I Feel Lucky That During This Time My Company Was Doing Additions And Renovations To A Physicians Home. He Reffered Me To Another Ear Nose And Throat Doctor That Diagnosed Me With SD And Reffered Me To Southwestern Medical In Dallas, Had My First Botox Injection 10-16-02

With Results Beginning 10-18-02. I Am Curious As To The Road To Diagnosis Traveled By Others With SD.



My Heart Goes Out to All That Have Suffered For Long Periods With Out

Proper Diagnosis Or Treatment.

After being diagnosed in 1998 I began taking injections of Botox Type A for a period of 2 years. Then after taking 3 Botox injections within 3 months time and my voice not getting any better, but worse in my case. I learned on the internet about the NSDA and the surgery Dr. Berke had pioneered and was offering to folks. So I began my research study and got names of folks who had had the surgery from the NSDA. Then I began to call and email all of them and tell them my story and ask questions regarding the surgery. I was referred by one of these nice folks to go to this bb website. And I am every so grateful to him for telling me about this wonderful place online I could go to for support, because there was no support group in my area or even near that I knew of at that time. And there is still no organizated group per say, but there may be before to much longer. I've been ask to start a support group in my area for folks and a friend of mine and I have been seriously thinking about doing so. So I think it is really only a matter of time until Alabama will have a support group they can attend. However, back to the bb, it has been a wonderful and wealth of of support and information to me and my family and I am so proud there are so many great people out there that are like you and me and are willing to help one another. I've truly learned more here and online chating with others who have this terrible disorder, than any doctor in my state has ever taught me. After the Botox didn't work for me after 3 times in 3 months, I decided with the support of my husband, friends and the people on this bb to have Dr. Berke's surgery. It is called, "Selective Larngeal ADductor De-Innervation/Re-Innervation". I had this surgery in June of 2001 and recovered for a period of 3 months and 2 weeks and then I got somewhat of a normal voice back. And every day my voice got more volume and stronger until it sounded great and it still sounds great. I think it has gotten as good as it is going to get and I do have limitations, but nothing like it was before. I am so happy and pleased with the out come of the surgery and if I had it to do over I too would do it in a heartbeat.

Yes, of course I live with the fear of the unknown future, but I try each day to go on and not dwell on it too much and just be happy with what time I've already had and have now. I do get down sometimes and think at the slightest mis-function of my voice that "Oh No, Please Not Again". As I assume everyone who has had there voice pulled out from under them in the midst of life and had to deal with such a terribly frustrating disorder, much less having to find the right doctor.

But Thanks to the Awareness that has been made out there by the good people on this bb and the NSDA there is a lot bigger chance of being diagnosed earlier than most of us here on the bb have been. Too there are several ways in which to treat and cope with SD.

I truly appreciate and have the highest respect for folks on this bb who continue to contrubute and share things regarding SD!

I first saw my family doctor this spring and he told me it was probably psychological, but he was GRACIOUS enough to give me a referral to an ENT who agreed with my assertion that it was SD. He in turn sent me to a speech pathologist who sat with me through 6 weeks of speech therapy which was ineffective. Back to the ENT I went for my first Botox injections, 10 days ago. From start to finish, my actual diagnosis took about 3 weeks. It may never have happened if I hadn't been armed with information when I visited my family doctor. I had to insist that he provide me with a referral. I was fortunate to have an ENT with extensive experience with SD and even in giving Botox injections. His name is Dr. Andrew Jun and he's affiliated with Rockford Health Systems in Rockford, IL if anyone in that area wanted a great recommendation. You can reach him at (815)971-2000. He's awesome.

But back to your question, my particular diagnosis was very easy and short, but only because I was prepared when I saw my family doc. It's so horrible that so many of you waited years to find out what it was.

And I with the others, the more we can make the public and the doctor's who mis-diagnosed us The BETTER!

Wonderful point made here and very important too.