I am finally able to take some time and write this. I wanted to give an update because the road got much rougher, but there are bright spots now too.
The night after my last reply, I woke up to a CSF leak…wet pillow, incision leaking slightly at the top…that sort of thing. My surgeon had the ER put a simple stitch in to reinforce it and we waited to see if it would stop. It did not. The leak continued to worsen over the next few weeks. Surgical glue also began to emerge from the area as chunks of clear gel that once exposed to air shrank and hardened up (as they should have done in my head…oh well). My doctor finally said it was revision time and I was scheduled for surgery 2 days later.
The revision surgery showed that the graft had developed a tiny hole and had been leaking. A new, slightly larger graft was glued to the old and stitched around it. I was on my back in ICU for 6 days on Diamox and with a lumbar drain constantly draining to make sure no excess pressure was placed on the grafts until they sealed well. I was also not allowed to raise my head higher than 20 degrees (mashed potatoes and jello were my best buds!).
After all that, it has now been over a month and I am happy to say I still feel like it was worth it! My fiancee and I went to see a movie recently and I was able to watch it without getting woozy, dizzy or sick! I can pick up my 2 year old daughter again! I am still not 100%, but my surgeon has told me to give it a year as my whole body effectively has to recalibrate to all the new signals getting through at different rates and such.
I wanted to write this to make sure everyone had the true data. The surgery was not a cakewalk by any means, but for me it has worked out and been worth it. I am excited to see what improves/changes over time.