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April update – many updates!

Posted by Rob H on April 19, 2013

I have a bunch of updates since my last post, so I’ll just dive right into them.

One year anniversary

First off, we’re quickly approaching my 1 year anniversary for my first Botox injection which was on April 23, 2012. I’ve certainly learned a lot since then and continue to learn every day. One of the things I think of as I look back on that day is the mixture of emotions I had: fear, excitement, anxiety, and hope. All rolled into one day! I remember wondering if it was going to work for me (it did), if it was going to hurt (it did), would I have bad side effects (some, but not bad), and at the time I was also wondering if my voice hold out long enough for my class reunion (it did).

Voice update since last post

Still similar to my last post, my voice has been ever-so-slowly declining. I can definitely feel more strain in my neck, and my voice is more & more “froggy” instead of clear. But still no spasms so I can deal with it! I have had to repeat myself a few more times lately, due to the lower voice quality/tone but still I am having little trouble communicating on a daily basis. I had a Botox injection scheduled for April 15 which I cancelled for two reasons: one, I still want to see how long I can hold out (last time it was 6 months, this time it’ll be at least 7 since the next scheduled Botox clinic isn’t until May now). Two, I was out of town on April 15 anyway. I’ll explain that in a minute.

Otherwise, my voice is following a similar pattern that was happening before the Botox shots last year: it’s better in the morning when I wake up, and gets progressively worse throughout the day. But even at the end of the day, it’s still usable.

One other thing: although I can feel more tightening in my neck muscles, I am not getting the headaches I had been regularly getting. I don’t know what to attribute this to because I haven’t been taking any pain medications but it’s obviously a good thing and hopefully that trend continues.

Vacation

I just returned from a vacation to southern California. We stayed mainly in San Diego and also visited Los Angeles. It was a good time and it was actually my first time there so it was interesting to see a new city. I had visited Anaheim once before for a few days but didn’t get outside Anaheim so LA and San Diego were new to me.

The first five days of our trip, we were in San Diego and last two days were spent in Los Angeles. There’s a dual reason for visiting Los Angeles. One, since we were already in southern CA, I wanted to set up an appointment with Dr. Gerald Berke, who pioneered and performs the SLAD/R surgery for SD patients. He works at UCLA. I wanted to be evaluated to see if I was a candidate, and to get more information on the procedure. I was very happy with the visit, I got a lot of information and all my questions answered. My wife (who’s a nurse) is very helpful to have alongside on these type of visits because when the doctor starts talking “doctor speak”, she can translate for me. LOL

I have not decided whether or not to have the surgery but I wanted to gather as much information as I could to make an informed decision. This was a great way to gather information, straight from the man himself.

The second reason we went to Los Angeles is that my wife and I wanted to see a taping of The Price is Right in person. Well, really we wanted to be on the show (which unfortunately didn’t happen)…but just being there was so much fun, we are already talking about doing it again the next time we visit. We both wore our Cleveland Indians shirts since we are from the area and we knew Drew Carey was from Cleveland as well…and we hoped it would give us an “in” to either get on the show or talk to Drew himself. As it played out, the latter scenario happened and we chatted with Drew for a few minutes. It was cool. The show itself was a pretty good one, I won’t give away the details but those of you with SD will like this episode. It’s supposed to air May 20. If you do watch, my wife and I are sitting in the 2nd row, far left. I am on the aisle where some of the contestants “come on down” and you can probably see me high-fiving them on their way by.

Xyrem

The last update I have for today is in regards to the drug Xyrem. Way back in September, if you recall, I flew to New York to participate in a study for SD patients. Part of the study was to take the drug Xyrem to see if it would be helpful with my SD symptoms. At the time, I took the recommended dosage under the watchful eye of the doctors & researchers at Mt. Sinai hospital. It had little physical effect on me, similar to maybe having a beer or half of a beer. My voice seemed to smooth out ever-so-slightly, but nothing significant.

Since then, I have not taken the drug (although I still have the full prescription remaining). The main reason I haven’t taken it is, I had a Botox shot shortly after the study concluded and since then, my voice has been good enough that I didn’t feel the need to “waste” the drug on a good voice. Well with my voice in a continued state of decline, I decided to give it another try. So this morning I took the same dose and ***WOW*** did it wallop me. I felt very dizzy and basically felt full-on drunk instead of a light “buzz”. It lasted about an hour then quickly faded away and I was back to normal. My voice, unfortunately, didn’t improve. So I don’t know if it’ll be effective for me but at least I tried. I may try again at different times of the day and see if there’s different results but I’m not too optimistic about it.

That’s all I have for today, but feel free to leave any comments/questions you might have and as always, thanks for reading!

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