Because we apparently missed a test to run on my brain and body, yesterday I had an EEG conducted prior to my appointment with the Dr. E to consult on the administration of Botox to my legs and feet. I drew the first lucky card of the day and became a guinea pig for someone just learning how to conduct EEGs. While she was very nice, I think I ended up with at least a dozen extra red pencil marks on my forehead and scalp as she measured and remeasured. Then she very slowly applied the leads using the theory that more adhesive and conductive goop is always better. Have I mentioned that I am allergic to all things adhesive? So we finally get approval from her supervisor and do the EEG testing. Results - my brain is using its wires according to plan. I would have been really upset had there been any signs of seizures or abnormalities considering that I am on a mega dose of Topomax (antiseizure drug) already for migraines, and another antizeizure drug that helps control muscle tone. As a result of the overzealous technician I had a delightful bulls eye on the middle of my forehead from her firmly and securely attaching a lead there. My hair was also glued down to my scalp, but luckily this was not my first go round with this test and so I had brought a hat. Washing my hair last night took about 20 minutes, a lot of scrubbing, and a lot of warm water to soak off the goop and the shreds of gauze still stuck to my head and be able to get my fingers through my hair let alone a hairbrush. It still itches today, so I think I may need to do a good scrub, round two this evening.
Then I had my consult appointment with Dr. E to determine whether I qualified to receive Botox treatment in  my legs to hopefully assist in releasing some of the excess tone. However I once again drew the lucky card and was given a Medical Student to play with first. She was a cute little thing and I wondered if her mommy knew that she was playing doctor. I tried hard not to laugh when she sat down and eagerly asked for my medical history. Instead I politely informed her that she would need more that that one sheet of paper if she wanted my entire history and that perhaps we should agree upon the cliffs notes version. After going over a condensed medical history, and explaining to her about how I am impacted by Dysautonomia, I then became exhibit A. I had to take off my shoes and braces so she could see my distorted and contorted feet. She asked me the stupid questions of the day.
"Where did you buy those? (pointing to my AFOs)"
"Those are custom made AFOs made by X Orthopedics."
"So did you get to choose the design?"
"Yep. I figure people are going to stare anyway, so I might as well give them something interesting to stare at."
Uncomfortable silence on her part....crickets chirp.....I try hard not to laugh.
"So to put your shoes back on do you have to straighten your toes?".
"Um, I have tried that and the thing is, they just don't straighten. So even with shoes on my toes are curled like this."
"So can you straighten your feet?"
"I can pull them towards neutral for brief periods of time, but this rotated position is how the muscles pull them. I can only hold them for a very brief (seconds) period of time in any other position because it is like pulling against a gigantic, powerful, and tight rubber band."
"So it is more comfortable the way they are (turned under)?"
"No, it hurts like this. My ankles hurt, my toes hurt, my legs hurt. I would prefer they not do this, but the extreme tone in my legs pulls them into this position. Does this look comfortable?"
"oh. Um, not really."
When she did the part of the neuro-exam to check for sensitivity, I did not have the heart or the patience to correct her and explain that you poke with the pointy end of the safety pin, not the rounded end. I am curious how she got into medical school and am just really hoping that she just began her neuro round. I had to play nicely with her for an hour. Then the real doctor came in and it took all of a ten minute discussion to decide that yes, I would in his opinion benefit from Botox injections. He wants to target the muscle on the back of my leg, one behind my shin bone (I am trying not to imagine what is involved in accessing that one!) and one or two others. I will receive the injections at a yet to be made appointment once they receive approval from my insurance and then order the proper dosage and quantity of Botox. Dosing is not an exact science, especially since this is an off label usage for it (which I found strange since I am more familiar with using it in this manner through teaching kids with spastic cerebral palsy and other disorders that caused excessive tone than cosmetic reasons) so the first dosage is like any other medication really - the best calculation but each person reacts differently. It takes 2-3 weeks to see results and results peak at about 2 months. I do plan on warning the doctor when he does the injections that a recent episode of Mythbusters, which proved that women can tolerate more pain than men and redheads more than any others, also showed that cursing increases pain tolerance by 30% and I may take the liberty to test that theory myself - afterall he is going to be injecting a muscle BEHIND my shinbone!!
All added together I was at the neurology clinic for 3.5 hours - 1 of which I spent as Exhibit A for the medical student. Because of my "unusual" medical history and presentation I tend to be lucky and draw med students and interns and residents frequently. But all in all it is good news - the wiring works in my brain, and we have a new tool to try and reduce the spasticity/dystonia in my legs.