Question about Vocal Cord Procedure

[swalker]

My voice continues to degrade. I can still speak, but my voice is weak and thready. It is more like a loud whisper than a normal voice. It also requires significant effort to talk this way.

I was referred to an Ear Nose and Throat (ENT) doctor at the University of Colorado hospital who specialises in such voice issues.

He examined me (sticking an instrument a bit down my throat to observe my vocal cords) as I spoke and concluded that muscles associated with my vocal chords had atrophied enough to prevent the vocal cords from being able to close when I speak. This causes them to remain open when I try to speak and affects the effort required to speak and the quality and amplitude of the sound I make.

His recommendation is to do a procedure called an Injection Laryngoplasty. In this procedure, Carboxymethyl cellulose would be injected under local anesthesia into affected portions of my vocal chords to bulk them up.

The injections would last about 3 months and then need to be repeated every 3 months.

If the injections are successful, he said that he could perform surgery (requiring anesthesia) to do a more permanent modification to the vocal cords to help with this problem. That would put a stop to the injections every 3 months. This surgery could be done with my torso reclined about 45 degrees and would take about 90 minutes. I am still able to breathe without bipap at 45 degrees, but if I have to lie flat the bipap is essential. He said he would research it a bit, but that he believes he has access to a specially-designed bipap mask that would allow him to do the surgery while I was on bipap.

My questions are:

1. Does anyone have any experience with this? If so, did it make a difference?
2. Are than any negative outcomes I should be concerned about?
3. My last PFT showed an FVC of 18%. What are your opinions about going under anesthesia (local or general) in my condition?

I appreciate any information and/or opinions folks have to offer.

Steve

 

[lgelb]

I do not know the specifics of your particular MND, Steve -- I recall your latest dx is not ALS per se. So whereas I would ordinarily be skeptical that the typical durability would hold true in ALS, because you would likely lack the nerve signals needed to use the enhanced cords, I am not sure what to say in your case.

One of the potential complications of that procedure is increased difficulty in breathing if the vocal fold is over-injected. I am sure that the surgeon is an expert in this procedure, but would question if he (or anyone) had experience in your MND to know what that point would be. I would expect you to ask him to be conservative in amounts injected, which might call potential efficacy into question. I would also expect him to consult with your pulmonologist prior to considering this.

As you are aware, local anesthesia is preferred over general at your FVC regardless of what your MND is.

Best,
Laurie

 

[swalker]

Thank you Laurie. I really appreciate your input.

My official diagnosis is "MND-Other", expected to have the same prognosis as ALS. The lower motor neurons are affected, but there are only suspected signs of the upper motor neurons being affected. One doctor (very experienced pulmonologist with lots of experience with MND) calls it ALS in casual conversation. My primary care physician has it officially listed as ALS in my medical records. I tried for several years to get this changed to "MND-Other" without success.

Of course the doctor that matters in all this is the neurologist, who has given the "MND-Other" diagnosis and specifically does not call it ALS, except very occasionally in casual conversation.

I will continue to do a bit more research, but am likely to have the temporary procedure done. My research so far shows the doctor is very well respected, knows MND, and is very experienced at performing the procedure on compromised patients.

I share your skepticism regarding the potential for success. There is atrophy in the muscles controlling my vocal cords. That atrophy is likely caused by motor neuron degradation. While the procedure may show some initial success, I think it reasonable to speculate that as the atrophy continues there will come a point where my ability to control my vocal cords will not allow them to close, even with injection of the filler material.

I have banked my voice and have the ability to use a text to voice app on my phone. I have used it occasionally in situations where my voice does not work well enough. I recognize that eventually the likely outcome will be the need to rely more on assistive devices. But, I sure would like to prolong things a bit if I can.

Steve

 

[lisa g]

Steve like you my voice continues to degrade. Have you ever tried a voice amplifier? I have one and use it if I'm going to be in a group conversing. It allows me to speak with little effort and be heard.

 

[swalker]

Lisa, I have not used a voice amplifier, but plan to look into one. What are you using?

Steve

 

[Jimi]

Hi Steve,
I completely get wanting to speak for as long as possible! If you have success with the 3 month temporary solution and want to go for the permanent solution, I wouldn't let anesthesia be the reason not to do it.
I was on bipap 24/7 and went under for a trach and feeding tube. I didn't have any problems from the anesthesia. I don't know how they kept me oxygenated the whole time, but I felt as sharp as ever afterwards. Just my humble opinion. You are the best judge of your progression and if it would give you a worthwhile time extension for speech.

 

[lisa g]

Steve,
This is the voice amplifier I use. The amplifier is small enough to attach to your waistband then you can hook the microphone on your shirt collar or if prefer you can use a headset type microphone.

 

[Bleue]

I wouldn’t recommend the injections. My mother (died 11 months after diagnosis) had onset bulbar and those injections were recommended prior to her ALS diagnosis but 2nd opinions said they were painful and may not work. If you have been diagnosed with ALS I wouldn’t recommend any procedures that could make your ALS progress faster. It seemed anything my mom had done to her (PT, OT, wearing a splint, or even falling injuries) made her weaker, muscle atrophy, and/or progress faster. I would recommend finding alternative solutions for your voice such as the amplifier, and to stay safe and as healthy as you can, and stave off any progression for as long as possible.

 

[debwilson77]

My husband had something along that line before we knew it was ALS, unfortunately it didn’t really help.