Greetings,
Today marks two years since I had the SLAD-R surgery from Drs. Berke and Blumin. I thought I'd post a report for the benefit of those who might be considering the surgery or for anyone else who might be interested. I haven't followed the BB for some months now, and hope that this is still accurate and relevant.
I remain without a voice. I whisper. Videostroboscopy reveals two paralyzed and atrophied vocal cords, which despite a bilateral thyroplasty (and subsequent "adjustment"), come nowhere near close enough together to make any sound. Prior to the thyroplasty, the vocal cords were barely even visible. My ENT has conceded that he has never seen a larynx damaged in such a way as mine has been, yet suggests that I see a specialist back east for further evaluation. I may do this. I do not hold out much hope at all at this point in ever having a voice again.
I have heard it said that the failed surgery is peculiar to males, who reportedly have larger larynges. I have a problem with this. In the scientific study that Dr. Berke's office sent me prior to my surgery, it was indicated that nearly half of the subjects (10 out of 21) were males and that all of them (as well as all of the females) recovered their voices. Have there been any more recent studies done with larger groups of patients? I don't know. If there are, I would certainly like to see them.
One particular statistical item troubles me. Dr. Berke has reportedly been doing this surgery for at least 8 years. He noted at the recent Arizona SD symposium (2002) that there were "probably only 2 men who had not reinnervated". I am one of them. I know who the other one is. The oddity is that we had our surgeries only 7 days apart. I would rather not speculate on why this is so, but I believe that, for whatever reason, it is statistically significant. Again, if anyone has knowledge of any more recent SLAD-R follow-up studies, I would appreciate the information.
I'm getting by well enough without a voice. I'm still employed. I have kept fairly active. I have more or less adapted. I am thankful to God that things are not worse. I am also thankful for answering machines and email! Thanks also to those of you who have been supportive. Anyone is welcome to contact me by email if I can be of any assistance. (jefbrode@spinn.net)
Jeff Brode
--modified by Jeff Brode at Thu, Jun 06, 2002, 18:10:15
--modified by Jeff Brode at Thu, Jun 06, 2002, 19:41:54
--modified by Jeff Brode at Fri, Jun 07, 2002, 20:21:14
Re: 2 years after Berke surgery
I am speechless after reading your post. I have followed your postings and John B's over the past 2 years very closely as I had just been diagnosed with SD (AD). Was hoping for all of us that your pioneering efforts would benefit all of us.I am still amazed at the number of people (mostly women) that post about going for the surgery after your experience. As bad as my voice gets at times, I could not image living without a voice. I am 2 years into the Botox and at 41 can't image taking these shots for the rest of my life. I have ventured into taking Neurontin, but only find that it helps make my voice quality better in between shots. I hope that Dr. Burke can learn from his mistakes so that the procedure can be altered. Prayers are with you that something can be done to help your situation. John
SD/AD
Re: 2 years after Berke surgery
Jeff,
I am learning so much. The Mayo Clinic specialists have not even mentioned options such as surgery or neurontin. Maybe, my disorder does not warrant either. I cannot say that I know how you feel about your experiences, but I can say that I think you are courageous and determined. Your story, hopefully, will help all of us gain perspectives on progress, or lack of it, and also may help surgeons develop better approaches. It is strange that the two failed surgeries done by Dr. Berke were spaced within a 7-day period. Possibly, an approach repeated that just was not right and it took two to understand that. Makes us feel like the proverbial Guinea Pig, eh? We're pioneers forced into discovery. Good luck and keep moving forward. Dave
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