Spasmodic Dysphonia Bulletin Board

Transition from bilateral to unilateral
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Posted by: BRife ®
01/03/2008, 19:20:17


Searching through the archives, I have found a lot of very useful information on the differences, advantages, and disadvantages of both types of injections, but I didn't find information on making a transition.

My first three injections were all 2.5 bilateral. The first two kept me out of work for about 2 weeks, but the last one was closer to a month. I realize that there are no definitives in this, and that each injection is different even unto itself, but my intent is to try unilateral next time, so that I can hopefully remain closer to the 2 week timeframe, rather than the month one. An interesting side note is that even though the last one took my voice for twice the amount of time, I seem to be losing the advantages a lot quicker (less than 3 months since the injection).

My question is, what is the best way to transition from bilateral to unilateral? Should I make an appointment for the first injection when the bilateral is wearing off, or should I schedule them early enough that I can have the second injection when the bilateral is wearing off? Or does it really matter?

Thanks for any input.

Bryan Rife
Carrollton, TX
ADSD since 2004




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Re: Transition from bilateral to unilateral
Re: Transition from bilateral to unilateral -- BRife Top of thread Archive
Posted by: Laurie ®
01/03/2008, 21:00:10


Hi, Bryan,

I switched from bilateral to unilateral injections many, many years ago. There was no transition in my case. You approach it as you would any other Botox injection. Just go back when you want relief.

I'm not sure what you mean by "the first injection" or "the second injection," so that may be where there is confusion. With unilateral injections for AD/SD, there's generally only one injection throughout each Botox cycle (every 3-4 months).

If you switch between sides each time, it's still with the same method... say, every 3 months.... just wait until you want another injection (symptoms coming back) and go back.

I go every 3 months (occasionally, every 4) and switch back and forth between sides. Many others just continuously get the same side injected. But, in general, you're still on the same Botox schedule as you would be for bilateral injections whether you always get on side injected or if you alternate.

For those with AB/SD, there's the approach of... go for a unilateral one... then go 2-4 weeks later for the "other side/second injection," but that generally only applies to AB/SD so I might not incorporate that advice into your system.

Good luck and I hope that's not too confusing.

Laurie



Modified by Laurie at Thu, Jan 03, 2008, 21:01:52

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Re: Transition from bilateral to unilateral
Re: Re: Transition from bilateral to unilateral -- Laurie Top of thread Archive
Posted by: BRife ®
01/05/2008, 19:36:09


Thanks, Laurie. Yeah, I think I had some confusion about the need for both sides to be injected, just at different times. Sounds like that's not the case.

I appreciate the help.




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Re: Transition from bilateral to unilateral
Re: Transition from bilateral to unilateral -- BRife Top of thread Archive
Posted by: Ingvar Andersson ®
01/04/2008, 03:44:11


Bryan,I understand that you are in the trial phase for bilateral treatment, but just repeating the same trial. If you are kept out of work after your first trial, to me this indicates that you have to change the next trial. You have to reduce the dose, so that you do not lose your voice. You should just get so weak a voice that you can accept it.

Keep track of the dose you get, not only U per cord, but also volume of the dose. I will give you an example on importance of volume: When I get 0.5 U in 0.1 mL per cord I get a weak voice after 10 days which I can accept (the voice disappears in a noisy restaurant or when I try to shout at my grandchildren). If I get 0.5 U in 0.2 mL per cord (same amount of Botox per cord) I lose my voice for 5 weeks ( can only whisper).

I think you should complete your evaluation and trial phase of bilateral treatment before you consider trying unilateral treatment.
Ingvar Andersson, ADSD, Malmö, Sweden




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Re: Transition from bilateral to unilateral
Re: Re: Transition from bilateral to unilateral -- Ingvar Andersson Top of thread Archive
Posted by: tomthewhisperer ®
01/08/2008, 11:04:58


Ingvar,

Can you please explain what you mean by volume of the dose? I guess I'm confused between U and mL.

Also, 3 weeks ago I received 1U in each chord and I am still whispering - unacceptable for my type of work. My doctor seems to think that .5U is too low and that I will not receive adequate benefit from it. I'll probably insist on trying .5U next time, but I would like to understand the volume issue further.




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Re: Transition from bilateral to unilateral
Re: Re: Transition from bilateral to unilateral -- tomthewhisperer Top of thread Archive
Posted by: Ingvar Andersson ®
01/08/2008, 17:41:55


Tom,
My MD (and probably yours) receives the Botox in a vial containing 100 U of vacuum-dried Botox from Allergan. The MD then has to dilute the Botox with saline to obtain the desired concentration of Botox solution.

The volume unit used in this connection is mL (milliliter = about 0.061 cubic inches) both in Allergans product description and in the key document for the bilateral treatment method by Brin and Blitzer, at that time at the Columbia-Presbyterian Medical Center in NY.

In the mentioned key document Brin/Blitzer sticks to the volume 0.1 mL per cord for the treatments, but varies the amount of Botox in this volume through the mentioned dilution process. In my experience, it is important when experimenting to obtain the correct dose to keep the volume constant and not experiment with both volume and U. My MD works this way and first when he does not get expected results, he continues experimenting with larger volumes or unilateral treatments.

My experience from volume experimentation (my regular MD knows that I should have 0.1 mL) is based from one treatment at another hospital clinic. I had ordered 0.5 U in 0.1 ml and the MD convinced me that 0.25 U in 0.2 mL was the same. It did not have the same effect and in stead of a weak voice, but no whispering, I received 5 weeks of whispering. I am afraid that this MD is not the only one in the world experimenting with both volume and U.

Looking at myself I see a person with small muscles. I probably have a small TA muscle, too. Maybe only 0.2 mL in volume. Injection of 0.2 mL in this muscle probably spread the Botox to another and very sensitive muscle (cricoarytenoid muscle), not used to Botox. For a person with larger muscles, the volumes had probably not made a difference.

The Brin/Blitzer key document mentions treatments with doses as low as 0.1 U/0.1 mL per TA muscle. My MD has a patient taking 0.1 U/0.1 mL per cord. Your MD should realize that 3-5 weeks of whispering is not an adequate benefit from Botox.

I hope this clarifies that we have to consider both U and mL for our treatments.
Ingvar Andersson, AD/SD, Malmö, Sweden




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Re: Transition from bilateral to unilateral
Re: Re: Transition from bilateral to unilateral -- Ingvar Andersson Top of thread Archive
Posted by: tomthewhisperer ®
01/11/2008, 11:33:50


Thanks Ingvar. I will discuss this with my doctor. After 2 treatments, I'm not a happy person. I don't want to give up on Botox this early. I'm sure there is a right mix for me.



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Re: Transition from bilateral to unilateral - dicussion in the bulletin board archives
Re: Re: Transition from bilateral to unilateral -- tomthewhisperer Top of thread Archive
Posted by: Laurie ®
01/12/2008, 11:08:04


Hi, Tom,

This is an interesting topic and has come up here and there on the BB over the years.

I found this brief discussion in the arhives and there may be others in case you want to search them out.

Good luck,
Laurie


Related link: Discussion of Injection Volume in BB Archives

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Re: Transition from bilateral to unilateral
Re: Transition from bilateral to unilateral -- BRife Top of thread Archive
Posted by: Paula B ®
01/05/2008, 00:40:34


Hi Bryan,

My first three injections were also bilateral. I then went to unilateral. With unilateral I have gotten up to 9 months of relief from my AD symptoms. Totally awesome! I always wait until my shot stops working completely. Until it wears off to the point when I'm sick of repeating myself, or explaining the reason for my bad sounding voice. My last bilateral was 2.5, and when it wore off, I asked for 5 units of botox unilaterally. I have gotten that dosage with good results for at least 3 times, maybe 4. It's been about 3 years since I was first diagnosed with SD. It is up to you when you want to get your injection. If you are planning for a big event, you can plan to get it weeks, or even months before. This is somewhat experimental. As you know, the same dosage could give totally different reactions, or side effects. I was given my unilaterals on my right side every time. If for whatever reason they stop working as good as they are, I'll probably switch to my left side, and if it's not as good there, I might go up some in the dosage. I think that is called "Live and Learn". :) Good Luck to you!

Paula




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Re: Transition from bilateral to unilateral
Re: Re: Transition from bilateral to unilateral -- Paula B Top of thread Archive
Posted by: BRife ®
01/05/2008, 19:34:12


Thanks, Paula. That's exactly what I was looking for.



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Re: Transition from bilateral to unilateral
Re: Transition from bilateral to unilateral -- BRife Top of thread Archive
Posted by: TMK ®
01/06/2008, 13:18:03


Bryan-

While I have ABSD instead of AD, I have always had unilateral shots and have read on the bulletin board a lot of conflicting opinions on which is better. I think it is different for different people. In my mind, I always think you should try everything you can - so you don't later wonder "what if?"

I noticed you live near me. If you are interested in emailing me, shoot me a line.

jay.kraushaar@sbcglobal.net




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