Re: Cords apart and perfect!
Congratulations on your surgery. I'm so glad it is working for you. I guess you have explained this surgery on the BB. However, I missed it. Will you please explain again. Is this in addition to the other surgery that you had? Very interested to know. The doctor was probably right on target when he told you that you were looking better as well. After my surgery, I was told the same thing. Not being stressed from the head and neck strain would probably make any of us look younger. I am so pleased that the surgery worked. Lylia
Re: Cords apart and perfect!
The operation is a thyroplasty, they insert silastic wedges between the cords to stop them hitting each other (very small wedges!). The thyrpolasty's been done for years for plasy of the cords etc, this was just backwards. It's a simple procedure that can be done when awake (if you can take it)! They woke me up during it but I can't remember - thats to make sure the wedge is the right size. As far as I know this surgery is fairly well isolated to Australia, the Netherlands and Japan at this stage.
I had one op and I shifted the wedge lifteing my child so had a second one on the 5th April this year. So, the recovery time is fairly short. They don't offer the Burke surgery here (the docs would have to come here and teach our docs!) so this was a good alternative and, it's worked!!
Cheers
Narelle
Re: Cords apart and perfect!
Thanks for the explanation. I'm so glad everything is working for you. Really good medical news. Lylia B.
Re: Cords apart and perfect!
Thanks Lylia,
It's nice to know that people can accept that it's working for people and that it can be an alternative for those who don't have access to Berke's procedure. Sometimes I feel like I can't say anything about my surgery becuase it's not the most common one in the US and people just don't seem to believe me. It HAS worked, and naysayers really get my goat, are they calling me a liar? :)
Narelle
xx
Re: Cords apart and perfect!
Way to go Narelle, I am so proud for you. I haven't heard from you in a while. I have had my surgery and am now at home recovering, but doing great so far. Still no volume, but I can whisper without spasms. Praise the Lord. Good to hear form you Narelle. Regards, Jan
Re: Cords apart and perfect!
Way to go you too Jan!! It is so good that so many more options are coming up for SDers, gives alot of hope for future generations and that's wonderful (gives us lot some hope too). 15 years ago I couldn't imagine having all these options, in 20 years time ...who knows :)
Re: Cords apart and perfect!
Wow, laryngeal framework. I had that done at the Cleveland Clinic in 1992 and it did NOT work! I had a very mechanical voice for a year. To me it was worse than having the spasms. Gradually, (within 2 month) the spasms returned. My doctor did not give me very much info on SD then and I thought I was practically the only one in the world that had it. When you don't know about something you have a hard time asking the right questions and that is what happened to me. He said that this surgery would replace botox. Within a year, I began getting botox shots again. He did not suggest it and I finally asked him if I could try it. Botox worked for me for almost 9 years but I believe because of the laryngeal framework surgery it became increasingly difficult for him to inject me because of scar tissue. The shots worked for a while when administered through my mouth (yuck) and while under anesthetic, but they quickly became way too expensive. Luckily, Dr. Berke said I would be a candidate for his surgery. One other lady that had laryngeal framework from my doctor had Dr. Berke's surgery about 3 months before I did. Today, she sounds good with no spasms and no mechanical voice and I have to say that I am extremely pleased with Dr. Berke's surgery. I do get phlegmy stuff sometimes, but it is nothing compared to the spasms or mechanical voice I once had. Norelle, I really hope the surgery you had will work for you. Email me privately if you to discuss the surgery further. I am curious where you had yours done. Good Luck:)
Re: Cords apart and perfect!
Well, the surgery is actually called Thyroplasty type 2 here. It has obviously come along way since 1992. All the patients here who have had it are feeling good! I guess this is 2001, and Australia is another country, so there are obviously some differences now. I have pitch control, can sing, can shout and have no spasms, a smooth voice - not at all mechanical. I think they have been working on this technique for quite some time over here and in several other countries. Like I said, the surgery has worked for me, everything is fine. I do not see this as a competition thing with Berke, just an alternative. Like you pointed out, I can have the shims removed at any time if something better comes up in the future (they are currently doing experiments with lasers which sound good - a few years down the track that may be the go). The first I heard of the type of surgery I had was in 1998 when Professor Isshiki started doing it (and did it at a conference in Amsterdam). The surgery I had is based on his ideas but has "morphed" somewhat. The ENTs here are really pleased with the results but are open to new suggestions, the reason they are prepared to do this procedure at this time is that it is reversible. I don't know of any doctors in the US who are doing this particular procedure, it seems to be isolated to the Australasian region, just as your surgery is isolated to the states. Just wish these docs would all get together sometime, that would be the best thing for all of us!
But just to reiterate, it has worked for me and other patients in Australia, the procedure has changed and is quite quick and relatively painless, and I am very happy. Things have obviously come a long way, and that has to be good news. When I first got SD 15 years ago no-one knew anything about it, even Botox wasn't heard of here, so it's onwards and upwards as far as i'm concerned :)
N
Re: Cords apart and perfect!
Norelle, I agree with you that it would be nice for doctors to confer with each other regarding these type surgeries especially when some of the surgeries have been so successful. To my knowledge, very few laryngeal framework surgeries are being done in the states now because they did not have a good success rate. Obviously, Australia is far ahead in their knowledge where this surgery is concerned and I am so happy for you that it has worked so well. I think it is strange that after I had Dr Berke's surgery, my ENY was very disinterested in the outcome and has not bothered to return my calls! You would think he might want to know the outcome just to help someone who is not having good luck with botox or whatever! Keep us posted!
Re: Cords apart and perfect!
Hi Narelle
I have only recently started reading the bulletin board again, and would appreciate you contacting me on my email address, ie barbara_williams@nelsonbay.com; as I am also from Australia (Tea Gardens in NSW) and would like to find out all about your operation, which doctor performed it etc etc. (I did not know you could have an operation for SD in Australia)
In anticipation!
Kind regards
Barbara
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