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!

It’s been awhile since I’ve posted a voice sample so I thought I would post one today. Take a listen to the sample below:

As you can hear in the voice sample, my voice is still doing pretty good. If I had to estimate what percentage my voice is, I would say around 65-70%. I can still project my voice and raise my voice, albeit at a lower level than my pre-SD voice but still enough to across what I need to say. I did have a little trouble ordering a meal at an especially loud restaurant on Valentine’s Day but when I say “little”, that’s what I mean. It didn’t prevent me from ordering, I just had to repeat a portion of it which wasn’t a big deal.

As I have mentioned on previous (recent) blog posts, the experience I had for the first month to two months after the October 15 Botox shot was very different from the first shot I had. The side effects were different, the actual reaction of my voice was different, but so far the length of time (benefit period) seems to be similar. This time around, I probably only had what I would call a “good voice” (95% +) for less than a month. But I have had a “usable voice” for most of the past 4 months.

I am signed up to have my next shot done in March but I am hoping I can postpone it to April or even beyond. I would really like to try to stretch it out farther and farther if I can and maybe even overcome the SD completely some day. I’d like to try it at least…before going down the surgery route. I’ve always considered the Botox to be a temporary solution, as I do not wish to have this done for the rest of my life. But it is buying me some time to figure other things out.

One really great thing that happened recently is something that I used to take for granted. I went to a family get-together and NOBODY asked me how my voice was doing, or told me how good/bad my voice sounded. It was a normal, non-eventful day and I LOVED it. I know people mean well when they ask about it but the constant reminders can get a bit aggravating. For me, the best days are the days when I don’t think about my voice problem at all.

If there are any changes I’ll be sure to post them but for now, no news is good news.