Hi,I've been contemplating trying Botox shots, but I'm still
kind of hesitant to try it. I had an appointment scheduled
last week but postponed it until June. (I was recently
diagnosed with AD/SD.
I was wondering if any of you have experienced any permanent
effects due to Botox treatment? I know that the beneficial
effects of the Botox wear off after a while (due to new
nerve connections being formed or something like that).
So it seems to me that there is some permanent structural
modifications as far as the nerves are concerned.
So I was wondering if any of you tried Botox for a while
and then decided to stop treatment whether you noticed
any difference in the quality of your voice (esp. if
it got worse after discontinuing treatment than before
starting treatment).
Basically, wondering if Botox is something that I can
realistically just "try once" without worrying if my
voice will be worse than now if at some point
I decide not to continue with repeat treatment?
Thanks,
Michelle
Re: Any permanent effects of Botox?
Hi Michelle,Funny you should mention this. I was just reading an article today that appears in the latest issue (Jan/Feb 2002) of the Dystonia Dialogue. It was written by Dr. Gerald Berke who was actually writing about the SLAD surgery that he pioneered. He states (talking about botox) : "and the toxin has recently been shown to produce some long term structural changes in muscle cells." As a layperson, I'm not sure I fully understand the implications of this. However, having said that, these findings appear to occur after many years of botox use and many people on this BB have experienced in excess of 30 shots over the past 10 years or so without any observable adverse effects. I don't think it will do any harm or damage to try botox to see how you respond to it. It may take more than just trying it once to see any real benefits. In my opinion, you will not be doing any permanent harm to your larynx as the dosage of botox is so small, and if it does not work, you can always stop, without any permanent adverse effects. Good luck and keep us informed as to your decision. Lloyd Pearson(BC) Canada AD/SD
Re: Any permanent effects of Botox?
Hi Lloyd,Thanks for your response!
I just found a website that has a simplistic graphical
description of how Botox works. ( http://www.genophc.co.za/Botox.htm)
It seems to suggest that the desired effect of reducing
muscle hyperactivity goes away not because the Botox
disappears or breaks down but because new nerve junctions
sprout off the nerve once the original junction is blocked.
This leads me to wonder several things, among them: 1) What happens to all that backed up acetycholine in the
blocked junction? Does it just eventually break down?
2) Once the nerve acquires all these additional junctions,
wouldn't the muscle potentially get stimulated even more
if the Botox does breakdown and the original junctions
get "reactivated"? (Perhaps not if the total amount of
acetylcholine pumping through the nerve does not increase
due to additional junctions.) Well, I'm not expecting you to know the answers to
the above questions, but if you ever find out, I'd love
to know. You're probably right that it won't do any
harm to just try it out and decide if the benefits I'm
able to achieve outweigh any risks. Thanks,
Michelle
Re: Any permanent effects of Botox?
Hi Michelle
I received Botox injections for about 10 years. 3 years ago they started being less and less effective until they no longer work at all for me.
I don't think my voice is any worse now than before I had the injections and I had 10 years of having a good voice. It was worth it.
Ida Neary
Re: Any permanent effects of Botox?
I am on my 5th shot over a one year period. sometimes it works really well and after a few days of whispering, i get my voice back normal and it stays that way for 3 or 4 months. then it comes back to being hard to speak and sounding funny. I am treating with Dr. Ridley in Tampa Fl. He didn't tell me that the botox can't be used after awhile- I found that out from networking with others on the bulletin boards. I don't know what I am going to do when it stops. I am afraid of the surgery at my age-i'm 55. I haven't noticed any difference in before and after the treatment except when i don't take it i get tired just from trying to talk as it takes so much energy. i hope this helps you. cher
Re: Any permanent effects of Botox?
Your comment "that the botox can't be used after awhile" doesn't really apply to its use with SD.Some patients with ST = spasmodic torticollis or cervical dystonia have found that after a series of Botox shots they develop an immunity and the Botox is no longer effective in relieving the spasms. This was a factor in the need to develop an alternative type of botulinum toxin, the type B Myobloc. An ST patient typically receives a dosage of 300 units of Botox or more. In contrast the highest dose I've ever heard of for SD is only 15 units and that isn't common. Typically the dose is about 2.5 units. in my case I receive 10 units, unilaterally, and after 10 years the Botox is still effective. If the Botox is working for you I personally would stick with it and not worry about these kinds of comments from others (did these people have SD?) - they don't apply to your case in my opinion. David Barton (AD/SD, Auckland, NZ)
Re: Any permanent effects of Botox?
David
I have AD/SD and after 10 years of Botox injections, I have become immune to both Botox A and Myobloc. It is rare, I guess, but I am living proof that it can happen. I am hoping they come up with a new strain of Botox soon.
I also feel that people who are getting good effects from the Botox should continue the treatment. I am glad I did. Botox allowed me to talk and do theater for 10 years. I would certainly go back on Botox if it worked for me.
Ida Neary
Re: Any permanent effects of Botox?
Hi all,Thanks for all the reassurance. I guess I'm just
now coming to terms with the scenario that my condition
may not resolve on its own without medical treatment.
Hopefully I won't chicken out when my June appt.
comes up for the Botox. -Michelle
Re: Any permanent effects of Botox?
Michelle, I had to wrestle with the same issues before my first (and, so far, only) Botox. The dr. who diagnosed me offered to give me the first treatment right then and there, which I refused because I needed to get myself well educated prior to taking that step. (The dr. was just fine with that, by the way -- no pressure.) We're talking about a serious neurotoxin here! So I got very aggressive (in an activist sense) and took advantage of every contact I could get. Thank God for Bill Vanderlinde and others with both the SD community at large (this BB!), NSDA, and DMRF. (Bill's one of our moderators.) Bill's contact info. was on one of the brochures the dr. gave me, and he started me off. I got to the local support group, flew to the AZ patient symposium, checked out web sites, bugged people for suggestions about potential alternative therapies, and accumulated a 2" binder full of my SD knowledge base. By the time I went for the Botox (which was two months after diagnosis), I really felt on top of things about as much as I could be. I even took the anatomical illustrations the speech pathologist had given me and checked all the specifics about exactly where and what dosage and all that. Knowledge is comfort, at least, even if it isn't yet power to cure.
So be of good cheer. Learning will help you feel much more confident about making whatever decision you do make -- and we are all different, so there are lots of "right" decisions available.
Linda Adamson
AB/SD, Annapolis
Re: Any permanent effects of Botox?
As for nerves rerouting, that's after surgery when nerves are cut. With a Botox shot, no nerves are cut. You only get an injection. When the Botox wears off--and it will, because it always does--you'll be back to where you are at the moment before the shot. Personally, I'm more than satisfied with Botox. I'm just short of my 24th shot, and I look forward to it. My life sort of operates in four-month cycles, the middle of the cycle wonderful because I can talk normally.I know anticipating the first shot must make you nervous, but I hope you have as miraculous results as I've had. Here's a hug. Myra
Re: Any permanent effects of Botox?
Michelle, I took 34 BoTox injections over a period of 11 years. Most injections were about four months apart. My voice was never as bad after taking injections as it was prior to my first injection. I do not have any permanent damage from taking BoTox that I know of. I quit taking it because the breathy period after injection became longer and longer. Also, Dr. Berke's surgery was available and I chose to have the surgery. I don't think you would have a problem with taking it for a while and then discontinuing injections if you choose. The relief after taking BoTox was so great that I could not wait to get anothr injection after my voice started breaking down again.
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