I am curious, those of you who have had surgery for CM1 what are some of the side effects you are or have dealt with? My Neurologist was telling me about one patient who after surgery anytime she hits a bump in the road she becomes disoriented. So I am just trying to find out what other side effects there are. Thank you all for you help!
First it all depends on what is going on with that patient...she /he may have cerviocranial instability and that could be y the bumps affect them like that...and this is y getting all tests run b4 u consider surgery as a possible option ...u need to know if u have a CSF obstruction....sleep apnea, a syrinx, tethered cord, ehlers-danlos..PTC....disk issues...as they can affect how u feel and heal!!!
Plus u want a true chiari specialist.....but, it is not a far stretch to have set backs post op or develop a condition not found b4 surgery...such as PTC, epilepsy, seizures....we all are different and our bodies may respond to the surgery and meds differently.
I had surgery and did not have a side effect or reaction other then to the morphine in ICU.....
May I ask u what r ur symptoms u r considering surgery?...was it suggested by a NS?
Another aspect that you really must take into account with a question like this is that be it the compression, csf blockage, nerve blockage or damage or other ligament and muscle instability as well as other issues in our brain... Each CM patient's case 'is' going to be slightly different in most cases due to their individual physiology. Those differences IMHO can lead to 'very' different outcomes as well as side effects.
Selma asks some very good questions here. Specifically the last two.
Thank you so much for all your info. I have been dealing with Chronic Severe headaches, which all this time I thought were migraines. For the last 7 yrs. I have been seeing my Neurologist for the last 2 years. These headaches have been debilitatling to say the least. They are constant and I have found nothing that relieves them. It wasnt until I was in a car accident this past Decemeber that after having a more current CT scan did he find the CM1. He informed me that surgery would be the only thing to relieve my pain, but he scared me alot with the risks of surgery. So that is why I am just trying to get more information on how ppl have done after the surgery. The thought of the surgery itself scares me. I greatly appreciate everyones help and information.
Well from also having this dx and doing research, I would suggest u do the same...educate urself on this condition as much as u can...and see a few NS's that r of the same caliber but should be true chiari specialists this will help ur recovery post op.
I had surgery almost 3 yrs ago and would do it again.....bcuz I know if I had not I would have continued to have the same issues and put my health at further risk.
My wife had the surgery and the side effects got worse she cannot do anything without shortness of breath, has seizures sometimes 1 to 4 times a day, her shake like she has parkensons, hands clench up in a ball and she doesn't realize it,facial expressions or makes faces,loss of her balance,very suicidal, dizziness, loss of balance, ect.ect. I swear if I would of known this would of happen to her I never would of told her to do the surgery and no one has any answers of how to fix what they did wrong smh
The side effects and issues your wife is having is not due to having surgery, but could possibly be due to a related condition to Chiari...OR the surgeon was not aware of ALL the conditions and did not take precautions....
Do you know what all was done and ruled out.
I had surgery 6.5 yrs ago and I am doing so much better then b4 surgery....no regrets here....but I did have a Chiari specialist and had related conditions ruled out and precautions were taken .....
When was your wife's surgery and when was her last MRI?
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