Hi everyone,I was diagnosed years ago with SD but am not real confident with the doctors I've seen thus far. My current ENT just told me this morning that she thinks I have a lazy vocal cord, MTD, and SD - and that all three are the reason for my voice disorder.
Frankly, I'm looking for a more difinitive diagnosis and am interested in hearing from everyone who reads this, which facilities are the BEST in the country for DIAGNOSIS of a vocal disorder. Location is not important. I'm just looking for the best. (Also, I'm not necessarily looking for the best SD doctor. I'm looking for someone who knows the difference between a paralyzed vocal cord, MTD, and SD.)
Any names of facilities and doctors would be greatly appreciated!!
Thanks.
Matt Marqua
AD/SD
Re: What hospitals and doctors are best for diagnosis?
Hi Matt,Since you're in Denver, you may be equi-distant from many excellent facilities/doctors in the US. If you actually have access to all of them, that would be great. My experience is that insurance plans often stand in the way. If they do not for you, you are truly fortunate. There are quite a few medical professionals throughout the country that I would feel confident receiving a definitive diagnosis from. As you noted, it is best to be diagnosed by an "SD expert" and often to get a second-opinion from yet another SD expert. Vocal disorders tend to be extremely complex. Don't we all know that. Good for you for trying to get to the bottom of your particular case and not accepting just any diagnosis, if it doesn't quite *fit* for you (maybe based on what you have learned on this Bulletin Board?). I guess that's why the NSDA put out an awareness campaign in 2000 called "Unlock the Mystery of SD" complete with theatrical "mystery" masks? It truly can be a mystery. I'll write you on your private e-mail re some possibilities (just professionals I've met in person so it would be my own personal, unscientific opinion). Good luck. --Lynne (AD/SD; Northern California)
Matt:Re: What hospitals and doctors are best for diagnosis?
I recently went to a neurologist who takes my insurance and told him that I had AD/SD (which I know I do), that the NSDA and many others say that it's a neurological disorder based on basal ganglia damage, and I wanted a note from him stating that I have SD and it is a neurological disorder, if he wanted to give me such a note. I asked him to put it in his own words, based on what I had told him, if he wanted to. He wrote a very concise note, based exactly on what I told him.If you can afford it, go to a very well known and "respected" specialist, and pay him/her privately. Of course, you have to know how to communicate with these people. They are just hired hands. Good luck. Richard
Re: What hospitals and doctors are best for diagnosis?
Matt, I live in Denver area also. If you want to email me privately I can tell you what I know about the specialists in this area. I've lived here since the mid 70s and was diagnosed with SD in the early 70s, so I know at least a few of them.Susan, AB/AD SD
Re: What hospitals and doctors are best for diagnosis?
Matt ,
After all is said and done, you are ultimately in charge of your own health care and you've already realized that all not doctors are not created equal. Remember half of the doctors in practive finished in the bottom half of their class including the doctors who finished dead last in their graduating class from medical school. Our task often ends up trying to find the really exceptional doctors, especially when we are faced with a rare disorder such as Spasmodic Dysphonia. I friend of my mine (who is a doctor himself) may have said it best "I don't only take all medicine with water but also with a grain of salt"...........well put! Don
Re: What hospitals and doctors are best for diagnosis?
Matt, the bulletin board is a great source of information. From what I have learned you can go to Los Angeles, New York, North Carolina, or Minnesota to see some of the top experts. I know nothing about the availability of specialists in your area.If I were you I would go to Mayo Clinic in Rochester. You would need to see Dr. Joe Duffy who is a PHD in Speech Pathology. He works very closely with Dr. Nick Maragos who is the ENT surgeon performing operations and administering Botox. I know that he has other patients in Colorado. I'm not sure who is at the Scottsdale clinic, but Minnesota definitely has a higher experience level. They are good at diagnosis. Good luck. John Comer ABSD Minnesota
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