Having EPCAM surgery 9-12
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Posted by: Kristan ®

09/05/2002, 21:34:58
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I'm scheduled for epcam surgery w/ Dr. Koufman at Wakeforest University 9-12 and was wondering if anyone else has had it and what their results were. I had bml surgery 3/02 and it helped a lot, but I still get some spasms and Dr. Koufman said this would help my vocal cords work together. I'd appreciate any input.

Kristan

ab/sd VA






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Re: Having EPCAM surgery 9-12
Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: Linda S. Adamson ®

09/06/2002, 09:22:09
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I'm interested to hear about both of your procedures, Kristan -- the one you had and the one you have scheduled -- since I didn't think there were very many surgical options for AB folks. I know I met Dr. Berke's first AB SLAD patient at the Scottsdale symposium, and she felt it had helped her a lot, but I also understand it may be only rarely applicable for AB patients. I'll follow your treatment with great interest.

Linda Adamson

AB, Annapolis MD






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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Linda S. Adamson Top of Thread Archive
Posted by: Cynthia Campbell ®

09/06/2002, 10:15:30
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Hi Kristan,

I'm also very interested in knowing more about both procedures.

Cynthia AB, Toronto







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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Linda S. Adamson Top of Thread Archive
Posted by: Lynne Martinez ®

09/09/2002, 23:41:52
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Linda,

The SLAD (Selective Laryngeal ADductor De-nervation) is only for AD cases. If you're referring to Colleen, who was in Arizona and who Dr. Berke deferred to and introduced in the auditorium, she had a completely different procedure from the SLAD (left partial PCA myotomy). Two totally different things. Or, are you talking about a different patient? I'm perplexed. Fill me in.

--Lynne







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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Lynne Martinez Top of Thread Archive
Posted by: Linda S. Adamson ®

09/10/2002, 13:29:28
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Lynne, I think I must have been referring to Colleen -- I've unfortunately forgotten the name of the lady I spoke with, but she was in the AB lunch conversation and she said she was Dr. Berke's first AB surgery patient -- but I completely missed the boat that it was a very different procedure. It figures that it would have to be; that's why I was confused.

Thanks for straightening me out.

Linda

AB, Annapolis MD






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Re: Having EPCAM surgery 9-12
Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: Kristan ®

09/06/2002, 23:54:20
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This is some info about my surgery for anyone who is interested. I have absd and a weak left vocal cord. I tried botox once but it didn't help and was very painful. I didn't try another injection b/c it wouldn't help my weak vocal cord anyway. I had bml(bilaterial medialization thyroplasty) surgery in March where silicone wedges are inserted beside the vocal cords to push them closer together. The surgery helped a lot and I would recommend it to anyone w/ ab and it's reversible so the wedges can always be taken out. The healing time was quick and the scar is barely visible. Before the surgery I whispered for about 6 months. It's still an effort to talk and I still get some spasms. My dr. said it was because my vocal cords are misfiring and not working together. He thinks EPCAM surgery will help. I don't know a whole lot about the surgery except it is performed under general anethestic(bml is under local) and a laser is used to cut some of the muscles. When I had bml surgery a small incision was made in my neck, but for epcam they go in thru the mouth. He said I would probably have a sore throat for a couple of weeks. I'm more anxious about this surgery b/c it isn't reversible and I'm afraid I won't have as much volume b/c it's kinda like taking out part of a motor. I think it is worth a shot though b/c I'm only 22 and don't want to go on forever wondering if I could make it better. If anyone has any more questions feel free to ask.

Kristan

ab/sd VA






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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: Cynthia Campbell ®

09/07/2002, 06:31:09
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Thanks Kristan!

A couple of more questions...... Do you know the size of the silicone

wedges implanted? I had unilateral medialization thyroplasty but my

ENT was very conservative and implanted a very small wedge. When

I first developed SD my vocal cords were abducting so much that it was an enormous effort to try to get a bit of volume out and I would feel

faint after a while. Eventually I gave up and as a compensatory behaviour I started to whisper all the time...that is how I speak all the time now. It's a nusiance to everyone around me but it's so much

easier on me. I'm curious to know how much your voice improved after

the BML? Definitely keep us posted on the Epcam Surgery - I want to wish you all the best from the bottom of my heart!! You're only 22 ..... you need your voice!!! I'll be thinking of you on the 12th.

Cynthia AB, Toronto







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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: Melissa Smith ®

09/09/2002, 10:21:24
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Good Luck with your next surgery Kristan. I will say a little pray for you. Your first surgery sounds like something I may be interested in. I would love to talk more with you about it could you please email me. Thanks a lot.

Missy







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Re: Having EPCAM surgery 9-12
Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: Kristan ®

09/07/2002, 15:27:58
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Cynthia--

I'm not sure of the size of the implants that the dr. used. I know that during the surgery he had put bigger ones in and then cut them smaller b/c they were too big. He said they usually put in one bigger one and one smaller one otherwise you have more symptoms of ad afterwards. I've had a great improvement in my voice. Before I wouldn't want to go anywhere or talk to anyone. I'm still self conscious, but not near as much as before. I used to have all the patients at work ask me what was wrong, but since then no one has said anything. People that I've met after the surgery said they didn't notice anything wrong. Did you ever consider getting bigger implants?

Kristan

ab/sd VA






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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- Kristan Top of Thread Archive
Posted by: gavin hadley ®

09/09/2002, 16:14:36
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Kristan..

I read the first two lines of your message and thought I was on the wrong board :-)

(sorry....couldn't resist)







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Re: Having EPCAM surgery 9-12
Re: Re: Having EPCAM surgery 9-12 -- gavin hadley Top of Thread Archive
Posted by: Kristan ®

09/10/2002, 22:02:19
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I reread what I typed and see how you could have gotten that impression. Of course it takes a male to respond to it:)






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