Hi,
In April of this year I lost my voice, since then it has only gone downhill. I am at a whisper almost at this time. All the time. My best voice is the first word that comes out of my mouth in the morning, which is braky, then the breathy voice. The more I talk the less voice that I have, and I used my voice for a living. I worked at our counties 911 center as a supervisor over a shift. I was talking for 12 hours at a time, over the phone as well as over the radio's. Needless to say, I am "offcially" on medical leave, without pay.When I was first seen by an ENT he diagnosed me with larngitis, as the weeks went on, with no voice improvement, even with voice rest, he sent me to a speech pathologist. This Person, had treated someone with SD before, and after doing her voice annalist, she concluded that in her opinion, that I did have SD.
I was sent to a doctor that she knew about in Charleston, South Carolina, that she knew treated Spasmodic Dysphonia, and also gave Botox treatments.I was diagnosed with Adductor Spasmodic Dysphonia, and Botox was recommended. Also I have a facial spasm, like a palsy, which she thought might be Meige's syndrome. But she wanted me to see a Neurologist there at the Medical University of Charleston for my other neurological problems. In my opinion, through research I belive that I have Generalized Dystonia. Anyway, back to the story:
Well, My insurance company decided that she was not in their "network" so, my quest to find an ENT that was in their "network" was on.
I was sent to Duke University in North Carolina to see a Neurologist, the ENT as well as a speach pathologist. This ENT belives me to have Laryngeal dystonia, along with the speach pathologist's findings.
So, I have been told that this is in fact the same thing, Is it?
I was told by my primary doctor, Which of course had never heard of SD before, that if I had the Botox injections, if it is Laryngeal Dystonia, that I could be put on a feeding tube untill the effects of the shot wore off, or worse. He was getting this information from the doctor at Duke.
Duke is about a 3 hour drive from where I live, and so is Charleston, so either way I am about 3 to 3 1/2 hours away from anyone who deals with Botox to the laryngeal area.
The doctor at Duke even told me that if I wanted Botox, that he could get the insurance company to approve for me to go to Charleston, where they (the insurance company) denied me access to. He advised that "There is always away around insurance companies".
So, are these two the same thing or what? Any and all information would be appreciated. I have read all the information that I can find on both disorders, but i cannot find where they are the same thing, just called different.
I am sorry that this is long, I have a tendency to be long winded, no pun intended...lol.
Thanks in advance for the help that I am sure that I will receive,
Nancy McLeod
........I also posted on the Dystonia BB, "A cry for help".....just trying to find answers to my problems any and everyway I know how.....
--modified by Nancy McLeod at Fri, Nov 17, 2000, 09:12:58
Re: Can Someone Clear My Diagnose's up?
Hi Nancy,
Welcome to the BB, I would find a good ENT who knows about Botox first... what your Dr, told you about the feeding tube is one of the complications that could happen, although my Dr. told me it was VERY unlikely, the most common complaint with Botox is for about 2-3 weeks after the injection you have to be careful swallowing liquids, they sometime slip down the wrong tube and you caugh(a lot).
Now days they start out with such a small dose that they don't worry about it. I have never heard from anyone on this BB who had that complication(feeding tube) with Botox and there are many of us who had been or are still getting Botox. Botox has been very successful in helping people get the use of their voices back. The problem is finding a Dr. who knows about SD and Botox since it's such a rare condition. Check with a University hospital. Good luck to you, keep up posted... Barb
Seattle
Re: Can Someone Clear My Diagnose's up?
Nancy - laryngeal dystonia and spasmodic dysphonia are the SAME thing.Here's a sentence confirming this from the DMRF's website: "SD may also be referred to as Laryngeal Dystonia." You'll read much more about SD there (the url is http://www.dystonia-foundation.org and I'd also suggest you check the SD links at our http://www.dystonia-support.com website. Good luck David
Re: Can Someone Clear My Diagnose's up?
Nancy,I live in S.C. and was not aware of any doctors who treat or even know of SD in this entire state. I'm only 3 hours from Charleston and would love to find out who and where the doctor is in Charleston. I've had Adductor SD for 23 years but just found out what it was this past May.
I haven't yet had any botox treatments or even an "official" diagnosis and one reason for this is my search for the best and closest doctor to go to. I have spent ALOT of time and money going to doctors in Florida ( my home state) and S.C.,only to get no diagnosis or the wrong diagnosis and have a bit of doctor burnout.
I'm afraid I don't have any answers to the questions you posed in your post but hopefully someone on the BB will be able to help. There are alot of knowledgeable, helpful and extremely nice people on this board.
It's a great place to go for info, support and just to share frustrations. Dawn Smith
Re: Can Someone Clear My Diagnose's up?
Dawn, if I remember correctly (boy, that's the second time I've used that phrase here today, am I getting senile?), Dr. Gayle Woodson is in Florida.
I know that there were some doctors from Florida at the PVC, I'd have to re-check my workbook to get their names. I'll get back to ya on that.
-Kristina
Re: Can Someone Clear My Diagnose's up?
Thanks, Kristina but I guess I rambled too much on my post. Florida was where I lived for the first 12 yrs. of the SD...then, I moved to SC at age 30 and thought I had gone through most of the ENT's, GP's, Neurologists etc. in this state ( thus my question to Nancy). So, now I'm narrowing down my sure fire choices in NC & SC for an official diagnosis. Alot of folks may think I'm crazy but if I get my way on this, I will skip the botox roller coaster altogether & head straight for Dr. Berke's surgery. I have no surgery phobia whatsoever and after all my years of frustration etc. with SD, I'm all for long lasting solutions. I've been reading all of the positive posts on the surgery and truly haven't seen any posts that I would call encouraging ( in my viewpoint, at least) on botox.
Re: Can Someone Clear My Diagnose's up?
Dawn, as you know, I've had both treatments. I think the reason I had Botox first is because I felt responsible to do so. Something like, well if the botox works, then the surgery will. I think that's the only reason why I recommend that you do Botox first, just to make sure that you aren't initially mis-diagnosed (which still happens). Dr. Berke relies upon your patient history provided by your ENT, he is a surgeon, and my understanding of surgeons are: your doctor tells you you need surgery, say to remove your appendix. You would be interfacing with your doctor on the matter, not particularly the surgeon. The surgeon's just there to do the job at hand. Now, my impression of surgeons could be wrong, and I should probably check with the doctors to make sure. But, I know that my history was sent to Dr. Berke, and the only appointments he needed with me was to confirm my diagnosis, take my history, and tell me the risks of the surgery.
This is probably a good opportunity for me to ask them, so, rather than continuing to speculate, I'll ask, and get back to you.
-Kristina
Re: Confirming Diagnosis/Nancy & Dawn
Dawn,I'm not aware of doctors who treat SD in SC, but listed here is the name and telephone number of an SD SUPPORT GROUP Leader (in SC), who will hopefully be able to give you some names: Jim King, 864)433-0391. Good luck. :) Nancy, You poor thing ... to have been recently diagnosed, and be given so much misinformation by so many people in the medical profession already!
Keep in mind that while SD is still considered rather rare, all of the things about it that you learn, can & should be relayed (somehow) to the doctors who have midled or misdiagnosed you; public awareness of what SD is, (a neurological voice disorder), and how it is treated is crucial. Now, try not to jump the gun by thinking you have Generalized Dystonia, just because you have SD AND facial "spasms." Today's technology allows you to be tested, genetically, to see if you are carrying the gene responsible for Generalized Dystonia. I recommend if you're suspect of having it, that you seek the test. When only ONE form of Dystonia is present (and confirmed), as in your diagnosis with SD, it is then referred to as being FOCAL; meaning affecting only one muscle in the body. Generalized Dystonia typically has an early childhood onset, and begins with symptoms in the lower extremeties, i.e., the legs. David Barton (in a prior post, under this topic), provided you with very pertinent and valuable links to websites that contain information that is accurate. I hope you browse the information on them. Whom ever told you that a feeding tube goes hand-in-hand with post Botox injection effects, is sadly and grossly mistaken. As with MOST forms of treatment, you run risks, but some are hardly worth mentioning, and that's one of them. Botox happens to be a wonderful treatment OPTION for many with Adductor SD, as it tends to be less effective for people suffering from Abductor. :( Surgery is another viable option -- Dr. Gerald Berke, at UCLA, in CA is performing a surgery known as "SLAD," (which is an acronym), that is presenting wonderful and remarkable results to those who have undergone it. You can call his office for details. As far as treatment with Botox goes, it's important to know and keep track of how many "Units" you are injected with, each time. Typical side effects including *some* transient difficulty with swallowing, that resolves on it's own, as well as a voice that's quite low in volume for some time. However, most will agree that it's benefits outweigh it's side effects (most of the time). If administered properly, (make certain you go to ONLY an experienced and skilled specialist), Botox, in appropriate doses, should prevent your vocal cords from spasming and eliminate any choking sensation you may feel upon phonation. The nature of the toxin essentially paralyzes, or weakens the muscle attached to your cords, so that they cannot spasm. Hence, speaking is made easy again... until it wears off. In many patients, although the duration of time during which the Botox works varies from one individual to another, a reasonable length of effectiveness should be between 2-5 months (before reinjection is necessary). The potency of Botox seems to vary, making it reasonable that it's side effects and efficacy do also. Even the most experienced doctors and (Botox) patients could write their thoughts and opinions down for you, but unless and until you try a set of injections for yourself, you'll never know if and how it will or won't work for you. I might add that many times, it is necessary to try more than one set of injections before you and your doctor find the "right amount" of Botox for you. Let me also add that in some patients, *unilateral* injections prove to help. This means that only ONE of your two vocal muscles are injected with Botox. Bilateral injections are more common, but it doesn't hurt to try both. I wish you well in your journey with treatment. You're probably asking yourself, "Why would I want a treatment that is going to make my voice low in volume, when it already is?!" The answer lies within your comfort zone, literally. As Botox wears off, you should hear as close to a normal sounding voice as you ever ~may~ again, including regaining your volume. The injections are not "painful." For most, they cause mild discomfort, but are well worth the time and effort it takes to ge them -- even if you have to travel to your specialist for them. I'm sure you want that income you're losing to come back too... ~Vox
Re: Confirming Diagnosis/Nancy & Dawn
The genetic testing (DYT-1) for dystonia only works for the dopa-responsive dystonia, which is only one type of general dystonia. In order to get an accurate (we hope) diagnosis of a dystonia-related disorder, you should probably see a movement disorder specialist (neurologist specializing in movement disorders) and go through some tests. You can get a great big list of them in your area by contacting the DMRF. They actually have more MD's listed than the NSDA's one, and they would be closer to what you're looking for, insofar as testing for other neurological disorders (including other dystonias).
Good luck to you!
-Kristina
Re: Can Someone Clear My Diagnose's up?
Nancy, I too welcome you to the SD BB You've found the right place!
I wanted to try to help find you a doc. I have my PVC (Pacific Voice Conference)workbook out, and this is what I see in your area:
Julie Blair, MS, CCC-SLP and Lucinda A. Halstead, MD--Dept. of Otolaryngology, Medical University of South Carolina, Charleston
James Koufman, MD, Wake Forest University, Winston-Salem, NC.
I get this information from the listing of faculty involved in the conference, and I think that should hopefully get you started in the right direction. That's about it in the Carolinas, though.
The links that David posted, and by contacting the NSDA, should get you better information.
To you and Kathy: I know how hard it is to wait to see a specialist for treatment. You want to be treated NOW. Botox is a very good treatment alternative, and has proven to be quite effective in most, allowing them to lead a normal life, without many voice restrictions.
Personally, I had a hard time accepting that I had an incurable disease, but you know what? It's not fatal, and there is treatment available, and a whole bunch of nice people willing to hold your hand through dealing with it.
Best of luck to you!
-Kristina
--modified by Kristina Gomez at Fri, Nov 17, 2000, 20:39:06
Re: Can Someone Clear My Diagnose's up?
HI KRISTINA,
THANKS FOR THE INFORMATION.
DR. LUCINDA HALSTEAD IS THE FIRST ENT SD SPECIALIST THAT I SAW, SHE IS THE ONE THAT MY INSURANCE COMPANY DENIED ME SEEING, THAT IS WHY I ENDED UP AT DUKE, IN NORTH CAROLINA.
WHICH THE DOCTOR AT DUKE TOLD ME THAT HE COULD GET THE INSURANCE COMPANY TO "OVERTURN" THEIR DECISION TO DENY ME ACCESS TO DR. HALSTEAD.
I WAS VERY IMPRESSED WITH HER, HAD SET UP BOTOX SHOT AND ALL, THEN INSURANCE COMPANY COMES UP WITH SHE IS NOT IN MY "NETWORK", AND YES I DID GET A PRE-APPROVEL FROM THEM TO SEE HER......GO FIGURE.SO,MY HOPE IS TO GET THE DECISION OVERTURNED SO THAT I CAN GO BACK TO DR. HALSTEAD IN CHARLESTON. THANKS AGAIN, TO ALL, FOR YOUR RESPONSE AND SUPPORT. I FEEL SO ALONE IN THIS FIGHT, IT IS HARD FOR FRIENDS AND FAMILY TO UNDERSTAND WHAT LOSING YOUR VOICE WILL DO TO YOU MEMIALLY AS WELL AS MY OTHER PROBLEMS, THE SPASMS AND THE SEIZURES. NOW, AT LEAST I KNOW THAT I AM NOT ALONE IN THIS FIGHT......NOT ALL ALONE. THANKS AGAIN,
NANCY
Re: Can Someone Clear My Diagnose's up?
I FORGOT TO ASK..........DOES ANYONE ELSE HAVE A RAW SORE THROAT ALL THE TIME???
Re: Can Someone Clear My Diagnose's up?
Nancy, the sore throat could be due to esophageal reflux, a common ailment that people with SD tend to have. I recommend trying to have your insurance claim appealed. And just a bit of advice, let the professionals handle your insurance company, rather then trying to do it on your own. People who don't know a whole lot about SD tend to make it sound as if treatment is investigational, and because most docs haven't even heard of it, that really puts the patient in a bind. One way that I have learned helps is to point out to them that it affects your breathing. Insurance companies take "affected breathing" pretty seriously. My ENT didn't know about SD, and seeing a specialist can be expensive, but what I did was learned about SD, told my ENT about it, that way, he could help me get help. It sort of worked. Your ENT, after being enlightened if necessary, should be able to get your insurance company to approve the claim. Another thing that I have found is that county hospitals generally take most kinds of insurance (including medicare) so if you can find a doctor who is at a county hospital nearby, you may be in business. Network, try to get into a support group in your area, attend a meeting or more, and talk to other people about where they go for treatment. I found an otolaryngologist in my area that gives botox injections by starting first with a Neurologist I heard is a movement disorder specialist, and asked him for a referral to a place that offers Botox, or an ENT that is familiar with SD and can treat it with botox. He told me about a doctor in his hospital that gives botox injections, and I had never heard of this person before, not through SD people, the NSDA or the DMRF. It may take a couple weeks or so to get your approval, but most insurance companies do pay for botox, and there is also a "Botox Assistance Program" for people who can't afford Botox. Check out the NSDA's or the DMRF's website for information on that program.
Nancy, we do understand hwo alienating SD can be. Losing your ability to talk is one thing, but losing your ability to communicate effectively hurts even more. My family didn't understand either, my parents thought I was nuts to pursue treatment, but I did my homework, and gathered my courage to do something about it, for me.
I was 25 when I got SD, 30 when I got my diagnosis. I too was unemployed and on disability, and wanted to work so badly, but couldn't because of my poor communication skills. I had to find treatment, or I wouldn't have been able to survive financially, without a job.
Determination to work was a great motivator for me, and I wasn't going to lay down and let it beat me. You do have some power, Nancy. You can do it. Let the doc appeal the ruling, it should work.
Best wishes,
Kristina
Re: Can Someone Clear My Diagnose's up?
Nancy, I am sending you the web page of the Center for Voice Disorders of Wake Forest University. You can get information about spasmodic dysphonia from this site. The Center for Voice Disorders of Wake Forest is located at the Baptist Medical Center in Winston-Salem, NC. Dr. Postma gives botox injections at this hospital. This hospital might be closer to you than Duke or Charleston. There is a spasmodic dysphonia support group in Charlotte, Greensboro, and Durham. These groups are made up of people with spasmodic dysphonia who share information about sd. I hope that this information is helpful to you.--modified by will blum at Sat, Nov 18, 2000, 10:26:23
Re: Can Someone Clear My Diagnose's up?
I just wanted to add a personal opinion. Dr. Postma is a wonderful man. I contacted him just after I got my diagnosis, when I was discussing surgery with other doctors, asking them their professional opinion, even though I am in California. Dr. Postma was kind enough to listen to me decsribe the procedure a couple years ago and provide for me his professional opinion. What I had asked, after describing the surgery, is if, in his professional opinion, it could theoretically work. Dr. Postma was kind enough to provide me with his opinion, and although he would have waited until more was known about the long-term effects of the surgery, he said that in theory, it would work. I decided to have the surgery, and contacted him via email to tell him I had it. He thought that it was great, and asked me to keep in touch with him to let him know how I am doing in my recovery. I have contacted him several times in the past 28 months to let him know that I was doing well, and *almost* got to meet him last week at the PVC. He was supposed to be presenting at the conference, and so I wrote him and told him that I'd love to meet him there. Unfortunately, he was unable to attend, and Dr. Koufman presented for him. I'm still kinda bummed out about that, but if you have the opportunity to see him, you're fortunate. Based upon the interest and care he's shown to an SD patient across the country, I would recommend him. Will is correct, the Wake Forest University's website is excellent.
Re: Can Someone Clear My Diagnose's up?
Hi Nancy, I have Spasmodic Dysphonia, adductor type. SD may be referred to as Spastic Dysphonia or Laryngeal Dystonia. It took 12 years for my condition to be correctly diagnosed. SD is so rare that alot of doctors are not familiar with it. I eventually went to Vanderbilt University in Nashville for Botox injections. I would suggest going to a large university hospital. I think they will have the expertise that SD requires. John
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