Today's MRIs although incredibly hard (took about an hour for full spine MRIs), thankfully the Tech's let me sit up about 1/2 way through for about 5mins. I was getting
a little anxious and overly hot then chilly. By the last 20mins I had to pee something fierce and head was not all that pleasant feeling. I really tried to just think about other things which worked a little to distract but these where some of the more miserable imaging I've been through.
I posted on my fb about feeling a little discouraged and that sometimes you just need something or things to be better, I really was feeling this after my appt w Dr.Bragg. It really had very little to do with her and more that I feel like I have these symptoms but
1. since I have 2 shunts (so even w what I think is 1 shunt not working well enough the other shunt picks up some slack whereas prior to having 2 shunts I would get really, really sick and perhaps was more noticeable? I rarely get 'so sick' so I think I look fairly reasonable at appts and I sometimes wonder if that hinders getting answers sooner? I don't really know to any of the above.. I am grateful that 1 shunt seems to help or pick up slack when/if the other isn't working as well but does make it harder to get answers sometimes..
I'm sure also I look fine, even when I don't feel fine which isn't a huge help and I try to stay smiling even when I might feel like anything but.. I guess I figure even if I feel bad I don't want to make someone else miserable?
I just wish there was an easy answer once. As I figured they have no real idea about the intermittent fevers (they're unusual), and I think the thinking is it's probably just a virus (?I have no other virus like symptoms and would a virus be so intermittent?)
Honestly these fevers seem similar to other times I've had issues so is admittedly a little concerning to me. Then I feel like a hypochondriac even though I absolutely know the symptoms are real. =/
As far as the Leg/nerve pain the MRIs did look pretty good other than I think (and Dr.Bragg wasn't really concerned about this) narrowing of the spinal canal in some areas.
She thought maybe the leg/nerve pain (she did say the symptoms I described are classic for what other people also describe) could be possibly from the TPL Shunt sitting on/draining nerve root (causing irritation).
She thought it was possible the chest/shunt site breathing pain might be caused if the shunt was unintentionally reset (can happen) and irritating the spine nerve root as the catheter sits closer to one side of the spine canal. Since this same issue occurred a month (maybe it was longer?) ago and symptoms improved w our re-programming the (I believe) TPL Shunt to a different setting Dr.Bragg thought maybe doing the same today would help.
So far I've noticed no difference and though she may have said, I don't know how long it might take for nerve irritation if that's what it is where going to improve. Given actual headaches virtually always improve within a few hours of our re-setting/programming 1 or both shunts I do feel a little discouraged that symptoms con't on and not at all improved.
I don't know if I should call her office tomorrow (=/) or wait till next week, she mentioned something about if today's re-programming didn't help to call and come back + we'd either try a different setting (I think we are 2nd to lowest setting on both shunts though =/) or she would tap the shunt. Given only the VP Shunt has a reservoir to tap I am not entirely sure how this would help us know if the TPL Shunt where working or not? She must know though and I trust her thought.
In any case the discomfort with breathing is all along the TPL Shunt now and really irritated + uncomfortable + seems almost (as ridiculous as it may sound) as if their is air or fluid or something bubbling as I can literally feel something when I breathe sometimes. I miss just breathing and no 2nd thought about it!!!!
Anyways, thanks for stopping by,
Erica
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