So I frst have to apologize to those who read this because again I dont know who all reads this. My neurosurgeon stopped by this morning and she first asked if my parents where with me yesterday during the surgery (waiting) and then she was so apologetic for not having gone to talk to them saying that even if the general surgeon talked to my parents it is still her feeling she likes to talk to her patients family. I love how honest and down to earth she is! Then this is where I feel a little guilty she also apologized saying she had come up to NICU last night to talk to me but I was asleep, she thought this was around 6-6:30 and she said she hadnt wanted to wake me feeling that she shouldnt take her patients sleep when they can get it. I as a patient sometimes just need to learn patience - I know what a fantastic dr she is so I should not get to frustrated - although I dont think my frustration was with her it was more with just not knowing what lays ahead in general which is always one of my hardest things. I am totally not a perfect patient!
So this morning when here, her and her resident wanted to tap the reservoir in my shunt to pull of cerebrospinal fluid (CSF or the fluid that bathes the brain and spinal cord) to see if this again releived my headaches like in the past and if so where my ICP readings where at after this so she had an idea of what valve she should best look at. She mentioned she is again talking to the 2 companies who make these valves and going to get their opinion on which one they feel is the best for my situation and which one will provide the best but least reistance low pressure wise. I commented how several people have looked at my ICP numbers in surprise (they are very low) and been surprised that I dont have a low pressure headache and she said as we've talked about in the past that she has other patients with the same situation and just requires finding the right setting for getting fluid off to maintain those levels. In the mean time when she tried to tap the shunt reservoir and get fluid pulled off she said the reservoir appeated flattened instead of the normal dome shape and she worries that the catheter from the lumbar spine to the reservoir is now not working for some reason. She said I dont have the fluid build up on my back as they where able to visualize that going down when they fixed the peritoneal catheter portion of the shunt in surgery yesterday and tapped the reservoir to assess flow. She's not sure why it would not work now. She has ordered a shunt series (xrays) for today of the shunt and wants to try again tomorrow to pull off fluid and get a baseline of what my pressures like to be at H/A free and watch the ICP numbers as the pressure comes back. This would help her with her choice of valves for the shunt. I currently have a Horizontal/Vertical (H/V) medium pressure valve and her thought is this provides to much resistance to impede enough CSF getting through and we need the lower pressure setting on a different valve. Im not sure how long this all means being in the NICU and hooked up to this ICP monitor at the moment and any of this could change.
They also pulled of the last steri-strips from the 8/9 surgery on my side incision and took out the stitches on my lumbar spine and the glue she also placed she said would come off on it's own. The incisions from yesterdays surgery are really only sore with some positions and when going to the bathroom. Going to the bathroom is also an interesting feat given the bladder retention but has been slowly improving since yesterday a little and I also am on a new bladder urgency med to help that we are hoping has less side effects. With the general ansesthesia yesterday even despite anesthesia using the device(s) they did that allow them direct visualization of intubating I do get a sore throat/irritation and dry irritated lips - this combined with the vesicare (anti-cholinergic) medication side effects of dry mouth makes for one interesting feeling as far as throat irritation and the combined feeling of acid type and dry is very strange!
I will update again when I know something - perhaps not till tomorrow sometime.
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