Not a Cure and How to Decide

[kgperry]

From reading this forum and doing research, I'm aware that there is no cure for Chiari or any of the related complications (EDS, Syrinx, etc.), and it seems that the complications cause more problems than patients had before the surgery. I also have read that having surgery sooner than later (when you have neuro symptoms/syrinx) can prevent permanent nerve damage.

So my question is what is a realistic expectation post-surgery (I know that's hard to answer) if you have EDS/other complications? What are the benefits to having surgery done before your symptoms are "really bad" vs. life changing and kind of manageable? :/

[selmaS]

  Hi no worries the dup was deleted......

Well yes, some can have post op complications and many times it is a related unDX'd condition that causes those issues...that and those that push to do too much too soon....that too can cause set  backs.

I had surgery and did so bcuz I had a CSF obstruction which could have lead to the formation of a syrinx which I did not yet have so I opted to have surgery to help prevent one from forming....and I am lucky my specialist knew to check me fot EDS and took precautions....I am doing better now then b4 surgery....that is not to say that the yrs post op were all rosy and  symptom free....but with each year that passes I have seen improvements.

Not having surgery if symptoms are bad (mine were) they will only get worse......surgery is done to slow progression.....as you said it is not a cure ...there is no cure for a malformed skull....or the conditions that come with it.....many times those that feel surgery did not help have an underlying condition they did not know about.....so rule out ALL conditions out b4 surgery is considered.

Post  op we need to be patient and not rush back to our lives to allow our bodies to heal...another difficult part of being post op is no Dr once the surgical scar is healed and the MRI shows all is well...even tho we may not feel we are ready to go solo.....find a good PCP that can help you thru this....or a local NL well informed on Chiari and ALL related conditions....take your time research Drs....good ones are out there, as well as some that will do it to have one more under their belt....not all  know how all these conditions are connected....finding the right Dr is  key !

[kgperry]

Accidentally hit twice. Sorry. :/