Posted by: acewood ®
09/13/2005, 12:39:44
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Hi Keith,I haven’t seen Dr. Blitzer but I can relate my experience with botox to treat my ABSD. I’ve had a total of 5 injections and 50 units of botox injected over the period of July 2004 through June 2005. I didn’t have any positive result with my voice after the first four injections. They were all done unilaterally with dosages ranging from 5 to 10 units each time. I convinced my doctor to try a bilateral injection last June with 7.5 units being injected into both sides of my larynx. The past couple of months there has been a slight improvement in my voice. When I say ‘slight’, I mean that there are times when I can produce a better voice as long as I’m speaking softly and I’m not trying to talk too fast. It’s not a ‘night and day’ type of improvement but it is noticeable to both me and to those who are familiar with my voice. There are still moments when my voice tanks completely as well, so like I said, this hasn’t been a miracle transformation. It’s debatable whether or not the botox is the sole reason for the improvement. I’ve been trying to modify my voice the past few months to try and reduce the amount of spasms. For what it’s worth, I’ve also been using some visualization techniques this past summer in an effort to try and heal myself. I’m starting to think that maybe those of us with ABSD need more botox injected in order to have a positive result. The doctors are justifiably concerned about injecting too much and obstructing the airway, but there might be a benefit to injecting more botox into patients that don’t have an adverse reaction to the smaller dosages. I’ve only had one adverse reaction to my injections. I had some difficulty swallowing food after my first one but that disappeared within a week. All of my injections have been through the side of the neck. My larynx was kind of manhandled the last time in order to place the needle correctly and my throat was pretty stiff for a few days afterwards. That was the only injection that was difficult though. I’m going to wait awhile before deciding whether or not to give it another try. It’s been three months since my last injection so I figure if my improvement was the result of the botox, my voice should start deteriorating again fairly soon. Dave
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Posted by: KellyAnn ®
09/14/2005, 08:01:03
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Keith,I have AB and live in NJ. I started to see Dr Blitzer in February 2005. I also have had slight improvement in my voice. On a scale of 1 to 10, before botox I would rate my voice a 3, after botox, a 5. Dr Blitzer is very cautious with the dosages, I have had 2-3 units injected in to the sides of my neck and the same through the front. I got slightly better results when injected through the front. Dr Blitzer injects one side and then two weeks later, you go back and have the other side injected. He is guided by a machine that beeps as he gets to the muscle that needs to be injected. If he goes through the sides, he grabs my neck very tightly and may rotate to reach the correct spot. It is painless and over in a few minutes. He is very patient if you swallow and he has to try again. I have not had any side effects from botox and next time I see him, I am going to ask if he can increase the dosage.
As I said I live in NJ and I take a NJ Transit train to Penn Station and a taxi to his office on W 59th St (between 9th & 10th). It takes me about a half day to get and out. The train ride is 30 minutes and the taxis are lined up outside of Penn Station. Getting back can take longer because you have to flag down a cab and there is always traffic. I, too was very hesitant to go into NY and still do not like it. I have corresponded with a woman who used to go to Dr. Blitzer and now sees Dr. Haben. She gets much better results from Dr. Haben. She says that with Dr. Blitzer, her voice may have gotten to a 5 or 6, but with Dr. Haben, it is routinely a 7 or 8. She said that Dr. Haven uses a camera and injects both sides at the same time. Dr Blitzer will only inject one side and then you go back two weeks later for the other side. I wish you well and hope you let us know which action you take and what results you had. Kelly, AB from NJ
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Posted by: keith ®
09/14/2005, 12:20:59
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Hi Kelly,
Thanks so much for this reply. From the final portion of your post, I think I'd like to give Dr. Haben a try. My only problem is that I am over 300 miles away from him (one way)! So, unless I'd fly, have a transit company take me there and bring me home, or make an overnight out of the visit, I'm not likely to get there.
It is very enticing though, to give botox another try, as I only ever had it done twice, neither of which really helped. I'll let the bb know how things turn out if I manage to get there.Keith
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Posted by: Bill Vanderlinde ®
09/14/2005, 15:43:34
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Keith,
I get very good results with bi-lateral PCA injections from Dr. Paul Flint at Johns Hopkins in Baltimore. The "rotation" method (manipulating the larynx so the needle can come in from the side) works for me, but another option is to go straight in through the front of the larynx and cross the airway, I believe Dr. Bastion favors that approach. As you mention, per oral (down the throat) is also possible but that usually requires general anesthesia.
Swallowing can be a problem if it moves the needle at the wrong time. To avoid that, I swallow at the start of the procedure and then breath through my mouth to keep it dry.
Bill Vanderlinde
AB/SD
Modified by Bill Vanderlinde at Wed, Sep 14, 2005, 15:44:59
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Posted by: carolinakay ®
09/18/2005, 14:33:34
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I have had botox both externally and internally (oral). I did not have any anesthesia at all for either procedure. I would ask, Why do you have to go through the long anesthesia process? My doc just pulled out my tounge and had a scope in to see what she was doing so that she could hit the exact muscle. It was rough but quick. What hurt worst was my tounge being pulled. Good Luck, I am a wimp, if I can do it, any one can!
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