of a 5 and take my pain medication I can handle the small belly smackers and go on with my day! But then if there is more and more stress or people demanding your attention right away that 5 can easy go up to a 10 and then the pain is so bad you lash out at anyone that comes near you! All you want to do is go to a quite place in your home and take your pain medication and just try and get some sleep. I have lashed out at so many people when I am at pain level at 10. I had to explain this version of the swimming pool so my friends and family can understand the pain level and what stress can do to the jaw joint and when I have the Hugh belly smacker they just need to leave me alone until I am ready to deal with them and what ever problems that come up!
And this is what I look now in Aug. 2001. As you can see it looks like I am now losing my chin due to bone loss!
On March 6, 2003. I went back to see Dr. Braun. This time he was able to help me, and was a little upset I did not come in sooner to see him. But this time my daughter had come first and then me. After talking to him and seeing the damage done to my jaw on the x-ray. I finally decided to have more surgery and to have the TMJ Concept put in. Something I thought I would never ever do again was to have another Implant put in! I was in so much pain and starting to lose teeth due to bone loss, I just wanted to feel human again and not be in a lot of pain!
I talked to Dave Samson who makes the implants and he was so help full giving me all the information I needed. I had a gotten a phone call from another lady who had this implant in for 4 years and she is doing great.
So on: April 16 2003
Title of Operation
REMOVAL OF HARDWARE, LEFT ZYGOMATIC ARCH AND RIGHT MANDIBLE.
PREOPERATIVE DIAGNOSIS (ES) 1. INFLAMMATION, HARDWARE DEEP. LEFT ZYGOMATIC ARCH TO RIGHT MANDIBLE.
2. ANKYLOIS OF TEMOROMANDIBULAR JOINTS.
This surgery was 2 more cuts and leaving me at having 17 total and 4 more when the TMJ concept was ready. I was to be an out patient but I did have some trouble with bleeding and breathing, so they kept me overnight for observation. They did have to do an nasoendotracheal tube intubation on me that was the worst thing anyone could go through, I was awake to help them and the tube I felt it slicing the back of my throat. All I could do was cry and kick my legs and my Dr Then see the trouble I was in and had them put me out. But I made it through it.
May 8, 2003
I had to go back to Pittsburgh so they could do a 3-D CT scan of my jaw. A mold was made from that to make the TMJ Concept. I have the photos for that which I will be placing on here as soon as I get my other photos together, I have before and after photos of all the surgery's so you can see the difference in my face.
July 23, 2003
PREOPERATIVE DIAGNOSIS (ES)
BILATETAL TEMOROMANDIBULAR JOINT (TMJ) DYSFUNCTION AND DEGENERATION STATUS POST MULTIPLE OPERATIONS BILATERALLY.
This is when they placed the TMJ Concept implants in. I had 2 cuts on each side left and right jaw. Total surgeries to date is now 21 and hoping that will be the end it. This time they did another awake on me, but used a fiber optic intubations on me, it took several times but finally did it. I still was aware what was going on, but nothing like the first time.
I was in the hospital for 3 days. It took me longer to recover from this then I thought it would, but as of Sept. 21, 2003. I am almost pain free. And now off all the strong pain medication and taking just: Ibuprofen 800 MG when needed. My opening is now is 32 mm! The most I have ever opened my jaw up! I am so happy that I did go through this and now starting my life all over again. I am starting to date again as well!
Update Sept 22, 2003
A lot has happen in over a year! I needed to spend more time with my daughter and help her get off drugs! As well take care of myself!
My daughter is now 20 years old and joined the Job Corp. And taking classes for landscaping and driving dump trucks! She sign up in Feb. 2003 and left for school in June. But was arrested for selling drugs! She had gotten a hold of my pain medication when she was home visiting and I didn't notice any missing!! Since I was trying to get off of it and had not taken any. I had it hidden and she found it again! In March I had about 19 of my pain medication taken, then again in May, which this time I called the police and they could not do anything! She and her friend didn't have anything on them!
She was in Jail 6 hours away from me; she was there 38 days, then out on probation for a year! My pain was getting bad from all that stress and not knowing what was going to happen to her! She had really messed up her life and she blamed me for it! What is a single mother to do; I can't watch her 24 hours a day! And she could not deal with seeing me in pain!
UP-DATE! FEB, 26, 2004
WELL I AM STILL PAIN FREE FROM MY JAW! WISH I CAN SAY THAT ABOUT MY HAND! I NEED SURGERY SOMETIME SOON, I HAVE COPRAL TUNNEL SO TUE, I GO FOR THE TEST TO CHECK THE NERVE DAMAGE AND MARCH 16 I WILL FIND OUT WHEN THE SURGERY WILL BE.
I OVER DID IT, WHEN I MOVED AGAIN AND WITH PACKING AND MOVING AND DID SOME PAINTING MY HAND IS A MESS. BUT MY DAUGHTER SHE DID MOST OF THE MOVING OF THE BOXES FOR ME AND STORED THEM IN THE GARAGE OF THE NEW PLACE. AT LEAST SHE IS STAYING OUT OF TROUBLE AND NOW WORKING AS WELL.
WE HAD TO MOVE AGAIN MY NEW LANDLORD RAISED THE RENT ON ME AND IT WAS ABOUT TO GO UP AGAIN AND I CAN NOT AFFORD 450.00. SO MY ONE FRIEND WAS MOVING OUT OF HER PLACE WHICH IS A 3 BEDROOM DUPLEX WITH A GARAGE AND FULL BASEMENT AND THE RENT IS WHAT I COULD AFFORD! AND IT IS NICE AND QUITE HERE MY NEIGHBORS ARE NICE AS WELL!!
I DID GET MY 3D SCANS UP ON HERE THOUGH FOR EVERYONE TO SEE WHAT MY JAW LOOKED LIKE IN MAY 2003, I STILL HAVE NOT GOTTEN THE BEFORE AND AFTER PHOTOS DEVELOPED YET BUT I WILL AND I DO NEED SOME DENTAL WORK DONE AS WELL SO MY BITE IS CORRECTED SO I WON'T MESS THIS SURGERY UP. AND DR. WILKS WILL BE CALLING DR. BRAUN AND GETTING THAT ALL SET UP FOR ME SOON AS WELL. BUT HERE IS THE WEB SITE OF THE JAW MOLD
UPDATE Aug. 28 04
I went back down to see Dr Braun for a check up on Aug, 23. He is now calling me his miracle child! I am having some pain Dr. Braun told me that was to be expected for what I have been through. But I was not in any pain in JUNE!! Since I was doing really well and he don't need to see me for another year! This is the first time in years that I have been pain free now for about 9 months! Even though I am in a little bit of pain now and then. But I don't see myself as a miracle not yet! I need a miracle of about $5,000 to get the braces and dental work done so I don't mess up this implant!
I have no money or means to do this at all! This is hurting me so much! Its been years since I have been pain free this long! And the only medications I am now taking are: Ibuprofen 800MG when needed, 1 Flexeril 10mg once a day, Pamelor 25mg twice a day for my FMS. I take Ambien 10mg at night if needed.
I want so badly to be able to take the 60 hours course for the women crises center this fall, but the fear of the stress on my jaw has me in fear of doing this! I am putting more pressure on the condyl again! By bite needs fixed so I can bit down correctly, right now I am only able to bite down on my 2 back molars on the left side! So eating is harder now as to chewing anything! I can not bite into anything! I would love to be able to bite into an Apple or a ear of corn without having to cut them up first! Chewing steak now puts me into pain, so I do need to take a pain pill after eating a steak!! So most of the time I am back to eating soft foods again like pasta! I am so tired of pasta or soup and I have gained so much weight because of this!!
The upside of this is I am out of Pain if I don't eat a steak or pork chops or anything that is hard to chew! The downside of this is if I eat only pasta I will be gaining more weight and I want to get back into my size 12!! Either way I lose and I don't see this as being a miracle not yet any ways! The only miracle I need is the $5,000 I need to get all the dental work done as well as braces to correct my bite and take the pressure off of what is left of my condyles. Then I can really live my life the way I want to and that is not in fear of the stress on the TMJ joints and breaking the TMJ Concept implants! The implants alone cost my insurance company 13,000! So why won't Medicaid and Medicare pay for the dental work so I don't need another TMJ concept if this one breaks! My guess is they see this as cosmetic and not necessary to have my teeth straighten out and bridges put in to fill in for the teeth that Cleveland metro took out!! They don't understand that being able to have a bite that is correct can take the pressure off the TMJ joints so I won't break the $13,000 implant that they paid for! As well as I might be able to find a job that I can do and get off of SSI and SSD! Because then I won't have to avoid the stress that I take out on my Jaw! They will sooner or later have to pay for more surgery to have the broken implant taken out as well as a feeding tube put in so I can eat! That will cost the state more money to fix what they broke because they won't pay for the dental work in the first place! I can not work because I need the medical insurance in case I have to go back in for more surgery! And working is stressful and I can not handle stress because I take it out on my jaw! And that puts me back in pain!! And being in pain I can't work at all! So I need a miracle to get the dental work done!
UPDATE ON SHIRLETT!
Jan 11, 2005 Read all the updates she has added! Shirlett kept a journal of her pain and what she was going through in the last 5 years; she has added photos of before and after surgery as well. So please take the time to read her story!
Jan.11. 2005
Well I am back in pain again!! I am going crazy!! The pain started back in Oct. But I was painting and cleaning, I thought I had just over done it again!
But In Nov., it was more then I could handle. So I went to my PCP and she put me back on the Pain patch as well as the Vicodin 750 mg. I am so up set by this!!! I do not want to go on living in pain like this!! I had to make appointment to see Dr. Braun Jan 6, but I had to cancel due to an Ice storm and my Daughter was afraid to drive in it. I was not about to drive it either in the pain I was in. So I now have to wait till Feb. 3 and pray that day it will be nice to make the 100 mile drive to see him. I don't know how Shirlett does it, she has to drive 6 hours to see her Dr, and I am having trouble just making a 2 hour drive!!
I am to the point all I want to do is scream and cry!! I can not take this much longer! I am sure it's because I did not get the dental work done and the braces. My jaw is locking shut on me and muscle spasms going through my face like a lighting bolt!! My Teeth do not match I can only touch the 2 back molars. That is what I am chewing on the left side!
I could feel my jaw sliding when I chew, so I am now back on soft foods again. I sleep a lot now to get rid of the pain. Why is my insurance will pay surgery which is way into the thousands, my last surgery cost 59,000 plus 13,000 for the implant!! Now if I have to have more surgery and of course my insurance will cover it. But if they had paid for the dental work, I really don't think I would have any pain now!! Nor would I have the fear of more surgery!! I think 21 jaw surgeries is ENOUGH!!!! My Face don't look me!!!! I hate the way I look!! I have 2 large lumps right beside my ears! I don't even care to put a Pic on here as too what I look like now. This is just not me!!
My daughter was doing really good in Texas and working! She left in Oct. And came back home the end of Nov. And she is now afraid I might be dying! She claims she is staying with friends, but she is home everyday takes showers here and sometimes sleep here, I think she is doing that just to make sure I am not dead!!
She knows how much pain I am in! And she is so afraid I would OD on medications! I am so careful when I take a Vicodin I write it down so I know I took one and when I took one, the pain patch is to be on 72 hours, but It don't work until I have it on a least 15 hours, then I get the second day almost pain free again for about 7 hours then pain!!! It's not helping me!! So I end up taking at least 2 Vicodin a day now!!
I am so tired of this; I don't know how much more I can take! I am yelling at my friends and ending my friendship with them because they do not understand what pain is! And they kept calling me and wanting me to take them shopping or to their Dr Appointments!! My God I can't even do that for myself!!!! I hurt too much. My one friend of 19 years just didn't understand how I could be in so much pain, and yet she kept calling me and almost demanded I take her to her Dr! Let alone she kept asking me the same thing over and over, I got tired of her calling me and I would have to repeat myself to her. So I ended our friendship!!! She just could not understand I was in Pain again! Now matter how many times I told her since Oct. So I just told her to leave me alone! Yet she still called me. So it took 4 letters to her and she still don't get it. So I just told her don't ever call me again! I just can not handle the stress she was placing on me!
I feel bad I had to do that, but I just could not go on being friends with her if she didn't not understand I can not help her!!!
The past year when I was out of pain, I was able to help her and take her where she needed to go. Then in Oct. She was told about the pain, but still put me on a guilt trip to keep helping her. I finally just had to come out and tell her...
How bad can pain be to have to end a friendship of 19 years!! I seen more of her in the past year then I seen in the 19 years we had been friends.
Before she was able to drive herself to go shopping and her Dr. Appointments and never really had to bother asking me! We chatted on the phone once in awhile or I would stop by to see her. But now she is in her 60's and unable to help herself. I was able to help her. So the pain has come between her and I, and yet she still does not understand why I can't talk to her again. If I start to call her again. She would keep bugging me again to take her place and asking me stupid questions that I have already answered for her several times, I just can't deal with the stress of all this again.
PAIN PAIN, GO AWAY!! DO NOT COME BACK ANOTHER DAY!!!!
I JUST WANT TO LIVE AGAIN!! WITH OUT THE PAIN, WITH OUT THE STRESS!!
I WANT MY LIFE BACK!!
March 20, 2005
Well I did go down to see Dr. Braun in Feb. and he took x-rays and everything is fine. SO the implant is working all right and the pain is all Muscular and arthritis as well. Well that is good so what do I do about the pain?? Dr. Braun did tell me I still need to get the dental work done and that would help with some of the pain. But Chances of me coming up with 5,000 dollars is slim to none. But everything is fine the implant is working. And I don't need to see Dr. Braun for another year unless I feel the need to go see him again.
I was telling my aunt all this and she suggested I try Aleve for the arthritis. So I did I took 2 the first time then one ever 12 hours, I also take Pamelor 25MG one in the morning as well as 2 Flexeril 10MG one in the morning and one at night as well as one Neurontin 600MG at night as well. If I have trouble sleeping I take one Ambien 10MG. To my surprise the Pain was gone!! WOW that made a big difference in my life! I was taking the Flexeril only at night but my Dr suggested taking it in the morning as well with the Aleve it took about a week before it really helped, But the Pain is gone!
I now have my life back! And I am now seeing this wonderful man, who seems to understand my jaw and understands me as well. So who knows where this will lead. Now I just need to find a way to come up with the money to get all the dental work done. But I take one day at time and see what it will bring!
I just wish the same for Shirlett; she will be going back into surgery March 23 2005 to replace the fossa that broke. This is her last chance on the implant. If this don't work they will be taking it out and she will be going joint less unless they find something else that will work. She is the first person to ever break the TMJ Concept! So Please Pray for her, she has really been through hell the last 5 years!
Update on Shirlett! April 4, 2005
Shirlett had her surgery and they had to remove the TMJ Concept on the left side, she had a really bad infection and more cyst were found. They told her in about a year they could try again and put the implant back in, but at this time she is done with any more surgery. This has been so much on her and she can't take much more, Perhaps in time she might reconsider it.
I felt do bad for her I was crying when her daughter told me what they had to do, Shirlett did not want the implants remove but they had no choice in taking this out. Having TMJ surgery is so risky you just don't know what will work and what won't work until you have it done. What works for one might not work for another. Mine had worked and now I am pain free. I just pray and hope some day Shirlett will find what will work for her.
What works for one may or may not work on someone else! This is so true with TMJ!
UP DATE Sept. 25, 05
Well I am still out of pain! This is so wonderful to finally have my life back!! And the timing could not be any better! I am going to be a grandmother! My daughter is now 22 and due to have her Baby April 15 2006! I am so excited! I can now enjoy my grandchild and not be in pain. My daughter grew up seeing me in pain everyday since she was about 6 years old! And because of that she turned to drugs and was stealing my pain medication! She was arrested several times for this. And was given a second chance, Now she has got past that and doing really good, She is not married yet but hopeful she will take her time and not rush into anything. I have gone crazy and got her everything she needs for her baby! Two of just about everything! One for me and one for her. Most of everything has been given to me. So she don't need to worry about buying a crib or stroller and car seat, I have 2 cribs 4 car seats! 2 Strollers 2 high chairs! This baby is going to have everything! I can spoil him or her and then give the baby back to my daughter! LOL!
I would love more then anything to just be able to work! But the fear of working and the stress it might cause me to go back into pain as well lose my SSD and all my medical insurance. That I can not take the risk of losing that let alone my Dr does not want me to work because of the stress of working, would cause more pain and could ruin the implant!
On another note here, I mention about my daughter was stealing my pain medication she starting doing this at the age of 14! How did I find this one out! My kid and 9 others took someone asthma medication at school!! I was called to the school to take her to the ER!! While I was there her best friend Amy was in bad shape she took 9 of the asthma pills! They were getting ready to transfer her to another hospital and I was outside her room talking to her mother when Amy yelled out loud so everyone heard the Doctors and the police that was there. Amy yelled this! "Tell Sheila not to take any more of your pills!!!! What a shocker!
I then I had to take all my medication up to the school so the police can see what I had and see if it match the pills they found in the rest room! I thought that that scare would teach them a lesson and they would not every do this again, I was wrong! I still locked up my medication.
I had found a small case and locked up my medication at that time, not knowing she had figured out how to get into it! Until I noticed that my medication was slowing disappearing and when I mention this to her she told me that I was crazy that she could not get in to it and that I must be taking more and not remembering what I was taking! She was arrested at the age of 18 for drinking and having pot in my car, then again at the age of 20 for selling OxyContin she stole from me!!!!
Please everyone if you have kids in your household and if you are saying to yourself not my kid they would not do that to me, well think again! They will if not there friends will talk them into taking your pain medication to either sell them or take them their self's! Be safe and get a mental box with a lock and chain it to something!!! Or hide in a good hiding place, and they will look for it!! So that it can not be taken and open up elsewhere!! Watch their behavior! Check your medication, count your pills!! Write it down in a safe place so you know what you took and how many you took in one day! I can not stress that enough I learn this hard way and the hardest thing for anyone to deal with is seeing your child in a jail cell!!! THAT WILL TEAR YOU APART IT DID ME! To learn that she or he is there because they got the pills from you! You left them unlocked! Unsupervised!
GUARD YOUR PILLS WITH YOUR LIFE!!!! YES THEY WILL TELL EVERYONE THEY GOT THE PILLS FROM YOU! LIKE YOU JUST HANDED IT OVER TO THEM, YOU MADE IT EASY FOR THEM TO FIND AND GET INTO!
Up-Date- Jan 26, 2006.
I am still pain free; now please understand when I say I am pain free. I was told by my Dr that I would never be pain free, so for me, if I don't need to take any pain pills I am pain free! Now I do have some days where I am in some pain and a Vicodin will take care of that. That is when I am under any kind of stress or if it is too cold outside and that will cause me so pain other then that, I can say that out of 31 days at least 4 days a month I do have some pain but pain I can manage with a Vicodin! The pain no longer rules my life! I now have a life! And April 28 I am going to be a grandmother! My daughter is going to have a boy, Boy I can't wait to enjoy my grandson!
Up-Date April 6 2006
I went to see Dr. Braun for my yearly check up and everything is looking great! I don't have to see him for another year! I have a life now, I no longer let pain rule my life, and I rule the pain and now have a life! By that I have no pain as long as I limit the stress in my life; no longer do I have to cancel anything because I am in Pain. But I am still not allowed to work. I can now plan a head and go forth with my life. I am so grateful that I took the chance and had the TMJ Concept put in! Thank you Dave Samson for making this possible for me! Thank You Dr. Braun for not giving up on me! Since Sept 1993 one surgery after another. It was like I was in the OR every other year. Now Its been almost 3 years in July that I had the Concept put in and no surgery in sight!
Up-Date May 4 2006 Now that my daughter is out on her own and doing great and staying out of trouble. I am free to do other things! Like dating and not have to worry about daughter! She had her baby boy April 24, 2:56 pm by C-Section; the cord was wrapped around his neck. His name is Vincent James. Mother and baby are now home and doing great. Though she does need me to help her out till she gets back on her feet again. I will take him for the night Sunday so she can get some sleep.
This will be the last update for awhile, unless things change on my jaw but for now, my life is taking on new direction for the better. So this Grandma will be spending a lot of time with her grandson and I am dating now so this would not have been possible for me to do with out have the TMJ concept implant put in! This is one implant I can personally say, if your offer to have it put in. GO FOR IT! It changed my life it just might changed yours!
But please remember one thing; with TMJ and surgery try everything else first before going under the knife! That you can not undo! If it goes badly and it will lead to more surgery! But if your jaw is so bad and your Dr suggest this implant the TMJ concept, then do it. But if another implant is offered to you, please please check it out, find others who have it in and do your research on it! Find out how safe it is! How long has been on the market! Is it approved by the FDA!
What worked for me, may not work for you! Everyone is different and if you read Shirlett’s Story you will understand why.
I do hope my Tmj Story has helped you in some way, and not scared you at all, with my life story the ups and downs but I needed to write it, so others can understand what tmj is like and what I had to go through in order to find what worked for me. Just don’t give up!
There is help and there is hope to a better life with out pain! I know this because I have been there and I made it through! I would have missed out on so much if I had given up! I am now starting my life over again this time without the pain!
GOD BLESS YOU!
Jackie
Up Date. Aug 20 2007
I have been so busy this summer with so many different things going on, plus watching my grandson who now is 16 months old and into every thing and talking up a storm.
June 14, I went to see Dr. Braun, I was having more pain then usual because in the end of May I had to have 3 Epidural Injection done, on my neck, one once a week for 3 weeks. The second one I had done caused my face to swell up really bad and put pressure on my TMJ joint.
I needed the Epidural injections for my neck I have 3 disk that is deteriorating. I did not go back to have the third one done, because of the pressure it caused on my jaw.
So when I went to see Dr Braun, my face was still swollen. But the implant was still in place and doing well. But he suggested PT 3 times a week for 3 weeks.
I was going to pt and my PT therapist is using a new treatment called Anodyne Therapy, Uses infrared light to increase the nitric oxide in your body which promotes healing. This so far is helping me. I had also notice that some nerves that were damage in my face I could start to feel them again. Here is the Website on this treatment.
So as of July 23 2007
Four years as gone by and so far The TMJ CONCEPT is a life savor for me! I am not in pain like I use to be, only when I am under a lot of stress and I take it out on my jaw, I still have a life, I am not taking any pain medication Other then Vicodin for my neck pain every now and then, like 2 times a week, 90 pills last me 6 months or more. So that is great news for me. Who use to go through 90 pills in less then a month and still was in pain!
I will go see Dr. Braun again for my yearly check up in June of 2008. I still can not believe that this is real I now have a life a life without living in pain. I can enjoy my grandson! Not be afraid to have him with me due to pain!
Up-date Aug 1 2008
This has been a very busy year for me! I have not gone to see Dr Braun as of yet, I have an appointment on Aug 7th. I had several appointments made that I have had to cancel due to being just being to busy! I am still out of pain, only in pain when under a lot of stress, right now the stress has been high, my dad is dying and we don't expect him to live much longer, he has cancer of the lung and the tumor is really big and starting to cut off the main blood supply in his lungs. I will post my update once I have seen Dr. Braun.
My Grandson Vincent James! He is my pride and Joy!
I have been watching my grandson now that my daughter is working and soon to be going back to collage in Oct. So I will be having him more, being that she will be in classes in the day and still working at nights. So this has kept me very busy, I don't have time anymore for the yahoo groups on TMJ at all.
I have also been busy working with our Neighborhood watch group in Oil City PA the Southside Neighborhood Association. I am now web designer for them. As well as be working on the website for the Northside Association and helping the Silvery Association on their website.
Check us out and see what we have been doing and don't forget to check the Oil City link page to the newspaper articles that have been written about us.
I am now getting all my poems up on line on this website now. I am also putting in the lesson I have learned in life. How God gave me the poems. So please take the time to read them or print them out. If you want to use them for anything please get my permission to do so. They can not be used to gain any profit from them, they are all Copyrighted.
Keep checking back to see what new poems have been added. I have 80 poems to put in and to share what Lesson I learned for that poem.
Up-date Aug. 21, 2008
I finally made it down to see Dr Braun. All is good and he is still surprise to see how well I am doing. So I am good to go for another year! He told me I was his miracle child! Now he did ask me if I was having any pain and I told him only when I am under a lot of stress. He ask me how many in a month I told him about once or twice a month, he just told me to watch the stress! I know I have to watch that big time the more busy I get the more stress I am in, so I do need to slow down and take it easy. If I am in pain a lot that stress on my jaw can destroy what I have left of any bone! The concept you see below is filling in for the bone I did lose! So far I have been Blessed to have five good years to where I can have a life!
Now I did get a copy of my x-ray I took when I was down there so this is what my jaw now looks like and you can see where the Tmj Concept Implant is placed.
Until next year, for my yearly update! LIFE IS WONDERFUL!
Up - Date October 4, 2009
Well on October 1, I had my yearly checkup and all is good to go for another year!!
Here is a photo of an an x-ray called Cephalometric that was done this year,
Oct. 1 2009
Been a very busy year for me, I lost my father on Dec, 11 2008. I miss him so much! Please read the poem I wrote about on Our Father.
In April I had a scar that my place would burn down, when the duplex I live in, the apartment next to me upstairs caught fire, thank God for him sending an Angel to barge into my home and wake me! This was about 6:30 pm I fell asleep watching the new, I had my grandson with me for several days, and took him to daycare that morning. Thank God I did not have him.
The idot upstairs had been drinking with his buddy, and parting that he was off probation for selling beer to minors. They dropped a cigeratte on the couch next to the wall and on the other side of that wall is my bedroom! Had this stranger not seen the smoke and woke me and my other neighbor this would have ended up badly, there was a lot of water damage to the point the other neighbor had to move out. the man who started the fire was kicked out of the apartment.
My Landlord decided not fix up those two apartments but allowed me to stay, I had no damage to my unit. Thank God for that. And yes the Lord gave me a poem on this too.
Other then that been busy with my Grandson and good thing I am not in pain I can enjoy him!
He is my Little Drummer Boy. He loves to play the drums, and tho he don't have any here, he would dump out his toys and turn the buckets upside down and play away! Here he is on you tube! I had to tape him. This is so funny!
What else am I doing? I am involved with the Southside Neighborhood Association besides doing the website for them, I was asked to be on the planning committee for the Neighborhood Playground to help plan it and raise money for the playground.
I am also writing several books on my poems with my life's lesson I had learned that had been life changing for me. I have sent out the first book to several publishing companies and they want to publish it. But I don't Have the money to it. Dorrance Publishing Co. Inc gave me a great review and wants the book, but I just can't afford them. I am now waiting on Tate Publishing Co. For their review. Author House wants my book as well as American Publishing Co.
I do know God's hand is in this and he will direct me to the right publishing company and the money that will be needed to get it published! I still need to edit and edit the book. The Lord has shown me how to break up all these poems into three books.
He fixed my car when I was told it was not worth fixing. That story is in Yo-Yo
You can also find me on Facebook FaceBook So please add me and let me know you read my tmj story!
Until next year.
Until next year, for my yearly update! LIFE IS WONDERFUL!
Update - March 2 2011
My last check up with Dr Braun was in Aug 4, 2110 Sorry I had not wrote on here,
The check up was fine, no changes. Good for another year.
This year had been a busy and very hard year to get through, I lost my Uncle Jake in Oct 2110
Then lost my Brother Jim on June 19th 2010. His death crippled me, I am still In Shock and miss him very much, I raised him since he was 9 years old.
I had been so busy working the playground build for the Southside Neighborhood Association and now on the Safe House Program.
Update - October 8
One more year has gone by, I seen Dr. Braun for my yearly checkup. He called me his poster child.
Told me, my bite is the best he ever seen it and that this year he did not feel it was necessary to have any x-rays done, He thinks now I should have one done about every other year.
As for me I been busy with the Southside Neighborhood again, this year on the committee for the Christmas past on Dec. 2 - 4
Just been staying busy and now going to the YMCA about 3 times a week to swim. And spending time with my grandson and enjoying life to the fullest!
Here is a recent photo of me with my daughter Sheila taken in Sept. 2011
My Grandson Vincent James on his big drum set, his Uncle Jim was going to get him before he died June 19, 2010.
My Brother was going to buy this drum set off his friend Dave, and get it fixed up for Vincent for Christmas of 2010. But before Jim could pay for the drum set, he passed away. His friend honored what my brother was going to do and just gave Vincent the drums.
You got one happy little boy who loves to play the drums! Dave and Vincent's dad is teaching him how to play and Vincent is better then his dad! I am so proud of my grandson.
the second video Vincent was 7 years old at Justice Park and asked the drummer on their break if he can play the drums and they let him, Now the same band let him jam with them 2 years later!
This video was taken Aug 2013 Vincent is playing with the big boys!
So until next year!
I need to share this with everyone, I could not have made it though all these years
With out my faith in God! The Father, Son and the Holy Spirit!
GOD BLESS YOU!
Jackie
UP DATE APRIL 11 2015
A lot has happen since my last update, I see Dr Braun now once every 2 years my jaw is fine now as long as I
stay away from the stress that will put me back in pain.
My Daughter Sheila had a baby boy Aug. 5, 2014, Chandler Ryan, he has had 2 open heart surgeries before he was 4 months old. Was back home Dec 13, 2014, Feb 23 he was life flighted to Children's hospital in Pittsburgh.
On March 26, he had a heart transplant and so far doing well. He is my Champ and now has the Heart of God!
Please keep Chandler in your prayers for God has given him a chance to live!
This is why I have not been updating my tmj story, I just been to busy taking care of my family and trips to Children's Hospital .
The photo above is Champ at 6 months one month before his heart transplant on March 26 2015.
Aug 5,2016 Is a photo of Champ and I on his 2nd birthday after having 2 more open heart within a week apart! He was one sick little boy we thought we were going to lose him, I was the first to hold him in 2 weeks, he just held on tight to me!
Up-Date Nov 2020 Chandler is now 5 years old he has had 5 open heart surveys one was a heart transplant when he was 7 month old, he is is doing great and he is my Champ! The photo above was take on his 5th Birthday on his new ride!!!
As of 2017 I was released from Dr. Braun, saying that the TMJ Concept was a working great for me, I know longer need to see him unless I am in pain again!! Its a good thing, he has retired now! So since 1993 I have been seeing seeing this wonderful Man who gave me my life back. It was a bitter sweet moment in my life!
BUTTERFLY WINGS!
Walking through the garden of hope and feeling under the weather.
Not knowing where I'll find the strength to go on another day.
Feeling amiss in such a beautiful place. Seeing the flowers of all different colors illuminating the day. I just wanted to end this day.
Turning to leave. I spotted the splendor of the day. Such a tiny butterfly in all of it's glory. OH! So beautiful are the wings! Going from flower to flower,
then flying up towards the sky.
So delicate are the wings but yet so strong to soar into the wind.
Pondering this vision I just seen. Where is the strength in such delicate wings?
Quietly my Lord speaks to me. "For the strength you see in such a delicate
vessel is within the soul of every living creature."
"For I live within you. Call upon me everyday.
And the joy of the Lord is your
" STRENGTH!"
And you are my precious tiny butterfly!
DELICATE BUT YET SO STRONG AS THE BUTTERFLY WINGS!
"God gave this one to me in 1993"
I was very depressed and wanted to die. I was sitting out on my back porch one night and pray to God to let me die. Yes I wanted to die, I had a enough I just did have it in me to ever do this again!
I was weak and did not have the strength to go on!
I have TMJ and just had my 5th surgery and the pain was worst then ever before an my Dr.'s were not listening to me.
When God quicken my heart and told me to look at that butterfly!
What butterfly! It's midnight here and it's May there is no butterfly on my porch! He told me look up so I did, there was the butterfly by daughter made for me that day! She had cut it out and colored it and hung it out on the back porch! That is when God showed me the vision of the butterfly flying into the wind! That tiny little butterfly changed my life!
The depression left and God gave me the faith and hope in him that I will have the strength through him to make it through all the surgeries. I have had 21 jaw surgeries through the years and the last one was July 21, 2003. I have been pain free since then. Other then when I am under a lot stress then my jaw will hurt. I am to avoid stress at all cost so I have to really watch out when I am under stress. When my Doctor first told me this, I asked him to rise my daughter for me! She was the one causing more stress on me that all my no's I gave her she would keep bugging me so much she knew I would give in which I did.
Had I taken my life I would have never known the plan God had for my life let alone see my wonderful grandson.
And you are my precious tiny butterfly!
DELICATE BUT YET SO STRONG AS THE BUTTERFLY WINGS!
"Copyrighted 1995"
BY: Jacqueline L. Greek
This poem cannot be reproduced, copied or altered without the consent of the writer.
THE SUN WILL SHINE WHEN IT SHINES SO THINK OF THE TOMORROW'S AND SMILE!
Thank you for reading my TMJ story!
"Copyrighted 2001-2009"
BY: Jacqueline L. Greek
This TMJ Story cannot be reproduced, copied or altered without the consent of the writer.
Now don't forget to SMILE! For there is Hope and there is HELP!
ANGELS UNITED ON TMJ!
ANGELS UNITED IS UN-COVERING THE TRUTH ON TMJ!
TMJ/TMJD - Jaw Joints & Allied Musculo-
It is designed to raise awareness of the tmj joint in the public eyes and how it effects us.
Includes a selection on avoiding surgery ect.
POEM'S TELLING WHAT IT IS LIKE LIVING WITH TMJ!
WITHOUT OUR ANGEL FRIENDS....
WHERE WOULD WE BE TODAY....
An angel on my shoulder
Smiled up at me today
I needed a friend, and the angel said
He would never go away
My Favorite Links!
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GOD BLESS YOU!