I've been told today that there is only one place in Central Ohio that does these tests, and though I am on the top of the list for any possible slots that may develop as a result of a cancellation, I am presently scheduled for JUNE 9TH! My first question was, of course, how can I be on top of anybody's list and be scheduled for JUNE 9TH? Can there possibly be either A. Another place that does these tests, or B. That many being ordered, that they're booked into June? I was told that the next nearest place was somewhere in Michigan; I might call back and ask where in Michigan. Anybody have any ideas? My travel budget would really be severely limited.
That is a long time to wait! I would ask if the other place is close enough to make it a day trip. JUNE 0 ! That is really a long time. I would ask the physician who ordered the test where the next nearest place is. Don't take the word of the one that wants you to wait. I hope for the best, Ann
I made several calls, and was told by multiple sources that the next nearest place is at the University of Michigan in Ann Arbor. I'm north of Columbus, so Ann Arbor would probably be closer than Cincinnati if there's anywhere down there. Might be time to investigate the Mistake on the Lake. This is frustrating. I'll try the local MS chapter.
Oh, bless all your hearts. I am being seen at the MS Center at OSU, by the Chairman of OSU's Neurology Department, and they are sending me to Children's for the VEP. No confirmation yet on the SSEP, though a lady at Children's (different dept.) told me that they can do that too, and probably a good bit sooner than the visual test. Another day or two of nudging people to communicate with one another and I might have that one done in a reasonable time.
Hey, the last time I was at Children's was to visit a local teen who was in there for Crohn's disease, and now Loretta's excess removed but healthy tummy tissue has been donated to a Crohn's study for comparison. His Mom now cleans for us. Small world.
Incidentally, can anyone here describe their SSEP experience? The contact at Children's hints that it might be best to be sedated for that regimen. I don't know; I've always thought I've had a fairly high pain tolerance, what with my long and complicated kidney stone history. Thoughts? Would/could it affect the results?
They actually offer sedation? It wasn't pleasant, but gee! Ever touch an electric fence? It doesn't hurt as much as that. Ever have a friend who had a TENS unit and decided to strap it on you to see what happened? Crank it up until you twitch? It's like that. Some pain involved, but it is bearable over the few minutes it's happening. I've never had a kidney stone or delivered a baby by other than C-section, but SSER is nowhere near that painful. Yeah, I was squirming and whimpering a tiny bit toward the end, but it wasn't very bad.
I think I must be one of those with a high tolerence for pain. I thought that it wasn't painful, felt a little odd..bordering on uncomfortable, but I had no pain. I though that the worst was the forearm portion only because it caused thumb twitching and they asked you not to fight the twitching (which was not easy and was a uncomfortable). I would do it again and even if they offered sedation in my case I would do without.
This was Children's Hospital talking about sedation; I'm thinking most of their patients squirm and whimper a tiny bit. I went through quite a bit of TENS therapy on my forearm when I had tendonitis ("tennis elbow" they called it; they've never seen me on a court!) several years back. Nuthin' to it, then. (Didn't help, but it didn't hurt.)
Kidney stone pain, on the other hand.... Well, one night I was standing so close to the tile wall in the ER that it looked like the floor. Well, it might have been the floor. They gave me so much morphine I couldn't have pronounced my own name if you'd spelled it out for me. Loretta had driven me there from her parents' house; 80 miles, in exactly one hour. I was writhing the whole way. Even after all the drugs they gave me, it still hurt, and it hurt a lot. That was a Saturday night; they kept me more or less unconscious until they could operate on Tuesday. I was there for another 15 days after the surgery. Long, long story, but fortunately, a long, long time ago (I was in surgery the day President Reagan fired Oliver North). I wouldn't wish that experience on a living soul.
Just had a SSEP done. LIke Jenn and hbananas said it's uncomfortable but not unbearable. The twitching of the thumbs and toes was strange...only felt the twitch in the right big toe but in the other digits they twitched and I could not feel the thumb or toe twitch but could feel the electrical impulses in other parts of the area being tested, i.e. I couldn't feel my left toe move but felt the electrical impulses on the sole of my foot.
Anyway, sedation is not necessary in my opinion, no where close to kidney stone pain, more like an annoyance than pain.
I had an SSEP. VEP, and BAER. I did not find the current painful...more like a swarming mosquito, more of an aggravation.
I what I did find uncomfortable was when they scrubed the patches of skin where they were going to attach the electrodes. It felt like they were using sandpaper, really. It was a paste with some kind of grit in it. I was grateful for the numb spots :)
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