Laryngectomy care required

[Doug Frazier]

I searched the forums and couldn’t find any posts on this topic that weren't very old.

I am a 65 year old PALS. My wife and caregiver is also 65.

The good news is I was fortunate enough to get it when I was older. The bad news is we are both older and therefore the workload on my wife is my primary concern.

I am considering getting a laryngectomy. But I am concerned about the work required for my wife.

The information from my doctor and online lead me to think it is not too much work, but I would like to hear from PALS that have had one or caregivers for someone who did.

Did you find that it required the intense 24/7 care like a trach does?
How many suctionings a day were required?
Were night suctions a regular occurrence?

Pros and cons in general?

If you had to decide again now would you do it again?

I appreciate any information.

Thanks

Doug

 

[rao]

This article has your answers, I plan to do it.

Long-term outcomes after surgery to prevent aspiration for patients with amyotrophic lateral sclerosis - BMC Neurology

Background Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects motor neurons selectively. In particular, weakness in respiratory and swallowing muscles occasionally causes aspiration pneumonia and choking, which can be lethal. Surgery to prevent...

bmcneurol.biomedcentral.com

 

[lgelb]

This was evidently an atypical PALS six-patient case series. Mean followup of nearly 3y? It is also important to note that the CPL was done in concert with a tracheostomy that all the patients were judged to "need" at the time of surgery, in order to continue oral intake. I doubt any payor would fund that indication in the US. The CPL wasn't a standalone procedure.

The pt burden elicitation methods were very nonspecific (using continuous aspiration isn't just about reducing suctioning burden; it has its own logistics); it was basically a pilot of a new suctioning system, and the health system/accommodations for MND are VERY different in Japan.

Don't make any decisions with this study in mind. If your thought was to continue oral intake via the CPL, note that the mean ability to continue oral intake was only about a third of the mean followup period.

I would also operate under the worst case assumption, that a trach w/w/o CPL would entail the same level of suctioning burden as any other trach, because you do not know what kind of aspiration control options will be available/practical/funded wherever you happen to live, even if/as the CPL is approved as an adjunct to the trach.

 

[rao]

i saw clips from japan of trached pals still consuming liquid by mouth in year 20+, i would miss eating but some tasty soup would be a nice qol. als support in japan is among the best for the average joe. i.e heavily subsidised 24/7 care at your own home etc

 

[lgelb]

No question, Japan is very different. But most of our users don't live there.

The self-reported measures of satisfaction used by the linked ms can be especially dicey in countries where physicians occupy positions of cultural trust and authority, and where there is less shared financial responsibility for care.

 

[Doug Frazier]

Thank you for all the great replies.

I find it interesting that there aren't more of these being done.
For example, it is rare to find someone that had one or knows someone who did.
On the other hand, two neurologists at Mayo are for it. My local neurologist did not pause a second and said it was a better solution with guaranteed no aspiration of saliva which is a big threat to PALS. It makes sense that if a big threat is removed it can only improve the odds of living longer.

Online, there are clubs for people with a laryngectomy (mostly cancer patients). Their consensus opinion is the first two weeks are difficult but after that it is very easy to live with. Their suction loads are reasonable and consist of 10 second suctions a few times a day, usually on a schedule.

I've had two rounds of questions with the otolaryngologist at Mayo who does over 100 of these a year. The key points from the last session were. Data shows this makes sense for ALS patients as soon as they lose the ability to speak. (https://www.researchposters.com/Posters/AAOHNSF/AAO2008/S141.pdf). This study is 10 years old but he confirmed he still agrees. When asked how much time it buys us on average he would only say it is significant. He said he has seen many different reasons for not choosing but mainly was patient choice differences. Of course it is a more expensive procedure and complex so insurance companies might push the simpler procedure and the simpler trach can be done by many more doctors. I would probably lose even the ability to grunt. Almost all the risk factors with it are due to cancer patients having so much damage to these areas from their treatments. So the risks for me, a 65 year old PALS are extremely low. Suctions are 3 times a day for 10-15 seconds.

So, his data matches what the laryngectomy patients online report.

There was a Johns Hopkins study online that concluded that if a doctor does more than 6-8 of these year then success rates dramatically improve as does the follow up care at the hospital. They were pushing for a list of more complex surgeries that should only be done at places that do a lot of them. They said too many doctors were doing these more complex procedures and having bad results. I guess this means if you have it done, it is a good idea if the doctor is experienced and possibly a more risky proposition if not.

I am still leaning toward it because all the hard data seems to line up. Additionally, we ALS patients that have lost the ability to speak are at a strange advantage because we already have the single biggest objection to getting one.

Thanks again for the great replies.