It was a fight to get my diagnosis, but once I did I received a decompression surgery. I started to feel my symptoms to back off more than I thought would. 2 Months after surgery I got a CSF leak from one of the sutures on my dura, it created a bulge on the back of my head with INSANE horrible symptoms. Its been a year since I had the leak and it went down with no more leaking, but there is still a collection of fluid stuck in a “capsule” that was formed. Im now currently trying to figure out if anyone has had this happen to them and if you got surgery? the surgery they suggest draining the fluid, removing the capsule, and taking fat from my leg and putting it where the capsule was to prevent a future leak…
It was a fight to get my diagnosis, but once I did I received a decompression surgery. I started to feel my symptoms to back off more than I thought would. 2 Months after surgery I got a CSF leak from one of the sutures on my dura, it created a bulge on the back of my head with INSANE horrible symptoms. Its been a year since I had the leak and it went down with no more leaking, but there is still a collection of fluid stuck in a “capsule” that was formed. Im now currently trying to figure out if anyone has had this happen to them and if you got surgery?
It’s not very often that I’ve heard an EXACT same neuro situation as another patient, in fact, I’ve never heard an EXACT same for myself, which I must say is a blessing for everybody else as my neuro journey has been one hell of a rollercoaster. BUT in saying that there are certainly similarities.
Post surgery (Craniotomy) I had a CSF leak. I was told that once the craniotomy healed the leak would seal, and it did. But like you I was having some awful symptoms. After a lot of complaining from me they decided to do a scan and they found I too had a fluid filled capsule. It was then decided that I required a shunt to drain the CSF from around the brain as the capsule was blocking the aqueduct (Drain tube) and causing hydrocephalus.
So they inserted the shunt, but the shunt was a VP shunt, draining fluid from the ventricles BUT it did not drain the fluid from the capsule. In my case the capsule was sitting below the hypothalamus and was giving me no end of issues in regard to my temperature. If the ambient (outside) temp was cold, I’d be sweating profusely. At night I’d wake up 1/2 way through the night, absolutely saturated. I’d have to get up and dry myself with a towel. I had a woollen underlay on the bed, I was sweating SO MUCH the underlay and the sheet were decomposing underneath me. My wife’s side of the bed was fine, but mine was awful. I reported this to the medicos and their response ‘Well that can’t be happening…’ my wife assured them, it wasn’t just a figment of my imagination. It was decided that they’d operate again to drain the capsule, but because it was so deep in the brain and near bits that I needed, it was too risky to remove completely. So although the capsule was drained, the aquaductal blockage still remains. This was proven a decade after the first surgery when there was an issue with the VP shunt.
The shunt had a malfunction and they queried if the shunt was still required, so they clamped it, stopping all flow from the shunt. I was told it would be clamped for 24hrs, but within 6hrs I was becoming more and more symptomatic, then by the 8hr mark I was rushed back into surgery as it was establish that I certainly DID need the shunt.
In my situation, this all occurred due to the positioning of the capsule, so this may have an impact on the approach taken by the medicos BUT I would STRONGLY recommend that, if at all possible, avoid going down the surgery route. For me, yes they treated the cause but it unleashed a whole plethora of other ‘weird, odd, strange’ symptoms that nobody, not even the medicos could explain and as a result I’ve required multiple neurosurgeries to ‘try’ and manage it all. Those ‘weird, odd, strange’ symptoms haven’t just continued, they’ve expanded.
Now, like I say EVERY neurosurgical journey is different and I think I was unlucky enough to be “the one who drew the short straw”. I tried to draw a comparison between other people’s experiences and my own, but there was no comparison. Some people can be lucky enough to go through it all and come out the other side with an almost ‘Miracle cure’. I just wasn’t that lucky.
Best of luck with it all and please do let us know how you get on.
Merl from the Modsupport Team
wow, thank you so much! did they ever tell you how this “capsule” was formed and what is it made from?
Ohh, I’ve had more diagnosis, theories, hypothesis and straight out guesses than I can count on my fingers (and toes) as to a cause/reason and damn near every Dr/specialist/Druid I’ve seen has had a differing opinion, which has done nothing but distort/confuse/disorientate the whole question of how and why and to be completely honest, I still wouldn’t say I’ve got the answer.
As a young child I was in a MVA. Was that it? I used to play rugby (a very physical sport) as a child and had a few decent head injuries. Was that it? I was viciously assaulted one night. Did that do it? My mother questions herself, back then if the Dr told you to take a medication, you did so, no matter what it was. Was that the cause? (She beats herself up about that. I’ve told her she shouldn’t, but I know she does)… I could go on and on and… But what for, it doesn’t change the ‘Now’.
A long time ago a university professor who told me ‘If we keep looking backwards at things we can’t change, we often miss seeing and trip on the things right in front of us’. I have enough issues to deal with, with the here and now. Looking backwards ain’t going to help. I’ve been there, done that. Not a good idea. Blame can be a nasty thing and when I get no real answers, the blame lands back on me and that’s a downward spiral I wouldn’t recommend for ANYBODY. My recommendation: Deal with the NOW.
Location can be a HUGE part of any treatment plan. If it’s not interfering with ‘life’, If your symptoms are ‘manageable’ with medications or relaxation techniques or whatever gets you by. Then great. But if you are concerned, if you are worried get it followed up. It might be nothing to be too concerned about, but if you’ve had a history, which obviously you have, get it seen too. If your symptoms are already progressing, then that’s not a good thing. Get it seen to NOW. I say this because I ignored things for way too long and I often question myself, 'What if I’d spoken up more, louder, sooner? would I be in THIS situation now?".
Merl from the Modsupport Team
I had a similair surgery and problem I think. After my 2nd brain surgery (This was for a brain tumor) I also had CSF leakage. It was when I was 3, so I am not as familiar with the details of the surgery. However, I believe that the dura was resewn and a lumbar shunt was put in to reduce the CSF pressure and leakage.
If you can get the surgery without a shunt that is great! It caused me problems many years later and I eventually got it removed once my head was able to absorb CSF again.