Posted by: Bill Vanderlinde ®
07/14/2004, 13:58:59
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Hi Jessica,
There have been several threads on this topic lately:
http://www.dystonia-bb.org/forums/sd/posts/20530.html
http://www.dystonia-bb.org/forums/sd/posts/20427.html
http://www.dystonia-bb.org/forums/sd/posts/20480.htmlThe short answers are:
- 6 units in each side is a typical amount for AB injections.
- for a new patient, most doctors would wait about six weeks between doing the two sides.
- once the doctor has measured your response to the BOTOX, bilateral injections the same day are probably safe and may be more effective than separate injections.
- two weeks is probably too short a time for repeated injections due to the antibodies. Waiting at least a month would be safer. Also it appears that you either misunderstood the doctor in Michigan or he mispoke regarding the side effects of AB injections. There are some swallowing and choking problems from AB injections that can be caused by spread of the BOTOX into other muscles. So an accurate injection may avoid those side effects. But the shortness of breath really isn't avoidable. The AB muscles are used to open the airway for breathing, so if you weaken them with BOTOX then by definition you will tend to restrict the airway, causing shortness of breath. The only way to limit this side effect is to reduce the dose, but that may limit the voice benefit. A list of physicians who perform BOTOX for SD can be found here:
http://www.dysphonia.org/nsda/healthcare/
I'm not sure which physicians you are referring to in Ohio and Michigan, but if you send me a private email with their names I'll be happy to offer a guess about who might have more experience. I hope the treatment works out well for you. Best Regards,
Bill Vanderlinde
AB/SD Columbia, Maryland
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Posted by: Jessica Peters ®
07/14/2004, 15:57:37
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Thank you very much Bill. I appreciate your help. I will email you regarding the doctors' names. I believe the doctor in Michigan has a lot of experience but I wonder why he said he would have me come back two weeks later to inject the other side instead of a month since this will be my first time and I could develop antibodies. What exactly does that mean about the antibodies. I just figured it means the botox would go against the first injection and not work at all then. I am going to call him about the antibodies and two weeks time and see if he will see me a month later.
Are you able to run still after your injections? I am very athletic and would be very disappointed if I cannot ride a bike, work out, etc. for weeks to several months after the injection. Thanks again. I appreciate your feedback.
J.P./Cleveland, Ohio/ABSD
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Posted by: Bill Vanderlinde ®
07/16/2004, 08:55:52
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Jessica,
If someone has developed antibodies that means that they have become permanently immune to the BOTOX and will not receive any benefit from future injections. Usually this happens only after repeated injections of high doses of BOTOX. However, many repeated low doses at short intervals can also cause immunity because of the "inoculation effect". An Allergan rep told me that they recommend no more than 300 units every six weeks. Of course 300 units is a huge amount compared to what is used to treat SD, but the time delay is as important as the dose for considering the risk of developing immunity. My doctor says that Allergan is being very conservative and four weeks is fine. So maybe two weeks is OK but I think most doctors would avoid that short a time between injections.
So to answer your original question, there isn't a risk that the second injection would "go against" the first one. Rather, the risk is that repeated frequent doses could make you immune to the BOTOX.
I don't run but I work out and use an exercise bike. After getting a AB injection I notice I am breathing harder, but I can still exercise. However, each of us responds a little differently to the BOTOX. A woman in my support group received the same bilateral AB dose I did and she found herself getting winded from walking up a flight of stairs. This treatment tampers with your breathing mechanism and that is not without risk. That is why most doctors will inject both sides of an AB patient at the same visit only after they have calibrated the dose to the patient. They can use a device called a laryngescope to see that you still have some motion for breathing in the first side before they inject the second side.
Bill V.
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Posted by: fOSTERKAPPY1 ®
07/19/2004, 02:45:31
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Hi Jessica,I have received inj. in one side only and it never worked for me. About 6 wks. ago my doctor finally decided to go for it and inject both at the same time. We started very low dose at 5 one side and 1.5 on the other. I called in and reprted no change. He had me come in and he examined my airway and cords. He then added another 1.5 to a total of 3. I keep improving so far but nothing started working until a few weeks after the dose was increased. I had no voice and could only whisper before. This is giving me a hoarse, low sounding voice. It is great compared to what I had. My doctor was against the idea of both sides at once but decided in my case he would give it a try. It was scary for both of us, I did feel out of breath but after examining me after the last addition to my dose, he said my airway was so good I could run a marathon. Just start small and go in for lots of exams and keep increasing until it works. Dr. Thomas at the 2004 symposium stated that if botox is not working it is either not being given correctly or it is a misdiagnoses. Bold statement that made a believer out of me and hopefully most doctors will try to become more aggresive without compromising our health. Best wishes. Kelly AB 2yrs
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Posted by: Ida ®
07/19/2004, 08:37:28
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Is Dr. Thomas saying that there isn't an immunity to Botox?
Ida
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Posted by: Snowie ®
07/19/2004, 08:02:22
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Hi there,
I have ab/sd, and would be in serious trouble If I were to get both sides injected at the same time, as I have quite significant breathing problems with one side being done at a time, with a two week gap. Last time round my doctor left it a month in between injections. I had the second one last week, and the swallowing and breathing is a little easier.I think everyone is different and its probably best to be cautious, and work from there. I do get asthma so this probably contributes to the breathing difficulties. There seems to be quite a few variables involved. I think I would prefer to go fot the two week gap for the first time, if I were you, and then judge how you respond to that, re: your breathng and swallowing. And if that works fine, that I would be more confident in saying go for both on the same day next time around. I think caution is needed ...... but then thats me ! lol. Good luck to you,
Snowie Ab/Sd London, UK
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Posted by: fOSTERKAPPY1 ®
07/24/2004, 01:37:35
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I second that about caution being needed. You have to keep going in and make sure it is gradually done. Of course, try one side first because some people do not need both sides. Mine is very severe and one side does nothing for me. I also have such a large space between the cords because the muscle is so strong.
The bi-lateral did the trick. It is however, very scary, because you don't know about the breathing issues until you go for it. I did and it worked, it is not great, but it is better. I feel it was worth the risk because it turned out OK. I am glad my doctor was cautious. Best wishes, FOsterkappy
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Posted by: Lu ®
07/23/2004, 21:36:16
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Dear Jessica,
I had both sides done on my first and only visit for my Botox injection.
They were done at the Mayo/Scottsdale. It was never an issue of doing one side at a time. They I assume, do both sides for AB's. It was never discussed any other way. I was injected on the sides.
You've gotten some invaluable info. from many wonderful/knowledgable people on the B.B.. It's got me guessing now?
Best of luck!!!
Lu/AB
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