I have just been diagnosed with spasmodic dysphonia. It is very agravating to try and talk and no voice comes out. I am scheduled to get my first botox injection July 10. I will be having it a Cincinnati Ohio. I am scared to death of needles. I'm in a panic about it and some nights can not sleep. Has anyone else gone to Cincinnati for treatment. Do the shots hurt? Will I be able to swallow after the injection? I'm only having one side injected. Any response will be appreciated.
Re: just diagnosed with sd; first injection soon
Hi Teresa,Welcome to the Bulletin Board. I have had ADSD for 17 years now. I took Botox for 2 years. I was diagnosed in 1998. I am now recovering from Dr. Berkes' surgery out in Los Angeles, California. The injections feel kind of like a bee sting. It really does not hurt, just a little uncomfortable. Yes, you will be able to swallow, however you will have some difficulty drinking thin liquids if the injection is given correctly. Botox is a hit or miss type thing and if you do not have an experienced doctor who will be doing it, he/she may miss the right muscle to inject the medication into. Botox usually works with 3 days and you will be able to tell by how much you get strangled and your swallowing difficulties, which usually go away in a couple of days. You will have a whispery breathy voice usually for 1 to 2 months after the injection. Read some of my other post, it really is not going to be as bad as you may think. I know you are scared, because I was on my first injection, but it should be a relief to you if your voice is spasming badly. Best of Luck and stay in touch. Regards, Jan
Re: just diagnosed with sd; first injection soon
Teresa: I can relate to your feelings. The unknown is frightening. I had 34 injections over a period of eleven years. I always had doctors who deaden the outside of my throat before injecting (there are some doctors who do not do this) and I nevery had any pain. It only takes a fews minutes to inject the BoTox. On ocassion, the doctor may miss the right spot and have to take a little longer but I did not think it was uncomfortable. Within hours after taking the injection, I could feel my voice changing. Good luck to you.
Re: just diagnosed with sd; first injection soon
Good luck. Like the others have said. It's no worse than a pin prick. Especially if you have a good doctor. The full procedure takes less than 5 minutes to accomplish.
Re: just diagnosed with sd; first injection soon
Teresa, I had Botox injections for 6 years, every 3 -4 months and it is much less of a concern than even going to the dentist, after the first time and you know what to expect. Its no big deal. My doctor would put an ice bag on the area of the throat rto lessen the feeling in the area and to help reduce bruising which occurs in about 30 of injections and then would give an injection to deaden the area locally. This would have a slight sting but not bad. He would wait for about 5 minutes while talking to me and then give the Botox injection or injections if doing both left and right sides. There are different methods of giving the injections used by different doctors. My doctor tried different techniques on me for the first year to see which worked the best for me. He tested injections on both sides as well as unilateral (one sided) injections. In my case I clearly got better results and much less side effects with the unilateral injection technique. The Botox injection is not painful but you will feel some pressure with the injections. I found that concentrating on something on the ceiling while getting the injection is a good way to distract yourself. It really is not a big deal after your learn what to expect. After taking the injections for 6 years, my doctor called me and want to try a new drug treatment test with the drug Neurontin. It has changed my life and I now longer need Botox injection and feel and sound great since January of this year. The drug took weeks to reach full benefit for me but I'm extremely pleased and no longer have spasms. In the years prior to taking Botox and finding a doctor who knew what SD was, I was treated with about every drug known to man by a local neurologist and never found any oral drug that helped my. He eventually gave up and sent me to the Baylor College of Medicine where I became the patient of Dr. Joseph Jankovic who did much of the early research on Botox. He was the first doctor to tell me that I had SD and started me on Botox. After 6 years of Botox treatment, I was started on the experimenatal test with Neurontin ( very small dosages) and have been extremely pleased. When I read about all of the people who are considering surgery, I have to wonder if they have tried the new treatment of Neurontin first since the use for this disease is just being explored by researchers although the drug has been used for other diseases for a couple of years. Hope this helps. Don
Re: just diagnosed with sd; first injection soon
Teresa - I used to go to the Univ. of Cincinnati Hospital. If that is where you are going, please give Dr. Keith Wilson and/or Dr. Jack Gluckman, my warmest regards (from John Beeman). One of the nurses is "Annie". These folks are, in my opinion, tops. Talk to them. What I liked about them was they would come to the exam room, sit down and talk about anything you wanted to discuss. I never felt pushed. Dr. Quinlan ran the EMG machine. He was a great guy. Once, due to the time difference between Indiana and Ohio, I was an hour late for my appointment. They never let on. Ann explained that it would be a few minutes while they assembled the team. They just adjusted and were great. You are in good hands and that comes from a fellow who went there for almost 10 years. Good luck. John
--modified by john s. beeman at Wed, Jul 04, 2001, 19:15:43 --modified by john s. beeman at Wed, Jul 04, 2001, 19:16:14
Re: just diagnosed with sd; first injection soon
I just discovered this thread and saw John's reply. I too have been going to Dr. Keith Wilson at Univ. of Cinn. Hospital. The worse part about it is the 2 hr. drive to Cincinnati. The procedure usually takes about 30-45 seconds....no lie. After the 2 hr. journey, it almost seems anticlimactic. I think Dr. Wilson may be more adept at it than most doctors. You couldn't be going to a better place.
--modified by gavin hadley at Tue, Jul 10, 2001, 08:22:57
Re: just diagnosed with sd; first injection soon
Hi Teresa, I'm no expert in botox injections but just went through one a couple of weeks ago. I don't like needles myself but handled the injection just fine. It's no worse than a couple of pinches on your neck. Dave
Re: just diagnosed with sd; first injection soon
Hi.. I had my first 3 weeks ago.. I found that my clonapin before hand helps to keep me calm as I too am a needle chicken.. ask your Doc if he can give u a mild sedative first.. if that is applicable.. some of us can't have certain pharms..
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