OK to ask for Botox injection success rate?


Posted by Darlene Dollard ® , Jun 08,2001,22:08   Archive
Hi everyone,
Thanks for all of the great information on the BB. It certainly is apparent to me everyone really cares about one another. If you've read any of my other post you know I'm new to this and was recently diagnosed with aDductor SD. I had my first botox injection 11 days ago (1.5 units in each side) and it didn't work. I know from the BB it's important to get the dose right, the injection site has to be precise, etc. I'm not sure if my problem is the dose was too low or the injection wasn't accurate enough (the needle became plugged - they believed with cartilage and the injection on the second side had to be done again - it was done very quickly and I just didn't feel confident it was precise). Anyway, I'm faced with a decision because my neurologist won't consider another injection for 9 - 12 weeks and I'm worried if my ENT (who does the injections -it's team thing - one ENT, one neurologist)doesn't have a good record, I might once again have an injection that doesn't work and have to wait another 3 months, etc. So, I'm wondering how you guys have found out if the doctor giving you the injection was good? I suppose I can just ask him for his success rate (if they keep track of such a thing) but I really don't want to risk insulting him. These 2 doctors are the only game in town. They also agreed (very nicely) to give me my first injection during their lunch hour (not during their regular weekly clinic) since the clinics were full for the next month and my appointment had been cancelled the week before due to the death of the ENT's dad. So, they certainly seem to be nice - and I don't want to risk insulting them, but I REALLY don't want to risk another failed injection. Any thoughts?
Thanks,
Darlene



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Re: OK to ask for Botox injection success rate?

Re : OK to ask for Botox injection success rate? --- Darlene Dollard
Posted by marykriss ® , Jun 09,2001,04:31 Top of Thread Archive
Hi Darlene,
At first it is normal to have a trial and error period. The doctor has to figure out what dose works best for you. For me it took a few times.

Good Luck,

Marykriss




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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- marykriss
Posted by Darlene Dollard ® , Jun 09,2001,08:15 Top of Thread Archive
I know - I do realize it's normal not to work at first - it may even take 3 or more tries. That's what worries me - since my doctor seems to be so much more conservative than most of your doctors seem to be (reinjection in 4 weeks) that could add up to an extremely long time without a voice - waiting for it to eventually work. My neurologist insists there is a real threat of antibody development and, after I sent him information from a post I rec'd here stating the new Botox no longer posed a threat, he told me that's what the pharmaceutical companies (Allergan) want you to believe so they sell more Botox.



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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Darlene Dollard
Posted by Anne Brett ® , Jun 09,2001,10:26 Top of Thread Archive
You are certainly within your rights as a patient to ask how many injections for SD he has done and also within your rights to request references - patients he has injected successfully. You didn't mention him using an EMG (electromyography machine) while giving the Botox injection. The majority of physicians use this EMG machine for the precise guidance to hit the correct muscle that is in spasms. Each vocal cord has 5 muscles and it's imperative to get the Botox injection in the correct one, otherwise it won't work!

Another thing I disagree with. It is highly unlikely and very rare for an SD patient to develop anti-bodies to Botox. We don't receive high dosage injections of it. It has happened, but it's very rare.

The doseage for each SD patient will never be the same. It's very individualized. You said you were given 1.5 units in both vocal cords. I've run the range of dosage from 7.5 units in one cord to 6 units in both cords and finally arrived at my "successful dosage" of 12 units in one cord to alleviate having so much of a breathy period after the injection.

I'll also add that when I was taking the Botox injections for my SD (severe ADductor with tremors) I traveled 350 miles one way to go to the experts at Baylor Medical University in Houston. There is nothing more frustrating than going through all the mess of having a Botox injection, having to pay for it, and it not working! That's the pits and I've been through that deal before so I understand where you're coming from.

I'd ask questions and go from there. Good luck!

Anne




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Re: OK to ask for Botox injection success rate?

Re : OK to ask for Botox injection success rate? --- Darlene Dollard
Posted by cinthia ritchie ® (Cinthia Ritchie,cinthia ritchie), Jun 14,2001,02:04 Top of Thread Archive
Hi Darlene!
Please DON'T worry about insulting the doctor; doctors insult patients all the time and I really doubt that they waste much sleep over it. My very first Botox injection didn't work; I had a second one two weeks later, which worked very well. My third one was a double-doser and was terrible! I also think that my doctor isn't very practiced in giving Botox injections; although he's done it before down in Texas, I am his only patient up here.
I think it's VERY important to seek a physician who knows what he or she is doing and is very practiced in the injections. If I decide to have another round, I plan on flying to Seattle or Portland and doing it right. So if you're not happy, please shop around for another doctor. Or gather documentation on the low incidence chance of building up a resistance from frequent shots, present it to your doctor and demand another injection. If he refuses, well, you know he "ain't" the doc for you.
Take care. Don't give up!
Cinthia



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Re: OK to ask for Botox injection success rate?

Re : OK to ask for Botox injection success rate? --- Darlene Dollard
Posted by Jacqui Gross ® , Jun 24,2001,00:00 Top of Thread Archive
I think the most important thing is to find a truly qualified
doctor who has ALOT of experience in dealing with SD. I was lucky
in that I was diagnosed at the Mayo Clinic in Rochester and he
recommended Dr. Truong in L.A. to me. The injections he's given me have
always been successful. He started with a high amount and worked his
way down until we found the amount that was right for me (took almost five years to find the perfect dose). Everytime I go somewhere else
(only twice) I have NEVER had the success I do with him. Good luck!!



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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Jacqui Gross
Posted by Lylia Bennett ® , Jun 24,2001,21:41 Top of Thread Archive
Jacqui, you are one of the fortunate ones!! Dr. Troung is really considered to be the founding "father" of the NSDA. Because of Dr. Troung's long interest in Dystonia, Movement Disorders, and especially
Spasmodic Dysphonia we now have the NSDA to help us in dealing with our voice disorders, etc. Dr. Troung is very practiced and very knowledgeable in the use of Botox for treatment. People fly in from many other states for their injections. He is a wonderful, caring doctor. You are lucky to be under his care. Lylia Bennett


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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Jacqui Gross
Posted by Terry A. Howell ® , Jun 25,2001,00:00 Top of Thread Archive
Lylia provided good information. I've been going to Dr. Robert Wang, Univ. of Nevada, in Las Vegas with good success. I'll be flying out there this Thursday. He injects through the scope through the nose. Sounds bad, but its quick and precise. I haven't had good success with the through neck shots (any place Houston, Dallas, Lubbock; until I went to Dr. Wang then in Lubbock at Texas Tech). Terry Howell




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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Terry A. Howell
Posted by Susan B. ® , Jun 25,2001,01:04 Top of Thread Archive
I live in Las Vegas and have been considering going to Dr. Wang but have delayed because I've always heard that the shot leaves one with a very breathy, barely-there voice. My work involves the use of my voice, including telephone work, which is always a problem anyway. Your post really got my attention because I didn't know anyone who has been treated by Dr. Wang and I wondered how good his results have been and if his method also results in the breathy voice. Would very much appreciate it if you could provide some more details about the specific results that you get, how long the benefits last, breathiness, etc. Thank you so much. Susan B.



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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Susan B.
Posted by Lylia Bennett ® , Jun 25,2001,12:59 Top of Thread Archive
Susan, Dr. Wang left Lubbock and moved to Las Vegas. When he did, most of his patients from Lubbock now fly to Las Vegas for the injections from Dr. Wang. All of his patients are very happy with him as their physician and enjoy his bedside manner as well. I feel certain he could work out your dosage fairly quickly. Lylia



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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Terry A. Howell
Posted by Terry A. Howell ® , Jun 25,2001,23:33 Top of Thread Archive
Susan B.,

Dr. Wang is very good and skilled. I would encourage you to see him. My last injection was in Nov. Dr. Wang gives me one of his highest doses (about 2.6 units/side). He didn't do any Botox in May, and I missed his April date. Apparently, he still does not have enough Botox patients to have a regular schedule. Terry Howell




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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Terry A. Howell
Posted by Susan B. ® , Jun 29,2001,23:57 Top of Thread Archive
Terry Howell,

Thanks for the reply re Dr. Wang's skill. I'm still interested in knowing if you get the severe breathiness and lack of phonation after the Botox, and for how long, if you do. This is my main concern because I use my voice in my work. Thanks in advance for your reply. Susan B.




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Re: OK to ask for Botox injection success rate?

Re : Re: OK to ask for Botox injection success rate? --- Susan B.
Posted by Terry A. Howell ® , Jul 09,2001,23:19 Top of Thread Archive
Susan B.,
I had my Botox injections in LV on June 28th. My voice started getting better by July 6, but it is still breathy. It is likely due to the "relatively high" dose [5 units/side] I received. The Botox "kicked in" about 3 days post-injection. In trade, I can go longer between injections. Dr. Wang starts with much lower doses (mine started at about 1.6 units/side] years ago. I do have an appointment to see Dr. Berke in LA later this summer when I'll be out there on business. Terry H.

--modified by Terry A. Howell at Sat, Jul 14, 2001, 00:50:35




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Re: OK to ask for Botox injection success rate?

Re : OK to ask for Botox injection success rate? --- Darlene Dollard
Posted by Jan Joiner ® , Jun 25,2001,12:15 Top of Thread Archive
Hi Darlene,

Boy, you do have a dilima. I am glad you recieved your first Botox injection, however sorry that it did not work for you. I think you need to get with the NSDA and find a more experienced doctor so that you will not have to depend on two different doctor's opinions. When I first started my Botox injections, I too was dealing with two different doctors and it can be very confusing. So, I decided to go to Nashvile, Tn. The Vanderbilt Voice Center. They are very experienced in the injections cause they do them every week, whereas the doctors where I live only did them once a month if weather allowed. Too they started me out at 5.0 units in each side and droped the dose from there as needed. Maybe this is something new they are experimenting with, ie trying to start with a lower dose and then raise it as needed vs full effects right away to keep folks from becoming immune to the toxin. I don't know. Just a guess.

Anyway, I think you have gotten some great replys so far and I say to you to hang in there. I know it is tough, but it will work out. Good Luck, Jan




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