Posted by: MaryannaC ®
12/21/2005, 12:49:17
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Your doctor should cover all these questions with you. At Vanderbilt, where I get my injections, they have a pre-treatment session with each patient, to tell you what to expect. My personal experience has been that, although it is uncomfortable, it is not really painful. My doc injects lidocaine (sp??) at the injection sites, to numb the skin. I can feel the needle once it passes through the numbed skin, but the sensation is sort of like swallowing a sharp piece of corn chip -- not really painful, but not pleasant. The "weak voice" period varies from person to person -- and from injection to injection for the SAME person! As my docs keep telling me, this is one part art, one part science. It can range from a mile breathy voice to little more than a whisper, and can last anywhere from days to weeks. Thin liquids (water, tea -- not food) can sometimes cause you to choke a bit -- this can last for a few days to a few weeks. At my pre-treatment session, they showed me how to swallow to avoid this, and how to clear it up if I do choke. Personally, I've never had any other side effects -- the Botox seems to have a pretty specifically local effect. You should run all these things by your doctor -- and then ask why you had to ask these questions, rather than being given some information about what to expect beforehand! Good luck to your husband!
Maryanna
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Posted by: Keith ®
12/21/2005, 14:55:04
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Hi:
I agree with Maryanna. Responses to botox vary significantly from one person to another. Generally speaking, when a larynx is injected with botox there can always be some side effects relative to any of the 3 main functions that the larynx is involved with: voice, swallowing, and breathing. The side effects are usually mild for most people, but no guarantees are ever made as to exactly which area will be affected most and for how long.
The goal of botox is always to achieve the best possible vocal benefit while minimizing the degree of side effects, although I've also been told that if there are NO side effects, than very likely there is also not as much of a benefit. This was my experience with the first 2 injections that I ever had. Likewise, longer and more severe side effects can result in a longer benefit period. It's really a balancing act. Obviously, the physician and the patient have to reach a point where both are satisfied with the results. Exact placement of the botox, as well as the dosage, is another critical factor in determining the outcome.Keith
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Posted by: Marilee ®
12/21/2005, 15:11:34
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HI, Peg and husband, Welcome to our bulletin board.
We're always sorry that new ones have these problems,
so that they have to search for help, but each of us
on this board have been so glad to find it available!Maryanna gave you some very good info. I agree with
her assessment. Usually for the 1st treatment, the
doctor gives a lower dose of Botox, to see how it goes.
So he may have very little swallowing trouble. But if
he does, it lasts only a few days. When drinking, it
helps to put one's chin down toward the chest, take
VERY small sips, and perhaps use a straw. If it does
"go down the wrong way" after all that, don't panic,
because coughing will bring it up satisfactorily. There is also a product called "Thick-It", available
in drug depts., to thicken any liquid. (Nursing homes
& convalescent homes use it routinely for older people.) Could you tell us where you are located - which state
or country? That makes a difference as to whether the
doctor has (or takes) the time to explain much to you.
I go to a University hospital in Indiana, which is very
efficient, but my ENT is so booked-up, he doesn't spend
much time talking. They are all different! And each
patient is different as well. What works for some
doesn't always work identically for others, as Maryanna
noted. Also, does your hubby have ad or ab, if you know. As for voice change after Botox, my personal experience
is not the whispery voice, but a high-pitched one, like
I've breathed helium, for a few days. The end result
is so worth it all, though! Keep posting your questions, and let us know how it
goes, please. Best wishes to you both. Marilee, Indiana, U.S. (adsd & other dystonias, 5 yrs.)
gcazz@juno.com
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Posted by: Peg ®
12/21/2005, 21:31:09
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Hi Everyone, Thank you for taking the time to share your input with us. We believe the problem is AD, but will verify when seeing the doctor in January. The ENT is located in PA, and with very high reviews...however, as this ENT has many patients doing 4-5 Botox injections per week, she didn't go into much detail. This message board is so very helpful. We will stay in touch. Thanks again!
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Posted by: mdubovick ®
12/21/2005, 23:12:40
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I'd like to sound in and mention I agree with all the people who replied to your note.As to the ENT doing 4 - 5 Botox injections per week and being busy, that is something that is contrary to my experiences in NC and several places in FL. I've gone to Botox Clinics associated with university hospitals and a discussion/ counseling session about reactions ALWAYS takes place. At the Botox Clinics, the ENT usually does about 20 to 30 Botox injections in a single day!!! May I suggest that you and/or your husband take the time to ask the questions so you know what reactions you should be expecting. I would also like to refer you to my reply to Ray W. this date (12/21/) in the post directly next to yours. It mentions the absolute necessity to maintain meticulous records of his reaction to the injection. Those records, that data,
will guide the ENT on future injections. And the more data,
the more accurate her results are likely to be. Keep good records!!! And good luck...
Modified by mdubovick at Thu, Dec 22, 2005, 08:48:11
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Posted by: MaryannaC ®
12/22/2005, 12:38:05
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Yup -- the Vanderbilt Botox clinic is done every Friday for half the day, except for one Friday/month when it is run the ENTIRE day, They do 30-50 patients each clinic day. So, 4-5 per week doesn't sound like a whole heck of a lot!
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Posted by: shelly ®
12/24/2005, 17:04:52
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Maryanna,
My name is shelly and I somehow can't find the post you sent me. I believe you were a prof. singer also and are continueing to search for some new research regarding sd. I sadly have given up because I cannot take the emotional ups and downs mostly the hope to sing prof. again when I've been told It cannot be done? I saw a doc. Bob Bastian at the voice center in Chicago IL. have you heard of him? He is supposed to be one of the top three in the country for voice imparements. He has worked with prof. singers before and have found them all career ending. I pray for your search and please keep me posted on how it is goin!
Shelly
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Posted by: MaryannaC ®
12/28/2005, 14:45:57
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Hi Shelly -- sorry, I haven't checked back here in a while, with Christmas and all.I have my appointment with Andrew Blitzer in NYC tomorrow. If you will email me at Maryanna@twtp.org, so I have your email address, I will let you know what he says and how it goes. I AM NOT GIVING UP!! :)
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Posted by: Tom D. ®
12/23/2005, 08:51:52
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Hi Peg. Season's greetings!
Tell your husband not to be concerned about pain. I was feeling the same apprehension before my first treatment. I've had twelve sets of bilateral (one shot in each cord)injections every four months for the last three years and have had very satisfactory results with minimal discomfort. When I have the treatment,I lie down and the MD gives me two injections of local anaesthetic in the throat. When the first one is entering the throat, I let out a little cough. By the time I get the second one about a minute later, the first one has taken effect and I barely feel it. When the Botox is injected, I only feel a slight tingle or tickle in each cord as they are penetrated. When the anaesthetic wears off, I'm a little tender when I swallow, but that sensation is gone the next day. For a few days afterward, if I touch my Adam's apple, I can feel some tenderness.
My voice is quite breathy for about two weeks on average afterward and as others have indicated, it varies from injection to injection- even if the dosage is the same. I started at 0.5 units per injection(uneffective) and went as high as 3.0 (caused too much breathiness and some mild choking on liquids). I'm now at 2.5 units. The benefits last about two and a half months and then the old symptoms gradually return. By the four month mark when I'm returning for more Botox, I'm not quite back to full symptoms.
My overall experience has been very positive and I find that the treatments have significantly improved my quality of life. I still have a somewhat weak voice with a limited range, but people now can understand me. Three years ago, they couldn't make out the majority of what I was saying.All the best to you and your husband!
Tom Daley
Ontario, Canada
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Posted by: Lib Haywood ®
12/27/2005, 08:35:21
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Peg, over the years I had 34 injections of BoTox, most of them were done at Vanderbilt Medical Center. I started with 5 units in each cord and over night my voice cleared and I could speak freely. A miracle indeed!! I was then reduced to 2.5 units in each cord and most of my injections were that amount. You mentioned .5 as the amount to be injected which sounds like a very small amount. Some times it takes trial and error to arrive at the correct dose. Maybe your doctor is starting low and intends to increase while my doctor started my first injection at a higher dosage and then decreased it.As suggested by other people, it is best to keep a journal of each injection when, how much, side effects, etc. This will help you and the doctor arrive at the amout that works best for your husband. Each of my injections seemed to be somewhat different. At first I had a few days where I had to be careful drinking liquids, especially water. A few times I had a lot of mucous after the injection. Most of the time, I had a few days of breathy voice, then a stronger voice for several months before it began to break down again. The strength of the BoTox can vary and some times the injection may not be in the best area to achieve good results. I was never in any pain during or after the injection. This may vary from person to person. My doctor deaden the outside of my throat and then injected. It only takes a few minutes to do this. I wish your husband a successful treatment with BoTox. Lib Haywood, Charlotte, NC AD/SD since 1987
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Posted by: Barbara S. White ®
01/29/2006, 22:33:14
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after my first injection a couple of years ago, I had a voice change by the next day. Just a whsiper the day of the botox and the next day it was if I had never had SD. It depends on the process used as to how uncomfortable it will be. I had my first injection at UC Davis in Sacramento. The gave me an injection of pain killer in my nose and than stuck a tiny little camera down my nose and monitored the position of the needle in my neck on a computer monitor. I moved to southern CA and my first injection there was quite different. Dr. Gerald Berke at UCLA Medical Center simply feels with his fingers the vocal cords by touch the neck and injects a tiny needle in each vocal cord. The process was simple, took a few seconds and so much more comfortable than the one at UC Davis. I have a few botox with Dr. Berke and he never misses the mark. I later had surgery with him and am very pleased with it. The botox worked great but botox is temporary. My surgery went very well. He said it was text book quality and I am recovering quickly. My voice increases daily. It takes about five or six months to completely get your voice back with the surgery because the vocal cords are paralized for a long period than with botox. The surgery is not for everyone but Dr. Berke developed the surgery and if he doesn't think it will work for you, he will tell you. I believe there are other surgical methods but this has worked great for me. Try botox first and if it is convinently located and it works thats great. If not, its still worth the drive for most people. I'm 68 years old and the long drive for me was getting to be too much. That's why I went for the surgery. I don't think there was any pain with botox. Maybe a bit uncomfortable the first time with the camera but I had a whispery voice for a day and than sounded like I did before I had SD. I was very proud of my new voice after 30 years with SD. Oh, I only had a swallowing problem with one of my botox. That was when I insisted on a whole unit in each cord against the advise of the doctor. The next time I was glad to go back to 1/2 unit.
Blessings,
Barbara / god4me@comcast.net
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