Voice Loss: I've have had no voice for almost 3 Years

Posted by maxine321369 @maxine321369, Nov 27, 2019

Hello. So I have a bit of a dilemma, a big one actually. This is a very long story but I’m just gonna summarize it or otherwise it would take forever. Basically I began losing my voice 3 years ago and completely lost it 2 years ago, I went to a bunch of ENTs, speech therapists, doctors, did a bunch of scans(I thought maybe it was an issue with my lungs or brain because my mom has lung cancer and a brain tumor). Anyways they all came back negative. So I decided to take matters into my own hands and did laryngeal massages every single day (it varied from 15-45 minutes to an hour) and after 6 months I got my voice back but it wasn’t as I expected. The issues I have with it is that I can’t talk loudly or scream anymore which isn’t as big an issue as the others I’ll be speaking about, the other issues are that my voice tires VERY quickly. I usually get an hour of talking and then it just goes back to a whisper. Plus I usually have to strain my neck and shoulders and body in general just to speak, I can’t speak naturally, I almost have to force out my voice which I bet is a bad thing but if I don’t do it then literally no voice will come out. Some days I can speak naturally and Quite loudly but I can only speak with it a few minutes until I go back to no voice again. Also I forgot to add, if I am tired or sleepy in any way shape or form, my voice also goes back to a whisper. I’m just so frustrated, I’ve tried everything and nothing’s been working out. Can someone please help me, I really need it. Thank you

@gpepping

BACK IN JUNE OF 2015 I HAD OPEN HEART SURGERY TO REPLACE MY AEORTA VALVE. PROCEDURE WENT FINE EXCEPT FOR THE FACT WHEN I GOT BACK TO MY ROOM , I COULD NOT TALK. I REMEMBER TRYING TO TELL MY WIFE ( I CAN’T TALK ). FOR THE LAST FOUR AND A HALF YEARS MY VOICE IS SO VERY WEAK THAT EVEN MY DEAR WIFE CANNOT UNDERSTAND WHAT I AM TRYING TO SAY . MY VOICE SEEMS TO BE A LITTLE STRONGER IN THE MORNING. I WENT TO SEE A VOICE DOCTOR . SHE SENT A SCOPE DOWN MY THROAT , SHE TOLD ME I HAD WEAK VOCAL CORDS. AND THEN SENT ME TO A SPEECH THERAPIST AFTER 7 WEEKS OF THERAPY , BOTH MYSELF AND THE THERAPIST AGREED WE WEREN’T MAKING ANY PROGRESS SO I QUICK GOING. LAST FALL MY VOICE DR. TRYED TO GET ME AN APPOINTMENT AT MAYO CLINIC IN MINN. MAYO CALLED BACK IN JAN AND AGAIN FEB. BUT NO APPOINTMENT YET PLEASE, IF ANYONE CAN
GIVE US ANY IDEAS ON GETTING AN APPOINTMENT WITH MAYO PLEASE DO G. PEPPING

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Hello @gpepping

It has been a while since you last posted about the problems with your speech/voice. I hope that you are doing better, now. Were you able to see a doctor at Mayo Clinic?

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@speechless623

Hi, I have a problem similar to what you have described that is both ongoing and worsening. I have a link to National Institute on Deafness and Other Communications Disorders (NIDCD) – https://www.nidcd.nih.gov/health/voice-speech-and-language – please copy and paste in your browser. – there is a lot of good information that may be helpful. I have all the symptoms for Vocal Fold Paralysis. It is very difficult for me to talk – I whisper sometimes other times I have to yell in order to get the words out. I am going to Fixel Institute – University of Florida – Shands Hospital for examination, therapy and hopefully treatment. I hope the URL above is helpful to you. This disability has made me acutely aware of the plight of Speech impaired people – there is no effective Communication accommodation(s) for Speech Impaired people.

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Hello @speechless623,

I appreciate you sharing about your speech problems. You make an excellent point about the lack of accommodation for people who are speech impaired.

You do not mention your history with speech problems. Have you been offered an explanation as to the cause? If you are comfortable sharing more, would you explain how long ago this communication problem began and what you have done to treat it?

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My speech began to noticeably decline in 2018-I was working as a Senor Case Technician but was forced to resign because people could not understand me over the phone, and it has since considerably worsened I have problems swallowing. I've had nerve conduct study and doctors concluded it is not a nerve issue. My jaw quivers and at times my mouth locks shut and I can't speak at all. It has caused me to have a drooling problem, my former Speech Therapist told me to make certain I am proactive in constantly swallowing to prevent drool. I have seen many doctors trying to resolve this to no avail. I have several things going on – I have Spinal-Cerebellar Ataxia and my current doctors are still trying to determine the cause so I can receive treatment (if there is treatment – my former Doctors told me my cause was Genetic and there is no cure). My current doctors did bloodwork – GAD65 (came back positive) – and want to do further diagnostic tests – CT of my chest, abdomen and pelvis – looking for tumors, also want to do Lumbar Puncture and possibly IVEG blood replacement based on the diagnostic tests results. HOWEVER, my current doctors have indicated to me that my Speech Impairment is not due to Spinal-Cerebellar Ataxia. I have family that needs me, and am working with my current doctors to find cause and hopefully the cure. I did suffer a trauma to my neck prior to loss of Speech.

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@speechless623

My speech began to noticeably decline in 2018-I was working as a Senor Case Technician but was forced to resign because people could not understand me over the phone, and it has since considerably worsened I have problems swallowing. I've had nerve conduct study and doctors concluded it is not a nerve issue. My jaw quivers and at times my mouth locks shut and I can't speak at all. It has caused me to have a drooling problem, my former Speech Therapist told me to make certain I am proactive in constantly swallowing to prevent drool. I have seen many doctors trying to resolve this to no avail. I have several things going on – I have Spinal-Cerebellar Ataxia and my current doctors are still trying to determine the cause so I can receive treatment (if there is treatment – my former Doctors told me my cause was Genetic and there is no cure). My current doctors did bloodwork – GAD65 (came back positive) – and want to do further diagnostic tests – CT of my chest, abdomen and pelvis – looking for tumors, also want to do Lumbar Puncture and possibly IVEG blood replacement based on the diagnostic tests results. HOWEVER, my current doctors have indicated to me that my Speech Impairment is not due to Spinal-Cerebellar Ataxia. I have family that needs me, and am working with my current doctors to find cause and hopefully the cure. I did suffer a trauma to my neck prior to loss of Speech.

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@speechless623 I am sorry to hear of your multiple health problems. It does make it difficult to sort it all out, doesn't it?

On a very practical note, I can recommend chewing gum for the drooling problem. That is most helpful to me, it keeps you swallowing on a regular basis. Do you ever choke on food or liquids? Have your vocal cords been examined by an Otolaryngologist?

I'm not sure what type of medical setting you are using now but based on the multiple health issues you have I would recommend being seen at a multidisciplinary health care system such as a university medical school or a facility like Mayo Clinic. At health centers like these, you have the benefit of many doctors, in different specialties, who can bring research and patient care together in one place.

Do you have a medical facility like that near you?

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Hello @maxine321369,

It has been a while since you originally posted about your voice problems. I hope you are doing better. Have you had any resolution or diagnosis?

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