Today's neurosurgery appt turned out well or atleast better than I hoped except that I was right and shunt is basically failing again. I had been incredibly nervous (and I dont normally get nervous before appts) before this and before yesterdays cardiology appt because while I knew what I was feeling it's still hard because you dont always know if your provider is going to believe you. In all reality I need to have stronger faith in these 2 providers as they are 2 of the best on my team of specialists and both have good supporting teams. I literally cant explain why I felt the way I did but I was kind of depressed leading in to these appts; I guess because I want to feel better but in the first place I didnt want to be not feeling good to begin with. Ive had such weird symptoms lately between the nerve injury issues flaring up (bladder spasms which cause such gosh aweful and at times unrelenting cramps, a leg that is falling asleep randomly and often when I am standing as well as a period which is haywire -this month lasting basically a day and last month a couple days, I suppose due to endocrine-hormone dysruptiom from the on-going, intermittent shunt pressures/revisions. The cardiac stuff has been a little aweful at times with the rhythm issues literally just beating to its own very fast seeming chaoric tune althoug im not sure its chaotic but that it feels this way when there is so frequent skipped beats. I havent been sleeping well due to the breathing issues and the headaches which are separate but together create a really rotten time trying to fall asleep and then stay asleep and I sleep upright which helps this some but puts pressure on hips and low back and I apparently must move around often in my sleep as I often wake up with the headaches and feeling of trying to breathe past an elephant on my chest after tossing and turning in to a flat sleep.
At today''s appt I said to Dr. Bragg how I really jsut hadnt wanted to come in there with yet more bad news with the shunt and that I so wish I could come once or more importantly many times in a row and cheer that the shunt IS working right. (not that I was saying it was her fault as it is not). She and her nurse in their usual gracious style told me I ought to never second guess myself and although we've had a bit of a difficult time getting the shunt to stay working my symptoms have followed the same pattern each and every time and she had no doubt there was something wrong then as everytime ive said the shunt isnt working when she explored it, it hasnt been right. She did a shunt tap which showed the only CSF she was able to pull out was the fluid sitting directly in the valve/reservoir whereas she should have been able to pull some from within the ventricle to. This combined with when she depressed the reservoir it was slow to refill confirmed to her we should try saomething else. They will call tomorrow with a surgery date (she had asked if there was anything I wanted her to avoid scheduling around) as it was after normal clinic hours by the time I was done and apparently they are going to try to do it in the next week or 2. Apparently she has been brainstoming trying to think of ideas to make this work better in addition to moving the location of the proximal (beginning) end of the shunt from the ventricle above and to the R of my right eye to behind my head; a space that has less tissue and where the shunt tubing can be placed furher in to the ventricle. I had to give her and her nurse a little bit of a hard time when they are thinking of me days before im even coming in for an appt we clearly are spending to much time together; the funny part being several of my other providers will also commonly say they where thinking of me the morning before I saw them or several days before and some will send emails to see how im doing when they havent gotten any updates. Yikes, I am very glad to have caring providers but like iIsaid, clearly spend to much time together!
I have to call and schedule a pre-op physical tomorrow (#501 it seems like) although i'm kind of hoping since I did just have a pre-op in Nov for Dec's. surgery and I just saw cardiology yesterday that maybe my PCP wont make me come in; I can wish right!?
I'll update when there's something more to note,
Thanks for stopping by, leave a note if you like,
Erica
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