Fellow suffers - I havnt been on the board for a while since I have been having a roller coaster ride with Botox and thought I would share my experience to date to see if others had similar experiences.First injection September this year trickled into my throat - effect nothing !
Second injection late September - I think 1.5 units(I am not too clear here on dose)into right side - kicked in 2 days after voice PERFECT for 4/6 weeks - only marginal side effect was a small loss of volume - but I was over the moon, I was like a new person (or the person i had been prior to SD !)
6/7 weeks late third injection (the doctor was not happy to do it and wanted to wait longer but then decided on a small [0.75] 'top up' dose as he called it. Result no effect whatso ever !
fourth injection 8th December - (1.75 into right side) - result no effect whatsoever !!!
The doctor cannot beleive that the fourth injection had no effect - the electrical contact was good !!
Anyway he now says that in early Feb he is willing to inject both sides (dose about 1.75 I think ) under general anasthetic so that he can be abosoultly certain about getting it in the right spot.
He is now even questioning if i have SD !!!!! (but as I pointed out he diagnosed SD in the first place and the 2nd injection was like a miracle )
Any - any - any - comments feedback will help with my sanity - 4 botox injections in 4 months cannot be right. Bytheway my SD is the more common strained voice type !
love to all on the board and have a peaceful and wonderful Christmas.
Re: trials and tribulations of Botox !!!!!
Sounds like your doctor may not be that good at injecting the Botox. If you got some relief from a shot, I would recommend going to another doctor.A couple of comments:
1)Your dosage is on the low side. The "average dosage is 2.5 units
2)Getting immediate relief from Botox is different than what most people experience. Usually after getting a Botox shot there is a period of time (a few days to several weeks depending on dosage amount) where someone' voice is very low but spasm free. Gradually it gets stronger and then the spasms come back.
Re: trials and tribulations of Botox !!!!!
When I got botox, my physican would tell me that if the botox didn't work it was either a "bad" (weak) batch [of botox] or bad technique by the physician. Sounds to me like it is more of the latter than the former in your case, given the number of times you were injected. I received shots for 4 different physicans over a 10 year period. Some gave me better results than others. And by "better" I mean duration of desired affect. John
Re: trials and tribulations of Botox !!!!!
I think a second opinion might be a good idea at this point. I have to assume you are going to an ENT doctor. You may want to add a neurologist to rule out other problems. My first shot took six weeks and speech therapy. I hope this helps. My first shots were 3.0 and 3.0. I maintain on 2.0 and 2.0. I thought at first it wasn't going to work for me either.
Re: trials and tribulations of Botox !!!!!
I started getting injections in 1995. The first one didn't take at all. After that they were fairly sucessful. I got 3 units in each side every 3-5 months and most injections took. This summer I had to switch to a different doctor and have had two injections done by him. The first one only lasted a few weeks and the second one didn't take at all. I'm currently trying Neurontin since I'm sick and tired of the Botox roller coaster. Good luck, Cindy
Re: trials and tribulations of Botox !!!!!
It seems each and every time I get a shot its a different experience. I got a shot in the end of october, it took 3 days to kick in, but I never got really breathy and my voice only "lasted" about 2 weeks. I got a follow up the middle of Nov. and for the first time ever, I actually got what some would call the laryngitis voice for about 9 days. That has never happened to me before, I had only experienced mild breathiness, kinda like Marilyn Monroe but I couldnt talk loudly. Now my voice is still ok, but the spasms are staring to creep back in. Before I moved here, my shots were fairly consistent, but they never lasted longer than 8 weeks. Am I the only one that has to get shots so frequently? I hear everyone talking about going 3-4 months between shots, that would be heaven! I feel like a freak! I am also getting way bigger doses than most it seems. In Oct I got 5.0 on each side, then 2 weeks later I got 2.5 on one side and 5.0 on the other. I really think I need to go up to 7.0 on each!
Re: trials and tribulations of Botox !!!!!
Hi Nicole. I have had 5 botox injections so far and plan to have
my 6th in mid-January. I usually wait between 3 and 4 months between
injections. This does not, however, mean that my voice is good that
entire time. Boy do I wish that were the case! After about 4 weeks of breathiness I end up with about 3-4 weeks of a very good voice. Then
botox slowly begins to wear off, usually wearing off enough to make
me want to go back at the 3rd month but sometimes (i.e., this time) I put it off for fear/dread of having a breathy or inaudible voice during
the holidays. I'd rather deal with the strain/tremoring/spasms that be
overly breathy. Of course, I second guess that decision when I walk
around exhausted as heck from speaking through the symptoms, but that's the way it is for now.I actually haven't met anyone (in person -- where I can hear their voice as opposed to trusting what I read) who gets 3 or 4 months of
an ideal voice from botox (though I've heard these people exist)... it's more of a cycle where there is some initial breathiness, followed by a good voice period, and then the unfortunate wearing off time. It's just that during the wearing off time one's voice may not be bad enough to go back for an injection, but it's certainly far from being spasm/strain free. You can always try a new ENT (even if only for one injection) to see if that makes any difference. Good luck and write to me anytime on personal e-mail about botox experiences. I always love to share stories on that topic. -Laurie (AD/SD, New York City)
Re: trials and tribulations of Botox !!!!!
I would add that botulinum injections for SD are really a palliative and moderate the symptoms somewhat. I've had about 38 Botox shots over a period of 10 years - and throughout most of that time I'm well aware of the underlying SD. The thing about Botox is that it definitely relieves the effort, and the bizarre sounding spasms of an SD voice. To me the test of whether it is worthwhile isn't whether Botox gives you the perfect pre-SD voice (it definitely doesn't) but rather whether a patient prefers the reduction of symptoms and speaking relief so much that they are prepared to continue with Botox treatment.Another advantage of botulinum toxin for SD is that unlike surgery there don't seem to be any permanent risks (eg of losing your voice completely), it is reversible in the sense it wears off, and also it is not a chemical which alters mood, sensation, digestion etc - which is often the case with some of the recommended dystonia meds. David Barton (AD/SD, New Zealand)
Re: trials and tribulations of Botox !!!!!
I would see another Doctor. My wife goes to Johns Hopkins and gets her Botox injections. She gets 1.5 units in each side and have never had a problem with it "taking". The shots generally last 5-6 months. I would definately seek out a doctor that specializes in SD Botox injections.
|