Earlier today I saw Dr.Bragg who I like, I really do like her and she's kind, good at her job and genuinely cares to help but OMG I sincerely feel a bit like I must drive them nuts (not that they ever act like it!! And I am sure they have other shunt pts which just as many issues) or atleast I feel like I ought to just rent a room at her clinic; agh these shunts are enough to drive someone off the deep end!
On the one hand they do really help a great deal; on the other hand the associated symptoms since we placed this 2nd shunt could drive the pope nuts i'd think. The issue right now harkens back to one we dealt with in the beginning of summer with pretty intense side pain/low back pressure likely from the shunt sitting on a nerve or irritating a nerve in where it's threaded in my low spine (it then runs up in to mid-thoracic spine which she has commented she wonders if this location although necessary if there is not enough CSF from the narrowing in my spine and so is part of the problem the 2nd shunt (or LP shunt) not draining enough due to partially occluding at times at that tip of the catheter due to not enough fluid.) We dont know. Headaches actually are really only pretty bad at nights and mornings are un-enviable for the first hour or couple hrs depending on the day and then the days except for the past few days (in which symptoms have been some-what worse) havent been that bad since we had turned the VP shunt back down to .5. Today we turned the LP shunt down and are going to try this. She told me she is on-call over the long weekend and so if needed she'll meet me in the hospital to re-set the LP shunt higher if the pain is worse and/or if needed she can see me in clinic tomorrow to re-set it or figure something out. Right now there's no change one way or the other w/side pain and low back pressure but am curious if H/A's will be better over-night or in the morning..
One of on/off symptoms that I think is related to this LP shunt and which I keep forgetting to ask about (even notes dont remind me to remember these sort of things!) is the leg discomfort both numbness (way back in spring we where going to watch this so not as concerned) but anytime I sit for more than 10-15mins I get an incredible discomfort and ache in my upper legs (back and front but mostly back) and its very possible its just muscle issue although id think w all the strecthing I do id be hitting those muscles well so I really dont know. I do know its a pain and a pain even in the butt; damned MPS I tell you sometimes... I hate having to ask people questions much less about new issues!
I am back in splints for the carpal tunnel symptoms although only wearing one side and at night for now and had to reschedule the EMG for next week due to a neurosurgery appt tomorrow that was scheduled Weds morning. The actual hand appt with the new surgeon is the beginning of Oct. Im not actually sure if this is carpal tunnel again (would be a third time if it is as ive had 2 previous CT releases each hand and tendon transfer on the R thumb). I wondered if it could be from the area in my (lower?) neck that doesnt have much CSF causing referred symptoms but I dont know.
In other news I sorted out some providers issues and in a flurry of phone calls late last week it looks like I can use my secondary insur to stay with/reimburse those providers who are not in-network with my primary insur plan and whom I am not to willing to leave which was exciting news. Who knew that something like being able to stay with a provider could mean such good news, right!? But in the case of my Pain dr she is fantastic.
I scheduled an appt for Nov with the Ortho-spine surgeon I see at Twin Cities Spine Center/UofMn figured this was as good a time as any given some symptoms and changes and I also have to go back (albeit a year late due to all the shunt surgeries and the IRB programmable shunt change) for the Neuropsych study testing anyways and can piggy back the two. My Pain dr has been urging me on and off to see this dr for some time so I figured I should do it once. He's good at his job and very familiar w MPS neck issues/back issues so it will be a good thing ultimately. Ive not seen him since 3 1/2 yrs ago and 3 months after my neck surgery (which was on election day 4 yrs ago)
Last week (17th or whatever that Tues was) I saw a Neuro-Opthalmologist at UW; she did Visual field studies, retinal and corneal pictures, and some other scans/tests and went ok. The reason for this was all the shunt issues and vision issues (which do mostly iron out when the shunts are working) The really only thing was retinal damage/cont'd changes on Visual Field Study and mild optic nerve damage. She wasnt sure if the retinal damage was actual damage/degenerative changes or if it was due to small eye openings and defects on the VF studies but due to the cont'd presentation on these results and the 2 studies from 2 yrs ago she wanted to repeat the tests again in 6 mo. Not the most exciting test (is any really though) and tedious but not painful and each eye takes about 10mins so should be ok. Just alot of boring clicking while staring at a center dot to see what areas if any of a persons visual acuity are affected by issues.
A comment I posted on fb basically venting or something (whining a little maybe?!?) And a friend whose daughter also has MPS I and although much younger reminds me some of myself:
Me: "The amount of money I now spend on drs n PT being scattered to the wind should be ILLEGAL! :/ Cant imagine s/o w crappy mpg."
BH: "What would happen if you went a year without a medical visit?"
Me:"It would be nice but not feasible; would mean no ERT (wkly), no Pain mngmt (due to FDA regulations monthly visit), no PT which although I do stretching and strenghtening at home at PT she does a hands on technique which both helped wonders... for QOL. It would mean anytime/everytime the shunts re-programmed themselves (has been 3 or 4 times in several mo's) to a higher setting id have to live w the pressure vs very little H/A's when the shunt settings are at the correct settings. It would mean the cardiac issues would be messier or more complicated then they are already are as we've tried to adjust meds accordingly for the L sided heart failure symptoms, valve issues, etc. And the list goes on endlessly.... I dont love doctors or therapists and gets annoying but i'll take some measure of feeling better and dealing w seeing them over not feeling good, no quality of life and no answers... why do you ask?" ~ "And no botox which I also dont love but it beats the back muscles in near constant spasms! Being Elly has MPS I and although transplant so is very different you I am sure know..."
Lol, I couldnt help but laugh; knowing B as well as I do I really did know he was pretty much giving me a hard time/teasing me a little but it still made me laugh. Im really not sure outside the MPS community a person can get just how "insane" this MPS "stuff" can be; it sure never stops!
All for now, i'll update whenever there's something new to update on or if anything changes w shunt issues.
In the up-coming weeks some of the appts or tests coming up include appt with the new Neurologist taking over the Botox injections, cont'd PT in Madison w the new Therapist, EMG test, and other "not new" follow up appts.