|
|
|
|||
|
| Botox no longer working |  | ||
| Archive | |||
|
Posted by: kassareevw ® 08/17/2012, 11:32:13 |
I was diagnosed in 2004 with AB/AD SD with tremor. I started receiving Botox treatments every three to four months with amazing success. It was a trial and error period, with breathiness that went away, and my "normal" voice emerged. My tremor was gone and breaks in my voice we all gone as well. With so much success, and my confidence growing, I decided to go to school and earn a certification. I was so happy to finally be able to move forward with my life. For two years now, I have continued to receive Botox treatments with little or no success. I kept hoping that the next injection would work. When I would retun for treatment I would tell my doctor that they were not working, so he would adjust the dose. That didn't work, and is still not working. I had my last injection 9 days ago, and this last one has not worked as well. I am still having breaks in my voice that I never used to have while receiving Botox. He is concerned that if he up's my dose again, that I will be wayyyy to breathy. I may be in the minority here, but I would rather sound breathy then experience the voice breaks, and the anxiety that comes with them. My doc decided to decrease my dose to a level that worked successfully two to three years ago. I felt as though he was deciding for me, wasn't really listening to me, and not interested in trying to figure out why the Botox was working, and now is not. I realize that I am my own advocate for my treatment, and half of this is my responsibility as far as communicating with my doctor, however every time I go to get my shots, I feel shot down to some extent in regards to my concern over my botox continually not working. There are always nurses in the room, or doctor's I have never met, observing the procedure, and so I never feel completely comfortable sharing my feelings and experiences with my doctor. Part of it too, is that for some reason, knowing that while I am speaking, my voice is being scrutenized, I get really nervous, and I shut down. I don't like speaking too much when I am there, as I feel embarassed by my voice. Everything is usually one-word answers coming from me. A lot of times, I feel put on the spot, which makes me super anxious as everyone in the room is focused on HOW I sound. It's too much pressure for me. I feel a lot like my doctor doesn't believe me sometimes! When I am home with my family, my voice breaks. When I speak on the phone my voice breaks. Every conversation is such a psychological energy zapper. But when I go to my doctor's office, I don't speak much. I'm uncomfortable. I turn into this super introverted, quiet patient. I'm so frustrated. Has anyone else experienced Botox working, and then NOT working? I have no idea why this is happening. I don't want to continue to receive these shots with no confidence in whether or not it will work "this time" and have my insurance shelling out that amount of money for a treatment that is not even working! My doctor won't even entertain the idea ot seems, that Botox has just stopped working for me, but he will continue to inject me. He won't suggest or educate me as to why this could be happening. Thank you for reading my post, and I hope my fellow SD'ers will have some sort of insight for me, suggestions, answers and/or a similar experience with Botox.
Modified by kassareevw at Fri, Aug 17, 2012, 13:13:25 |
| | | | Current page |
| Replies to this message |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: Dwight ® 08/17/2012, 12:30:39 |
Yes, my first botox shot worked and then they quit working and I stopped getting injections. I had to find a new doctor and raise the dose considerably. My last shot was 7 units total. I suggest you try something above 5 units. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: Renee ® 08/17/2012, 13:07:53 |
On my last shot, I had a very bad shot...I "gurgled" for three to four weeks, before I, finally, went into a normal voice...Sometimes, botox doesn't always work as expected...If you have adjusted the dose, and done everything else possible for a NUMBER of times, I would recommend going to another doctor, although this might not be feasible if you are going to the only one in your state...Where do you live? Most big cities by now have got at least one botox doc...If you are living in a smaller community, you probably have to drive quite a ways to get your shots...That is the reality of this disorder at this point in time...This is very rare and not many docs are doing the shots...
|
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: marylea55 ® 08/18/2012, 17:38:25 |
I would consider locating another doctor who will partner with you My experience is similar and recently went for a second opinion after 2 years of Botox without the desired outcome. I began sometime ago recording my voice before Botox, hours after Botox and then once a week. The result of my second opinion was confirming ADSD + vocal tremors which can be treated with medication. The NSDA should be able to help you with information for another doctor. Be sure and check with your health care provider. I'm battling it out with mine now to start treatment with the new doctor. Since he's considered "out of network", it's a more difficult process however will continue to pursue. He offered treatment options that had not been offered to me before. Most of all, he listened to me. Good luck! |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Re: Botox no longer working -- marylea55 | Top of thread | Archive | |
|
Posted by: kassareevw ® 08/20/2012, 16:29:59 |
Thank you so much for your response. There is only one ENT in my state who specializes in injecting the botox, and he is my ENT. Would you be able to tell me what medications have helped you? I am currently on .05 mg of Clonozopam, which my primary doc prescribed to me to help with the anxiety associated with the SD. It also does help a bit with spasms and tremor. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: Dwight ® 10/22/2012, 16:25:14 |
You may need to go out of state. I drive six hours. In the past every time I went to a Dr. who wasn't an expert with years of experience, the botox wouldn't take. Are you familiar with the big names? It's still a fairly small group, i think. What state are in you in? Maybe your insurance would still pay for some of it, if you contacted your state's division of insurance, Consumer Advocate. This is something new under the Affordable Health Care Act, and it helped me get full coverage for my botox shots. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: mab ® 08/21/2012, 09:58:20 |
Hi, So, sorry that you are having these problems. This disorder is bad enough, but then when your treatments are a problem.... UGH ! I, too, have AB/AD with a tremor. I have had it for many years (over 25). I have gotten botox injections from 3 different doctors with mixed results, usually negative results. My doctors at UC Davis in Sacramento probably had the best results. But, after I retired from teaching, I went regularly to get injections, but the doctor and I both decided that the shots were actually making my voice worse, so as of now I am not getting any injections. I am dealing with the voice disorder on a level field, not the ups and downs of post-injection, pre-injection, etc. You know what I mean.
I want to speak to your comments about your anxiety at doctor appointments. I, too, am NOT an extrovert. But, I feel that "I am the expert on my voice" so my doctor better listen to me, and I always felt glad to see other doctors in the room. I felt that way because there are so-o-o many ENTs out there that know NOTHING about SD. I was always glad to see them and to educate them. (Please help us educate them!) It might help to write down notes that you want to tell your doctor (and don't stop until he has heard all of your comments). Changing doctors or changing doseage is a possibility. I do know that AB/AD with a tremor is very, very difficult to treat. One time my doctor stood there with the needle in his hand and (honestly) said, "I don't know where to inject you because you have all three." Surprisingly, his injections had the most success. I can relate to your statement about the psychological energy zapper. So true!! I wish you well, I suggest, too that you read some of the stories on the SD website. We have to be courageous, In my eyes there's not other choice. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: DBly ® 10/08/2012, 11:51:43 |
I started Botox shots about 4 years ago. The 1st couple were reasonably successful. It was uplifting to be able to talk with a decent voice. The doctor tried various injection methods and each time he had a more difficult time hitting the spot. The success of the shots also diminished. The last time he did the shots I passed out on his 4th attempt. I decided it was time to try someone different. The next ENT which I presently see uses an EMG and the shots are quick and pain free. The second time he increased the dosage and I was extemely breathy for 8 weeks. It was to the point that you could barely hear me and I wondered if I was ever going to get my voice back. The next shot he reduced the dosage and I had the same experience. I would end up with a decent voice for 2 to 3 weeks at the most. He than determined that my right VC was more sensitive to the Botox and causing the breathiness. The last 2 times he has only injected the left side but I no longer experience much of an upside to my voice. At the same time I have developed more of a tremor. I was going to wait longer between appointements this time but my voice is now as bad as it has ever been. I feel your pain with all the symptoms. As the day goes on at work the anxiety seems to snowball. Every phone call and every conversation are an adventure as you are not sure which voice will surface. It is easy to become introverted. I also feel mentally zapped just trying to make it through the day. I wish I had advice for you but I am looking for the same thing. It is comforting to know that you are not the only one. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Re: Botox no longer working -- DBly | Top of thread | Archive | |
|
Posted by: Brenda1 ® 10/10/2012, 15:30:20 |
I stopped Botox injections about 2 years ago they were not working anymore for me. I know how you feel about the end of the day when your voice gets worse. Mine does it also when I get upset,nervous, or very tired. At my job we were bought out and my job will end on 11-30-12. I have been on 2 interviews with no luck. I believe it is because of my voice. Any advice for this. On the phone people think I am sick with a cold but I tell them I have a voice disorder. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Botox no longer working | | ||
| Re: Botox no longer working -- kassareevw | Top of thread | Archive | |
|
Posted by: kybutterfly64 ® 10/24/2012, 20:05:36 |
I have been getting botox injections successfully for almost 9 years now. My last two injections did nothing for me. My doctor agreed with me that stress was the reason. I had been under severe stress to the point where my entire body felt tensed up plus my breathing had been terrible as a result of my anxiety. Anyway I saw the voice therapist for the first time in 8 years. We discussed what I could do to get my stress levels down, also started doing vocal cord massaging and a few other simple things. I still cant believe this happened...the botox NOT working. I go again in November and I pray that its effective. I have been doing yoga religiously for 3 months and I feel that its been a huge help. Im a little surprised but at this time my voice isnt as bad as I thought it would be. Relaxation is vital for my voice. I have MTD along with SD. I still get nervous when I go for my injections so you are not alone there. I dont talk much while there or in a crowd of people. There is something about having my voice evaluated that makes it worse. Good luck to you and hope you will update us. |
| | | | Where am I? Original message Top of thread Current page |
