HI I have been having a furstrating orderal. I have been
running arround to many Diffrent doctors for my voice Porblems.
I use to get Botox in to my vocal cords, However after several
injections, I have not seen any improvement in my vocal cords
at all. My current voice Doctor says he can not fiugre out
why my voice box in not progressing the right way as it should.
I went to see my Nurolgist a few days ago and He wanted me
to see a top Doctor over a Mass Eye and Ear. I am hoping
that he will be the one to help. I also have major accid
reflux, which I don't think the Doctors are taking in to considration, I am desperate to get my voice back becasue I can't really caxrey a
good comversation on the phone. Any Ideas or sugestions would be
helpfull.
Thank you
Matthew
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
Matthew, have you been diagnosed with Spasmodic Dysphonia (you're getting Botox injections, yet your note sounded like they haven't made a definitive diagnosis)? Is this a fairly new ordeal for you? There are different forms of SD, with the adductor form usually considered easier to help with Botox, but sometimes it can take awhile for even the experts to determine exactly how your vocal cords are being affected. It sounds like you are frustrated with not getting answers to your questions; hopefully you are seeing a doctor who treats other SD patients. From what I've read, this is a good bulletin board to ask who the knowledgable docs and speech pathologists are in your area.Have you been diagnosed with GERD? What did your doctor say is causing it? Did you start having reflux about the same time your voice was affected, or was it after Botox injections? I've had SD for 28 years now, and don't recall seeing a connection with GERD. Are you suspicious that the GERD is causing your voice problems, or vice versa? You are already seeing a neurologist, that's good. Have you seen a speech pathologist? When I started having voice problems I used a lot of extra muscles just to speak (facial muscles, and excessive use of my diaphragm). A good speech pathologist was able to train me to get rid of all the extra muscular movements -- are you keeping your diaphragm tight? As far as managing the reflux, I assume you've been told ways to minimize it, like not lie down for a few hours after you eat, sleep slightly elevated, if you're a side sleeper sleep on your left side?
The best of luck in your treatment.
Susan
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
Matthew,
GERD itself is a very common cause of voice disorders, although the symptoms will be different than SD. A number of SD folks I have talked to feel that GERD is an agrevating factor for their SD, i.e. the GERD doesn't cause the SD but their voice improves when the acid reflux is under control. The acid just iritates the vocal cords in the same way that smoking, dust, or any number of other things does and this will make anyone's voice worse, but if you have SD then anything that aggrevates the vocal cords can make your voice much worse.
If you have a major case of acid reflux then I would strongly suggest you get that totally under control first. That will make it easier for your underlying voice problem to be diagnosed. The things Susan suggested will help, but for a severe case of GERD there is no substitute for taking a PPI (proton pump inhibitor) such as Prilosec or Nexium. The over-the-counter H2 blockers like Zantac or Tagamet just don't do the trick.
In my experience medical specialists tend to focus on what they know about. My ENT is a great doctor and I wouldn't go anywhere else for BOTOX injections, but when I tell him that keeping my GERD under control is also important to the quality of my voice, he just ignors me. So I just get my BOTOX from the ENT and I go to a GI specialist to get the GERD treated.
Bill Vanderlinde
AB/SD
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
Matthew - Hopefully, the "top doctor" at Mass Eye and Ear will be one who can give you an accurate diagnosis. You can check out the Physician list at the NSDA website and see if at least s/he is listed. After reading posts on this BB for a year, I've come to the personal conclusion that many SDers have some level of GERD, and that often they may not even be aware of it. The main symptom that everyone thinks of with reflux is heartburn; but actually you can have GERD without having heartburn. Getting it under control is important. Like Bill said, it wouldn't cure the SD, but it might make the symptoms better. I wish you well, Robin (AB/So. Calif.)
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
Hi Matthew,I have both AB/SD and GERD. One thing I've noticed is that certain foods and beverages affect my voice and my reflux. For instance, coffee can make my voice more choppy and my vocal tremor worse...also gives me more reflux. So does chocolate. Caffeine is known to aggravate GERD, but strong decaf also affects my voice. A real bummer, because I'm a coffee/chocoholic...!
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
I have to say that I am one of those people who always associated acid reflux with heartburn, didn't realize it could be present with or without heartburn. I have symptoms as described on some of the posts but very rarely have heartburn. I'll have to get this checked out.
What most interested me, though, was the correlation between caffeine intake ( particulary coffee and chocolate, two of my regulars) making the voice more choppy and with more tremors. This explains the variations in my SD throughout the day. Thanks! I love these boards not only for the medical/ scientific info ( and I find ALL of the info on ALL of the surgeries etc. of benefit) but for the real life, living with SD stories. It's great to compare experiences with others, I spent 23 years thinking I was the only one in the world with this voice and doctors telling me I could control it if I tried hard enough! UGH!
Why couldn't they just admit they didn't know what it was! Almost did make me need those psychiatrists they eventually sent me to ( yes folks, they turned me away, too) but never without a prescription for valium just for the heck of it. Go figure!
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
I don't have SD, but I did have VCD (Vocal Cord Dysfunction), and while researching VCD, I learned a lot about LPR. LPR is a form of Gastric Reflux called "Laryngeal-Pharyngeal Reflux", which often has no heartburn symptoms, and sometimes has no noticeable symptoms at all.Some LPR folks will notice that sometimes "out of the blue" with NO NAUSEA, some vomit reluxes up all the way to the throat or mouth. The relux material (vomit) can be either acidic, or alkaline. It is irritating to the vocal cords, either way, and can aggravate or cause Vocal Cord Dysfunction (Paradoxical Vocal Fold Motion), resulting in choking episodes. Sometimes a LPR person may notice a burp that tastes like stomach material. This too can be a subtle symptom of LPR (or GER). I posted a message about some holistic alternatives to ACID BLOCKERS, for GER/LPR (Gastro-Esophageal Reflux)/(Laryngeal-Pharyngeal Reflux), over at a neurological website, http://www.braintalk.org which is hosted by Massachussets General Hospital. My post about natural treatments for GER/LPR is on their "Peripheral Neuropathy" forum. Using ACID BLOCKER meds for GERD often results in malabsorption of Vitamin B 12, because a substance called "Intrinsic Factor", can only be produced in an acidic environment in the stomach. Without the production of "Intrinsic Factor", Vitamin B 12 won't get absorbed in the duodenum (first part of the small intestine, just past the stomach). After months or years of Vitamin B 12 malabsorption, nerve damage results: first "peripheral neuropathy" and than damage to nerves in the "central nervous system", i.e. brain and spinal cord. Since SD is a dystonia, with brain involvement, it seems prudent to avoid any more potential damage to any nerves! If anyone tries out the holistic methods (non acid blockers) for GER/LPR, it still would we wise to get checked periodically by a good doc, to make sure that no more esophageal or vocal cord damage is occurring, due to "silent" GER/LPR! Sincerely, Carol http://cantbreathesuspectvcd.com
vcdcjs@hotmail.com P.S. Long term acid blocker use can also result in impairment of protein digestion, and malabsorption of calcium, and other "B" vitamins that are part of Vitamin B complex, etc. Supplementation is often necessary, but avoiding acid blockers is desirable, when possible.
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
I had GERD long before it got the fancy name and SD. Got it under control with antibiotics when I was diagnosed with hyliobactor (sp?) and treated with antibiotics and Peptobismol. Thought I had ulcers and my grandfather died from ulcers. But the condition reallly flared again, when I developed SD, it made symptoms of SD worse. I took Prilosec and also lots of vitamins, etc. Best decision I made was to stop anything that made it worse, coffee, chocolate, soda and fatty food were killers. Most of all I quit eating large meals as I was getting spontaneous regurgitation. The other thing--I just started pushing the area at the bottom of the esphogaus hard and it calmed down my stomach. Go figure.
Botox works wonders for me but I think you need to treat every symptom that you have like others have said. I treat the neck spasm I have with good massage therapy as I discovered that I had three ruptured discs in my neck also at time SD symptoms started--no clue how that happened just had an MRI done of my neck at time SD symptoms arose. Hang in there. PS the phone is the worst, I use a headset as much as possible on all my phones.
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD
Thank you everyone who has responded to my Message.
I have found out that the Doctor I am seeing on Friday
will take everything in to conisderation, I will Most likely
follow his advice. I will keep you Highly informed of my
Progress. It is a great website to share, and collect Thought
from other People. I think for my accid reflux I am going
to try my best to Drop choclate from my diet, even though i
am a Chocoholic also. Thanks again for all the Advice and
I wlll update you with my Doctors visit on Friday Febuary 8th.
Thanks
Matthew Hoyne
Re: Reflux- Gerd - Horse voice Possible Std/ or MTD Update Doctors
HI Everyone I just wanted to let you know that I saw a very nice Doctor
for my voice Problem. He said he would like me to try Botox
a Couple more times, I will be getting Botox on the 26th
of Febuary. He has told me if the Botox dose not work out
he will look in to Possible Surgery Options and see what the
best option is,/ So I will keep you all updated
Thanks
Matthew
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