Saturday, April 5, 2008

SpaZmO, That's Me!

Last week I shared a bit about my struggle with Spasmodic Dysphonia (SD). In the comment section, April asked me if it was the same thing that Diane Rehms has. I had never heard of Diane Rehms so I quickly looked her up and learned that not only does she have SD, but she wrote a book about it titled, Finding My Voice. I went over to the SD website and did a little poking around in the archives on the message board and found mention of her. I then requested the book from my library and have since read it in its entirety.

Wow. The first third of the book is mainly about her childhood, the second her career, and the third about her struggles with SD. I found it very interesting. I laughed out loud when I came to the part about her experience with botox injections. She gets the smallest dose injected into both chords. That would be 0.1 units. My doctor started me out with 1.5 units in one chord and I did not get a positive result until months later when I got a 7.5 unit dose. Of course, I couldn't speak at all for nearly 6 weeks. They brought the dose down to 5.0 units and injected the other chord since I still had a residual result in the previously injected chord. That time I couldn't speak for 3-4 weeks and the result only lasted just under 2 months. I have yet to have another good result even though my doctor went up to 10.0 units. When you get into high doses like that they have to use a different concentration of the botox. It is extremely expensive and I am his only patient that needs the higher concentration.

Interestingly, my doctor has now ventured into cosmetic botox. I imagine he only does it on the days he does the SD patients so as not to waste the botox. It is only good for a short time after you open the vial. They only give botox injections every 4-5 weeks so I'd have to wait that long to try again. Of course, our insurance always gives us the go around and sometimes we can't get everything settled in time to do another injection. Can you imagine going to an otolaryngologist for cosmetic botox? I wonder if he got the idea to do that from me... I've told him, on more than one occasion, to feel free to inject some of that into my face. I was joking, of course. However, he would always tell me I didn't need it. That is... until the day he handed me one of his brand spankin' new brochures advertising their new venture into the vanity market.

Why not go to another doctor, you say? He's one of two in our town that does them and the other guy is brand new to it. Guinea Pig, I'm NOT. Of course, it seems I have been a bit of a guinea pig for my doctor. If I ever gather up the gumption to give it another go, I will have to make the trek to Denver to see if I can find a doctor that has more experience treating SD.

There are different drugs I could try, mostly anti-convulsants in combination with anti-depressants. I've researched some of the most popular ones but I don't like the possible side effects. Yeah, it would be nice to speak clearly but I'm not sure I'd have my wits about me. Oh! Diane said in her book that she found that two glasses of champagne a night before dinner helped her AND that HER DOCTOR told her to continue doing so but along with some Paxil. Ummmmm... Really? Cause... I'm not sure that's such a good idea! I was under the impression that you couldn't drink while on those kinds of drugs. Well, maybe I shouldn't be so quick to dismiss that... maybe I should be drinking and taking drugs...hmmm. I kid. Can you believe that?!?!?

A couple of months ago Double Shot and I were way early picking up Frappacino from Martial Arts so we went through the Wendy's drive-thru. I can actually yell a bit so I can usually get through a drive-thru with some difficulty. Sometimes I have to drive up to the window and write down what I want. (little side note... when the botox worked I could talk but not yell at all, when my voice is bad, I can still yell in short spurts but not too many times in one day) Well, I ordered Double Shot some food and a small frosty for myself. I thought the total was a little low and when I got up to the window realized why. She gave me a SENIOR frosty!!! She thought I was an OLD LADY ordering. Talk about awkward! Double Shot got mad at me for not making her fix it but I was so embarrassed I just wanted to get away from there as quickly as possible.

Had any of y'all, besides April, ever heard of Diane Rehms? She has a show called, "The Diane Rehms Show," on NPR (National Public Radio), or at least she did at the time she wrote the book (1999). She's pretty darn old (71) so she may not be working anymore.


april said...

I would have asked to have my forhead done too.

Diane does still do her show, when she can. Sometimes she's out having 'voice treatments'. The first time I heard her I thought, "What is wrong with this woman's voice and how did she got on the radio!" But then I got used to it and found many of her shows interesting.

I hope a cure is found for you and if not then you just keep doing what you do. And I can hear you loud and clear all the way out here in blogland.

Flea said...

I take it you've researched alternative remedies nine ways to Sunday, as well as trying singing lessons? Sorry. I love to research, so I immediately started plugging things in to Google.

I happen to love your voice, dear. :)

Coffee Bean said...

Mine is a very difficult case. Many people with SD can still sing. I cannot at all. Everything slams shut. Many people also continue with speech therapy which seems to help in conjunction with the botox. My speech pathologist had me go to the hospital after several months and we had a couple of longer sessions using a microphone hooked up to a computer. Normally, after a session there is notable improvement but there was absolutely no change. It was then that she contacted my otolaryngologist and we did the stroboscopy thing (tiny lit camera down through the nose into your throat). Both the speech pathologist and the otolaryngologist said that speech therapy was a waste of time for me. I couldn't even do the exercises.

I have not tried acupuncture but am thinking about it.

The success rate for surgery is very low and they've found that even with the successful cases, the SD usually returns a few years later.

Karen Deborah said...

I haven't heard of her, but it always helps to find a fellow traveller. Sorry your struggling with that. glad your "talking" on your blog!!

Flea said...

Well it certainly sounds as though you handle it all with a sense of humor. :D Sounds like you've got a few great little percolations around the house who also handle it well.