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Posted by: Pat Odell ® 12/09/2002, 16:01:00 Author Profile Mail author |
I was wondering if anyone has struggled with the situation of whether or not to seek treatment for SD. I was diagnosed one month ago, and at that time was strongly encouraged to try Botox injections. But now that I know what my diagnosis is and with the information that this does not work for everyone, I am torn between having to travel outside of Alaska for each injection. My husband feels that I should go for it, but I am wanting to wait a little longer to see if my voice worsens or stays the way it is before I go ahead with the injections. Right now, my coworkers tell me they can understand me just fine, and most of them just accept my voice the way it is. My family are the ones who want me to have the injections because they know how much effort and exertion it takes for me to talk with them, especially on the telephone long distance. I think that I am also hesitant because I could be one of those people who the Botox does not work for. Any comments? |
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Posted by: David Barton (NZ) ® 12/09/2002, 16:42:18 Author Profile Mail author |
Pat - good question, and ultimately only you can decide what works for you. Two factors I would suggest weighing up are the cost (covered by insurance?, cost of flights from Alaska etc) and also the type of SD you have. If you have an uncomplicated case of adductor SD then Botox is likely to work, and work well. It is safe and generally effective. There is usually no benefit in waiting for your voice to possibly get worse. In some cases the Botox can act as a circuit-breaker that disrupts the effects of the SD and then isn't needed as frequently, or at all, further down the track. I would personally lean towards trying it, at least once or twice. Good luck in making a wise decision you are happy with. David Barton (AD/SD, Auckland, NZ) |
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Posted by: sarah bayle ® 12/09/2002, 21:53:21 Author Profile Mail author |
Pat, great question to throw out to us SDers. It would be helpful to know if you have AD or AB as the treatment is more frequently affective for AD. Also, if your insurance covers it and you are up for a trip...Why not? It is nice to have the option to do it when it is convenient. But it might take a few visits to realize the results. I decided to try it a few years back as my insurance covered it, I wasn't working, and I was thrilled at the opportunity to relieve the spasms. (didn't work for me...AB/mixed/tremor, too!) But, I may try it again someday when it is in the cards. Now, my insurance would not cover it. Best wishes and lemme know if you come to Seattle! Sarah |
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Posted by: Pat Odell ® 12/09/2002, 22:59:56 Author Profile Mail author |
Sarah: I am AD/SD and my insurance does cover it, but it IS going to cost time away from work AND the cost of flying to Seattle or Portland each time. As for time away from work, I have been trying for three weeks to get information from OHSU regarding when I can have my first injection, how much it is going to cost and how long I will have to be down south and away from my job. It has been frustrating for me not to have any answers to the questions I have. I am just trying very hard to be patient with the whole process. |
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Posted by: sarah bayle ® 12/10/2002, 09:11:20 Author Profile Mail author |
Pat The way the injections proceeded for me is the following. I showed up the for my first injection and waited for 1-2 hours in the waiting room. I met with the physician and he said he wanted a baseline EMG before injecting me. I went home and received no treatment. At your appointment, they also anethetize your nasal passage and place a video camera into your throat (have you already had this done? The injecting doc may want to do it again)(make sure you have all your ducks in place before scheduling injections; ie EMG) I would ask the office where you go: "What do I need to have in my record to receive the injection?" Make sure they realize in the Portland or Seattle office that you are traveling from Alaska and want to receive your injection at the appointment and not have to come back too soon! I know the doctors are difficult to get a hold of with questions. Try to access a secretary or speech pathologist who will return your calls. Anyway, the next appointment came and it was indeed, an injection. The procedure can take between 5 minuts and 1 hour. The injection appointments are scheduled for 10 minute time slots, really! Then you go home and wait for 12 hours to three days for the Botox to be absorbed. At this point, I guess that you could fly home as you would not be able to receive another injection for several weeks;at the earliest. The absorption rate is different for each person, I always felt the affects within 12 hours. I would recommend you spend 12-20 hours on land in Portland or Seattle before you jump on an airplane. This gives your body time to do what it will do in response to the treatment without having to force Alaska Airlines to land early cuz your not feeling well! So, if you have what you need to receive injection: then your appointment should be finished in a quick afternoon. (maybe even 5 minuts minus the waiting room time!) And you head home. Follow up injections come 1-4 months later, depending on several issues, none the least is where you live and the cost of travel. At University of WA Medical Center in Seattle, they do injections on Tuesdays only. So, if you were to go to UWMC- You could land in Seattle on Tuesday AM and get a bus or cab to clinic. Spend the day in the office waiting for your turn. Then, spend the night or brave it and jump back on a flight home Tuesday night. Wednesday would be a wash so you might as well plan for two sick days! Good Luck Sarah |
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Posted by: Pat Odell ® 12/10/2002, 09:36:03 Author Profile Mail author |
Sarah, Thanks for your very detailed respose! You gave me more information than I have received from anyone. I want to return to Portland because that is where I received my diagnosis, and yes, I had the scoping done the day I got the diagnosis. I called the clinic again yesterday and hope to get a response this week. I also have a sister that lives in Oregon City, about an hour South of Portland, so I would have a place to stay. Thanks again for the information and I will keep you informed of my situation. |
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Posted by: cinthia ritchie ® 12/14/2002, 15:42:54 Author Profile Mail author |
Pat: There's a doctor here in Anchorage who gives Botox shots for AD/SD. I had four of them; they helped but not that much, since it turns out I actually have AB. Anyway, his name is Dwight Ellerbe. Would be happy to get his phone number if you're interested. Also, you can get DVR to pay for the plane fare and whatever cost your insurance doesn't cover. Now that I have AB, I'm also faced with having to go Outside for a shot. Presently, I've opted not to. I just don't want to face the hassles of traveling. Plus the AB shot I had from Dr. Blumin, while granting me smooth speech, constricted my breathing and I wasn't able to run or hike or swim. Now my speech varies from OK to bad, but every afternoon I swim. And somehow, that makes it worth it. Plus, I write for a living, and while my voice sometimes sucks during interviews, it often works in my favor: people don't see me as this reporter trying to wrestle quotes out of them, but as someone human and complex and imperfect. But if you have the opportunity, I really think you should try the shots a few times. Why struggle if you don't have to, eh? Good luck! Email me next time you're gonna be in the "big city" and I'll take you out to dinner. Take care, Cinthia |
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Posted by: Pat Odell ® 12/14/2002, 23:01:03 Author Profile Mail author |
Cynthia: Thanks for the information. I have contacted the office where Dr. Ellerbe practices and asked for information such as cost and availability of appointments, and was told I would have to see him for an appointment before I could obtain any information, even after mentioning that I have a diagnosis of AD/SD. Question: how would DVR pay for something like this? I have used their services for obtaining help with installing an elevator in our home (I cannot walk stairs due to the MS), they helped me pay for correspondence lessons to obtain a certificate in medical transcription and also for help in obtaining employment at my current job. I have now been three 2 1/2 years! I have been very pleased with their help, but how would they justify helping me in this situation? I can guess thst it would fall under the heading of post-employment help? I am leaning toward going back down to Portland because I do have a sister who lives close by that I could stay with. Take care, and I look forward to hearing from you again. Pat/Alaska |
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Posted by: Pat Odell ® 12/11/2002, 21:55:11 Author Profile Mail author |
I finally heard from the clinic yesterday and I have a tentative appointment for January 17. My sister lives close to Portland, so that is where I will go. I will keep you posted. Have a great holiday season to everyone who reads this! |
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Posted by: Judy Stephens ® 12/24/2002, 17:50:04 Author Profile Mail author |
Dear Pat, I can relate. I had a probable diagnosis of SD. I was at Mayo Clinic yesterday and now have a confirmed diagnosis of SD and botox was recommended. I was convinced that my cause was psychogenic in nature. I was told it is not. I don't know about botox. It is helpful to read everyone's comments. I am ofcourse hoping that this will all go away and my voice will be back to normal. Decisions, decision. Judy Stephens |
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