CSN Login
Members Online: 3

Total Laryngectomy

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

My fiance was diagnosed with stage 3 laryngeal cancer last November (2011) He wasn't a smoker, nor did he drink to excess, but he did work with asbestos and some of the doctors suspect that is the cause. He went through two months of radiation and chemo, still has a g-tube and has not been able to eat since just before Christmas. The treatment seemed to help, although it was a grueling experience, to say the least. Last month he got the news from his follow up PET that the cancer is back and he has to have a total laryngectomy next week 8/17/2012. He will have to use a electrolarnyx and I am currently shopping for one. What can you tell me about recovery from the surgery, experiences you've had with different electrolarynx devices, and anything else I should add to my list of things I'm freaking out about? At this point we are kind of frustrated/angry about all he had to endure and then having to have surgery anyway. The doctor at University of WA Medical Center told us that the cure rate for throat cancer is the only one going down and he feels it is due to the fact that the standard treatment is now radiation/chemo and surgery as a last resort. I wish we had looked more closely at surgery before all that, which was a nightmare and caused irrevocable damage and healing problems. I guess I want someone to tell me life is really okay without a "normal" voice and the recovery is not as bad as going through chemo and radiation. (Only if it's true though.)

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I had a total laryngectomy in Nov 2011. The operation and recovery was not much of a problem. There is a lot of mucous whenever I move. However, there is little mucous when I am perfectly still. This is great, because it allows me to sleep. Of course, we laryngectomees are forced to sleep on our back.

SPEECH: There are three ways to restore speech: 1) Electrolarynx, 2)Implanted Voice Prosthesis, and 3)Esophageal Speech.

Implanted Voice Prosthesis: The surgeon makes a tracheal esophageal puncture (TEP), and inserts a one-way valve. When the patient covers his stoma (hole in his neck) air is forced through the valve into the esophagus. The esophagus vibrates doing the job of the vocal cords. The voice prosthesis is simple to use but requires constant cleaning. Someone (patient or caregiver) must stick a tiny brush through the hole in the neck and scrub the hole in the prosthesis. Also the prosthesis fail often, and must be replaced. I think the average life time for the prosthesis is four months.

Esophageal Speech: The patient swallows air and the burps to speak. Actually the air is not swallowed into the stomach but only into the esophagus. Words that start and end in hard consonants like cake, cup etc are easiest to say. Lucky for me (and your fiance) swear words are also easy. Cr*p.So after the operation, ask your love to swear.

I have both an electrolarynx and a TEP. But I have opted to rely on esophageal speech. Everyone is different. Most total laryngectomees have opted for the prosthesis (TEP).

Your fiance will need to keep a tube through the opening in his neck most of the time. I leave mine out for two two-hour periods on most days. If the tube is not in, the hole will grow closed, like the holes for pierced earrings. The tube is irritating when the head is moved.

I have a lot more to tell. I live in the Seattle area, and had my larygectomy at Swedish. They routinely place the voice prosthesis at the time of the operation. UW has a different philosophy, waiting to see if the patient can learn esophageal speech. Of course, there is always the money/insurance issue.

Esophageal speech is the best if your fiance can learn it. It is very normal (like a hoarse throat). You (or anyone else) can contact me at: author@richardwalloch.com
I am an author-want-a-be. not a real author.

For more information search out Laryngetomy Life (Great Britian)
Web Whisperers (USA)
Rick.

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

...and he is in your area (how lucky is that!?). When I first came here after being diagnosed, I too bumped into someone from my area...Staceye...she was a lifesaver for me...I'm glad you found Rick here.

My mom had a laryngetomy, and tried to use the esophogeal, but due to COPD, she just didn't have the air to do it....so opted to get the TEP. It took a few try's to get the right size for her, but the day she could finally talk she said "they can slit my throat, but they can't shut me up"...LOL.

I wonder if you want to buy an electrolarnyx yet, before giving the other two ways of speech a try (can you rent one, maybe from a Medical Supply outfit??) They are very expensive, and he might not even need it.

I can tell you that my mom healed very fast after surgery...and within a couple of months was out playing bridge...talking to high school students about smoking, having dinner with friends. She had quite a bit of mucous in the mornings, but used a machine to clear it...in the end, the COPD is what killed her....she stayed NED for many years after surgery.

p

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I agree with what Phrannie has written. At Swedish, my surgeon has done about 200 total laryngectomies. I am the second patient getting on with esophageal speech. So the score (if anyone is keeping score) is TEP (Prosthesis) = 198; Esophageal Speech = 2; Electrolarynx = 0.

Another note: The electrolarynx is hard to use. And the patient's neck will be so swollen for a couple of months post surgery, that the electrolarynx will be particulaly trouble some.

But enough talk about restoring speech. All you need to know is that there are three methods, and adequate speech will be restored. You actually have enough other things to be concerned about in the immediate future. I'll put them in my next post. Rick.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Let's run through the day of the surgery:
1) Wake up at 3am.
2) Arrive at hospital at 5am
3) 7-hour operation starts at 7am.
4) Out of operating room 2pm
5) Out of PACU post anesthesia care unit 3pm
6) Can visit at 3pm
7) Move from recovery to ICU at 5pm

So when the patient has finally reached his hospital room, the caregiver has been awake and stressed for 14 hours. You need to think: How long do I want to stay? Where will I sleep? How far do I have to drive? My wife stayed in a motel-like room at the hospital; but I don't know what kind of arrangements are available at UW.

The doctors do their rounds early the next morning. Usually between 6am and 8am. You might want to be there. Don't stretch yourself too thin. As a caregiver, you need to plan so you can get some rest.

Days 1 To 3: The patient will be well medicated and be pretty much out of it. However, I found that I enjoyed the sound of laughter on the TV, even if I couldn't follow the program. Shows like Ellen (which I occasionally watch at home). But just happy sounds were a great help.

Days 4 to 10: Well I stayed 10 days, many stay 6 to 7. The big events in the hospital day occur between 5am and 11am. Doctors rounds, physical therapy, occupational therapy, house cleaning, and meds. My wife showed up around 11am; but I was all tired out and wanted to sleep.

In the early days (3 to 7) I spent most of the day in a chair. I had a walker in front of the chair, so I could stand without calling staff. You can't go anywhere because you're attached to the equipment: ecg, spo2, urinary catheter, oxygen. But I found being able to stand and walk in place very helpful. (Physical Therapy makes everything portable when they come to take the patient for his daily walk. The patient even gets his own oxygen tank.)

All nutrition will be taken through a tube. Reason: the esophagus has been reconstructed from muscle taken from the shoulder. The docs need for the new food tube to completely heal before food/water can go down it. I used tube feeding for about 3 weeks after I got home.

Now that I'm on the other side of the treatment, I must confess that I am very happy most of the time. The professional caregivers with your help will pull your fiance through. You will marry and have a long life together.

Your fiance will have a tube in his esophagus, which will prevent use of the prosthesis and esophageal speech. But as soon as the tube comes out; have him say "CRAP". The perfect word for the situation. The professional speech therapist will ask him to say CAKE. FYI: the "K" sound traps air. Rick.

Ladylacy
Posts: 462
Joined: Apr 2012

My husband at age 74 had a laryngectomy and had to have his throat reconstructed due to radiation. He was only in the hospital 5 days and never in ICU. He had no problems and yes he can sleep on his side, never was a stomach sleeper. He uses a electriclarynx and does quite well. At first he couldn't put it on his neck and used the oral cap that came with the TruTone. And for all those that have a TEP, they are just as many that can't use them. It would be whatever the person can adjust to using.

As far as being upset about having the radiation and chemo first, that is what my husband had (and we were told this is the standard treatment) and the PET scan said he was clear 6 weeks later. Well he wasn't, there was still way to much swelling to see the cancer. He was lucky because it hadn't spread anywhere but the tumor was quite large.

Now he is fighting cancer at the cervical of his esophagus which was found in April of this year when he decided to have the puncture for the TEP. We are in the holding pattern until next month for a PET/CT scan to see if the chemo/radiation (yes another 35 radiation treatments to the same area) got the tumor. It was small when found and no signs of spread. We have been told this is a rare place for cancer and that surgery would be very hard due to his previous surgery, age and radiation.

Just remember everyone is different in how they respond to any treatment what works for one, doesn't mean it will work for another. Another website that has lots and lots of information for laryngectomees is webwhispers.org. They have members from all over the world and lots of good information. We were told of this site by our local ENT and then by the doctors at the cancer center where my husband is being treated now.

DAWNIEDUCK
Posts: 2
Joined: Sep 2012

SORRY TO BOTHER YOU BUT I WAS WONDERING IF YOU COULD DIRECT ME TO WHERE I CAN FIND OUT ABOUT A ELECTRICLARYNX OR TEP CUZ I HAVE A TRACHE AND I WOULD LIKE TO KNOW MY OPTIONS DO THEY TAKE THE TRACHE OUT ?

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

Did you get he info you were looking for? I didn't see your post, for some reason, until now. Someone on here told me to check out Webwhispers and it definitely has a lot of info. He never had a trache, so that wasn't involved. He has a permanent stoma. I did a lot of research and had the best luck with Edgepark, as far as shopping for a electrolarynx. They were awesome and got it to him right away.
Hope this helps, and sorry again it I am so late in responding.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

You can look at Atos Medical. They make the Provix Voice Prostesis which fits into a TEP. (Sometimes the terms get used interchangeably.) TEP stands for Tracheal-Esophageal Puncture, which is just a hole. The prosthesis is a one-way valve which allows air to flow from lung into esophagus and thus to the mouth, but prevents food from going the other way. The TEP must be made initially by a surgeon. Rick.

patricke's picture
patricke
Posts: 435
Joined: Aug 2006

I had a laryngectomy in June of '11, due to a tumor at the entrance of my trachea. I so I am a trachee, and have a prosthesis. My speech leaves a whole lot to be desired due to a huge portion of my tongue no longer being in the house (BOT surgery in '00), however, that being said, so to speak, I do manage to communicate fair enough, and I must say life is good; it does take adjusting though, I won't lie. The recovery after the surgery, by the way, was really no problem, and was without pain or any complications, etc. In the end, I believe that, for the most part, how we are effected by what happens to us depends 90% on our attitude about the event, rather than on the event itself. So, hopefully your fiance will have a very positive attitude, create and adapt to a new normal, and life will in fact be okay. Actually, life will be great, because the two of you will be able to continue on your journey together.

PATRICK

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

Just wanted to say thanks for all the great input from each of you. It helps to hear from you who have been through this. Too late on the purchase of the electrolarynx. I ordered it and it will be covered 100% by his insurance. But it's good to hear there are other options too. The speech rehab person said he would want one for a backup, even if he decided to go with TEP. The esophegeal route is interesting as well.
Yes, I agree that attitude is a huge part of how things turn out. He has a really positive attitude and is especially looking forward to being able to swallow and eat. He has been on a g-tube for a long time. He says he will get through this and be able to travel. I say yes, but first a wedding would be nice.
Rick, I will give him your email and see if he wants to contact you. We live near Maple Valley, if you know where that is. I am going looking forward to getting this over with and having him free of the pain he's in right now. Will keep you posted as we move through this next (hopefully last) phase.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Your fiance can try esophageal speech while using either the electrolarynx or the TEP prosthesis. And you don't need much in the way of instructions to make the first sounds. The trick is to "almost swallow" often with pushing the tongue on the roof of the mouth. Then try a word that begins and ends with a "hard consonant". Like cup, cake, cat.... The hard consonants trap air in the esophagus. Words with soft consonants, like more, nose are much more difficult to say.

Since there is no monetary input to try the first words in esophageal speech, I don't see any downside. To progress with it, your fiance will probably need some lessons from a speech therapist.

But the big thing is to realize that there are three methods to restore speech. I am partial to esophageal speech. If I were not totally committed, I would not have worked so hard to develop it. But no technique is right for everyone. Lucky for you, there has been a patient who posted on this tread that is using each of the methods.

Finally no method for restoring speech is what can be called easy. No method is like putting on a pair of glasses or contacts and vision is restored. Each will require work on the part of the patient and patience on the part of the caregivers.

I'll be here if your fiance ever wants to email me. But don't be in any rush. You first have to get through the operation. Everyone is different. But what is common about laryngetomeees is that we've pulled through. And if I can speak for the group: We have very many happy days. Believe me, the operation is just a bump in the road.

I know that your fiance will do well, and will be able to talk again. Rick.

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

He did very well with the surgery and although the week in the hospital was a challenge, that went well also. He is improving each day and I think he's better rested than I am. The first week home was really difficult, but he now uses the suction machine on himself and is not having as much mucus.
He still has a g-tube, so didn't have to do the nose tube thing. He is beginning to swallow liquids and re-discovering what tastes good and what doesn't. Dreaming of eating a steak, but I'd like to see him doing more swallowing to be able to work up to something more solid.
Communication is frustrating, to say the least. He is relying on mouthing words mostly.Luckily I'm pretty good at lip reading, but I'd rather not have to become expert at it. Reluctant to use his electrolarynx as it makes his face hurt later. He gets frustrated when I don't get what he's trying to say and gives up after about two tries. Also, have run into people (daughter, friend, etc) who are not supportive or patient with trying to understand him when he's using it.
A couple of questions:
How long did others have to use the humidifier? Is there one that doesn't sound like having a Mack truck in your bedroom? We have muffled it with a quilt and a pillow and it still is loud and also overheats. Dr says he will have it for a long time, whatever that means.
Suggestions for foods that work early on to be able to easily swallow?
What about stoma covers? What have people used and found to be useful?

He is doing well and I am very grateful. Had his first post op appt a week ago and they were so thrilled with his healing. Got all his stitches and staples out. Said it is rare for someone who has had radiation to heal so well so quickly.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'm not surprised that the caregiver has suffered more than the patient. After all, as patients we are medicated. But what help does the caregiver get? So a big round of appreciation for my wife and all the caregivers out there.

The swelling will go down over the next couple of months, and the electrolarynx will become easier to use. However, don't settle on the electrolarynx as his primary method for speech restoration.

By the way, my speech therapist got my voice prosthesis working again. I am very pleased to have it back. Nevertheless, I have chosen esophageal speech as my primary method.

After sufficient healing has taken place, I would encourage all laryngectomy patients to attempt esophageal speech. Swallow (or better, almost swallow) and just try an easy word: "cake", "cup", "cap", "Scotch", or my favorite: "crap". Easy words are single syllable and have a hard consonant and the start and end. Hard words start with nasal or soft consonants: "more", "house", "see". Even making the K-sound is a start. Even making a sound that's too soft for anyone to hear is a start.

Esophageal speech is not painful, so I would not do it if it causes any pain. Wait for the throat to heal.

I haven't used a humidifier but I suffer for extreme mucous. So a humidifier should probably be in my future.

My esophagus is extremely narrow; anything not completely chewed gets stuck. I cannot take any-sized pill without first submitting it to a pill crusher. So a favorite food of mine is pancakes. Even if a pancake bite gets stuck, a little liquid will dissolve and get it down. I can gauge the size of my esophagus by swallowing various-sized pancake bites till one gets hung up.

Of course, one of the best foods (in my opinion) is the egg. Soft and full of protein. I would recommend soft squishy food before solid solids. Of course, if the patient has no trouble swallowing, eat whatever.

Any esophageal sound at all will be an accomplishment. Of course, all patients really need a speech therapist. All I'm trying to do is "show" esophageal speech is possible.
Rick.

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

Oh my gosh Rick, you were so right! I never would have thought to have him try pancakes, but on your suggestion I did and it worked! He has graduated to waffles and thinks he's in heaven. Thank you for all your ideas.

I can't believe your doc didn't have you use a humidifier. I don't know how you have managed without one. It thins the mucus and he used it 24/7 for the first few weeks. I just bought a regular one (without the tube and mask) at Bed, Bath and Beyond that is silent (thank God!) and seems to be working fine too. I would strongly suggest you try one. Did they order you a suction machine? That puppy works like a charm too, although it seems to kind of gross people out when he he has to use it.

Hope you are doing well. Paul is really starrting to feel better and his appetite came back suddenly. Yesterday he was craving all kinds of foods. He roasted a chicken, made mac and cheese and baked potatoes for dinner. Couldn't eat the chicken, but he tried. The carbs went down fine. Looking forward to the day he can eat enough to gain some weight and ge4t his g tube out.
Thanks,
Chris (QuisoNeo)

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

This is probably too early for you and Paul. I plan to attend and will report back:
http://www.ohsu.edu/xd/health/services/ent/for-healthcare-professionals/upload/2012-Pacific-NW-Laryngectomy-Conference-Brochure.pdf
Sorry you have to cut and paste it into your address bar.

Note that the conference is sponsored by Atos, the manufacturer of the voice prosthesis. Don't miss the part that says it's free for patients and one caregiver.

Pancakes Worked! Awesome! I feel like both of the Tapit Brothers, the hosts of NPR'S Car Talk, when some calls back saying their advice worked.

Let me also give you a link to my voice therapist. She is not only good; she is a total layngectomee herself. You would never guess she talks without a larynx (or a voice prosthesis). I would guess the UW has great voice therapists of their own. So I would use one at UW. And it is a little early (but only a month or so early) to start thinking about voice rehabilitation.
http://www.swedish.org/Physicians/Joanne-Fenn#axzz26kJRxOhs

The trick is for Paul to make any kind of sound at all. The easy sounds are "K" "Cake" "Cup" Actually everyone starts with "cake" because of the starting and ending K sound. The K sound forces air into the esophagus, making the next sound easier to say.

I must warn that esophageal speech is frustrating to learn; and very few master it. I don't know yet whether I'll master it myself. However, I can get short phrases across. I often must repeat the phrase. And I got a paper bag when I asked for plastic. And I just hand the pharmacist (clerk) my driver's license rather than saying my name.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network