Patient / Survivor Header
Topic Options
#129311 - 02/10/11 03:55 AM Here we go again! -removal of larynx-
gpk101 Offline
Senior Member (100+ posts)

Registered: 04/03/03
Posts: 122
Loc: Atlanta, GA, USA
Okay-trying to keep a good mental attitude re the doc's latest recommendation....a recent CT scan has shown a suspicious mass around some lymph nodes under my chin, but a larger growth has partially damaged and almost completely surrounds my larynx. He, being a surgeon, wants to cut out both masses-including my larynx-and leave me with a hole in my throat to breathe through.
I don't understand how this could possibly come as a shock or even a surprise to me-I've seen more than a little of the havoc (mental AND physical)that this disease can bring about with such ferocity. Somehow, I guess I'd lulled myself into the belief -not beng "sick" for the past few years-that I'd be fat 'n happy 'till OLD old age and die peacefully in my sleep.....yeah, right.
The surgery doesn't bother me-even the hole in the throat....but not being able to speak AT ALL is more than I care to even THINK about handling right now.
Anyone else been through this and lived to tell the tale? Why the hole in the throat? Would I still be able to use one of those electronic thingies held to my throat to communicate (more wishful thinking, I'm sure!) How the heck does one FUNCTION at all in society at large without speaking?
You guys have been my rock for many years and I know some of you have SOMEthing that I can look upon as "positive" coming out of this. The only thing I can come up with is that "at least I won't have to go around sounding like THIS any more!" :-) (I speak with a very "gravelly" barely understandable voice righ now)
_________________________
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!


Top
#129341 - 02/10/11 09:22 PM Re: Here we go again! -removal of larynx- [Re: gpk101]
gpk101 Offline
Senior Member (100+ posts)

Registered: 04/03/03
Posts: 122
Loc: Atlanta, GA, USA
Did I post this in the wrong area? Does anyone know if I could possibly use one of those electronic things? An aquaintance just told me I "definately" would. T/F? Why the hole left in the neck? (Insult to injury if you ask me) ;-)
HEEEEEELLLLLLLLLOOOOOOOOOO...........anyone out there?
_________________________
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!


Top
#129417 - 02/11/11 06:53 PM Re: Here we go again! -removal of larynx- [Re: gpk101]
Eileen Offline
Patient Advocate (old timer, 2000 posts)

Registered: 05/21/02
Posts: 2152
Loc: Trenton, New Jersey
Hi gpk,

I am a total laryngectomee and I speak just fine. I have a TEP, transesophageal puncture, in my throat, which a small slit between the trach and the esophagus where they insert a voice prosthesis. To speak, you cover the hole in your neck with a finger which forces the air through the hole in the prosthesis into your esophagus and up your throat. You speak as you do now. If you have the same surgery I had which totally removed the larynx, you will have two separate pathways. Your esophagus to your stomach and the trach hole in your neck to your lungs. Since your mouth and nose are no longer connected to your breathing apparatus, the reason for the hole in the neck, you will not be able to smell most things, although I can smell a little if I'm directly over it. I am surprised your doctor didn't explain any of this to you and was remiss in not doinng so.

Not everyone is a candidate for a TEP. Your esophagus must be able to vibrate for that to work. The doctor and speech therapist checked this out on me before deciding I was a candidate. Ask you surgeon about this. There is also a high percentage of TEPs that fail so it is a risky surgery.

Also make certain your surgeon is very experienced in this surgery. Ask how many he has done and how many TEPs failed. They often have to take an artery from your arm or some other part of your body to form a flap. I did not need this so can't comment on it other than it apparently takes a long time to heal and his very sore.

I was lucky and had the TEP placed at the time of the surgery which allowed me to speak about 8 days later but sometimes it is a few months before they do the TEP and insert the voice prosthesis leaving you until to speak unless you can use the electro larynx.

If you can't have a TEP you should be able to use the electro larynx although I was totally unable to speak with one. I don't remember why. Something to do with the shape of my mouth and rear dentures.

Find out more about what you are having done and if you are a candidate for a TEP, then ask me any questions you would like. There is also a Dr Dribrook on this board that had the same surgery. You could read his blog and/or PM him.

Good luck and keep us posted.

Take care,
Eileen
_________________________
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I

Top
#129424 - 02/11/11 10:59 PM Re: Here we go again! -removal of larynx- [Re: Eileen]
gpk101 Offline
Senior Member (100+ posts)

Registered: 04/03/03
Posts: 122
Loc: Atlanta, GA, USA
Thank you SO MUCH, Eileen for responding to my post. I was getting worried. I don't seem to have a very supportive family, so you guys are my lifeline to sanity. :-) (such as it is)
I only spoke very briefly with my doc over the phone, and was in such complete shock that my brain literally quit working. Thanks for giving me some pertinent questions to ask. Will Medicaire pay for the prosthetic larnyx? When you say some of these proceedures fail, exactly HOW do they fail?
I'm sure my doc-being the head of oncological surgery at Emory University here in Atl is familiar with the proceedures and risks you mentioned-it's just going to be quite a while before I can speak with him again. I'll be going to a medical oncologist next Fri (also Emory), and he'll prob suggest chemo, which hopefully would buy me some time. Any research you can suggest would be greatly appreciated.
How do I access this Doc's blog on the site?
Plesae anyone, feel free to email me direct @ gordonkellogg@yahoo.com if you prefer- I need help!
_________________________
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!


Top
#129626 - 02/15/11 06:47 PM Re: Here we go again! -removal of larynx- [Re: gpk101]
Eileen Offline
Patient Advocate (old timer, 2000 posts)

Registered: 05/21/02
Posts: 2152
Loc: Trenton, New Jersey
Hi Gordon,
Sorry I didn't get back to you sooner. I'm only on this board during lunch hour weekdays so if I'm not in the office, I won't respond. Recently because of personal tradegy, I'm on the board less and less.

Medicare used to pay for the indwelling prosthesis but has decided as of 10/2010 that it will no longer pay for it unless it is ordered from a medicare approved distibutor. Unfortunately the one I wear is not carried by a medicare approved facility according to my speech therapist. I still work so still have private insurance so haven't had to go there yet. It costs around $225 and mine needs to be changed 4 times a year, which is unusual. Most people can make it 6 months or a year before they need it changed. It needs changing once it starts leaking. I think Medicare still covers the cost of changing it. Check with Emory.

Failures - if the TEP leaks, it has failed. This is leakage around the prosthesis, not through. Since you are leaking food and liquids into the lungs, you may require a PEG tube. Plan B is to close the TEP at whcih point your only options to speech are the electrolarynx and esophageal speech. Talk to your dr about failures. I don't know much thank god.

Here is the link to Dr Brooks blog:

read on my blog at:http://dribrook.blogspot.com/
Itzhak Brook MD

There is a search engine in the upper right corner of the board. If you type in Dribrook, you get all his postings.

There is also blog in the section on blogs by the caregiver of a total larygectomee you might want to read. Other than that, there are not any others currently on the board that have had this surgery, so you may not get a lot of responses.

Take care,
Eileen
_________________________
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I

Top
#130082 - 02/23/11 09:45 PM Re: Here we go again! -removal of larynx- [Re: Eileen]
Marlene41 Offline
Platinum Member (300+ posts)

Registered: 05/10/08
Posts: 357
Loc: CT
When my father had his larynx removed,the only thing available was the battery-operated larynx. He didn't like that it made him sound like a robot - that was his personal prejudice. My father-in-law had used one for decades & was very comfortable with it. So, my father learned esophageal speech - very difficult, but he was also very determined. Basically, you swallow air & burp up sound. I met a man recently in the grocery store who either spoke esophageally (is there such a word) or had an internal device. He spoke well. HIs voice just sounded a little more gravelly than normal.

There will be a learning curve, but but you will be able to speak.See if there's a laryngectomee club in your area. They re great people & can help.

Good luck!

Marlene
_________________________
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!

Top


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
3 registered (Bart, Hockeydad, Sophie H.), 51 Guests and 8 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
9744 Members
23 Forums
15558 Topics
176665 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8037
ChristineB 7942
EzJim 5260
Brian Hill 4637
Cheryld 4603
April
M Tu W Th F Sa Su
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
Newest Members
nueclear, Trinity, marypro, Heike, martie_2014
9743 Registered Users