Braydens Chiari Journey

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779days since
Braydens Cath Angio

Team Wendorff!!!! WWW.CARINGBRIDGE.ORG/VISIT/BRAYDENWENDORFF

   
THIS BALLOON IS IN MEMORY OF OUR GOOD FAMILY FRIEND NICHOLAS EDWARD CURRAN.  HE IS MY BOYS GUARDIAN ANGEL AND WATCHES OVER THEM EVERY MINUTE OF EVERY DAY!!!





We are the Wendorff family we have Dan (Daddy Wendorff), Amands (Mommy Wendorff), Skyler now 11, Brayden now 9, Zachary now 7, and Kami now 6, and in 2009 our world was wrecked by two words "chiari malformation" our then 4 year old came home from vpk complaining of an excruiating headache, so I called his dr and she trusts me enough to know when I call it's serious.  So we brought him in and she ordered a CT scan of his brain just to be safe.  She called two days later and told me she has news but to come to the office that it wasnt a tumor she just couldnt explain it over the phone.  We went in met with her she  explained chiari to the best of her knowledge and gave us a referral to a NS (for more infor on chiari please visit www.conquerchiari.org but it basically means your brain is to big for your skull to this day there is no cure for chiari) he did an mri from braydens brain to his tail bone and told us surgery was an option but he wanted to wait a little longer to see if his symptoms progrrssed. Wel they did and on June 9th, 2010 my sweet then 6yr old little boy underwent his 1st brain surgery.  Surgery is not a cure it is just a temporary relief in symptoms and sometimes works for years and sometimes only for months.  Well in Braydens case it only months.  So on Sept 15,2010 he underwent his second brain surgery.  He had a terrible very long recovery he started making amazing progress.  Though we had started noticing symptoms in our oldest son Skyler.  On Dec28th 2010 Skyler was scheduled for an MRI to check for chiari also (it can be genetic) Brayden joined us at the hospital that day to offer moral support fot Skyler but while waiting for the MRI Brayden suffered a stroke in the MRI suite of the hospital.  Brayden had been demonstrating stroke like sumptoms for a few days ever time I took him to the er he was better and was told his body was still healing from surgery back in September.   Finally on this day I said no im not going home until you figure out what is going on my son . So they ran extensive testing and sent us to Boston for a second opinion because they were stumped here locally.  During this time we did find out indeed Skyler also had chiari but was a watch and wait case.  Braydens radiolgy scans were sent all over for drs to review but no one could figure things out until his scans made it to a dr at the mayo clinic Named Ricardo Hanel (hes now at Lyerly Ns at Baptist hospital.) He diagnosed Brayden with a vascular disease of the brain called  moyamoya disease and in June of 2011 Brayden underwent brain surgery #3%.  Rewind just a little though because in the midst of all of this our 3rd son Zachary was diagnosed with chiari also and underwent surgery for chiari decompression in May of 2011 7 days exactly before Braydens Moyamoya surgery.  During all of this I (mommy) was suffering from headaches and were just stress.  After Braydens Moyamoya surgery he developed a severe spinal fluid leak on the side of his head that would not resolve. It was about the size of an orange.  They decided the best course of action was a fluid draining shunt in his spine. It worked great for a few days but then the fluid began draining out of the incision in his back and his body was rejecting the shunt. So 7 days after insertion they hadnto remove it.  
When they did the surgery for the moyamoya disease they inserted what was supposed to be a disolvable plate in the left side of hisbhead that bone was supposed to grow over.  But, in true Brayden fashion it crumbled into a huge painful knot that had be replaced by a titanium plate in 2012.  Well in 2012 brayden just kept having more pain and the drs were just baffled.  His NS relocated to Augusta Ga and we decided to keep care with him as he had stood by our side and always listened and never treated us like we were burdens or just patients he would always say youre boys are like my boys I wouldnt do anything to them something I wouldnt let someone do to my boys.  Though the travel costs are huge burden the drs in Georgia are worth every dime.  In March of 2013 Brayden had be4b declining again for months and Dr. Heger and his team decided Brayden needed a spinal tap or otherwise known as a lumbar puncturè to check the amount of fluid on his brain.  It was way to high so they decided and to put a shunt in his brain (brain durgery #5)to relieve some of the pressure. This condition is known as pseudotumor cerebri. The shunt was inserted in his brain and drains through a tube down into his stomach and is absorbed into his urine. In true Brayden fashion his stomach did not like the tubing so they had to go in 4 times to get it into a position that was not doubling him over in pain.  By this time it was almost May and we had been in Ga since February off and on.  
I began to get ill and they once again until September told me it was stress and I needed to take care of myself.  Finally I convinced them to do an mri and guess what I have chiari and pseudotumor cerebri as well.  My pseudotumor was very drastic and I had to have surgery as soon as possible due to the fact I was on the verge of losing my vision. BUT our son Skylers chiari had gotten worse and his surgery had to come first so on Dec 11th 2013 he underwent chiari decompression in Ga by Dr. Ian M. Heger. At this time he has decompressed all of our chiari children.   Now back to mom, on Dec 31st 2013 I underwent a VP shunt to the right side of my brain.  I felt better for a few weeks but began to decline again. My then Dr. decided I was to complicated for him due to the childrens past med history and sent me on the journey of finding a new dr. Thankfully I found an honest dr and he has told me that the one shunt I have in my brain isnt enough and I will now need a second one.  This surgery will occcur sometime mid next week or on the 28th.  A few months after this coming surgery I will need a chiari decompression surgery.  We have health insurance that has a high ded plan and my husband  has been employed by the same company for 14 years.  As you can imagine he had exhausted all of his leave time and and when he takes off he has to borrow time from the sick leave bank.  Though, he is almost maxed out on borrowed time. He will need to be off with me for 6 to 12 weeks and we are almost sure they will not let him borrow that much time. So at this time we are seeking donations that will get us through until he can return to work. 


****New Update, On Monday March 4th, 2013 Brayden was admitted to Wolfson Children's Hospital for a headache that he had for over a week.  We stayed in the hospital in Jacksonville for almost 2 weeks and we were then transferred to the Children's Hospital of Ga in Augusta Ga on March 15th, 2013 so that Braydens specialists could take over his care.  They monitored him for several days and then they did a Spinal Tap and his opening  pressures were to high, so on Monday March 25th, Brayden underwent his 5th brain surgery to insert a VP shunt into the ventricle of his brain.  What we thought would be a 30 min to an hour procedure turned into an all day affair and 2 days in ICU.  They had trouble during the surgery and it caused some trauma issues in his brain due a combination of things with his other issues and when he woke up he couldn't move the left side of his body.  He has made tremendous progress since waking up and being moved from ICU.  We thought he would have to go to inpatient rehab but got the news today 4/3/13 that we just need extensive  out patient therapies at home for a while.  We are going home with a walker, wheelchair, shower chair, a handicap pass.  WOW this has been such a whirlwind trip and I have to give a HUGE shout out to the Richmond County Sheriffs Office and their wives for stepping up and helping our family when we needed it the most.  They have been exceptional to our family and we are so very grateful.  Brayden still has a long ways to go and needs lots of prayers for a full recovery.  It has been a HUGE transition for our family as you can imagine so we appreciate all the prayers we can get.  Our wepay donation page is still up as you can imagine this has all been very expensive please visit www.wepay.com/donations/team-wendorff if you would like to help out with this costly situation.  Big thanks to Dr. Ian Heger for putting up with my constant badgering and being that parent you want to strangle and listening to my instincts and always being there for our family!!  We can never give you enough thanks and gratitude for your care and compassion towards our children. ****




Brayden has once again stumped the drs here in Florida so we were sent to Ga. for a second opinion.  She found some new issues and needs to see Brayden again this week and also the week of the 25th, and then valentines day 2013.  If you can please spread the word that we need help with financing these trips that would be great!!  Please continue to keep Brayden  in your prayers!!!  Thank you from the bottom of my heart.  Here is the link that you can donate to help us make this happen 

https://www.wepay.com/donations/team-wendorff




This page was STARTED for me to tell the story of my 8 yr old son Brayden who is battling Arnold Chiari Malformation, well life took a little turn and now it tells the story of my 3 SONS 9,8,and 5 battling Arnold Chiari Malformation!!!  Oh and my 8 yr old also  battles with pediatric stroke, and MoyaMoya disease. So hold onto to your seats kids its a long ride to the middle of NOWHERE!!
I will take you back to 2009 when a then 5 yr old Brayden came home from school and fell to the floor crying with a headache.  I called the Dr. as he had never had a headache before and I was told kids get headaches and just to watch him.  Well this continued on for several days so she ordered a CT Scan.  She called the next day and asked me to come over to her office we needed to talk and to bring my husband.  She assured me it was not a tumor but it was to much to explain on the phone.  So we drove to her office and we heard the words CHIARI MALFORMATION!!!  HUH??  What is a Chiari Malformation??  We were explained what it was and we were still unclear so I like every mom in America went home to google my best friend.  We were referred to a Neurosurgeon and then referred for a series of MRIS.  I read and read and read so much to the point my pediatrician told me to stop reading and start praying!!  Well when we got the results from all the tests we were told he was what they considered Asymptomatic and we were referred to a neurologist for further following.  The NS said at that time he didnt think Brayden would ever be a candidate for surgery.  I was disappointed and relieved at the same time (boy if I knew then what I know now).  So,  approx 6 to 8 mos goes by and Brayden has started to tell me all the time that his arms and legs are asleep.  His head is hurting constantly and he just cant make it through the day without some type of pain.  The Neurologist orders a new MRI and BAM his chiari has gone from 8mms to 18mms and he has no CSF flow going to his brain!  So we were referred back to the Neurosurgeon who by the way is Dr. Ian Heger from Pediatric Neurosurgery out of Baptist/Wolfsons in Jacksonville, Florida. ( I will tell you how much I adore him in a minute!! LOL)  So we see him the Thurs after Memorial day of 2010 and he tells us Brayden needs surgery and he needs it like next week.  June 9th, 2010 was the day Brayden became a brain surgery survivor.  They went in and cut out a portion of his skull and then his 1st vertabrae, they nicked his dura (the protective layering of the brain) and it made his CSF flow come to a trickle.  Dr. Heger warned me that he had done all he could do for that day and he MAY have to go back in at another time.  Who knew that next time would be 3 mos and 6 days away!!! Sept 15th 2010, Brayden survived his 2nd brain surgery.  This time the cut the dura in half and placed a duragraft to help his CSF flow.  They also cauterized his cerebellum during this surgery to help with re herniation.  Dr. Heger warned us about Sterile/Aseptic/Chemical menigitis (pick a name ive heard it called them all) but he figured it would happen in about 2 weeks.  NOT my son he goes big or goes home so he got it immediately!!!  We spent a miserable 10 days in the PICU and then another 7 on the floor.  Everyday Dr. Heger would tell me ok in the morning im coming into a new kid ok!!! I would laugh at him!!!  See him and I we have a love hate relationship and im sure the feeling is mutual on both sides hahahaahaa.  I know he reads my stuff now so I can pick jokes on him hehe...(shoulda never told me  your secrets haha)  anyways finally after some steroids he did come back to a new kid and we started the road to recovery from chiari malformation!  Well at least we thought.  Now lets jump forward to Dec 7th, 2010.  We go see Dr. Heger for our 3 mos follow up and Brayden is doing SUPER!!! Im telling DR H how pleased I am and how much I adore him BUT I hope we only could meet once a year.  (boy was I wrong, i think the man should be on my christmas card list! I see him so much now)  Well the NEXT day Braydens schoool called me and said he had a VERY VERY bad headache and he was slurring his words.  I come to get him ASAP and I take him to the ER and they admit us for observation we see a NEW neurologist because the one we had been seeing doesn't come to the hospital.  So we tell them our history and they say oh well I think he has complex migraines, and release us the next day.  Well 2 days later same thing happens, we come back and they do a CT this time and nothing shows on the CT so they send us home the next day.  WELL the next day he started to slurr very badly his right arm went limp and we came BACK once again finally mama bear came out and I DEMANDED an MRI and an EEG I may not be the brightest in the world but im not completely stupid I know the signs of a stroke!!!  So they agreed though they thought it was a waste of time.  Now mind you Dr. H is no where in this mix its all a new team of neurologists who we just met.  Well we get the EEG and they said it showed slowness on the left side of the brain, these dr's told me that could or could not mean something so we would proceed with the MRI the next day.  So we go for the MRI and 2 hrs into it walks my pediatrician and its the middle of a work day so im freaking!!!  They called her bless her heart I love you Dr. Valdes, and asked her to come and break the news to me that Brayden had suffered a stroke on the left side of his brain!  WOW I already could have told you that but it still hurts like hell!!!! So they start this whole cardiology work up, infectiouse disease, hematology, rheumatology, felt like every dr in the hospital came in.  They were all just puzzled!!!  No one could figure out why my son had suffered this stroke!!  Im talking drs all over adult and peds looked at his films and they were baffled.  We spent almost all of Dec in the hospital and were released Jan 2nd 2011.  Well we were released on Christmas day but on Dec 28th the same day my oldest son Skyler was having his MRI Brayden suffered another stroke like event so we were re-admitted and further imaging showed he had not 1 but 2 clogged arteries in his brain!!!!  FOR REAL!!!  WHERE THE HECK DID THIS COME FROM!!!! Well on Dec 28th I was told Skyler had chiari also and we would be seeing Dr. Heger after the first of the year to discuss our options.  See Skyler REALLY is asymptomatic, I wouldn't have ever thought he had chiari except all the reading I did and I noticed some secondary symptoms he was having.  So Skyler is DEF not a candidate for surgery PRAISE JESUS and I hope he stays that way!!!!.....So back to December lol they are still flustered with Brayden and have asked me to seek out of state opinion.   SOOO with the help of our amazing community we head out to Boston to see the Stroke dr's there and we loved them.  However they are soo far away we just cant keep their treatment plan in place for financial reasons.  So when we came home we had new images done in March and were told there was no change to the arteries and to stop the blood thinner injections and start on aspirin and that he was clinically stable.  HAHAAHAAA 2 weeks later they called and said JUST KIDDING we had a mayo dr look at the films and he thinks its worse and that Brayden has MoyaMoya disease!  WHAT???  ARE U FREAKING SERIOUS???  I call up my beloved Dr. Heger and am full of questions because WTH is MoyaMoya disease and why were they calling in another Neurosurgeon when we already had the best damn one money could buy!!!  He explained everything to me and I was well I won't say ok but at least I understood things better and realized we needed to meet the GREAT Dr. Ricardo Hanel.  So we met with him, he ran some tests and suggested Brayden receive what was called an EDAS...don't ask me what it means cause im still puzzeled by the MoyaMoya thing.  SO on May, 26th, 2012 just 253 days after we thought he would be brain surgery free forever Dr. Heger and Dr. Hanel (who I adore too) went in and laid his temporal artery to his brain on the left side in hopes of generating some new vessels.  Oh I almost forgot in the end of April early May son #3 Zachary has been diagnosed with chiari malformation AND syringomelia so off to Dr. Heger we are again. He says Zach needs surgery and he needs it soon that hes 14.6 mms herniated and has a syrinx in his spine so what the heck lets do them back to back.  June 4th, Zachary underwent his 1st and FINGERS CROSSED only decompression.  I asked Dr. Heger just to do everything the first time with Zach that he did the 2nd time to Brayden!!!!  Worked like a charm sooo far at least.  Zach is on the road to recovery and home in a week and a few days.  Braydens head has a collection of CSF from his EDAS and im bother poor Dr Heger day and night about it.  They finally decide that if it doesn't drain by today which is July 13th, 2012 they would put a temporary (hopefully) lp shunt in to drain it!!!  I am pleased to report there is no longer a large lump on the side of his head.  Im not pleased to report on his pain levels right now but hopefully they will resolve by laying flat and lots of rest!!!!  I can not thank Dr. Heger, the OR team, the
PICU nurses, and dr's, and the 6th floor nurses at WOLFSONS childrens hospital enough for everything they have done for my family!!!!  They are like my family now!  Which is sad in some ways but at least I know we are well taken care of when we come here!!!!  As you can imagine this has all been VERY financially draining on our family so there is a donate button for paypal on this page if you are compelled to donate to our family. There is also a donation account at BBVA Compass Bank in the name of Brayden Wendorff.  We do  have insurance but our deductible is 2100 dollars and we have to pay 100% of everything until that is met, not to mention the countless trips to the drs office, the umpteen million hospital stays, the things just keep mounting up.  I hope that this page does one thing and that helps SOMEONE with chiari reading this know they ARE NOT ALONE!!!!!!  I felt that way until I finally found some local support I still have not met someone who has used Dr. Heger but I have a lot of friends who have used his amazing partner Dr. Aldana.  See Dr. Heger moved here from Hollywood, Fl the month before Braydens chiari journey began.  IF THAT DOESN't TELL you that we were meant to be his patient I don't know what does. :)  
Well it's been quite a while since I have added an update to the site which mean things have been fairly quiet.  Brayden had some complications with his surgeries from July and had some repairs done on it 2 weeks ago, and he has a cath angio gram on May 24th, 2012.  The point of this is to check and see if the surgery they did in May of last year was successful and he is building new vessels where the old vessels were occulded.  So please say a prayer that Brayden makes this through this procedure safely and he does indeed have some new vessels sprouting!!  I now want to share with you about an amazing once in a lifetime experience our family got to partake in today!!
Today my family received a once in a lifetime opportunity, we were blessed with meeting PRO Golfer JB Holmes out at TPC Sawgrass.  You see when I found out he was coming to town I went on a mama on a mission spree (just short of stalking lol) , I emailed his agent, Dan Hicken, Wolfson Childrens Hospital, I even tweeted to JB himsel, I was going to get up close some how lol!!!  After a few weeks of back and forth we were given thr news that JB had agreed to meet with us.  When I heard this news I had no idea to what extent we were going to be with him, I thoguht maybe we would say hey and get some autographs and part ways.  That was just the opposites, We met JB on hole 17 and stood right beside him as he did 17, then followed with him and his crew onto 18 him and I walked arm and arm and he squeezed me tight and told me he had no idea how I handled chiari malformation as a parent and he admired me so much, (that brought tears to my eyes) also in between 17 and 18 while signing autographs a lady came up to Brayden and asked him for his autograph, in shock he said I don't have an autograph lol. so I told him just to sign his name, she told him he was braver than any golfer out there!!  That made him smile from ear to ear and feel like a super star, at the end of 18 after they were all done. JB stopped with the boys and they putted some golf balls, and he gave them some pointers, lots of hugs, and high fives, We then went into the media building and took some pictures with some photogs, and did a few media interviews here is a link to one 
http://espn.go.com/golf/story/_/id/7907010/jb-holmes-inspires-young-family-players-championship .  ESPN did an amazing job on this article!!  JB told us all about his chiari experience and his surgeries and how he tries not to think about it and he let his family do the worrying lol!  JB was such an awesome guy and I am so thankful he took this hour and a half out of the day beore a HUGE tournament!!  If you are looking for someone to root for someone in the TPC this week JB Holmes is your guy.  Though this opportunity for my children and family this was a HUGE day for Chiari AWARENESS!!!  Sure my kids are cute heehe, but having a pro golfer talk about chiari malformation to SEVERAL news stations about chiari makes me one happy MAMA!!!!  Thank you so very much to EVERYONE who made this possible, especially Sarah Stillwell with Wolfson Childrens Hospital!!!  

Tomorrow we return to TPC Sawgrass to represent Wolfson childrens hospital as part of the Wolfson 55, which should be a super fun day.  After that Brayden has his 2wk follow up from surgery, then the 24th he has his one year cath angiogram to check his vessels in his brain.  Please pray for a good report!!!

If  you or your child have chiari and would like to contact us I can be reached at Amanda.Wendorff@gmail.com or even if you would just like to send us a little note of encouraging words we appreciate those too.
   
 
 
 

 
If you would like more info on Chiari Malformation you can go to conquerchiari.org, or just try googling Chiari Malformation type I.  I keep a journal at www.caringbridge.org/visit/braydenwendorff, . You can donate by paypal or Compass bank, click here for more information on Donating to Brayden Wendorff.

 
Please feel free to email any questions you may have to amanda.wendorff@gmail.com
 
This is Braydens scar immediately post-op on June 9th, 2010.
 
 
                   This is Braydens scar from his Sept 15th 2010 surgery!

       

 

Please tell someone, anyone who will listen either about this website or about Chiari Malformation at least one time this month.