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Posted by: Bob C ® 09/06/2003, 08:25:43 Author Profile |
I am a 52 year old physician with ADSD and Meige syndrome. I've been taking Botox injections for my voice for almost three years. Although I think they may help a little, in general I've been disappointed with the results. I've tried both bilateral and unilateral (I prefer unilateral - fewer side effects), but neither has resulted in the improvement of my voice I'd hoped for. I also take facial and neck injections, again with only slight improvement. I'm thinking about trying medication, even though most research has been disappointing. I take a low dose of a benzodiazapine, which seems to help the facial spasms a little, but does nothing for my voice. I have talked with a Neurologist informally who recommended trying Parkinson Disease medication, eg Sinemet, Mirapex, Permax, Requip etc. Other Neurologists have advised against it. As I can't find any medical literature for or against these medications, I was wondering if any of the Bulletin Board members have had experience with these or other medicines. Thanks. By the way, this is my first posting on the BB. I'm not Bob Campbell, the webmaster. I'll change my login to my full name, Bob Cramer. I live in central Illinois. |
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Posted by: Lynne Martinez ® Moderator-LM, Moderator-LM 09/07/2003, 09:26:49 Author Profile |
Hi Bob, Welcome to the SD Bulletin Board and glad you have joined us. Sorry to hear about your disappointing experience with Botox but you may want to try another doctor before you give up on it. I'll write you later on private e-mail with some information I learned yesterday (on the same subject you asked about - certain oral meds) at the excellent Pacific Regional Dystonia Symposium in Irvine, California. I have no personal experience (just family experience, due to family members with Parkinson's) with the meds you mention but the information was good enough to share. Most SD'ers don't have alot of experience with the types of meds you ask about, since they don't traditionally work for SD (PD and Dystonia manifesting differently as "brain circuit disorders") but maybe you'll get some other feedback from BB participants who also have family members using them. Good luck and I'll get back to you when I'm not paying for online time by the minute. --Lynne (AD-SD; Northern California) |
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Posted by: John Comer ® 09/07/2003, 19:16:10 Author Profile |
Welcome to the bulletin board Bob. I think the medical community could learn quite a bit from our postings as you will learn. I have ABSD and have now had five Botox injections with no positive results. I agree with Lynne that you should check out another doctor. I might suggest that you get in touch with Dr. Robert Bastian; Professor of Otolaryngology, Head Nead and Neck Surgery; Loyola University of Chicago Medical Center; Maywood, Illinois. He attended our last symposium in Washington and appeared to be very knowledgeable. I have been to the NIH and to Mayo Clinic and although I have not personally seen Dr. Bastian I think it is worth a try. At least he is not too far from you. Good luck. John Comer ABSD Minnesota |
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Posted by: Bob C ® 09/10/2003, 09:19:06 Author Profile |
Dr Bastian is my treating physician. He is a superb and caring physician, and I would recommend him to anyone who has voice or swallowing problems. The last time I saw him, in early July, he told me he was moving to (I think) Good Samaritan Hospital in the Chicago area, where he will focus exclusively on voice and swallowing disorders. I also have an excellent Neurologist in Springfield, IL, Dr R. Stanley Burns, who treats my oromandibular dystonia. So the problem is not lack of expertice, it's that Botox just doesn't significantly alleviate my symptoms. I am not resistent to it's effects; even very small doses tend to cause significant and prolonged hoarseness. That's why I switched to unilateral injections. The side effects are much more tolerable. I'm anxious to see how the dextromethorphan study turns out. In general, most medications have been ineffective or poorly tolerated. I did extensive research when I first developed SD. It was interesting that after the first reports on Botox (Drs Brin and Blitzer, among others), literature on medication treatment virtually disappeared. Although it is by far the most effective treatment, there appear to be many people like myself who have found Botox to be disappointing. I continue to take it, I think it helps a little, but sure would like to find a complementary medication or treatment that would give me more relief. As I mentioned previously, one Neurologist with experience treating dystonias recommended anti Parkinson Disease medications, although other Neurologists have disagreed. Before making myself a guinea pig, I hope others may have had some experience with these medications, and would share their results with me. Bob Cramer, ADSD/Meige syndrome, IL |
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Posted by: Bob C ® 09/21/2003, 18:57:45 Author Profile |
I cautiously and tentatively tried low dose Mirapex recently. Maybe because of the lack of encouragement from other dystonia sufferers, I didn't push it. Didn't seem to help with either my SD or Meige syndrome at low doses (0.125 - .25 strength) and it seemed to cause drowsiness and a little nausea, so I quit. Although I prescribe meds for my patients I'm skittish about taking pills myself. So, I guess I'm stuck with coping and Botox shots. Thanks to those who responded. Bob Cramer ADSD/Meige syndrome, IL |
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Posted by: Richard Callen ® 09/22/2003, 12:26:56 Author Profile |
"...Botox just doesn't significantly alleviate my symptoms. I am not resistent to it's effects; even very small doses tend to cause significant and prolonged hoarseness. That's why I switched to unilateral injections. The side effects are much more tolerable..."
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Posted by: Voiceless not Silent ® 09/11/2003, 09:52:39 Author Profile |
I do not have SD, but find that Sinemet eases my swallowing and tongue spasms, in addition to easing spasms and making movement much freer in the rest of my body. I am also aware of others with facial, oromandibular and palatal spasms who have used “the Parkinson’s drugs” to ease their symptoms. While I am not aware of anyone who has tried Sinemet specifically for SD, it may be worth a try, and it may be effective if the neurotransmitter imbalance is a result of insufficient dopamine. If it isn’t effective, use of that drug could be discontinued and altering a different neurotransmitter could be undertaken separately (Artane or Cogentin for acetylcholine, for example, or Lexapro for serotonin, etc.). It seems that the neurotransmitter imbalance causing dystonic symptoms is as varied as the people who show symptoms, so what works for someone else might not work for you, and what works for you might be for you alone. Especially in your case of multiple dystonias, you obviously have many factors you will consider relative to determining if something is “working.” A lot of the literature that cautioned against the use of Sinemet (which may be the reason for your neuro’s caution) dealt with the use of Sinemet early in the course of PD because there seemed to be a correlation between use of Sinemet and more rapid death of the dopamine producing nerve cells in a sort of “burn out” phenomenon. But PD and the dystonias are very different in that PDers show symptoms because the part of their brain that produces dopamine is dying, and in dystonia, thankfully, we don’t seem to be dealing with the demise of brain cells, just the inability to properly manufacture and use certain neurotransmitters. (I know that, as a physician, you know the difference, Bob; I’m trying to be clear for the other readers.) In all my reading about movement disorders, I have never seen any literature indicating that there is a “burn out” phenomenon with use of Sinemet outside of Parkinson’s. For example, people with Segawa’s disorder (dopa responsive dystonia) take Sinemet for a lifetime without developing any of the “burn out” symptoms. I hope you will keep me posted if you determine to try to “Parkinson’s meds” so I can expand my knowledge based on your experience. As a physician, your evaluation is particularly valuable. - Deb |
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Posted by: Lynne Martinez ® Moderator-LM 09/11/2003, 13:58:30 Author Profile |
Hi Bob, I went through all the info from the Pacific Regional Symposium in Irvine this past week-end, re a presentation made on "Non-Toxin Treatments for Dystonia" (AKA: numerous meds in various categories, such as Sinemet, Baclofen, etc.). Often given to Parkinsons patients. I took written notes and also recorded it. The recording is only borderline understandable, but bottom-line, with these meds - we all (with SD) have "small muscle dystonia" whereas many of the Parkinsonians meds can work for forms of dystonia which engage the larger muscles with more painful, fully-encompassing spasms over the entire body range. The doctor who made that presentation in Irvine was Dr. Mitchell Brin, who you mentioned above. It's important to hear of results in patients such as Deb has described above. She has personal experience so that's valuable. The key elements from Brin's talk last Saturday (nothing to do with "voice" specifically) were that some of these meds are worthwhile pursuing for various forms of dystonia, and to work with your doctor and sometimes the doseage might not be the same as recommended. Brin mentioned that sometimes a doc may give a dose way above what is recommended, for various reasons. That sounded a bit scary to me but you, as a physician, may be able to understand why he said that. So, possibly you could contact Brin's office for a copy of his presentation or maybe you could just call him, as a fellow physician? He seems to know a ton about the meds you are asking about. As everyone knows, Brin and Blitzer were the innovators of Botox for voice patients. Please keep us posted on all of this. We could benefit from the experience of a physician who is also a voice patient. I tried Neurontin for awhile last year and got really sick on it. But various treatments seem to affect all of us differently. I'm glad to know you were treated by Bastian. He is so esteemed in the SD community, being so knowledgable and tuned into patients' concerns. I've met him at several symposiums. He's an asset to all of us. Best wishes, --Lynne (AD-SD; Northern California)
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