Although it stinks that we have had multiple surgeries and complications, it is nice to see you are not alone! It is also nice to see more information about aseptic meningitis and pseudomeningoceles! I agree Joyus, the meningitis was terrible, I can't even imagine what bacterial meningitis would be like! I am worried that things can still go wrong. It spooks me to hear you say thta your headaches are even worse than before. After having three surgeries I just can't imagine having to do it again. I guess for my now pseudomeningocele will have to be my little friend. I just keep my fingers crossed that it does not cause an increase in problems, with any luck it will just act as a drain and symptoms will be minimal. Linnielou- I agree that we just keep going and dealing with it but there really are moments when you really wonder how much more you can deal with. When they told me after my third surgery that I had a pseudo again I just wanted to cry! One surgery was bad enough, now I am just sick of feeling crappy and not knowing what is wrong. That is interesting they think it is your stitches, for me they think the leaks are from high csf pressure. I guess they just make the best guess that they can! My first patch was bovine and my head did not like that at all, now I have my own harvested tissue. I have one dissolving stitch in the back of my head now that is still painful, he says that it will go away but it sure is going slow! One stupid little stitch can be very annoying! :) I guess it can be a long haul for many of us! You are prepared that everything will not go away and that it may not cure your biggest issues even but you are not prepared for things to get worse after going through all that surgery and money do do everything. I am hoping all the frustration is worth it in the end!!!
I feel so bad for you ladies. I had aseptic meningitis and the pseudomeningocele. It was the worst pain and misery I had ever gone through. Having the second operation took care of most of the problems. A few moths later, my headaches have returned and are worse now than before the operation. Hang in there, hopefully you will have some relief soon!
Very interesting, I will write more soon, probably Monday. Really busy weekend! It is nice to hear from people with similar stories so I look forward to a responding and chatting with you :) I was really freaked like you, they told me the next thing to go was going to be my breathing, things were really screwed up. I promise to write again soon but I am supposed to be getting things ready for the big snow storm and my husband is off working alone :)
It sound's like you went through the same issue I did. I also had 3 surgeries due to my stitches wouldn't close. My doctor explained it to me like. When they put stitches in your tissue. Your tissue should atomatically absorb around the stich. I quess this is called body tissue build up. My head wouldn't except the stitches. On my last surgery instead on the doctor just putting more stitches in. My 1,2 surgery they put in called mesh. My 3rd surgery they put in muslin. I know say I'm a patched quilt HA Ha. It's not funny it's pretty scary going through this. My doctor even said after my last surgery which put every thing into shock that he wouldn't of known what else to do for me. I am now having a lot of pain in the back of my neck. Had steroid shot's put in a couple of week's ago which helped a little, but I still have the pain in the neck. My next step is to get the shot's in the neck to see if it will calm now the nerves in there. Just reading your post I went into dajavoo. It is weird how we all go through the same issues but in different way's. It is scary having Chairi because even the pain clinic told me that they are not that aware of this. It's scary when they had me on the table ready to give me the injection's and I'm trying to get up making sure they know what they are doing. I sure don't want another CSF leak. I'm glad to hear you don't have to have another surgery, it is just disappointing to wake up every day and have another issue to deal with. I guess we are pretty strong people mentally and physically. They say God only gives us what we can handle. Well he hasn't been listening, because I can't take much more. It's always so nice to have all of you on here to come talk to. You understand like no other's. I wish you the best.
I too am curious if it is a meningocele or a pseudomeningocele. I think a meningocele is where the fluid is enclosed (surrounded by dura?) .... where the pseudo is just in the tissue, for me it is from my patch having a leak. I have had two pseudomeningoceles and the first caused problems so I had a second surgery, that caused complications so I had an emergency third surgery and I just got my MRI results 3 months post op and I have yet another pseudomeningocele in the back of my head/neck where the patch is leaking again. I also had meningitis but I did not have bacterial, I had chemical meningitis (aseptic). In my case they said surgery will depend if there are symptoms from it like the first time. I had a lot of positional headaches. For now they are just watching mine but said the next step would be a shunt, not a repair on the leak because at this point they are assuming high CSF flow is causing my leaks??? Who knows but at least I don't have to have another surgery for now. I hope you get answers quickly, it is very stressing just to hear there is another issue!! I am quite frustrated myself. -zygy
I don't have input for you, but a question, you had a fluid build up that they had to remove, was that a psuedomeningocele? What were your symptoms after surgery?