My 16 year old son had decompression surgery on August 2. They discovered that he had a pseudomeningocele about four weeks after his surgery after a week of pretty severe throbbing headache. Interestingly, the headaches were much better by the time he had the MRI but the pseudomeningocele was discovered nonetheless.
He’s now two months out of surgery. He’s been doing really well for the past three weeks, but just started experiencing a chiari-like headache that has not really subsided after four full days. Advil helps but not a lot. I’ll be reaching out to his surgeon tomorrow but was wondering how many of you or your loved ones experienced a pseudomeningocele after surgery. Was there a follow-up surgery to repair it? How are you (they) doing now? Any information anyone has would be really appreciated!
I’m so sorry to hear what’s going on with your son. I’m debating having surgery right now mine is at 12 mm I just can’t afford to be out of work for one and for two if something goes wrong I’m all my kids have so I’m suffering through all my symptoms right now you are a very strong mother I’m sorry to hear that your son is experiencing these headaches again after surgery my thoughts and prayers are with you best of luck
My son had surgery - my honest opinion - and this is my opinion - if you do not have a syrinx - do not have surgery
My son had too as he had 2 syrinxs- everything fine then all the symptoms came back but the syrinxs have shrunk allot
I recently had the decompression surgery and also developed a pseudomeningocele. I had a second surgery to repair it 4 weeks after my first. After my second surgery, I had debilitating pain and was bed ridden for 2 1/2 weeks because of it. I still get that pain but I’m told it’s normal healing pain. My surgery was 8/1/17. My CSF was completely blocked and I was at great risk for paralysis due to my syrinx so I didn’t have much of a choice, but the surgery has helped me tremendously regardless of the horrific pain it causes.
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!