Friday, June 15, 2012

it's a shunted iissue, go figure.

Well yesterday I saw my PCP because of the pain in my L side (towards the back) and she wasnt sure what it was but recommended I touch base with Dr.Bragg's office. After I had the botox injections done at PMR I did call and talk to Lisa, Dr.Bragg's nurse who in turn talked to Dr.Bragg. They asked me to come in this morning.

I saw Dr.Bragg and the NP (Sue) and first Dr.Bragg did the simplest think by checking the settings on both shunt valves which where still accurately set at .5 and 1.0, Given this and given the VP shunt reservoir refilled fine (ironic that the LP shunt has done wonders to keep the VP shunt working well!) she (Dr.Bragg) tapped he LP shunt (which just means inserting a needle in the lumbar shunt reservoir on my side and seeing if she can pull off fluid easily) and wasnt able to get very much spinal fluid off and at the same time she was doing it, it did re-produce the L sided pain I had been getting although we dont know what that is about. She also said that either the mid-spine pain could be because the arachnoiditis (inflammation of the arachnoid or one of the layers that covers the spinal cord) could have just suddenly improved or the side pain could now be appearing as the lower back discomfort that also comes and goes - she isnt sure. Because of not being able to pull off enough CSF and being very sloowww (sluggish) as well as the reservoir then appearing caved in for a short while after the needle was removed she thinks part of the catheter is likely occluded. Initially she re-set the valve to a slightly higher number for the weekend (kind of miserable even more so really already) to see if this reduced CSF trying to drain will help force open the spine catheter and I see her back in clinic on monday ro re-tap the shunt as she is also looking at my last imaging to see where she could best place a new catheter. She said she likely would disconnect the lumbar-thoracic catheter that is in place now and tie that off as it would be to risky (I think I got that right) to try and remove it due to the irritation we've been dealing with, the lack of CSF in the area, and the anchor that is holding it in place in the upper thoracic region. Instead of going through the current several inches long incision we've used many times in my back she at this point thinks she would go either higher or lower and re-create a smaller incision to tunnel a new catheter in and she said something about thinking she'd probably end up having to do another laminectomy (remember last weeks analogy of the ladder and how the steps on a ladder represent essentially the same as the lamina in our spine - the supporting bone for the rest of our bodies spine and weight.) as every time we've had to replace the spine portion of the catheters we've had to laminectomies. (3 levels at this point I think?) .

She also said something about needing to keep the catheter away from the nerve roots so the catheter doesnt act as a suction and re-create that issue w the nerve roots clumping together and further leg pain that occured with my previous LP shunt and surgeon and since we're unsure what is causing the current numbness on and off in my feet from time to time. - There where a few things I know she was just thinking aloud on and I asked questions about that she answered well but being I wasnt feeling awesome sometimes the best explanations can still go over my head! :) Given I see her mon I knew I would have time to think about this all and she would have time to think about it all more and we'd come up with the master plan. Monday she just wants to re-tap the shunt to see if by chance temporarily resetting the valve will have helped and then so we can figure out final options/plan. I am hoping the VP shunt will pick up some of the slack from this higher setting LP shunt as it kind of is completely affecting my head right now pressure wise and started within an hour-ish of our resetting the valve although at the same time it's clear the VP shunt is draining bc while the headache is bad its not yet horrible. (please dear God stay that way).

When Dr.Braggs NP came in we where talking as we always do and joking around (taking things at lighter value makes it easier to deal with for me) and Sue commented how it had been a while (not long enough! But she also wasnt there when I saw Dr.Bragg and Lisa last week) and said  "your like part of our family we like seeing you" - as ive commented before it's so nice that these providers like me and that we get along so well but I do hope we still get to a point of maybe seeing each other a little less! Even an occassionaly email would be ok but this every week or every other week stuff, yah I dont love being in their hair (rven if im not)!

I was also supposed to have lunch with a good friend of mine who works in Madison/loved in SP and I guess I had so much on my mind I completely spaced out on it and forgot to ever send her a message when I was done! Oops!! We talked earlier today and going to try for monday to meet for lunch since i'll be in the area again.  I am hopingto feel semi-human (please!) this weekend as it's a busy one with Father's day car show sun and im sure swimming afterwards at my parents and then my cousins graduation tomorrow + id really like for my nephew to spend the night. I hope I hope. I am meeting my Mom for supper tonightt although food sounds atrocious really.
More soon - if nothing else will update monday,


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