how often do you have botox injections?

I had four injections in total, every three months for about a year last year, but each time they had extremely varied effects.

The first injections I had, I remember being extremely nervous as I had no idea what to expect! but within a minute it was over. I couldn't talk at all for the first few days, then I could barely manage a whisper for about 4 weeks. But when my voice did come back it was really good until my next injections. It felt strong with no spasms or breaks.

The second one, the doctor lowered the dose, hoping that my voice would return quicker than 4 weeks. It did, but the results didn't last as long.

How does everyone else get on with their botox injections? How often to you have them and how long do the effects last?

I have never had them before, but I really could do with them. Tell me, how did you first find out you had Spasmodic Dysphonia?

Hi LilMissAnna, welcome to the forum! You can read my story so far with Spasmodic Dysphonia on this part of the forum - https://spasmodicdysphonia.forumotion.com/general-sd-discussion-f1/welcome-to-the-forum-t3.htm

Have you recently been diagnosed with SD? or have you had it for a while?

I've had it for a long time now. I am almost 16. As far as I know I have always had it. I guess when I was younger I was too young to notice it myself. But as I was getting older I started to notice these inconvenient pauses in my sentences and my voice sounded strained. My family always took the mick outta my voice by repeating what I said (which would be one of those horrible pauses). Anyway, when I was 13 I had my first laptop. Like you, I did some research and eventually found what I had been suffering from. I told my Mom, but she didn't really seem to surprised. She just said I was clever for finding that out (I still don't know if she actually did know that I had this voice disorder). Anyway it was only last year when I did go to the doctors and he reasigned me to a therapist. So I went there and had to answer some questions, but it was typical. I don't think even the therapist knew my condition. I havn't been to one since, my voice hasn't been as bas as before though, I can control it a little more now. But it is still bad and I am really thinking about having botox injections.
What do you think about this?

When I finally received my SD diagnosis, the search was on for treatments. Once I found that botox was the standard, I was on a search for a doctor that did those near me. I found a doctor 4 hours away that was familiar with the condition and did the injections.

My first injection was a little painful (OK a lot). I had watched some online videos of people getting the injection, but it looked like they first received a "numbing shot", then the actual injection of botox. My doctor used a needle with the sensor and the loud machine to locate the right position (with no numbing medicine) then did the injection. The first side of the vocal cords took a few moments to locate, but went OK. The second side (left or right, I don't know) was awful. The doctor kept moving the needle trying to find the right place, the feeling of the needle in my neck and throat was causing me lots of anxiety and I wanted to cough or swallow and I couldn't. It was awful. She had to remove the needle several times before she got it in the right place. On the positive side, within about a week, I had a normal sounding voice. The effects were short-lived though and within 6 weeks I needed it again.

The second time, the doctor increased the dosage to try and obtain a longer lasting effect. Since I had no side effects the first time (no weird voice, no breathiness, no trouble swallowing or drinking) she went with a higher dose. This time the location of the right injection spot was awful. There were about 5 doctors in the room all watching and nothing went right. I was poked in the neck at least 6 times trying to find the right place, I was sweating, pale, in pain....and when it was over, I had a bruised throat and soreness for days. The worst part was that I had no vocal improvement. It's been more than 2 weeks and I still sound awful, hoarse, voice breaks, etc.

I was so pleased the first time, I want to try again, but am already scared....

--Amanda

Sounds awful, I would of paniked if I was in your position. I'm also scared of having the injections. I wish there were another treatment. Speech therepy isn't any good either because no matter how you try, there are still pauses in the speech. It's a physical thing hat can't be helped by speech therepy.
My speech hasn't been so bad lately, I guess it's because I'm not as stressed. Stress makes my talking reaaally bad.
How long have you had SD for?

It's me again...you asked how long I've had SD. I am 39 (almost 40-so so so sad) and I was officially diagnosed sometime around April of this year, so it's only been a few months. I actually have had the condition for a little more than 1 1/2 years though. I spent a lot of wasted time thinking (or was told) that I had some type of acid reflux disorder first, then asthma, etc. I started seeing a speech therapist after I got the acid reflux diagnosis because it was supposed to help with the hoarseness. It was actually my speech therapist who suspected I had something else. I saw a neurologist and also a otorhinolaryngologist (throat specialist) When I went to see the throat specialist, I was given a videostroboscopy test (where they place the tiny microscope through your noise into your throat). The test revealed that I had a small tumor near my vocal cords and that I had some serious spasms happening. I had surgery to remove the tumor, and was hopeful that my voice would be normal again (but the doctor had told me that the conditions were not related and it was just a coincidence that I had a throat tumor). Sure enough, the surgery went fine, but no change in my voice. After I had some healing time from that surgery, I tried the first botox injection..... By the way...I do NOT drink, have NEVER smoked, don't really have any type of dystonias in my family history that I know of...so why me??? That's the big question (besides how the heck to get better, of course)

Thats my story...Take care,
Amanda

yea im scared an all , but never the matter therz alwayz sunshine after a rainy day

I just had to say that the doctor DOES make all the difference on the amount of discomfort and the outcome of the injections. I finally changed doctors and have been very pleased with the new one. My new doctor does numb the airway a bit, which relieves the anxiety and the discomfort. I think that the more experienced doctors are much more skilled in locating the right position to do the injection and it takes them much less effort. I guess the key is finding a doctor who has served as many patients with SD as possible, not someone who is still learning and who has had limited experience. No one needs to be a doctor's "pin cushion".