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I was a Medical Transcriptionist when I started to have right arm weakness. My arm just stopped working, and this made it impossible to type. I had to quit work, and then I began the long journey of trying to find a diagnosis. It took the doctors 8 months until they ran an MRI which is when they found my Chiari and Syrinx. I was herniated 3 to 4 mm, which I guess is considered 'borderline' by some doctors. They told me to 'wait and see' and just run another MRI in 6 months. In the meantime, I stayed in a therapy which provided 'forceful neck manipulations'. It was during the next 8 months of this treatment where my tonsils descended rapidly. By the time I found a Chiari specialist, Dr. Barth Green at the University of Miami, I had partial paralysis of both arms and legs, the beginning of neurogenic bladder (loss of bladder control), and problems breathing. My cerebellar tonsil descension had gone from 3-4 mm to 15 -20 mm, and my brainstem was being squeezed as well - all this in just 8 months! There was no decision for me whether to have surgery or not - it was not optional! At least now I was a 'classic' Chiari and they would operate on me. If they had just done so when I was 'only' 3-4 mm. So much nerve damage could have been prevented.
Interestingly, once they did open me up during surgery they found a dural leak. My dural tissue was torn through and my CSF was leaking out of it. This did not show up on MRI beforehand, and was something they found once they went in. So I had a dural leak not from the surgery, but just from this therapy alone before surgery. This is the reason why its so very important to have a qualified neurosurgeon determine how much pressure is going on with your Chiari (hopefully a WACMA or ASAP recommended neurosurgeon).
Because of all the nerve damage I suffered, recovery for me was a long, drawn out process. It required a lot of patience. It wasn't until 2 years after surgery that I could say surgery was a success. It also took this long for my pain to go away. I still have residual problems because of the nerve damage, but there is no doubt that surgery was a resounding success as it saved me from a wheelchair, or worse. It gave me a life back. I sure don't mean to scare others, as I've found out I'm one of the Chiari 'worst case' stories because of this treatment. But I do want to share my story in the hope that it can prevent someone else from going down this road. I wanted to share what definitely made me better or worse, and the fact that there is hope. Some people need longer to heal, so if you're one of those people, hang in there. Sometimes this surgery cannot be immediately classified as a success until the nerves have had time to heal.
Chiari seems to be partly genetic and partly worsened by trauma. I was worsened by what I call my 3 c's - car accident (minor), computer work (long days with no breaks and heavy arm use), and cervical adjustments. So before or after surgery, please be careful out there.
Thanks for listening, Barbara
My name is Gail Garrett and it will be a year this month, August since I had my decompression surgery for Arnold Chiari Malformation. I had it done here at Emory University Hospital in Atlanta by a wonderful surgeon, Dr. Daniel Barrow. Like many of you, I was incorrectly diagnosed years ago with Fibromylagia. I have a great primary care Dr. whom refused to give up on me and kept searching for what could be the 'real' problem. I had reached the point where I could not keep my balance, my vision was impaired, I could not sit for more than 20-30 minutes without my legs going completely numb. The daily pain in my limbs was agonizing. I could endure everything until the horrible migraine headaches started.
I then had a MRI, ( I had to ask for the MRI) and was referred to a neurosurgery group - the first neurosurgeon I went to here in Atlanta, (not associated with Emory Hospital)!! - told me that I had Arnold Chiari Malformation - he then sent me for a 2nd MRI with a "flow study" so they could see how the fluids flowed to and from my brain. After the 2nd MRI, I went back to his office and the 1st neurosurgeon had left Atlanta. I then saw his partner, his partner agreed that I had Arnold Chiari Malformation, but he did not believe in surgery for it, he did not believe surgery worked and "he did not do surgery based off of a TV show!!" Do you remember when 20/20 did a story on decompression surgery that was being done around the country? That was what this neurosurgeon was talking about, that 20/20 show, then he pretty much told me to leave his office. I did something I have never done before, I put my hand on his arm and I begged him for help, I told him about the horrible pain every day and if he could not help me, did he know someone who could??
He suggested I go to Birmingham, AL - they were doing that kind of surgery there. So, following the insurance guidelines, I went back to my primary care Dr. to get a referral to go to Birmingham. Well..no way was my insurance going to pay for any kind of out of town referral/surgery. My husband found out from talking to a local radiologist, that the neurosurgery group at Emory University Hospital did decompression surgery. I then went to Emory and after spending just a few minutes with me, Dr. Barrow told me he could help me and that I should get the decompression surgery done ASAP. He told me he knew I needed the surgery just by the way I walked! I had started this process the 1st week of May 2000 when I had my 1st MRI and had my decompression surgery on August 31, 2000 - So don't give up, try to find a good neurosurgeon who will help you! Dr. Barrow told me after the surgery that I had come extremely close to needing a shunt installed and that I would probably be in a wheelchair right now if I had not had the surgery done.
I have a new life! - I got up the day after surgery and could walk toe to toe without falling down! I had to learn to stand up and sit up straight though as I had sat, stood and walked hunched over for years. I now run and play sports. My friends, family and coworkers tell me I am a new person, I tried never to be depressed or angry, but they all knew I was in pain and felt bad for me. I know this is a long letter, but I want everyone to know that there is hope and don't give up, don't let a Doctor intimidate you, find someone whom will help you and above all, your prayers and the prayers of those who love you, makes all the difference in the world.
My e-mail address is: firstname.lastname@example.org
My name is Cyndy Bell and I'm 32 years old. I began having really weird and unrelated symptoms of headaches, blackouts, nauseau, dizziness, and blood pressure drops in 1996. They ran my first MRI but nothing was reported out of the ordinary. Finally my neurologist did a spinal tap (my first of sixty-one) and found out that my spinal pressures were too high. (should be 18 or less...mine were 30!) He drained it and I felt better for about 24 hours and then my symptoms returned and persisted. He continued to do taps and drain the excess fluid but each time he did the pressures were just getting higher and higher. Although I didn't fit the overweight profile for Pseudotumor Cerebri, that's all they could come up with for a diagnosis. In June of 1997 they inserted my first Lumboperitoneal shunt. It lasted for about eight weeks and then broke. This was pretty much the picture of my life until April of 2000...shunts replaced every 10-12 weeks, bi-weekly spinal taps, and NO LIFE. My doctor pulled me from my teaching career and I basically sat at home too sick to do anything else. They sent me to Emory Univ. and Vanderbilt but I was only labeled as a "psych case" and sent back home. Finally after a lot of prayer and hope, I found my answer one night on the internet.
I found an article that listed all of my dysautonomic symptoms along with my neurological symptoms all tied together. I read about Chiari and how sometimes it's missed on MRI's if they aren't looking for it, or haven't done the correct films. I called my neurologist who ordered a new MRI....and BOOM there it was plain as day on the cervical spine films...a 12mm ACM I. My LP shunt was removed immediately due to the injury it was causing. In July, I went to The Chicago Institute for Neurosurgery and Neuroresearch and saw Dr. Gail Rousseau. It was a miracle trip...My doctor called to get the appointment on July 1st and I was sitting in her office on July 11th. I know that it has taken many people 6-12 months to get an appt at CINN. I was in surgery the next week, and left the hospital five days later. I woke up in SICU thinking more clearly than I had in four years!!! I really didn't even have a lot of post-op surgical pain...just a little neck discomfort. I just passed my year anniversary a few weeks ago and I've been TOTALLY symptom free since my surgery!!! Praise the Lord. After 14 surgeries, and 125 as an inpatient in the last five years...I'm now only returning to the hospital to deliver my first child next April. My husband and I are thrilled and thankful for Dr. Rousseau and all the other doctors who supported me and stuck it out with me until the mystery was solved.
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