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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
March 22, 2005;
We (me & Gena) spent another weekend in Talladega with Dawn just hanging out on no time schedule. Now, I have to prepare for surgery tomorrow. Not looking forward to that. I am still torn over all this. Part of me wants to just get it over with and get the left Fossa fixed and the other half says HELL NO leave everything alone just as it is. I know it has to be done and on Friday (03-18/2005) just as Gena and I were leaving for Talladega Dr. J. called me and said my blood work was back and I had a Bacterial Infection in my body somewhere. I know where it is, it is this nasty, funky lump on my left jaw line and now she is worried Dr. D. is not going to do my surgery because of the Bacterial Infection. GREAT...just something else to worry about. According to Shands, my surgery is going to happen. I have to call in two hours and get my check in time. I have been trying to reach Greg at TMJ Concepts, he should have checked into the hotel by now. Something is not right. Okay, I have to check into Shands at 7:00 a.m. and Greg is stuck in Atlanta due to the bad weather but we hope he will get a flight out and make it to my surgery! Bobby and I are going to leave around midnight. I hope this all goes well and I hope I live through it. I am NOT finished in this life yet.
What I looked liked before my surgery in Oct. 2000, my face does not look like me any more and I don't feel like me! Will This Tmj nightmare ever end for me so I can have my life back!!
March 27, 2005;
WHERE do I start???????????? I guess I need to pick up where I left off. Bobby and I ended up leaving about 12:45 a.m. and about 30 miles west of Tallahassee we hit some really bad weather so we had to slow down to stay on the road. We got to Shands at 6:30 a.m. and I checked in. We sat in the waiting area for about 20 minutes before they called my name and as Bobby and I went to get in the "Cattle Call" line Greg walked up so he went up to the OR with us. We checked in and I was assigned to bed 26. Everything went as it has in the past. Everyone that was suppose to come and talk to me did. We went over my "possible" problems, death, not being able to use my facial muscles etc. Dr. D. came over to go over the surgery with me and some other things were brought up such as I may need to be wired (again) and IF the infection was into my implants on the left then they might have to come out, then Greg came over and a discussion began as to what parts of my implants could be reused or re manufactured, then they took me to the OR. I was left awake while they got me ready, I was given the Benadryl and then the antibiotic, some oxygen and the last thing I remember is Dr. D. Talking to someone about a cook out, I was out. I vaguely remember Dr. D. Talking to me but I could not talk back, I was in a fog and it sounded like he said I was wired AND he had to take my implants out. I woke up a couple more times and asked for my husband and was told he would be in my room when they took me up. The last time I woke up I asked what time it was and again asked for my husband. It was now 5:30 p.m and I still had not seen my husband that I know of. I do not remember being taken to my room but I woke up there and Bobby was there. I remember telling him my lower jaw really hurt and was sore like it had been hit with a hammer and asked him what happened to me. I really do not remember if he answered me I was so drugged up.
The next morning one of Dr. D's interns came in to talk to me and I told her I wanted to talk to Dr. D. She began telling me they had to remove my entire implant on the left side due to a possible infection. WHAT!!!!!!!!!!!! NO NO NO. I could NOT believe what I was hearing from her. They took my implants on the left side totally out. She explained the reason my left lower jaw most likely was so sore was due to the mandible had adhered to the bone and the implant had to be pretty much chiseled from the bone. WHAT!!!!!!! I recovered a little and then just focused on getting out of the hospital. I was taken down too clinic for x-rays ect and the person I saw there could not answer any of my questions. The pan looked like I had a rail road track on my upper teeth and one on my lower teeth. I was released around 11:30 a.m. and Bobby and I headed home. We got home about 6:30 p.m. our time. I was just crushed. Friday, March 25, 2005 I called the clinic and asked for Dr. D. To call me I wanted answers. An intern called me back within a few hours to give me my test results. NO BACTERIAL INFECTION WITHIN MY IMPLANTS.........GREAT.......at this point I lost it. I felt my implants had been removed for no reason at all. I cried and cried. I cried for a lose of my implants? I did not even cry when I lost my REAL jaw joints but here I was pouring my tears out over something that was not even a part of my real body. These were my "implants" not my real jaw joint. I felt like my arms had been cut off. The lose I am feeling is just horrid. I just want to get my implants put back in and move on with my life. NOW, I have to go through another surgery and another recovery period. I had really hoped this surgery would be my last for a long time. I should know by know that I never get what I hope for. Why even have any faith and any hope? Why look for the light at the end of the tunnel?
Now, here I sit, not in any real PAIN, just extreme discomfort. I cannot eat anything that will not go in my syringe. There are wires on the inside of my teeth that cut my tongue every time I move it so either I have to deal with the pain, burning and blood or I just do not drink anything. My teeth are very sensitive right now I am guessing from the wires so anything I do try to drink hurts them. Why would I cause myself PAIN? I am figuring I got about four weeks before I wither away. ALL of my PAIN is in my teeth right now. I am having muscle cramps on my neck but I cannot take anything for it so I just have to deal with it. I am not off to a Good recovery. The swelling is not too bad, about what I expected. The same with the bruising. Just not being able to take in anything to drink or eat is really bothering me. My tongue is very swollen, to the point it almost takes up all the space that is in there so right now, well since last night I cannot drink anything. I can't even swallow my own salvia. I have to lean forward and let it run out into a tissue so I do not choke on it. Yesterday morning I woke up choking and ended up vomiting all over myself. Nice way to wake up. Tomorrow, I am calling Shands and the wires have to come off one way or another. Either they remove them or I will. I am not going to continue to cause myself PAIN and torture. Life is too short to have to live like this. I have already lost eight years and now it seems in 2005 I will lose another year of my life.
My life that I worked so hard to build and shape into something that I wanted, something that made me Happy, something that I looked forward to. Now, what do I have? NOTHING! Five years after I wrote the following foreword and my life had gotten better, my PAIN had gotten better and in a matter of hours I have taken MAJOR steps backwards. No, Life is NOT fair and it NEVER will be. Where do I go from here? I can't go up any longer and I am as far down as I can be. I do not even know what I want any longer.
April 20, 2005; I thought if I tried to write maybe I could untangle all of the feelings tied up inside of me. I feel that I am still mourning the loss of my left joint. Having the arch bars in my mouth is holding me back from healing 100% and being able to move on. My PAIN is still very low. I would say a 2 maybe. And most of my discomfort is a direct result of the arch bars cutting the inside of my mouth open over and over. I bought some wax in the store but it is not the same as what Shands gave me and since I mainly need it at night, it melts in my mouth during the night so in the morning I have to pick it out of the metal and then try and brush and floss as much as I can out. I do not want to go through the process of having the implants put back in. I am done with surgery. No more. I really do not think I could handle another one. I would lose it and go over the edge to never return. As long as I have little to no PAIN and some function, then I will live with it. If something changes then I will have to deal with it at that time. Right now, I have to say NO. I have reached my point where I cannot continue to put myself through this and not get positive results.
April 29, 2005; Another trip to Gainesville, Florida but I did get my arch bars cut out this morning and I am not metal free except what little there is in my right jaw joint. For the time I will be going "joint less" on the left side and try to regain some of my life that I have lost to TMJ. A WHOLE year with NO SURGERIES!!!! I am so excited and really looking forward to the next twelve months. I have decided that I am not even going to talk about having my left joint put back in until January 2006 nor am I going to think about it. I want to live and not be worried about what the next day is going to be like. Just focus day by day. I do feel that my improved mental attitude has helped my PAIN level go down and right at this minute as I type this my PAIN is deal able and live able and that I can handle.
May 21, 2005; it seems my days are going good and livable then my TMJ just can not stand the fact that I am living and dealing so it has to remind me it is still there. I have learned that I can still feel PAIN! On Monday night (05/16/2005) my right side swelled really bad and the PAIN was horrid. My BP was too high (shocker) and my heart rate was too fast. Hummm could it be the PAIN!!!!!! My face stayed swollen for two days. I do not know what is up with this. But I do know that I can still feel PAIN and my PAIN can get beyond my control.
May 23, 2005; I cannot drink enough water. Not a good sign. I am not feeling right. Something is wrong and I am getting ready to find out what it is. I really hope I am just getting sick.
May 24, 2005; Well, now I know what it is. When I awoke this morning, my face felt like someone had slept on it. I went into the bathroom and almost fell down. I have a cyst in front of my right ear and it is dark purple almost black and the size of an English pea. PLEASE let me be dreaming!!!!!! I really thought my skin had just bruised from all the swelling until I touched it. It is a cyst. Right over my right joint. UGH!!!!!! I am so upset I cannot even think straight.
May 26, 2005; Cyst from HELL!!!!!!!!!!!!!!!!!!!!! Go AWAY!!!!!!!!
May 30; 2005; it is still there. It did drain and went away for about six hours then the burning and tearing sensation came back so I knew it was filling back up. It is causing me so much discomfort I am sick to my stomach. I want to vomit. My face is crawling so that means I am swelling. WHEN DOES IT STOP?
June 14, 2005; I refuse to go through this again. My cyst has gotten bigger. About the size of a grape now. It drains its self then fills right back up within minutes. It is as if the nasty sticky fluid that JUST drained from my head never happened. But oh I know it did. I have woken twice now in the mornings and my hair is stuck to my face and pillow, so I know it is draining while I sleep. It feels like my cheek bone is going to rip right through my skin. My ear is on fire. The PAIN shot through my face and ear a few hours ago and it was so intense my eyes welled up with tears, all the breath left my lungs and I got so dizzy I felt like I was going to pass out. I am not going backwards. I REFUSE!!! Fluid is leaking from everywhere. My cyst, scalp and ear. What the hell is going on? I REFUSE TO LIVE LIKE THIS AGAIN!!!!!!!!!!!!
June 17, 2005; I saw Dr. J today and we had the "talk" about what if my right implant has to be removed. And that is VERY simple. If my right side HAS to come out then I am 100% done. I WILL NEVER BE CUT ON AGAIN!!! I will DIE BEFORE I AM CUT ON AGAIN. If it was my life or surgery.. well that is a no brainier....my life. I use to say just one day with no PAIN. Well, I have yet to be PAIN-FREE but I know my PAIN level had to of dropped too at least a two maybe a low one. I will never know because of the drugs I was on, so I do not know if they were covering up the PAIN and I just thought it was less or if it really was lower than before. WHY does it have to come back? My body is just hell bent on getting these implants out one way or another. Why can't it just accept the implants as I have? I am so over all of this. I wanted to go back to work. I miss my job. Just to be able to work a 40-hour week. I want to scream. I want to yell. I need to release what is inside of me. WHY??????? WHY?????? WHY??????????
June 27, 2005; almost another month gone. Hurricane season has began for the 2005 year and we do not need another one. Ever. My cyst has dried up or the steroids have dried it up. I really cannot say what happened to it. The "pocket" is still there but there is nothing in it. All of the pressure I was feeling is gone as well as the pain. I came down with a sinus infection on Sunday so I have not been to work this week at all. I guess my body needed a rest. I have a tendency to push myself then I end up over doing it and have to pay the price of PAIN. I am trying to NOT think of what could happen if this cyst refuses to go away and just what damage it could d to my right jaw implant.
Having TMJ has consumed my life and everyone in my life. I feel my daughter has been dealt with more than a child should have to deal with. The following is an excerpt from her journal used with her permission: "My mom's TMJ has taken over our lives. Sometimes I don't think she knows it but I worry so much about her. I wake up in the morning and pray that she has not accidentally killed herself from the medicine she takes. She means so much to me. If something happened to her, I do not know what I would do."
Having severe TMJ in the year 2000 is the same as having cancer fifty or sixty years ago or being diagnosed with AIDS in the 1980's. The hurt and humiliation of going to a doctor for help and having them not want to touch you, to tell you to seek treatment elsewhere, to be shunned and not understood when you are in pain and in need of medical assistance.
We (severe TMJ suffers) go through every day of our lives praying money will be allotted to the study of TMJ so it may be properly studied and we can be given medical answers in place of educated guesses. Maybe a safe treatment will be discovered so our pain may be understood and made to be less. We could enjoy the pleasure of chewing our food, kissing and hugging our loved ones, laughing, smiling and having a long conversation with a loved one without pain and given some hope that maybe, just maybe, a cure will be found so other shall not need to suffer in the many ways we have.
I will try to up date my story every three to six months but at times it is physically impossible for me to do so but I will do my best. We have to learn from each other and continue to support each other. This is all we have. Be good to each other and find your own way to cope with this reality of our lives.
These are ALL pictures taken BEFORE any TMJ Surgery and all except ONE before I had ever heard the words TMJ! So in short this is what I looked like before I stared being cut on and no longer looked like me.
OKAY! All of the pictures were taken BEFORE my TMJ took over and BEFORE I had any surgery EXCEPT the five little ones on the bottom in middle and the two on the far right. Those two were right AFTER the surgery in June 2004. Shirlett
Okay, these are all pictures taken after I began having surgery due to my TMJ. I no longer look like me. My face has been reshaped and in my opinion deformed.
These were taken after the surgery on May 21, 2003
These were taken after the surgery on June 17, 2004
Aug.1, 2008
I wanted to share these pictures. the first one is what I looked like BEFORE 17 surgeries and TMJ took over my face, this picture was taken in February of 1997 and that summer was when my TMJ showed its ugly head in my life. My Mother, Father, Sisters and Children have watch this transformation over the last ten yeas. I really wish I could smile like that again! Right now as you will see in the last pictures I have no chin. My entire bottom, what is left has slid back so I have a MASSIVE over bite. I can close my mouth and stick my tongue out. NOT GOOD.
I have spoke with Dr. Marshall and Dr. Dolwick and both said they could get me back to the first picture. All so in the last pictures you will notice how swollen my throat is and that is just from the miss alignment of my bottom. I had my 3D CTSCAN on Friday and will see Dr. Dolwick on Friday June 13th....yes,yes,yes...I know...I hope to have a surgery date then. We are trying to get the insurance company to pay Dr. Marshall to remove my arch bars that are still in my mouth and of NO USE TO ME NOW!
Photo of me before any surgery! This is what I look like today! See how I have no chin now! Xray of my jaw and teeth.
Shirlett has had the Tmj Concept’s remove due to cyst forming in her jaw and the concept’s braking. The surgery she was going to have to put back the concepts have been cancelled. For some reason she is growing bone so they want to wait and see how much bone growth she has before putting back the Tmj Concept.
3D CTSCAN Taken in June 2008.
I want to THANK everyone for their support and for the additional LOVE my Family has given to me. I will keep everyone posted as we progress to surgery.
THANKS!
Shirlett
Up - Date July 24, 2009
Shirlett is due to have more surgery on Aug. 19, 2009. That depends on her heart. She is having trouble with her heart racing to fast, they are unable to find out what is causing all this. So Please Pray that she will not have to cancel this surgery!
Here are her 3D CT SCAN taken from March 11, 2009.
Hopefully Shirlett will finally have a good report after having these TMJ Concepts put it!
To chat with Shirlett please go to her myspace page!
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!
Shirlett My Family!
"Copyright Aug. 29 2001-2009"
This Tmj story cannot be reproduced, copied or altered without the consent of the writer.
Copyrighted By Angels United On TMJ!
Can not be placed on any other web site or any support groups without:
the written permission of ANGELS UNITED ON TMJ!
"2001 - 2009" By Angels United On TMJ!
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
This TMJD Support Group is intended to be a Safe Haven and provide a place where people with TMJ pain can come and offer and receive support from people who know what they are going through. This is not a medical group and we do not have medical degrees or medical backgrounds. However, with the variety of members in here, there is bound to be someone who has been there and done that and can answer your questions.
This group is in memory of Debbie Ward whom suffered from TMJD & died of unknown causes.
There are many types of members with TMJD. Some have been treated medically, some treated with various splint therapies and physical therapies as well as some with surgical treatments ranging from Arthroscopy to full jaw joint replacements. Everyone with any degree of TMJD or has a family member that deals with it is
welcome to join and offer and receive support that we all so badly need to get through each day with the pain we have to live with.
It is YOUR place to cry, scream or vent on the pain you are dealing with and how it is affecting your life and the lives of your loved ones. The group is MODERATED to avoid the unsolicited advertisements and spam. We are all in pain and do not need to have to deal with that too.
A Great Place to Share Information! This site is for sharing and is not a substitute for the advise of your physician/oral surgeon. Please consult with your health care professional.
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GOD BLESS YOU!
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