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Posted by: dadslilcholey ® 12/07/2008, 16:24:46 |
Hello all, I am thinking about getting botox for my abductor sd. I am a bit fearful, any words of encouragement out there? Anyone have this done recently with good results? I am just so frustrated not being able to get my words out, the Dr. in Philadelphia seems to think this will help. Please let me know if anyone has had success. Thank you! |
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Posted by: hedleyd ® 12/08/2008, 11:20:57 |
Hello, I have been having botox for 10 years and it does help my type of sd which is ad. I find no two sets of shots the same and always seem to react in different ways. Sometimes my doctor varies the shots and sometimes they are stronger than others depending on my reaction from the last shots. It does help greatly although I don't think they will ever let me back in the choir! Sometimes the shots miss, sometimes they only work on one side. It is not painful. It takes about 5 minutes and I find the effects start after a couple of days and usually last a couple of months. Give it a go. If you don't you will never know Regards David |
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Posted by: dadslilcholey ® 12/08/2008, 13:38:04 |
Thank you, David. |
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Posted by: Bill Vanderlinde ® 12/08/2008, 11:50:58 |
I have been getting good results for more than 10 years from Botox injections for abductor SD. If you want more details email me off-line at wvanderlinde@comcast.net.
Bill V. AB/SD |
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Posted by: slkoko ® 12/09/2008, 17:23:32 |
I've have adductor SD and have been getting botox injections for around 15 years, just about every 3-4 months. I would say that 75% of the time it has worked wonders for me. I can talk and express all my thoughts without having to wonder how I sound. I love those 2-3 months of forgetting I have SD and can relax to talk to anyone. I find I even initiate conversations with strangers, which is a great feeling. Go for it, you won't be sorry. |
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Posted by: Tradewind ® 12/15/2008, 11:52:06 |
I had my first Botox the lst of October. 1.25mg on each cord.
I had no side effects and so far, I cannot say enough good about this treatment plan. I am scheduled for Botox on the 23rd of December. I think my doctor may suggest a larger amount as the first she noted was low due to my concerns about breathing etc. I completely trust her, but there is a part of me that is thinking I am happy with the first dosage and the results... I assume the value of a larger dosage is more time between injections, but I am not certain.... I assume with the larger dosage, there is the possibility of side effects. Any thoughts will be appreciated. |
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Posted by: Laurie ® 12/15/2008, 13:05:15 |
Hi, there, I am going to assume you have adductor SD. If not, this advice won't apply. Several people have mentioned "breathing" problems somehow associated with SD or Botox lately on the bulletin board but unfortunately, the posts are somewhat unclear and/or make assumptions about the underlying cause which may or may not be true and may or may not apply to your case. With Botox for AD/SD, breathing problems are not the concern (in terms of side effects), breathiness is. While someone with SD may report a breathing issue immediately after the injection procedure for Botox for AD/SD, this may be caused by a reaction to the injection process (some type of laryngospasm) which could happen in extremely rare instances when a needle is inserted into that muscle. It is not related to the Botox itself. It could happen in response to an EMG or even an injection of lidocaine. There are also some people who have a respiratory laryngeal dystonia (alone or on top of AD/SD) where the vocal folds close (inappropriately) during inspiration. This is often treated with Botox and in that case the Botox improves one's breathing. Then there are folks with AB/SD who can experience shortness of breath as a side effect of Botox if it is injected into both PCA muscles and/or the person exerts him/herself. So it's hard when you read a bulletin board post and someone says "I have breathing problems and I get botox" and you may think "oh, me too..." or "oh, better watch out for that." But the circumtances could be very different. So I would base your dosing decision on your own personal experience of what type of results you prefer. A higher dose may give you longer lasting result and/or may cause breathiness. Your decision might depend on a lot of things, including how often you want to return for an injection, when your symptoms returned with this past injection and what your tolerance level is for them. Some people don't seem to mind when their shots start wearing off and they wait a long time before returning, others are bothered by the littlest of symptoms. Some people prefer very frequent injections with no breathiness while others prefer dealing with some breathiness and extending the benefit period a bit. Good luck,
Modified by Laurie at Mon, Dec 15, 2008, 13:15:24 |
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Posted by: tarotpatty ® 12/15/2008, 16:17:38 |
I've just passed the one year mark of botox treatment for my SD. I started out with primarily add spasms, but since those have leveled out a bit with treatment, it has become more obvious that there are abd spasms as well. I had a botox treatment two days ago, the first time in the abductor muscles, so this time, 4 injections altogether. I feel like the benefit I've been getting from treatments every 2.5 to 3 months or so has decreased somewhat. My first treatment was followed by almost three weeks of weak voice, which was frustrating, but then my voice was near normal for several weeks, and that was wonderful. Since then, it seems like a have some mild weak voice the week or two following the injection, some so-so voice for several weeks, and then a fairly sharp decline within about a week or two of needing another treatment. I plan to continue with the treatments because it does help, and for a few weeks I can speak without feeling worn out by the effort. My voice still seems unreliable compared to what it was before, but when my spasms are bad, I have to put so much mental effort and physical effort (remembering what I learned in speech therapy before I was diagnosed with SD) into communicating orally that I usually just keep to myself unless I have something important to say. Getting the treatments minimizes the isolating effect of the disease on me. The injections themselves are a little uncomfortable. Trying to relax as much as possible during them helps. What is the worst part of it for me is that about 20 minutes after the injection, and then continuing for about an hour, I feel like I am choking on my own saliva. It is difficult for me to swallow, and I gag and cough and then my throat ends up feeling raw. Keeping my chin tucked helps cut down on the choking so much, but I haven't found a way to eliminate it altogether. I do tend to choke on liquids for a few days afterwards, if I am not careful. I try to use a straw and take small sips, if possible. After the last two treatments, I have noticed that I've developed flu-like symptoms about 24 to 48 hours after the injection, including achiness, upset stomach and intestinal distress, that last for about 24-48 hours. This is new, and annoying, but if I know that this is likely, and it looks like it is, I can at least have some antacids and pain relievers at hand to deal with it. I'm a little concerned about long-term effects of the treatment, but right now the alternative -- not having botox treatments and living with the spasms -- is not a workable option. |
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Posted by: Keith ® 12/15/2008, 17:52:02 |
Hi, I also have abductor and started out with a doctor in Philadelphia. I'd be interested to know who you see in philly. If you'd like you can email me off the board at keisym@hasdhawks.org and perhaps we can share some info. After an unsuccessful venture in philly with botox, I've been getting bilateral injections from an excellent physician in Rochester and have had great results for the past 3 years. Hope to hear from you again.... Best,
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