I am happy to report that my son has only had a couple of minor headaches since my post that were easily addressed with a couple of Advil. At this point they are considering his pseudomeningocele asymptomatic - so his surgeon doesn’t think a second surgery will be necessary. I am praying that his post surgery follow-up MRI in three weeks (three months post-surgery) shows that the pseudomeningocele is subsiding and that everything else looks good.
The decompression surgery was not an option for him. His Chiari was over 20mm, he had a syrinx, and was showing neurological symptoms - the risk of paralysis was there for him, too.
This whole experience has been a roller coaster. I think my son’s recovery has been pretty typical but it is a tough surgery - the first four weeks were difficult. His outcome has actually been really good. His presurgery symptoms have been alleviated (knock on wood) and we are not worrying about permanent neurological damage any more. Unfortunately I don’t think a lot of people with good outcomes post on boards like these so the vast majority of comments can be overwhelming to those looking for encouragement. A lot of folks who post on boards like these have had Chiari Malformations for a long time without knowing it (or knowing it but with surgeons that don’t recommend surgery) and end up suffering permanent issues when they finally have the surgery - after years of already suffering.
@Ericabak I would not mess around with waiting if you are having symptoms. If you trust your surgeon and he/she is recommending surgery I would do it. Recovery will be difficult - especially with kids - but know the risks of not having it done.
@v11 I am so sorry that your son’s symptoms have come back. That is my greatest fear and something I’ve heard about happening. I hope that you have a good surgeon that you trust who can advise you. I’ve read a lot about Chiari patients needing more than one surgery - which is hard to imagine after just getting through one with my son - but it seems like most eventually take care of it.
@Ashleyann I am so sorry that you needed a follow-up surgery. I hope that your pain starts to subside and that your follow-up surgery was your last! There are so many nerves involved I know it takes awhile for everything to settle down. So glad to hear that your surgery has helped you so much!