Hi everyone. I was diagnosed with C1 in February of this year and had decompression and repair at the end of March. Everything was well for my follow up checkups, and at my 6 week visit, my NS 'cut the strings' since I was doing well. Shortly after that, I started to notice some slight swelling around my incision site and sometimes it was worse but for a month or two, it stayed relatively small and so I listened to my mother (even though it didn't feel right) that it was probably just normal and would go away.
Well, it didn't go away. It kept getting bigger and tighter, so I called the NS to advise. His assistant told me to go in for a CT scan immediately to see if the graft/patch was leaking csf. Still with no support from my family that this was a serious concern, I was unable to go to the ER at that time. I put it off for almost 2 more months, until I started hearing my pulse in my ear again and the general malaise started back, and I decided I couldn't put it off anymore.
Lo and behold, it was a pseudomeningocele, and my NS told me I needed a lumbar drain to remove the fluid for some immediate relief and to see if it would allow the patch to fully heal, otherwise I would need a shunt. I was told the drain would be in place for about 24 hours and that there was usually no recovery time afterwards. The drain ended up being in place from late evening on a Thursday until mid-day on the following Monday. I was also not told during the procedure not to move while the drain was open, and to lay flat or anything like that. The drain was removed a week ago.
From the moment the LD was inserted, I've had horrible mind-blowing headaches that are usually accompanied with much nausea and vomiting. When I went for my follow up on Thursday, my NS said that there isn't anything else that can be done since the drain isn't leaking, so I need to move around more and work through the discomfort. He expected a few more days and I would be semi-normal again, but I am still not able to sit upright for more than a few minutes! My mother interpreted this as I should be doing all the things I normally do now, and my not doing so is unacceptable.
Has anyone else had this type of procedure, or a similar experience? This feeling is worse than it was post-decompression by a million-fold and I don't know what to do. I'm missing work, school, my kids' school events, everything...and all I can do about it hug my pink bucket and cry. :(