Suddenly soft voice (on ventilator)

[BillMiller823]

Hi all,

For over 15 years, my voice has been strong despite ventilator use as you can hear in this six-minute "Meet Bill Miller" video on YouTube: http://www.youtube.com/watch?v=DiVonbXUWcU

That was recorded when I was using an LP-10. All LP-10s were discontinued and about 6 months ago, I started using a Trilogy100 (see this thread for details: https://www.carecure.net/forum/showthread.php?t=169266).

For about the first 5 months on the Trilogy100, my voice was almost as good as it was on the LP-10 (very little difference in speech quality).

Then about 4 weeks ago, my voice very suddenly got soft, like I have laryngitis, except I'm asymptomatic of infection, cold, fever, etc and we have no obvious reason why my voice suddenly got soft. I don't currently have the volume or duration I did previously. It's like I'm not using a speaking valve (PMV) but I am.

One thing we thought might be the cause was it had been over a month since we changed my vent circuits because I was awaiting delivery of new circuits. Also, the large antibacterial filters had a slight gray look on the vent side as if they were filtering dust or perhaps bacteria that caused discoloration. But the entire circuits including filters have been changed twice in the last 2+ weeks and doing so may have helped my voice a little, but not much.

My hydration is solid (I drink by mouth and get extra via g-tube) and I feel fine. It's just that my voice suddenly got soft.

Any ideas as to the potential problem? Have any other vent users experienced similar? Should I see my ENT and if so ask him to checkout what exactly?

My ENT has cauterized my trach stoma and done bronchoscopies on me before, but I don't think he has a great deal of experience with vent users like me. My pulmonologist might have some ideas, but he's difficult to communicate with (though I will if needed).

Being paralyzed from my neck down, my voice is my tool to the world and it's quite frustrating to not be able to speak as well as I could for the majority of my vent use.

Thank you for any ideas, thoughts, prayers or help you can offer.

Sincerely,

Bill Miller

[Scaper1]

Bill, do you feel out of breath and/ or dizzy? What about oxygen saturation levels? Do you have a spirometer for measuring your exhalation outputs? Has someone checked if your vent is actually delivering the volume it's supposed to?

Aside from equipment glitches like air leaks, the factors that seem to affect my voice are: (lack of) sleep, stomach bloat\ abdominal tightness, and infection. That's on a pacer most of the time though.

[Patrick Madsen]

My thoughts and prayers are with you Ben. Stay strong buddy, we need that #1 bowler around.

If I had one wish, it would be for you to get that strong voice back. My wishes usually come true so be patient.

[BillMiller823]

Hi Scaper,

I'm not dizzy or out-of-breath. I'm getting plenty of air. O2 sats are good. I don't have a spirometer, but everything feels fine. Plus it's the same on both my Trilogy100 machines, and I don't think they would "go bad" simultaneously, especially since my wheelchair vent racks up quite a few more hours than my bedside vent.

Has anything like this happened to you or anyone you know?

Thank you for replying.

[BillMiller823]

Thank you Patrick. Bill/Ben, I'll answer to either -- especially if my voice gets strong again!

[Scaper1]

I lose my voice when I'm sick or there are secretions at the back of my throat or around my trach. But never for longer than a few days. Fatigue and cramps also make my voice weaker, especially on my pacer.

Have you totally ruled out an upper-airway or throat infection? Or tried a Ventolin-like product?

[LindaT]

No answers Bill, just understanding how important your voice is. And yes, it is very strong on your video.
Dave has a voice about half of the time when he can tolerate the PMV.
We change the circuit monthly and I notice the filters can get a grayish tinge to them, but can't imagine that would cause such a change. Good things to check out.
Keep us posted and hope this is resolved quickly.
I understand your hesitation with the ENT. Dave finally has a good one as far as being comfortable with the stoma, but doubt much vent experience.
Since Dave is on the vent about 12 hours a day I realize it is not the same as you and Scaper.

[BillMiller823]

I'm asymptomatic of infection, but I guess I could have something and not know it.

I had to Google search Ventolin to learn that it's albuterol, which I've heard of, but don't use. I use Mucomyst (actually, the generic acetylcysteine solution, 20%) via nebulizer twice a day (0.5 ml mixed with 2.5 ml of sterile saline) and I also get six 5ml saline bullets spreadout within about a half hour of the nebulizer treatment to further moisten my airway, a routine we developed based on the observations of my ENT. And we always use the CoughAssist afterward, so it's not like saline is pooling in me. This is a routine I've done with much success for a long time (though the saline bullets went from five per treatment to six per treatment about six months ago because I felt the Trilogy100 was drying my airway out more than the LP-10 did, which was evidenced by a bleeding issue).

My trach has been changed twice since this started, with basically no effect (improvement) on my voice.

[Scaper1]

I find saline to be quite irritating when instilled. 30 ml is a pretty large amount. When was your last bronchoscopy?

[BillMiller823]

It's probably been a year or so since my last bronchoscopy. The PMV dries out my airway, which occasionally would contribute to bleeding issues (once in a while we would get a significant quantity of blood when using the CoughAssist and my ENT would do a bronchoscopy and said the only problem that might be causing the bleeding is that my airway was too dry, which could result in somewhat of a "chapped lips" effect in my lungs/airway). That's why we use so much saline.

Plus, if I'm not mistaken, the respiratory therapists at Shepherd (when I did rehab over 15 years ago) would use up to probably 15ml of saline in less than five minutes to assist secretion removal during a CoughAssist session (except they were using the CoughAssist's predecessor, the in-exsufflator).

[wtf]

I can only offer you my thoughts and prayers Bill. You have more to offer to this world besides your voice, but I understand what your saying. I hope this is only temporary.

[SCI-Nurse]

My opinion is that you should see a speech pathologist to have your speaking evaluated and treatment recommendations made. It is common to have scar tissue after a trach.

pbr

[gjnl]

Is there a possibility that the adjustments on your ventilator or speaking valve have been changed during cleaning or for some other reason. A friend of mine says that even minor adjustment changes can make a big difference for him.

All the best,
GJ

[BillMiller823]

LindaT, somehow I missed your post yesterday. I'm glad to know that monthly changes and slightly dirty filters don't seem to be a problem. Thank you.

wtf, I appreciate your thoughts, prayers, and perspective. Thank you.

pbr, I hadn't thought of seeing a speech pathologist. Thank you.

gjnl, we've checked my vent settings and they haven't changed. I thought that it could be old speaking valves (mine are probably over 10 years old) but I can test them by holding my breath for a cycle, and they seem to be working fine. Thanks.

I think I'm going to pursue the speech pathologist option. Perhaps my primary physician knows a good one.

[GL]

Hi Bill I used a speech pathologist and she really helped me I had a very rough time with my Trach


I truly hope things work out for you
Keep Smiling
Sincerely ;
GL