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Hi Hope66, I had the surgery for Arnold Chiari Malformation in 1999. The surgery described in your link is exactly what I had done. A portion of my skull in the occipital area was removed, to make room for the brain. At the time, my symptom was numbness in my left arm. I also had always had frequent headaches.
I was 39 years old at the time, and my 19 year old daughter had been diagnosed with MS a few months prior. She had a horrible presentation, waking up from a nap, unable to speak, unable to move her right arm or leg. She required months of rehab, and was put on Betaseron. No one in our family history had MS. My sister had been diagnosed with Arnold Chiari Malformation around the same time, and underwent the surgery.
I was a healthy 39 year old runner, and would notice my left arm got numb during my runs. With a daughter with MS, and a sister with ACM, I had an MRI. My brain showed a pronounced ACM, with no other abnormalities. I had a lesion on my C4, the radiologist described as demyelinating, consistent with MS. My daughter's neurologist saw me, said one lesion on the C4 did not equal MS. He said to go have the surgery for ACM, it was very unlikely that I had 2 neurological conditions.
So I had the surgery. I had a horrible post op recovery with new neurolocal symptoms, started dragging my left leg...a lot of other stuff. MRI's were repeated, and this time the brain was LIT UP WITH MS LESIONS.
I was told that surgery on the Central Nervous System was not a good idea for someone with underlying MS. The neuro put me on Betaseron, I went on to have optic neuritis, lost the vision in my left eye permanently, and a relapse every 3 or 4 months.
Looking back on what happened, I think having the ACM surgery caused my MS to flair... like throwing fuel on a fire....or possibly CAUSED my MS. (?)
People with ACM can have other arterial/venous malformations. It is genetic. For this reason, I believe that I probably have CCSVI. But I don't believe the ACM surgery would benefit CCSVI. I believe the surgery may have impaired the circulation from my brain, because of the congestion and inflammation related to the surgery, and possibly set off the chain reaction that caused the MS to flair. This is just my theory, but doctors who hear my story agree that that surgery would not be a good idea for someone with MS. I do not blame my neuro for sending me off to have the surgery....the pre op MRI showed NO MS BRAIN LESIONS, only the Chiari malformation.
So my daughter, my son and I have MS. My son's MRI's have shown a small ACM, but he has not undergone surgery. They are on Betaseron and Rebif, I am on Tysabri.
So I guess, my answer to the question of whether surgery for Chiari would help CCSVI, is NO. It does not help the circulation of the jugulars or IJV's, it only makes more space for the base of the brain. It may have even have IMPAIRED my circulation. I believe the connection between MS and ACM has to do with messed up veins....malformations.....CCSVI. I think venous malformation is the common denominator.
Sorry this was so long. I hope it was not too confusing, or hard to understand. We are an unusual family....MS, Arnold Chiari....
I am learning all I can and hope to be tested and treated someday. I know it won't reverse my permanent damage from MS, but may stop it from progressing.
BTW, I am on Tysabri and have been stable for almost 3 years, and feel great. But I want to be able to get off Tysabri someday, hopefully after having CCSVI treatment.
I have wanted to ask if there were other MS patients on here that also have ACM, but bringing up my story alway seemed so complicated. I would be interested to know if anyone else has both, or family with one or the other. Since you brought up Chiari, I thought I'd go ahead and put in my 2 cents...
Thanks,
Vii
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