Re: Skeptical about the surgery
Dwight, I had Dr. Berke's surgery on Feb. 29, 00 and could not be happier with the results. My voice will never be "perfect" but it is a pleasant, spasm, strain free voice. I think everyone that has had the surgery is excited to tell people with SD that we have researched this surgery extensively and have had life altering results. Botox was my savior for many many years until it did not work anymore. I planned my life around botox. The results were 6 weeks of breathiness, 6-8 weeks of a good voice and downhill from there. The expense was overwhelming especially since I had to get them in the hospital under anesthetic in the later years because they were not working when injected into the throat. Dr. Berke and Blumin have worked on this procedure for years and have had great successes. They cannot say 100% that spasms will not come back-probably due to law suits, but after reviewing their concept, there is little chance that spasms will come back. My husband is an engineer and believes the surgery procedure makes perfect sence. Those of us that have had the surgery are in no way down-playing the importance of botox shots and if they work for you, you should stick with it, but if they are not working like they used to (and my doctor told me that people that have had botox for 10 years are starting to become immune to the syrum) there are alternatives. The surgery is not a super botox shot in any way. It is major surgery where the spastic nerve is replaced by a swallowing-non spastic nerve. Since it is major surgery, anyone contemplating it must research it thoroughly as there are many things that can happen as with any surgery. It is very hard to survive in this world with a whisper for 3-4 months. Some people don't want to have a scar on there neck, although mine has almost disappeared. People that have known what I went through before botox and before surgery are not short of amazed by the transformation of my voice and my life. Even if spasms come back in the years to come, I will never regret this surgery and I will never forget how thankful I was for botox.
Re: Skeptical about the surgery
Dwight,I think anyone who contemplates surgery should be skeptical. Surgery, generally speaking, and particularly in this case, is one big step. Now I've had SD for 13 years. I received botox injections for 10 years. I learned to adapt. As I looked down the road, I made a choice to try the surgery. If it worked, I would have at least 5 years - probably more - of a more normal life (without botox shots). I weighed the pros and cons carefully and decided to go with the surgery. I admit that the recovery has not been what I expected. I have been honest and stated (on this BBS) that Dr. Berke and Dr. Blumin both express that "on average" people recover their voices in 3 to 6 months. As I have stated before, however, I must not be average. It is taking much longer than I ever thought. At this point, however, there is no getting off the train. I remain confident that I will recovery my voice (as does Dr. Berke) but that because my vocal cord muscle was larger than normal (average?) it is taking longer (at least this is my belief). Once again, however, it is an individual choice. I know people with severe SD who won't take botox shots. While I cannot for the life of me understand why not, they are resolute in their position. I guess the same can be said for the surgical route as well. Clearly, however, many people have had the surgery and are very happy with the outcome. Frankly, other than the slow recovery of myself, Jeff, and Ron, I've not heard a negative word - on the BBS or otherwise. It may be that there are more critics out there, but we've not heard from them. Ultimately, you have to make the decision based on the information that is available - not on guess or speculation. I agree with your suggestion that anyone contemplating this surgery should approach the decision with considerable care and caution. I don't, however think anyone is being dishonest about their outcomes. John
Re: Skeptical about the surgery
Hi Dwight!I had Dr. Berkes surgery 11 weeks ago, I'm at the other end of the recovery scale, I'm already starting to get my voice back! so you see, some take longer and some not as long as the average 3-4 months....
But as far as the success rate, it's VERY high. My MD researched the surgery and gave it his blessing before I made my final decision.
Also, I doubt that there is an insurance company out there that would pay for it if it were'nt successful and hadn't gone through years of examination.....
I think your skepticizm may be the way that we all feel when we start to do our research about the surgery. When I started I wanted to find something wrong with it so I didn't have to make the decision to go forward with it. There were no guarantees that it would work, only hope for a new voice free of the symptoms of SD. It's a very scary decision and shouldn't be taken lightly. Like any surgery it should be given great consideration and plenty of research.
As far as promoting the surgery? what benefit would that serve any of us that have gone through it? the only reason I like to share my testimony is because of the way it has given me my life back, I only want to be able to share that with others that are suffering from SD.
I think we are all very greatful to Dr. Berke and his team, I owe that to them. They have never asked me or anyone else that I know of to spread the word about the surgery or try to promote it.... I think we all are just so excited about it that we naturally want to share that.
If you would like to speak to me and hear how I sound your welcome to. Yours TRULY,
Barb
Re: Skeptical about the surgery
I have been an operating room nurse for over 30 years. Being skeptical is a very healthy response to the consideration of any surgery. It is not wise to take anything for granted. However, I know that most of us that have had the SLAD-R surgery did not make the decision lightly. Because of information from the NSDA, this BB, and the kindness and willingness of people to share their experiences, I felt I was able to make an educated decision to have the surgery. Two weeks after the surgery, I was able to speak loudly enough to be heard person-to-person or on the telephone. Now, at almost 9 months post-op, I have a voice that is near normal. Last Tuesday, I attended a meeting in our church hall with about 50 people in attendance. I was able to address the group WITHOUT A MICROPHONE and be clearly heard to the back of the room! This surprised everyone, especially me! Having the surgery has given me my life back, and I believe that I am not alone in that sentiment. Dwight, if you need more information about the results of the surgery, by all means keep asking questions. Many of us who are recovering will be happy to speak to you in person if you need to hear our voices for yourself. I am not exaggerating the success of my recovery, nor would I want to lead anyone to believe anything but the truth about the chances for obtaining relief from our awful spasms. Drs. Berke and Blumin are very modest about their success rate for recovery, but from my years of experience as a nurse, I must tell you that I believe that their success comes from years of dedication and careful attention to detail and excellent technique which appears to account for an overwhelming number of positive outcomes. If Botox works for you, that's terrific. If not, it should be a comfort for you to know that there is another option that really works. Good luck to you. --Lloy
Re: Skeptical about the surgery
Hi Dwight, i also had the nerve surgery on April 13th of last year, so for me it has been about 9 months. Everyone is definately different in how they recover from the surgery and honestly you dont know how you are going to sound or how fast you are going to recover after you have the surgery. I also was very skeptical about the surgery at first and it was a year before i decided to have it done. I did alot of research on my own, i talked with Dr Berke a couple of times before i had the surgery, so it is something that you have to weight the good and the bad. For myself i had been taking the botox injections for 10 years, and getting to where the injections only lasted about 2 months each time, and most of that 2 months i was really breathy. But i have to say ( and i am not trying to promote the surgery) that this is the best decision i have made in my whole life and i am not saying this is a cure for SD, this whole nerve surgery is new, and we really dont know what is going to happen down the road, if anything, but i was at a point in my life where the botox was not working and i figured i had nothing to lose by having the surgery. I feel like now i have my life back, i have 100 per cent volume, no spasms and no catches, i think it is a miracle... But there again everyone is different, so you have to decide for you self what is best, no one can make that decision but you. We are just here to support you and let you know how it has worked for us, and also for some people the botox is wonderful and works great, but it was not working for me after 10 years!!!! ALL i can say is i am being as honest as i can about this, and people like Sherry, that have spoken to me on the phone will tell you that my voice is GREAT!!! and you would never know i had SD... HOpe this has helped you and if i can answer any more questions feel free to email me or ask right here on the BB.Take care
Martha
Re: Skeptical about the surgery
Dwight,I, too, had surgery in August of last year. I would love to tell you that I have a wonderful normal voice but after 5 months now, I have a quiet rather monotone voice free of spasms and strain. Some people still ask me if I have laryngitis. I still can't be heard in a large crowd but I can order at the drive-thru at MacDonald's, use the drive-thru at the bank, talk on the telephone with ease, and read quietly to my little granddaughter. These are things I could not do for the last two years. I took botox for 8 years and it was such a help although it didn't work or last as well for me as for others. For the last two years, botox was a lost cause so I felt I needed to make a decision on where to go next. I thought of trying a different specialist that gives Botox, taking a hiatus from botox, or trying the surgery by Dr. Berke. Like others, I did a lot of research, talking with others, prayed about it and made my choice. My voice was so bad I decided that even if the surgery didn't work 100%, it was something I could do to help myself and a chance I wanted to take. My doctor thought the surgery might be an answer for me also. My family agreed and my decision made after almost a year and a half of thinking about it. I would never recommend for anyone to have the surgery, like the others I can only describe what it did for me. Only time will tell how much more voice improvement I will have but I would never want to go back to where I was before the surgery. I took a chance and am so glad I did. I am hoping the future holds more volume and range for my voice and feel very optimistic that it will. If not, I still feel I did the right thing for me. We all need to be skeptical and search for the right answer for ourselves. I feel that's what I did last August. Take care, Dwight. Barb
Re: Skeptical about the surgery
Dwight, we understand how you can be skeptical of the Selective Denervation/Reinnervation surgery that some of us have chosen to undergo in order to improve our SD voices. Just like the others, I thought about the surgery for two years before deciding to take my chances with this procedure. We admit that you recover from the surgery as if you have had a massive Botox injection. A long, breathy period, difficulty swallowing liquid, and then a longer period of weak voice. However, we need to add to that none of us have compared it to a massive Botox injection. Deciding to undergo a 4 hour surgery is serious business for anyone. We have all spent hours and hours researching, reading, and deciding to undergo the surgery. Some in my family were very much against my having the surgery. However, this is something that each patient has to decide for him/herself. Never would I undertake to convince anyone else to have the surgery. But like the others, I do want to let people know that I have had the surgery and that I will be glad to talk to them if there is interest. With this information, they should be able to find answers to their questions so they can make their own informed decision for or against the surgery. Yesterday was 6 months post-op for me. The surgery has changed my life. Lylia Bennett
Re: Skeptical about the surgery
Thank you all for your comments. I may have been overly negative in my first message. Certainly, the surgery is a wonderful thing for those with severe SD. Certainly better than botox--botox hasn't worked for me either. (It's weird how enthusiastic the doctors tend to be about botox, I haven't met anyone who is entirely satisfied with it.) If I had severe SD, I don't think I would hesitate to get the surgery. But from an objective standpoint, from an outsider's point of view, my SD is extremely mild, too mild too warrant the surgery. But even though I sound fairly normal to most people, my SD is a major frustration--sometimes I even think it has ruined my life. It has certainly taken away my social spontaneity. I wish there were a cure.
Re: Skeptical about the surgery
Hi Dwight!If I had only mild SD I would probably have waited to see some of the long term effects from the surgery before plunging into it myself...
You have an advantage that I think many of us did not... to have a voice that still functions even though it may not be completely normal. You can stand back and examine those of us who have gone through with the surgery and make your decision later perhaps, if you need to. I can remember when mine was still only mild (not to say that yours will get worse than it is...) but it still caused me a lot of embarrasment and I found myself withdrawing socially. But for a mild case, if Botox is an option and it's working I would continue to use that treatment as long as you can. I think that Dr. Berke also recommends Botox for someone who's SD is not severe or who is responding well to Botox. Feel free to ask any questions you like about the surgery or Botox. Take care,
Barb
Re: Skeptical about the surgery
Barb, No, the botox shots never worked well for me. In my mind, botox shots don't even come close to being a satisfactory treatment. More trouble than it's worth. And why do you assume that botox and surgery are the only treatment options?
Re: Skeptical about the surgery
Surgery is the cure, if it works. John
Re: Skeptical about the surgery
Dwight,I also have mild SD, and I share your viewpoint that the severity of the dysphonia weighs into your decision on surgery. I'm trying to find my "optimal" voice using every noninvasive means I can find -- speech therapy, massage, antireflux medications, breathing and relaxation exercises, books and audiotape courses. Once I've optimized my SD voice, then I'll decide whether I can live with it as is, or move on to more "invasive" treatments such as surgery. With mild SD, the risk/benefit equation of surgery is difficult to solve. I hope you reach the decision that's best for you. -- Ed
Re: Skeptical about the surgery
Ed,I would strongly recommend that you give the medication Neurontin a try. There is no doubt in my mind that this med, significantly reduces the severity of my SD. Find a psychiatrist or neurologist who is willing to let you give it a try.
Re: Skeptical about the surgery
Dwight,This message responds to your last two replys. First of all, I don't think that Barb Johnson, or any of us, tout that botox and surgery are the only fixes for SD. They are the most prevalant ones, and the ones that most of us have tried. As I mentioned in my lengthy email to you, I tried many modalities to correct this disorder before having Dr. Berke's surgery three months ago. This BB is a format for everyone to share ALL possible solutions, which they do. Secondly, regarding your recommendation to Ed H. to take the drug Neurontin. I'm happy that this has helped you, but it is not wise to stay on any drugs for any length of time. As everyone should know by now, while a drug helps one part of the body, it damages other parts of the body. Since SD does not go away by itself, one would have to take Neurontin for life. - Joan
Re: Skeptical about the surgery
SD is a multifaceted condition with multiple treatment options.I think, the severity and the impact on day to day life pretty much determines the course we take. For me, It has been fruitful to continue with more natural alternatives. But I want you to know that there have been those bad voice days when I just wanted to call my doctor and say " go for it" do whatever it takes to give me relief.So I must say that I am glad the medical alternatives are available for those conditions that cannot be helped through natural means. I keep telling myself that I will give my natural/ alternative treatment a heroic try, but if it does not work well for me, it also gives me some security and comfort to know that, I still have one more option out there that I could try.
Re: Skeptical about the surgery
Dwight,I wanted to thank you for surfacing this subject. I remember an NSDA conference a few years back where I was the only one who was speaking positively about the impact SD-surgery had made on my life (and my ability to work and function). This was before any of the people on this BB ever had Berke-surgery. It was before I heard of Dr. Berke. It is good to discuss this!! You started an extremely educational thread. My personal opinion (like the other intelligent and experienced folks who have answered you) is that treatments for SD are a very personal decision and they involve alot more than just a procedure or flying to California or staying at the Tiverton House or putting Thick-It into your liquids. Psychology, support and severity of case all come into it. It's all about "comfort-zone" and what is appropriate for each of our cases. Experience with other treatments comes into such a decision. Time comes into it. Some of the people who've had surgery went many years on Botox; and, finally, it didn't suit their needs for one reason or another. Another personal opinion: SD-surgery should *normally* be reserved for severe cases. There are MANY other options for mild-to-moderate cases and the full variety of options should be exercised prior to surgery. BUT, if you can't work and you can't talk or be understood and you don't have a life any longer because your case is SO severe that you have lost ALL of your support mechanisms, including your family and friends (I was at that point), then surgery is a viable option which has been very effective for many people. Major Decision...not to be taken lightly. I didn't take it lightly and it's worked for me...and, as yet, I have met nobody on this BB who has taken it lightly. I am so glad you brought this subject up because I also have wondered about the decision-making process others go through prior to choosing surgery. I knew what my process was (and it was grueling); but I wasn't sure of others. I just hope this intelligent discussion has helped alot of people pondering the possibility of vocal surgery. Thanks for your post...... --Lynne
Re: Skeptical about the surgery
C'mon, Lynne. You have to remember how hard a decision it was for me!
I was scared to death. But I was even more afraid of having my life and my voice stay as it was.
Surgery isn't the answer for everyone, it should be reserved for those that have tried alternative methods and have had no success with them.
Drs. Berke and Blumin don't consider everyone as candidates, and never tell anyone that they will have a normal voice post-op. They will say that the results have been promising, then refer people to patients that have had the surgery so that people can listen for themselves. Drs. Berke and Blumin are the most modest specialists I have ever met. They are glad that they can help people, to alleviate their symptoms. I have asked Dr. Berke many times if he realizes what he has been able to do for the SD community, and he says that yes, that's why he got into medicine, to help people.
I tried Botox, I couldn't work around the side-effects and the ups and downs of it, I needed something more permanent. I owe my current success to Drs. Berke and Blumin, I couldn't have done it on my own.
Re: Skeptical about the surgery
Dwight, you're welcome to phone me. I had the surgery 2.5 years ago, and recommend that if someone is interested in the surgery, to contact as many people as you can find that have had it, and talk to them via phone. It's only until you hear it with your own ears can you determine how effective it was.
My numbers are:
(408) 378-4640, home
(650) 961-8300 x27, work. I live in California.
You hear many people discussing it because we've tried the botox injections, and have found something that is permanently giving us back our voices, and our lives. It's a blessing that we've been given, and the only way that we can help other people overcome their SD (if they be so willing) is to tell them about it. Information is key in beating this disorder.
-Kristina
Re: Skeptical about the surgery
Here's a message I was unable to post to the BB since my system threw me off. So I retyped it and sent it directly to Dwight last Sat. I cut and pasted it into the BB today as it contains info I'd like to share with others. Hi Dwight, Wow! This has turned out to be an exciting, informative thread, thanks to your skeptical first message. That's one way to get everyone to come forward and express their passionate viewpoints. First off, it's important that you understand that there are different surgical procedures discussed on this BB. Dr. Berke's surgery (performed at UCLA Medical Center) is the one that most of those who responded to you have undergone, including myself. Then there's Dr. Dedo's surgery that others on the BB have undergone. Over time this procedure has shown to have only about a 50% success rate. And there are other procedures available out there also. I don't know how long you've had SD, but typically it gets worse over about a period of a year. And after a year, I've been told by doctors, the demise of the voice levels out. That's pretty much what happened to me. I was performing in a cabaret show every weekend (spring '99) for a couple of months and having difficulty singing a few of the notes. I thought I was just tired. My job, as an inside sales rep, became more and more difficult, as I was on the phone all day. In July I choked on a large calcium pill, which had to be surgically removed from my throat. After I came to in recovery, I asked the E.N.T. doctor what was wrong with my voice. He said I might have SD and sent me to voice pathologist, Dr. Izdebski in S. F. After thoroughly testing my vocal chords, Izdebski confirmed the diagnosis and offered botox or surgery. I told him I wasn't interested in either saying I wanted to do more research. This is probably where you are, Dwight. I thought that surgery was out of the question, that it was an unnecessary and invasive procedure. And to be honest with you, the whole idea of having my throat cut scared me to death. Botox was also not an option for me. I am a devout student of alternative medicine, having won my 10-year battle with Chronic Fatigue Syndrome. My body was ravaged with disease at that time and I had many food and environmental allergies. I wasn't about to put the deadliest poison known to man in my body, no matter how minute the dose. We still don't know what the long term affects botox will have on the body in years to come. I jumped onto the Internet and found this BB, along with other sites with information about SD. It was here that I learned about Dr. Berke. While his surgery still treats the symptoms of SD, and not the cause, it has been successful in 95% of his patients. Nothing else has helped people with SD more than this. While the neurological condition still exists in Dr. Berk/Dr. Blumin's patients, the spasms are eliminated by severing the spasming nerve. And, Dwight, as you have read on this BB, after surgery, our voices return at different time intervals. Talk with Kristina Gomez sometime, who had Berke's surgery 2 1/2 years ago. You would never know she had had anything wrong with her voice. Men like John Beeman are taking longer to get their voices back due to the size of their voice box. I spent a year first trying to get my voice back before I finally, out of desperation, decided to have Dr. Berke's surgery. I, like Ed H., tried speech therapy, massage, and exercises. I also did healings, photon stimulation (raising my body temperatures through infrared guns), and electronic brain wave stimulation (to get at the SD cause and shake it back to normal). I even flew to L.A. and worked a week with Dr. Morton Cooper, voice pathologist who claims he can cure SD through exercise. I did get my voice back for ten days, but then it fell back into the monster voice it had become. I also worked with a voice teacher who claimed she could cure me with singing in a higher register. Everyone wants to take credit for fixing you, but none of them could. Izdebski was pissed at me for going to Cooper (who he hates); the singing coach was angry when I left her and said I was thinking of going back to Cooper. And Cooper and Izdebski were angry when they learned that I was going to have Dr. Berke's surgery. In the meantime, I'm the one who's suffering and they're all fighting over who has the cure. As John Beeman wrote, Dr. Berke/Dr. Blumin's surgery is the closest thing to a cure available today for SD. Isn't it worth the months that it takes for the new nerve to reinnervate, to have a spasm-free and wonderful voice for the rest of your life? That's the question I had to ask myself, and of course, the answer was yes. It's been three months since my operation and my voice is gradually getting stronger and louder. All of us folks, who have had the procedure, write about it openly because we want to share information. We also want the feedback from fellow SDers for their support and different experiences and ideas. That's what this BB is all about. We're not here to sell anything, but to learn from each other. We all have family and friends who still don't get it -- who still don't understand what happened to us, and often say the wrong thing. Here on the BB we all have a commonality, that is, most of us have SD and a true understanding of what we all go through. Here we can show our true compassion and caring as we travel this road together. Good luck, Dwight, with your research and decisions regarding your voice. Best... Joan Carole --modified by Joan Carole at Tue, Jan 16, 2001, 16:16:30 --modified by Joan Carole at Fri, Jan 19, 2001, 15:25:27
Re: Skeptical about the surgery
Thank you all again for the information. I've been suffering from SD since I was 14--I'm now 29. Even though I have a mild case and I have gained a great degree of control over my voice--(I've done TONS of voice therapy)--it still hampers my life on a daily basis. In some ways I almost wish that I had a more severe case of SD, then I could get this Surgery! But then again, to be honest, I know my voice is not that bad, most people don't even notice it. So I should be more grateful, I guess. I am still wondering, though, whether some people might still be having spasms after the surgery. I actually did speak with one person on the phone who had had the surgery and it sounded to me like there may have been some minor spasms--despite otherwise fluent speech. And then there was a post I saw a few weeks ago. What are people talking about when they say, they wish they hadn't developed the habit of pressing their voices? Are these residual dysfluencies really bad habits, do they feel fundamentally different from spasms?
Re: Skeptical about the surgery
Steve, surgery should be reserved for people with moderate-severe SD and should be used as a last ditch effort in receiving treatment for SD. If you have mild SD, and most people can't tell, then you shouldn't have the surgery. My SD was really bad, I couldn't work because of it, and that was the reason I wanted to do something about it. I couldn't live my life as it was, something had to change, for better or worse, something had to change.
I'm 33 now, and it's changed my life, but for you, it doesn't sound to me like it's something that you would want to consider. No one ever promised a perfect voice after the surgery. They have had success in getting people a normal voice, but there are no guarantees. I don't have a perfect voice, but I do have a normal voice. Not a soul has asked me what was wrong with my voice since having the surgery, I can order food through drive-through windows. Those two things indicate to me success.
Bad habits are hard to change after having SD. I saw a speech patholigist at the Victoria conference and she said that she didn't hear a "catch" like Dr. Truong stated, that when speaking, or when I get ready to speak, I take a deep breath and then try to forcefully speak to get the air past my vocal muscles. Now that my vocal muscles aren't closed anymore, I shouldn't be forcing air to speak, so I have to unlearn that habit. Those habits are hard to break because they are done unconsciously, and a conscious effort needs to be made to correct it. That's why I recommend speech therapy after the surgery if they can get it, however, my insurance doesn't cover speech therapy, so I can only pass along what I have learned.
Re: Skeptical about the surgery
Thanks Kristina. That makes sense to me.
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