Hi everyone,
My name is Tom and i just discovered this Forum and it has already given me a lot of information and i've already read a few relatable CSF leak experiences. My reasoning for writing this post is to share my story and maybe help some people gather some information. I also have a question of which i hope someone who also had or has a CSF leak can answer for me.
I am 20 years old right now and have been dealing with a CSF-leak (of the middle cranial fossa) for my whole life. The leak particularly shows when i bent forward or lay in bed on my stomach. liquor would be coming out of my nose. I have had a total of 16 episodes of meningitis throughout my life as a result of the leak. I've had 5 surgeries in total throughout my life to attempt to close the leak. The last couple of years the amount of meningitis episodes increased and my medical 'defect' was taking over my life. I won't be going into detail about the first 4 surgeries because that would result into an even longer post..
My last surgery was 20 December 2016 in Varese (Italy). I am from Netherland but got the surgery in Varese (Italy) because the (main) surgeon that operated me is supposed to be the best of the best (which he really is). He already attempted to close the leak twice 11 years ago but those surgeries failed. In my most recent surgery in december 2016 they performed a "Skull-base plasty by an infratemporal type B -transchoclear approach" which basically means they make an incision behind my left ear and close my left ear canal completely with muscle and fat and also close the leak with fat (from my stomach). I was hospitalised for 10 days and after that we (me and my parents) drove back to Netherland by car. In january of 2017 i sadly got hospitalised again in Netherland with menengitis which indicated that the surgery had failed and the leak was still there. In february we went back to Varese where they did a check (fluoriscene test) but they found no leak. Best case scenario the episode of meningitis came as a result of a bacterie that infected me during the surgery. Now i am back home in Netherland but still very anxious and afraid the leak reopens. Since the surgery there hasn't been a clear sign of visible leakage from the nose. I am also dealing with headaches since before surgery, it feels like pressure on my head which makes me even more anxious that i reopen the leak when i put pressure on my head. The neurologist has done countless tests to find out why i am having these headaches but so far no explanation.
I am now around 3 and a half months post surgery but still afraid to put pressure on my head (walking up stairs, squatting down, bending forward etc.), can anyone tell me how long it takes before a leak filled with abdominal fat is permanent and i don't have to worry anymore when putting pressure on my head?
I now realise this post is pretty long but honestly this is a short version of my story.. I could litterally write 100 pages on this topic and my experiences in particular.
If i ever get back to be completely healthy i will never take my health for granted and know it is so so precious.
I hope this post helps someone out and i also hope someone can help me answer my question i wrote above.
- Tom
