Posted by: Barbara S. White ®
03/08/2006, 13:47:58
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Hi Carla,
Actually, I was diagnoised with asthma long before I had an SD diagnosis. Unfortunately I had SD almost 30 years before I was diagnosied. In fact I was hospitilized four times with asthma / pnemonia in a three year period afte being diagnoised with asthma. Something interesting I found out just recently. With SD sometimes you can wheese just like with asthma and many people have been improperly diagnoised with asthma prior to finding out they had SD. The difference with the two is that the breathing difficulity from asthma comes from the lungs and the breathing difficulity from SD comes from around the throat area, actuallyi swelling in the vocal cords. Don't assume that just because you are wheezing tht you have asthma. Maybe you do and maybe I do too but I have heard that the symptoms are often misunderstood, especially since so little has been known about SD. I always had .5 units of botox and never had a problem with breathiness until the one time I insisted on having 1 full unit in each side. I experienced breathiness, difficulity swallowing, all kinds of asthma symptoms etc. The good voice lasted longer than usual with the full unit, however the first month was miserable. From than on I let the doctor do what he wanted and had no problem. I did start having breathing problems about a year ago but not right after the botox. Rather when I was in need of a botox injection I struggled for breath. I had the SLAD surgery three months ago and it was very successful. The initial symptoms are much like when I had that one unit of botox except the symptoms lasted about three months. I was told it would be that way before hand. I did have a voice immediately after I woke up from surgery however and it has improved daily. I still have some braething difficulities but not as bad as before the surgery. I read one of the posts on ZHT therapy (trecha displacement causes breathing problems in a lot of people that don't have SD as well as those who do.) ZHT therapy is done by a chiorpractor to get the trecha back in place. I have only had one treatment so far but it helped a lot. (though somewhat uncomfortable for a couple of days) Some people are getting it and say it helps their voice. My voice is pretty good from the surgery but I am trying to get help for my breathing. Many people with vocal cord disorders has a displaced trecha and ever tongue. I am not recommended either the surgery or the ZHT therapy because I know that what works for one does not work for another but just telling you my experience. Before you assume you have asthma, get the asthma test. Not just have a doctor listen to your chest and say "Ah asthma" That is not a sure test. Since I have started being trated for SD I have had very little problems with asthma symptoms. As for the botox, perhaps the dose it too large for you. Ask you doctor to give you less botox. 7 units is a lot and maybe that is what you need but there is a lot of experimenting going on when you first start botox or any other treatment and it doesn't hurt to try a lesser dose and see if the side affects are less. .5 untits is (I think) the smallest dose given and it worked great for me. I had almost no breathiness or swalling difficulties. Still that is not enough to do anything for others. I was just reading my diagnosis from three years ago by my voice therapist. I had major tremmors, and severe AD SD. My tremmors stopped somewhere in the time I was getting botox or maybe it had to do with voice therapy. I don't know but I had no tremmors before surgery. I don't know why the doctor started me so low on botox but it worked for me and 1 unit was very stressful for a month. Some people have as much as 10 units. As far as I know that is the most. I could be wrong. There are actually several different treatments that are avaialable. I've learned a lot on the BB. Don't assume you have to just get used to your treatment as is. Some doctors are better than others. Some people use different amounts of botox and there is only injecting one side and waiting a month to inject the other (which has less side affects) If you are miserable with your side affects start asking questions and check out different treatments. Botox seems to be the number one treatment for most and seems to work for more people than any other treatment but we are all different. You deserve the best possible treatment you can get and remember the doctors are learning too. SD has been diagnoised for such a short time that we all have a lot to learn. That's why the BB is so helpful. Different people in different areas are trying different treatments and having great success. I really doubt if asthma was caused by botox but like I said wheezing can happen with SD too. I truly pray that you find an answer that works for you. If you have asthma that you are able to get it successfully treated and if its just SD that you learn exactly what you need as far as treatment. Email me if you like.
Blessings, Barbara god4me@comcast.net
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Posted by: Barbara S. White ®
03/08/2006, 13:57:35
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Hi Carla,
I understand that there are a few people being diagnoised with asthma that have SD and also that some of the symptoms of SD mimic asthma. I have had SD for almost 30 years but just diagnoised about 3 years ago. I have also been diagnoised with asthma but my doctor that I have been seeing for 3 years is not so sure I have asthma now. I wheeze sometimes and have even been hospitilized with asthma and pnemonia 4 times. I always had .5 units of botox and it worked graet with almost no side affects. I requested 1 full unit once and had all the side affects you mentioned. Some people have as much as 10 units with little side affects so it all depends on what you need. You might try a smaller dose and see what happens. I would suggest you talk to your doctor about trying a smaller dose. There are many different treatments being offered now but botox is still the primary treatment for SD. It works for most people but not for everyone. It doesn't hurt to experiment with the dose until you find something more comfortable for you. I pray that you will find something that works comfortably for you so that you don't have to feel so miserable. Feel free to email me if you like.
Blessings, Barbara god4me@comcast.net
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Posted by: christine ®
03/08/2006, 14:19:59
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Hi Carla,
I had my first AB botox shot 3 weeks tomorrow. My side effects lasted for the first couple of days (extreme stiffness in my neck, lumpy feeling in my throat, general discomfort). My voice really has not improved. Actually, it does sound different. Sounds a bit like talking with gravel. I don't know if that is a plus or not. I'm trying to be hopeful, but I don't know if this first shot is going to do anything. As for the asthma like symptoms you described, I haven't experienced that. It must have been kind of scary. I'm wondering if the dose was too high? I hope your doctor's appt goes well.Best wishes,
Christine
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Posted by: ccarick ®
03/08/2006, 18:14:45
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Hi Barbara and Christine,Thanks for the information and good thoughts. I went to the doc and have no signs of asthma. Instead, he thinks I experienced a bronchospasm, perhaps related to the cold temperature and entirely unrelated to the Botox.
This very well could be the case, but I can't help but think that there is a direct connection between the two, especially as I've never experienced this before B. I guess we'll learn more as we move forward with this. By the way, Barbara, before being diagnosed with SD, my GP ran through a range of possibilities, with the final one being asthma. We tried treating that, but after no apparent benefit, she referred me to a voice specialist. Several months later, the dx was confirmed by my ENT and a speech pathologist. Christine, I'll be interested in hearing if your treatment kicks in. It sounds as though we're experiencing similar side effects, and I'm finding it reassuring that there are others who are--and have been--right where I am. Enjoy,
Carla
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Posted by: Barbara S. White ®
03/09/2006, 01:24:41
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That sounds like pretty much the same thing that happened with me. I was diagnoised with asthma first. There are some lung tests (ultra sound) and pulmanary test that have to be done by radiologist or something other than regular doctor. I wasn't too bad when I had the test so they came out with very mild asthma. I had been diagnoised with severe asthma before the tests. You very easily could have asthma but some of the side affects you are having are common when botox is first injected. I didn't really have much of the side affects except the one time when I doubled the dose. Even if you do have asthma I would consider asking the doctor to lower the dose. I'm just thankful they started me with the lowest dose. That way I knew how it shoud be and when I had the double dose I knew it wouldn't have to be that way all the time. I truly know what you are going through from that one time. I choked on everything I drank, couldn't swallow, coughed and could hardly speak but just that one time. I truly pray that you will not have to continue to suffer with such severe side affects. I know there are others that have severe side affects too. I personally doubt that the botox caused the asthma but I am not a doctor but can't help but wonder if it causes breathing problems. I never had the breathing problems until I used botox and not until I had the injections for over a year. I guess there is still a lot we just don't know yet but there is a lot of good advise on this BB from others experiences. Experience is the best teacher. Be blessed.
Barbara / god4me@comcast.net
Modified by Moderator-WB at Thu, Mar 09, 2006, 18:49:53
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Posted by: snowie ®
03/09/2006, 16:46:32
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Hi Carla, Barbara and Christine,This is an interesting subject for me as I have asthma and AB SD... I was diagnosed with asthma about 10 years ago and then with AB SD about 2 and a half years ago, although the SD started about 5 years before that. One way of diagnosing asthma is through a lung capacity test with a peak flow metre which tests your lung capacity when you breathe into it. As well as Carla mentioned by being given treatment through inhalers to see if this improves your breathing capacity. I have written about asthma and SD before on this BB as I was having problems with my breathing and wasn't sure whether it was as a result of the AB SD or asthma. I recently saw a speech therapist who explained how asthma effects the lungs, as Barbara said, and how breathing can be effected by AB SD. The Speech Therapist has made a referral for me to the Chest Clinic as my diffculties with breathing has been an on-going problem. My peak flow (breathing capacity) also drops very low at night time. The referral detailed my asthma and AB SD, so hopefully when I get an appointment with a specialist, we will be able to work out what is going on. The difficulty seems to be in finding a doctor who specialises in both respiratory conditions and SD. As others have mentioned breathing problems can be caused for other reasons such as being given too much botox, or the botox spreading to other muscles which can restrict the airway. There is also a condition called PVFM, (paradoxical vocal fold movement (?) .. more information can be found on this by doing a search in the archives) this seems to cause breathing problems particuarly for people with AD SD. I am not sure if this condition effects people with AB SD. I hope to eventually get some answers on this subject, and would be very happy to discuss this further with anyone who is interested. With many best wishes to you all, Snowie
AB SD, London, UK debbie.skerrett@ntlworld.com
Modified by snowie at Thu, Mar 09, 2006, 16:52:47
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Posted by: Barbara S. White ®
03/10/2006, 11:46:53
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Hi Snowie,
Very interesting information. I have also heard that treacha and tongue displacement can cause breathing problems. I had an xray done by the chiorpractor a little over a week ago and found that I not only have trecha displacement but also bone spurs on my neck bone. (probably from an accident)He is working on the trecha a little each week. The treatment is called ZHT Therapy. It really helped after the first treatment, however I will still need a few more treatmens to fix the problem. I have some exercises I have to do inbetween visits. I believe from reading different information by different doctors that there is a lot of misdiagnosis on asthma. Even the peek flow meter doesn't tell all. It tells what you air flow is but there are different things that can decrease air flow. I was told a few years ago that I had severe asthma. I went through ultra sound on my lungs and a very saficated testing by a specialist. He had all kinds of special (hugh) machinery. The testing proved that I had mild asthma. I have been reading about a lot of the brething problems with SD, in fact I believe it was on the ZHT Therapy page and they say that SD mimics a lot of asthma symptoms but that the breathing and or air flow problem is actually not from the lungs but from the throat area. I have have a lot of breathing problems so am investigating everything that it could possibly. I would be interesting in talking to you more about this if you want to email me.
Blessings, Barbara / god4me@comcast.net
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