Re: Here's my story
Hi Lorraine, and welcome to the NSDA bulletin board!My take on this is that what you have experienced is not uncommon. The botox injections can be very variable, both between patients and within an individual patient's experience. On the bulletin board, we have experience with both unilateral and bilateral injections - there is no consensus that one method is better than the other generally, but with individual patients it does make a difference. In my case, I prefer unilateral because I experience less breathiness after the injection than I do with bilateral shots. The first injection can wear off quite quickly (faster than subsequent ones) and I'd also speculate that your dose, first time, was too low - although the right dose is only arrived at after a series of injections over time. With your third injection, it sounds like it is probably working as it should. Your voice should improve over the next few weeks. Make sure you ask and keep a record of the dose given each time - it's important that you work with your doctor at arriving at the best treatment pattern. Good luck, and let us know how you get on. David Barton (AD/SD, Auckland, New Zealand)
Re: Here's my story
Hi David!
Thank you for your reply and advice. I didn't realize it may take this long for the botox injection to work (based on my first experience when it "kicked in" after about 10 days.) I will find out how many units the doctor is injecting. He had told me he was injecting 3 times the amount as the first time (whatever THAT was---I have a tendency to "freeze up" when I'm at the doctor's, and never ask all the questions I thought of, on the drive down there.) I have also noticed recently that my voice is pretty decent, then suddenly bad again--so maybe it is trying to work after all! Thanks again, David, for your help. You seem to be very knowledgable on this and I respect your opinion.
Re: Here's my story
Hello Lorraine...I've been getting injections for a little over 2 yrs. now and as David says, it takes a while to stabilize on the proper dosage for the patient. I now have 2.5 units injected unilaterally. I had 2.5 in each side a couple of times but the breathy stage was extended and aspirating liquids was a much greater problem. I also remember not being able to cough productively. I was beginning to believe that the side effects of the chords going essentially flacid was at least as bad as the strangled voice. I now have the unilateral injections. Unfortunately the injection I had in early December did absolutely nothing...zip...nada. I think he actually missed my vocal chord. But what can a guy expect for a mere $1200? gavin AD/MTD
Re: Here's my story
Gavin,Maybe the missed botox shot could explain the swollen ankles? Private joke folks!! David
Re: Here's my story
David...You may be on to something there. If a guy could target that swelling sort of like a smart bomb....hmmmm. gavin
Re: Here's my story
Now see, that's just it----I have not experienced difficulty swallowing liquids at all (my doctor had recommended sticking with carbonated drinks) neither when I had both sides injected or when I had just the one at 3 times the original amount. And my real "breathy" stage only lasted a day or two. This seems to truly be an unique experience each time for each person. I unfortunately shared your experience, Gavin, of it not working at all-----very frustrating (not to mention expensive)
Re: Here's my story
I just want to say I'm glad Gavin hasn't lost his sense of humor! (losing our voice is bad enough!)
Re: Here's my story
Lorraine, I too tried botox in 1996 (a total of six injections) to no avail! I still sound like I have laryngitis most of the time. I met someone who goes to Michigan for injections and she made a "before" and "after" video. I saw the video - it was amazing how well she could speak after the injection. I am going to see her doctor and hope that the botox improves my voice this time. I'll let you know if there is any improvement. By the way, I am 52 years old and have had S.D. for eight years now.
Re: Here's my story
Mary---Good luck with the new doctor! Although I wasn't properly diagnosed until '96, I began to have symptoms in my early 20's (I'm 44 now.) I was very happy with the quality of my voice with the first injection, but extremely disappointed with the duration (about 10 days). With this last injection, my voice is s l o w l y getting a little better, but no where near the quality of the first time. I'll try a couple more times just on the one side. If that doesn't improve, then I'll have both sides done (which was done the first time) Let me know how you make out.
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