Medical Professional Training

The following link is a document developed by William Cross to train nurses and hospital personnel about the unique differences and concerns of being a Laryngectomy. You may want to use it in discussions with any anesthesiologist or nurses.

https://drive.google.com/file/d/16VNUDwo4Fs14MLDp-N-wHm80vI_5uERB/view?usp=sharing

Posted 9/2019

Talk to the Anesthesiologist before any procedure.

I always make sure I talk to the Anesthesiologist before any procedure I go in for. Many of them say the know about laryngectomees, however when I show them a card with a picture they realize they were thinking of a trach patient. Trach patients often can breath through the mouth and nose. I always stress that I am a NECK BREATHER ONLY. That with the picture helps them totally understand our situation. It was also brought to my attention that most hospital software now has the capability of adding an alert to the patient chart. This will pop up any time the chart is opened. Using this to alert anyone that you are neck breather only would be a good idea.

(Permission to re-print provided by InHealth Technologies, Carpinteria, CA.)

Ron Mattoon Seattle 2010
Posted 10/2019

MAKE SURE THEY KNOW AND UNDERSTAND!

INFORMATION FOR MEDICAL PROFESSIONALS BEFORE ANY PROCEDURE

As an OR nurse and the wife of a lary, I find it very scary when David needs to have anything done. I am lucky if he comes to my hospital, in that I can speak to the staff looking after him and ensure they fully understand his different anatomy. Most are well informed these days as I’ve been talking about him for the last 2.5 years. Even so, I always make up a show bag ready for his procedure. It consists of a round baby resus mask, a flexible reinforced ET tube, a trach mask, a catheter (in case they pull his prosthesis out). Not everyone has the luxury of being able to do that though, but you can still request to have those items available should they be required.

I have laminated posters that I printed out that live in his grab bag. If he goes to the ER for any reason, I stick them on the wall. If he gets admitted to the ward, they get stuck on the wall there. They consist of the difference between a tracheostomy and laryngectomy, an anatomical picture showing the airway, a sign saying “my nose is just an ornament. Please apply oxygen to my stoma. That’s the little hole in my neck”, CPR for neck breathers, and a few others. Every single person that cares for him in the ED or the ward, I go through absolutely everything with them regarding his airway and then I get them to repeat it back to me. Last year he had to go for a CT scan. I went through the usual “in the event something happens, intubate via his neck. DO NOT put ANYTHING in his mouth or nose. Forget they are even there” with the radiographer. It felt quite disturbing at first, saying that kind of stuff, but it doesn’t bother either of us now.

It’s surprising the difference it makes having the posters up. People actually look at them. They really look at them and take notice. It often encourages them to ask questions. Even people who aren’t looking after him come and ask questions, which is great! The more people that ask, the more people that know.

It still scares the carp out of me though because I can’t be there 24/7 advocating for him. David has a very normal sounding voice, which could easily make people forget that he doesn’t have a larynx.

For those facing a procedure, ask to speak to your anesthetist before surgery day. You need to know they fully understand. Even if it’s at the hospital you had your laryngectomy at, don’t assume they know. Some questions you could ask:

Do you understand the difference between a total neck breather and someone who has a tracheostomy? Please explain the differences.
How would you administer oxygen to me?
If I need to be intubated, what type of tube will you use and where will you put it? (The type of tube should be a reinforced, flexible endotracheal
tube)
What would you use to bag and mask me? (Ideally a round size 1 neonatal resuscitation mask, or a pediatric mask turned sideways) You can even throw in a trick question……What will you do in the event I have a laryngeal spasm? If they go through the protocol for that, ask for a new anesthetist because it is impossible for you to have a laryngeal spasm. It means they haven’t listened to anything you’ve said or asked.

I have looked after a few of the local larys when they have come in for a procedure. I made a point of seeing them before, letting them know who I was and that I was married to a lary. You could see the look of relief on their face. I also reassured them that everything is set up for them and everyone in the room knows how their needs differ from everyone else. The ones with an EL were allowed to keep it on them. There was never any question of it being taken away.

I’m hoping that as of early next year, my local hospital will be the most knowledgeable when it comes to knowing about larys. David is starting work there in January and will be in a role where he will come in contact with pretty much every person in the building. Knowing how he can’t shut up, absolutely everyone will hear from him!

TL:DR explain, explain, explain and explain to the staff, over and over and over. Get them to repeat everything back to you so you know they understand.

Jane (Wife of David – total laryngectomy, bilateral neck dissection 7/7/16,
Australia)

Educate where ever you go

One of the mistake made often is that the healthcare professional confuse being a total laryngectomee, with having a trach. With a trach patients can often breath both through the mouth and the Trach. The other thing to consider is that they deal with normal patient day after day so it is automatic for them to think we breathe through our mouth. It is a very easy mistake to happen and it has happened to me. That is why it is so vitally important that we make sure they understand. I always request to meet with the anesthesiologist prior to any procedure even if they do not feel they will be putting me totally under. I also discuss with them that if I do not have my EL, I will not be able to respond to them. I even do this when I am going through security at the airport. They are always understanding and supportive to me, and thank me for bring it to their attention.
Ron Mattoon Seattle, WA 2010