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| Botox Dose - No Voice for 90 days=bad physician |  | ||
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Posted by: dotsdad ® 07/27/2012, 11:43:52 |
I have prior posts regarding a terrible issue that I had concerning my first treatments with Botox. The attending physician at UAMS in Little Rock injected me with 2.5 units of botox on one side. After the injection I lost my voice completely for ninety days. This continued for each injection that I was given during the course of treatment. Several times I lost my voice for longer period of times. My voice would revert to breathy after ninety days and within a week my spasms would full return even before my voice volume and quality returned. I begged the physician to reduce the amount of Botox that was injected, however she was reluctant. She finally lowered it to 1.75 units on one side, but I still had the same results of voice loss. When I asked to have my dosage lowered I was told that I could either take the shot or leave the program - which I did. In Arkansas there are only two physicians that offer Botox injections. The one in Little Rock I had the issues with and the other one is located in North West Arkansas which is a four hour drive from where I live. I went almost a year without an injection and started working with a speech therapist with mixed results. I did make some progress but the signs all pointed to the fact that the spasms were unavoidable over fifty percent of the time. My therapist urged me to contact another physician and see if there might be an alternative method of treatment. I am happy to say that I was pleasantly surprised by the new physician and that she responded well to my issues. She stated that I was sensitive to Botox and that she had treated many patients with this issue. She decided to give me 0.5 units of botox and stated that we could lower the dosage further if I was still having issues. After my injection I was in a whispery state for about two and a half weeks and my voice has slowly progressed from that point. We are about four weeks out now and my voice is still at a very low state - I would estimate that I am still below 50% of my usual voice. Being that we are a third of the way through the 90 day treatment period it is still too soon to tell the full outcome, but I almost feel as if my dosage needs to be backed off further. After requesting my medical records from UAMS I found that the comments in my file concerning my results after the injection were wrong. Each record stated (in the same exact language) that I had regained my voice within a week after my injection. It was as if they had copied the same text over and over again. I had to send a cover letter with my records refuting the results to my new physician. I felt that during my treatment at UAMS that I was a lab rat and that they were more interested in doing what they wanted and did not concern themselves with the actual results. I mentioned to my new physician it was almost as if I was in a clinical trial. What I have learned from this is that if your physician is reluctant to work with you on your treatment (whether its for SD or some other ailment) you are better off leaving the care of that physician and finding one that is open to your needs. It is also a good idea to request a copy of your medical records periodically to review what is being put in your file. I was lucky that I had a physician that was willing to listen to me instead of my medical records. If the new physician would have listened to the "educated medical professionals opinion" instead of me she may have continued to give me too much Botox which would have further aggravated the situation. |
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Posted by: BabaAnn ® 07/28/2012, 15:46:52 |
I am distressed that you had to go through all of that! It is stressful enough having SD without experiencing an unknowledgeable physician who didn't listen and was too lazy to update your records correctly! Your advice to request copies of your records is excellent. I have not done that as I have just been diagonosed and had my 1st Botox in April 2012, but I will. I was sent to an neurologist for voice tremor by my ENT. He couldn't offer me any help, but when I told him my mother had Myathenia Gravis, he ordered blood test to see if I had it as it affects the voice, nerves and muscle. I am not going to have these expensive tests done as I am sure I do not have it. I was sorry he had no help for voice tremor although he said there were drugs out there for tremor but they all had a lot of side effects and it was not worth it to experience only a 10-15% improvement.
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Posted by: MikenQuincy ® 07/30/2012, 09:17:11 |
Your physician at UAMS needs some education concerning botox treatment for SD. Each patient can respond differently to botox and the sensitivity level can vary greatly. In this treatment regime, the doctor has got to listen to the patient and be flexible in dosage levels if they are genuinely concerned with improving the patient's voice and if they are unwilling to work with the patient in this manner they need to remove themselves from performing these injections. |
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Posted by: markruther ® 07/30/2012, 18:08:06 |
I am seeing Dr. T at UAMS and I am guessing that is who you saw? I moved from Texas where my original doc did his fellowship with Dr. Berke in UCLA and is at the leading edge of SD treatment and diagnosis, along with being qualified for SLAD-R surgery. His starting dosage for me was .5 units bilaterally. I had a minor breathy period of a couple days followed by 2 months of good voice. He hit the nail on the head on the first try. I am not sure what factors he considered with this dosage but it worked for me. UAMS continued with the same dosage and my breathy period increased, but again, the results were successful. It is odd that they would not try another dosage. Finding the right dosage is the crux of fixing the problem. Good luck. Mark |
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Posted by: dotsdad ® 07/31/2012, 11:18:03 |
I left out the name of the doctor on purpose as my main intent was to identify the true issues as I saw it. That there was inaccuracy in my medical records and an unwillingness to listen to my needs. I am not sure if the hospital or the doctor is to blame with these issues. University of Arkansas Medical Sciences is a university that is bent on making strides in the treatment and teaching of students as well as having an open forum for new treatments and advancements in medical technologies. I believe that this environment may be partially to blame for the issues that I saw while under the program. As you know, before treatment you are put in a room with one of several different young (for lack of a better term) technicians or nurses. It is their job to document for the doctor your progress after your last injection, to take your vitals and to ready you for the next injection. Mind you, if these persons put the information into your file incorrectly it could lead the doctor into a sense that you are experiencing a different outcome than what you really are. I put up a lot of negative connotation when being evaluated about my response to the previous injection while speaking to these people, yet they have in my file a completely different outcome. They specifically state that I regained my voice in a week, yet after ninety days during the current appointment I was still at a whisper with no voice quality at all. I have heard that the UAMS botox clinic is severely overrun with patients seeking treatment and that in itself may be partially to blame. It took me over a year to be accepted into the program due to the amount of patients they treat. During my treatment I was rushed from my visit with the technician to the chair, the doctor did not want to talk with me about my issues and only wanted to give me the injection. I think the program may be so overbooked that the staff and single doctor do not have the capability to effectively treat this many patients. I think there are many mitigating circumstances that are to play and the above are just a few. The sad thing about it is that when I went to the clinic in NW Arkansas it only took about ten minutes for me to converse my needs to my new physician, who readily saw the problems that I dealt with at the UAMS botox clinic, and was ready to approach the problem from a different angle. I told every tech, nurse and doctor that I saw at UAMS that I felt I was receiving too much of a dose of Botox, yet no one would listen. The mechanics of how botox works is very hard for the common person to understand and I usually have to explain the process several times to people as they do not grasp how the process works. But to know that I need less, and to have a doctor not grasp that, one who specializes in treatment of this condition is heartbreaking in the least. I do believe if a competent doctor had worked out my dosage needs and I went to the UAMS clinic that they could continue my therapy, but the way they evaluate the patient, the rush to get you in and out of the clinic and or other factors seem to deplete their ability to correctly define and administer an appropriate solution. I hope that my post will serve as guidance to help persons struggling with their treatment program. I think it is very important to get those medical records and see if you see any issues with what is being reported about your condition. If you see an issue call out the doctor on it - unless like me you were told to leave the program and are no longer under their care. If you do not see any progress with that physicians program ask about alternative treatments. If that physician is unable or unwilling to try a change in your treatment do not feel bad about seeking a second opinion. I still have some ground to cover in my treatment and feel that I am on the right track now, even though I have a long ways to go. I sought help with a speech therapist who did make some advancements with me, and it was through her that I sought out a second doctor for my botox treatments. I was never told about speech therapy at the UAMS clinic, so it was only through my own doggedness that I was able to get where I am at now. I wish you continued luck during your treatment at UAMS, but that program did not work for me. |
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Posted by: Dwight ® 08/15/2012, 11:01:02 |
I've had spasmodic dysphonia for 26 years--hard to believe--since I was 14. I have a few thoughts. First, I'm sorry about your frustrating experience. I think it is fairly common to have trouble finding the right dose, although I think the problem of too little botox is just as common. Also, spasmodic dysphonia is a rare disorder, and it can be difficult to find a doctor who has the necessary experience and expertise in giving botox shots.. I personally drive six hours to Chicago every three months for my shots. There are people closer I could see, but when its my voice, I want only the best. Finally, you mentioned not having a very weak voice for a long time and then having the spasms return quickly after the week voice. While I think you obviously got too high a dose, I also think it's important to realize the botox shots will never bring you a completely normal voice. Specifically, when the botox is working enough to block the spasms, your voice will be much weaker than normal. you will not be able to yell or to sing, for instance. What you can expect is to be able to speak just loud enough to heard in most conversational settings and on the phone. But your voice may not be strong enough for ordering at the drive thru or even shouting from downstairs to upstairs in your house. When my doctor asks how long my voice was breathy, he means how long was there no voice whatsoever, just a whisper. If you then try to lower the dose, hoping to get a much stronger voice, you may find it's not enough to block the spasms. So often it's a bit of a catch-22. It's depressing at first to realize you will never get your "normal" voice back. But most people find their voices after botox, despite being much weaker than normal, are still preferable to their spasmodic voices, partly because people react more sympathetically to a weak voice than to spasmodic one. Best of luck,
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Posted by: dotsdad ® 09/11/2012, 22:21:30 |
I am currently eighty days into my last injection with the new provider. I am happy to report that the lower dosage was the correct approach. This time around I had a whispery voice for about fifteen days, followed by about fifteen days of improvement until I regained about 80% of my pre SD voice volume and function. I have been about fifty days at this level without any spasms. I regained enough of my volume that I could be heard at a crowded wedding, yelling above the noise of the crowd where I acted as the wedding photographer. My voice carried a good fifty yards and was loud enough to be heard over the din of the crowd. This was a feat that I could not have imagined during my treatment with the doctor at UAMS. I agree that there is a lot of trial and error with the treatment. I know that many factors can change the effectiveness - shot placement, botox strength, and many other factors determine the outcome. Each treatment can be done in a similar manner, yet the outcome change. My niece was the one getting married, and my family was quite shocked when they heard me yelling. I will say this - they were quite happy to see that my last treatment was effective. I am scheduled for another treatment at the 90 day mark. If my past experience with the treatments hold true that should be just about the time that my spasms start to return. If I can effectively have a similar outcome to each injection I would be a very happy man. Fifteen days at a whisper for 90 days equates out to me effectively losing my voice for 2 months each year. That I can handle - however with my previous treatment I was looking at losing my voice 90 days at a time, which would effectively left me mute 365 days of the year, since I was receiving the treatment every 90 days! Which in my eyes is not acceptable. And all due to the fact that the treating physician would not listen to what I had to say - which is unacceptable. I hope everyone that has a similar situation as I had with my first treating physician will seek a second opinion. I am "talking" proof that you do not have to be a mute and have SD. |
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Posted by: karlynn ® 09/20/2012, 17:27:35 |
What is the name of the Dr in NW Ark? It's great to hear you are having better luck with this Dr. |
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Posted by: dotsdad ® 09/25/2012, 22:01:37 |
The doctors name in NW Arkansas is Dr Felicia L Johnson MD and she is with ear nose and throat center of the ozarks. I highly recommend her and have had great results. |
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Posted by: willmss ® 08/25/2012, 11:42:26 |
I am also very sensitive to botox; having a Dr. who listens and works with you is so important. Sounds like you found the right one! |
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Posted by: Tris ® 09/29/2012, 21:28:20 |
Thank you for posting your experience re: an incompetent doctor. I too had a very bad experience with UAMS in 1995 (when I was first diagnosed with SD). I too finally had to leave and go to Dallas to find someone that would listen(that I needed a lesser amount dose). For almost 19 yrs. i had botox shots..gradually they became less effective and the frequency was every 5 to 6 wks--hardly worth the problem etc. I have seen several different doctors over that period of time...DEFINITELY AGREE as you stated..if you do not have a doctor that will work with you LEAVE AND FIND ONE THAT WILL.
. In Oct. 2011 I had the surgery with Dr. G. Berke at UCLA. Thank Heaven for him! I now have an almost normal voice. I can now talk on the phone, go thru drive-thru's, be heard in a noisy room etc. ..and of course no more botox shots. |
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Posted by: dotsdad ® 09/30/2012, 22:01:40 |
Finding a physician that works with you, listens to your concerns and is willing to vary your treatment is very important. I am glad that you were able to find the help of another doctor. I have thought about the surgery with Dr. Berke, but even with the good reports that I have heard I am reluctant to try anything as radical as surgery at this stage of the game. I have resolved to try the botox treatments for a five year period to see how they affect me and if they offer me a quality of life that I can live with. I essentially lost almost two years messing with UAMS and a doctor that is unwilling to listen to her patients. Therefore I am restarting my five year clock effective three months ago, as that was when I finally found a doctor that will work with me and was able to show me that botox is a viable option. I wish you well for your continued well being and health! |
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