Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
I've heard that a person can become paralyzed if the syrinx is left untreated. I worry about it a lot.
My ACM and syrinx were found 5 years ago by MRI after suffering several unexplainable falls (drop attacks). That is the only MRI I've had since. The neurosurgeon I had was against decompression surgery for my 5mm herniation as he did not think the ACM was causing the falls. He said that drop attacks were not a symptom of Chiari.
I am now falling a couple times a day, suffering headaches, neck pain, eye pain, back pain, swallowing difficulties, painful tingling and shocking sensations throughout my body and horrible concentration and memory problems on a regular basis.
But even with all this, if it weren't for the drop attacks and risk of paralysis, I would not be considering surgery. I don't really want the surgery.
Is paralysis really a big issue with the syrinx. How great are one's chances of becoming paralyzed from the syrinx. I would hate myself if I became paralyzed after choosing not to have the surgery, but I would also regret having the surgery if it's not really likely that I would become paralyzed without it.
Any advice from personal or professional experience would be appreciated.
My ACM and syrinx were found 5 years ago by MRI after suffering several unexplainable falls (drop attacks). That is the only MRI I've had since. The neurosurgeon I had was against decompression surgery for my 5mm herniation as he did not think the ACM was causing the falls. He said that drop attacks were not a symptom of Chiari.
I am now falling a couple times a day, suffering headaches, neck pain, eye pain, back pain, swallowing difficulties, painful tingling and shocking sensations throughout my body and horrible concentration and memory problems on a regular basis.
But even with all this, if it weren't for the drop attacks and risk of paralysis, I would not be considering surgery. I don't really want the surgery.
Is paralysis really a big issue with the syrinx. How great are one's chances of becoming paralyzed from the syrinx. I would hate myself if I became paralyzed after choosing not to have the surgery, but I would also regret having the surgery if it's not really likely that I would become paralyzed without it.
Any advice from personal or professional experience would be appreciated.
I have been to 6 or so doctors and they have all said that if I develop a syrinx that they would want to do surgery as soon as possible.
I think it would in your best interest to seek out a second opinion especially since you haven't had an MRI in such a long time.
No one wants to have surgery, but it could improve your quality of life and stop any further damage to your body
Best of luck
I think you're both right. I am currently looking for a chiari specialist in my area, but haven't found one. On Monday I'm going to check on a couple of the neurosurgeons I came across on a list from a chiari support group.
Good luck to you all.
p.s. where do you live? maybe someone on here can recommend someone...
My syrinx was small too.But my ACM herniation was 7mm, not 5mm as stated earlier (just looked over my results again).
I live in Ohio. Finding the surgeon is not very easy. After the disappointing visit with the first neurosurgeon, I am definitely a lot more critical in picking the next one.
Wow, you're only three weeks post-op! I know you said it wasn't so bad, but how are things going right now? Good luck to you.
And thanks for the advice.
Toya
I think you should defintely go see a neurologist and have another MRI taken. I had my surgery done in August of this year, as bad as it sounds its not so bad. I had my surgery done because they told me eventually down the road paralysis would occur. I had syrinx and they also had to straighten out my spine at the same time. As bad as it sounds the surgery is necessary because it will only get worse and the consequences down the road will be far worse. The surgery is a breeze and the recovery period is slow but you do end up feeling better and it will be the best decision you ever make. I still get headaches but it was necessary, good luck i hope it goes well.
I have heard good things about the cleveland clinic.. but i dont really know much about it.. anyway the first week after the surgery is pretty rough, well.. really rough, it was for me anyway.. vomiting (as it seems with almost everyone) was HORRIBLE. two days of vomiting and ice chips.. horrible.. and the pain right after surgery until about day three was very bad.. and the hospital had a lot of trouble getting me on effective pain meds... but once they got me on a good combo (which I am now weaning off of) I felt 90% better.) Aside from those two issues... I was very well taken care of in the ICU... and I was extremely sore, but was facebooking from my phone two days after surgery.
At this point, I still have neck pain (i think it's mostly from healing).. but my pressure headaches are gone.. I do get headaches but nothing like the ones I used to get.. I have balance issues that have not improved, but hopefully PT will help with that.. (also my meds may be affecting my balance).. Even at this point, the good definitely outweighs the bad..
Praying that you find and excellent surgeon. God Bless.
Katie
Thank you so much. Good luck. God bless!