Tuesday, August 16, 2011

Plans Change...Change Plans..

I cant help but feel a little discouraged writing this - I am one of those people who tries to be an eternal optimist ie finding the positive in every experience (that int to say im perfect and that I dont have temper tantrums bc admittedly when I get to tired or push my buttons to much and i'll tell you what I think it just may take a while!)  whether that experience is good or bad. I do think i'll come around and find some positive in this in some way but for right now I cant help but feel a little discouraged. That being said here is how todays appt went and I must say I this neurosurgeons team is quite exceptional - her nurse especially!

I saw my neurosurgeon earlier this afternoon and she came in the room and pulled up a chair and laid out a couple options she has been thinking over.She talked about having talked to just about anyone and everyone she can think of neurosurgeon wise for input on my situation and some of the feedback she received from these other drs elsewhere. The consensus seems to be that (and I cant disagree) we should try to look at the peritoneal portion of the LP shunt with a general surgeon through a fluroscope type device which this would mean several very (TINY!) small incisions but not actually having (if I understood it right, there is always so much to process that I never tend to think of all the quesitons to later) to open up the peritoneum unless they found something. While my neurosurgeon said she has tested the peritoneal catheter with each of these surgeries bc they use a long manometer to test how well fluid flows she said this may not actually represent the true patency of this portion of the shunt as fuid essentially is running in I think she said at a different speed and consistency than is normal with CSF flow through the shunt itself. The did the CT scan a few weeks back but she said others she has talked to feel this may not really show if the tubing is kinked or blocked by scar or other tissue.  

In the mean time she apparently is leaving surgery scheduled for fri but im not really certain of this bc she is admitting me tomorrow afternoon for 24-48 hours of ICP monitoring so she can try and get a sense of what my pressure reading is and then she said she would potentially drain off fluid after a day or so and wait and see how long before the headaches came back while cont'ing to monitor pressure. She thought by doing this pressure readings she could get a better sense of what type of valve would be a better fit ie she said some people are more sensitive and what would seem like a normal reading in other people is to high in them and she wonders if this is my case and would a lower pressure valve work better. (Again looking back I think I am remembering this right!) She also talked about the VP shunt initially asking if I was set on this given all the problems ive had with the LP shunt (I dont know what to feel about either type of shunt I guess I just sincerely hope we get answers and admittedly I worry a little about becoming to complicated where i'd scare this neurosurgeon off to - maybe it's a dumb thing to be nervous about but ive not exactly had the best of luck with neurosurgeons in general so even though I like her and love her team I cant help but feel this way deep down.) She felt that she would lke to try the least invasive and most apt to give us answers approach before we abandon this shunt and go to implanting a totally new system that in itself although less likely can open up it's own can of worms.  I just keep praying that we find something that works as seems to be my repeat mantra in this post - I know how bad it is when the shunt isnt working right/when the pressure is up but given no other person can be in my body I cant truly convey that to my neurosurgeon and so can only hope she does know. She seems to get it and comments frequently about the period where my headaches where gone after may's surgery so that is my cont'd ray of hope - I guess it's hard when you as the patient dont really know what goes on in your providers minds other than what they say to you.

I'll update either tomorrow night or thurs but please say a prayer we get anwers and can find a solution soon,


1 comment:

  1. Erica, I know what you mean about not wanting to loose the trust of a good doctor. Ethan's health is often so complicated that I am often afraid out coming across as the boy who cried wolf. But, I think good doctors understand. It may come down to trusting that they are good doctors who are invested in their patients' care, and just keeping that healthy dialogue going each listening to the other.