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Tracheostomy

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Looking for people that was left with Tracheostomy due to their Cancer. I'm a one year survivor from Laryngeal Cancer and was left with a trach. God bless

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband had surgery in early March and still has his trach. He is going through chemo and radiation and they tell us it should be able to be removed once radiation swelling subsides and he can go a certain amount of time with it capped.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Mine has been permanent because the radiation killed my cancer but the radiation scared my wind pipe and narrowed it.I'm hoping to have laser surgery to open up my airway so I can get it out. I've been waiting for the swelling to go down. I hope and pray.God Bless

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

that you get your laser surgery, and are able to get rid of your trach...so many miracles out there in this modern world....the first one is how the body itself tends to it's wounds...

p

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I too had the tumor on my voice box...I was trached twice the first time was after surgery, I was really surprised, I had some many complications, screwed up surgery from one quack...and, one week later found a Stage 4 on my voice box as yourself, I went threw rads and chemo and nearly died, no peg, lost my weight, and they overrated me, to no good cells, as I then begin to rot, sounds horrible, but I was not getting better, My esaphogus collapsed, and they nearly lost me, I a woke again trached, this nearly took me out to deal with this tube, gagging and couhging. it fell out all the time, people looked like, well lets face it...Being an active male and and a gym rat...it changed my out look on life, Yes I am angry still, I work a few days, take life slowly, no running, no heaving lifting, the heat kills me to breath, The Doctors would love to trach me again, I will fight with all I have to resist this mechanically device, and live like I use to, I have a rough voice, and will never sing again, I wish I could tell you it's going to be better..i gave up a lot to fight the tube and its difficult sometimes..please feel free to contact me. your getting there, I would like to know why our wind pipes can't be stretched..Doctors would love to add more, but do nothing that broke along the way....Take Care...Dennis in TN

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

DEAR DENNIS I WAS HOARSE FOR 2 MONTHS AND WENT TO MY PCD AND HE BRUSHED ME OFF SINCE I WAS ALREADY ON OXYGEN FOR COPD DUE TO SMOKING FOR YEARS SO I CALLED MY BREATHING DR AND HE SEEN ME AND REFERRED ME TO A ENT DR I WASN'T IN HIS OFFICE 5 MIN AND HE PUT A MIRROW DOWN MY THROAT AND TOLD ME THERE WAS A GOLF BALL SIZE TUMOR ON MY VOICE BOX AND IT PROBANLY THE C WORD I FRIEKED OUT 2 WEEKS LATER I COLLAPSED AT HOME MY HUSBAND CALLED THE EMS AND THEY TOOK ME TO THE ER THE TUMOR WAS OBSTRUCTING NY AIRWAY THE NEXT DAY THEY PUT THE TRACH I A FEW DAYS LATER MY G-TUBE 2 WEEKS IN ICU 1 WEEK OUT ON THE CANCER FLOOR AFTER THAT 3 MONTHS IN A REHAB NURSING HOME AND 38 RADIATION AND 6 CHEMO MAY 2011 MY LOVING AND CARING HUSBAND BROUGHT NE HOME I'LL WRITE MORE LATER GOD BLESS BRIGET WV

malloyproducer
Posts: 6
Joined: Jun 2012

Trach, I sincerely hope your new tube is more comfortable and won't be permanent. I am new to all of this, my mother was just diagnosed with stage 4 tongue cancer (and larynx) and will receive a trach next week during her biopsy, they're leaving it in to protect her airway.

i don't mean to intrude, but I saw that you were in a rehab center during your chemo and radiation? I am trying to figure out if this would be a good option for my Mom, who is 75, weighs 90 lbs, and has a home that is truly not safe for her to undergo treatment in.

If you don't mind sharing and if you have time, would you mind sharing how you got into the rehab center? Did your physician order this or suggest it? My Mom has Medicare A and B, but no secondary. I'm concerned that this might be cost prohibitive for her, even though I am sure it would be better for her and, in fact, might be the only sane option.

Thank you in advance for any information you might give me and I truly wish you the best with your treatment, recovery, and remission!

Peace and light,
Kathy

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

I went yesterday and got my Trach changed. I guess I have excepted it I'm still have my hope. My ENT oncologist said that its going to take time. Hope your having a great day. God Bless Briget in WV

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

i have had my trach now for almost 4 years do to radiation damage. prior to that i did not know i had oxygen problem, when i got it i could feel right away the relief of more air to lungs. there is good and their is bad too it. i really like the good.

john

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

DEAR JOHN I'VE HAD MINE FOR 15 MONTHS DUE TO RADIATION DAMANGE AND THE GOLF BALL SIZE TUMOR WAS ON MY VOICE BOX AND OBSTRUCTING MY AIRWAY I'M WORKING WITH A ENT ONCOLOGIST WHICH I WILL GO SEE THIS COMING TUES TO GET MY TRACH CHANGED MINE IS A SIZE 6 IT WAS A SIZE 8 AND THE SAME DAY I HAVE A SWALLOWING TEST WHICH I HOPE I PASS THIS TIME I'LL KEEP YOU POSTED GOD BLESS BRIGET IN WV

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Saw my surgical ENT last week. I told him we may as well make my "temporary" trach permanent. Mine is a result of a surgery to remove half my mandible last June rather than my BOT back in 2004. This is just another "gift" of the radiation treatment. Last June before I was discharged from the hospital, they removed my first trach. That lasted about two and a half months. When the stoma was almost closed, I started having problems breathing. They had to put the trach back in while I was awake. That was an experience I NEVER want to repeat. Anyhow, on Wednesday, they are going to fit me with a Montgomery trach. I will be very glad to get all this stuff off my neck finally.

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

glad to hear there is progress. There's a lot to be said for that. Even if it isn't perfect, it still is a step or five in the right direction. Wishing things go well for you. You certainly deserve it.

Pat

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I still haven't given up on things totally. Some days are harder as you know too well. I don't think I could handle a second bout like you have. Keep it up.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

GEORGE I HAVE OXYGEN TO MY TRACH DO YOU? IN MARCH OF THIS YEAR I GOT FITTED FOR A SPEAKING VALVE THAT CONNECTS TO MY TRACH WITH A MASK AND MY OXYGEN. WHAT IS A MONTGOMERY TRACH I AVE A SIZE 6 TRACH. I STILL HAVE MY VOICE BRIGET

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Briget, I did a little search on the net for the Montgomery. It's supposed to be made of a softer silicone material. It sits more flush with your skin and you don't need all the ties and stuff around your neck to hold it in place. I don't need oxygen. My oxygen saturation is always between 98% and 100% so that is not a problem. My trach is a disposable 4. I change the inner cannula once a day. I have to clean it out very, very often due to mucous. Luckily, after 44 years of smoking, I still have a very strong cough and do not need to be suctioned. It's aggravating though to get the inner piece all cleaned out and end up having to take it back out a couple minutes later because the mucous has built up again. Some days I can get some words out and others no matter how hard I try, I can't. It's a result of the surgery I had on my jawbone last June. Eventually, I hope it will get better. Have to wait and see.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Dear George T went to my ENT onocologist and got my trach changed to a Shilly cuffless yesterday.it always hurts to have my trach changed but the next time I get it changed it won't hurt as bad.Wishing you a awesome day. God Bless Briget in WV

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Dear George T went to my ENT onocologist and got my trach changed to a Shilly cuffless yesterday.it always hurts to have my trach changed but the next time I get it changed it won't hurt as bad.Wishing you a awesome day. God Bless Briget in WV

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Dear John, Thats the reason I have my trach and it was obstructing my airway. M tumor was a golf ball size on top of my voice box.After a year of I thought I would ever talk again and then this past March I got fitted for a speaking valve and I still have my voice. I'm very thankful for that. I hope something has brighten your day. God Bless. Briget in WV

patricke's picture
patricke
Posts: 442
Joined: Aug 2006

Hey bjw, I have had a trach since last June when a tumor at the entrance of my trachea was removed, along with my larnyx. Thank you very much radiation treatment, the gift that just keeps on giving. I'm still in the process of accepting this last kick in the solar plexis which has, thus far, left me speechless, and no longer able to persue surfing and scuba diving which were my passions. However, this too shall pass, and I will find other outlets, but it is a lot to handle. I guess everyone is affected differently, although never positively, when one has to have a trachestomy, yet it sure beats the alternative. Best of luck with your adjustment.

PATRICK

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Dear Patrick, I know its no fun when your left with a trach from our cancer we got. I use to be very active .Biggest thing I miss is driving my car and going to yard sales this time of year. My small pleasure this spring is I will be able to eat my strawberries out of my berry patch. The end of May last year I just got home from the rehab nursing home and my throat was still sore after 38 rads and 6 chemo and I couldn't eat food that had acid and that is one thing I can do this year.Hope you have a bright day. God Bless Briget

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Briget, you are sooo right in saying that things DO get better even if we can't see it at the time we are going thru the toughest battles of our lives. See what you have to look forward to with your berries... I too would not have believed a year ago that I would come out the other side and be doing OK all things considered. One year ago tomorrow was just my last day of rads, and I never thought I would even be able to drink water again. And you have such a good attitude that has served you well. Keep it up and one day I hope you may give up the trach.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

They changed you to what I have had for close to a year. Currently, I have a Shiley 4 cuffless. It has a disposable inner cannula that I change every day. Sometimes I have to clear it of mucous every 10 minutes. I found out Wednesday when I was fitted for the Montgomery that it does not curve and go down my throat like the Shiley does. The Montgomery is more or less straight and it sort of fits flush to the inside of your windpipe. It doesn't need the strap around your neck to hold it from popping out. It has to be ordered so when it comes in and they install it in me, I'll let you know how it feels.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I wanna thank you and all that have come forward about there trachs...I've been trying to convey and no one would comment?...I to gave up as well but fought the trach...I still carry the angry what cancer took, i use to play a horn and like to sing, no more, I was left with partial vocal, that plugs in the night sometimes, you learn to keep water by your side...and clear it fast...you run out of air a little and have to slow down, you have to watch for any large size chunks of food, i use to be the first done at the table...last and might see you at breakfast...i try hard to overcome the reverting to the trach, I know some there was no choice, I border on 50/50..they let me make the choice, I hope one day they will develop a shunt or device to open or channels up....they want to add more, but not fix what radiation overcooked, and it was overcooked, thanks for stepping forward. like to hear more from you and anyone else to offer and positive help to ease our fights to live a normal life..Dennis TN...like to hear more from you Patrick or anyone..strandedintn@aol.com

Viilik70's picture
Viilik70
Posts: 56
Joined: May 2012

I've been trough radiation twice for nasopharangeal cancer and now have a trach. I urge all of you to ask your doctor for a Montgomery trach. You have no straps to tie and you just pop it in and out. Most comfortable one I've had. I'm trying to drink my feedings to get rid of the peg tube, but seem to get sick a lot with sinus infection type colds. I don't know if this is from all the radiation or just the lack of good swallowing. Just wondered if anyone else has similar problems. I'm hoping to get the peg tube and the trach out in two weeks, but hope taking the peg tube out doesn't come back to bite me. Thank you all for talking on this site because it helps us all and remember God has won the fight for us and will never leave us. Trust Him and put your faith in Him and he will reward us all with new bodies that will never get cancer or any kind of disease again! I love you God!!

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I don't remember suffering through so many sinus infections before radiation but I sure do have them now. I'm keeping my ENT in business. I don't even have to make an appointment anymore. I just walk in. I've tried Amoxicillin, Avelox, Vibramycin, Cephlex, Zthromax, Clindamycin, and I'm sure others whose names escape me right now. The only one that I can remember working a couple times was Ketoconazole (antifungal). Even that hasn't worked this time. I've had a constant infection since I had my jawbone replacement surgery last June. Currently, I'm trying Fluconazole, another antifungal. My ENT blames it on the radiation. He says it takes longer to get rid of it now because of that.

Just don't rush the trach removal, Viilik! They removed mine about five days after my surgery last year. After about two and a half months, the stoma was almost closed and I couldn't get rid of my mucous through it anymore. I ended up having to have the trach put back in under an emergency type situation. They did it while I was awake. Naturally they "numbed" the area (ha ha). Believe me, that didn't do much. Between the pain and the smell of burning flesh it was definitely an experience that I would not want to repeat!

My trach is STILL in and I have resigned myself to the fact that I will have it for the rest of my life. They are going to replace the one I have now with a Montgomery trach which is supposed to be more comfortable. Good luck.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Do me a favor...let me know how you do with your Montgomery please...My Email is strandedintn@aol.com.....in case I should ever and not willing need it...I am fighting to have one..the docs won't fix what they screwed up..TY Dennis

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Dennis, Still haven't heard anything about mine arriving yet. When I do, I'll let you know.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Thanks for all the input. I haven't been on here for awhile because my computer has been acting up. Hoping to get a new one in the next couple of months. I wish I could get that Montgomery Trach but I can't because of my oxygen I have to have. For now I'm content with my cuffles trach. I just got over Bronchitis and was given Cipro 500mg twice a day,it cleared it up. Everyone on here have a great day. God Bless Briget in WV

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi all,
I've now had my Montgomery in now for a week and two days. Dennis asked for an update so here it is. The Montgomery is much more comfortable than the Shiley. You don't have all the straps around your neck holding it in. The trach itself is very soft and flexible. You pull it out about once a week to clean it. You then lube it up a little and pop it back in. Brigit, I don't see why you couldn't use oxygen with the Montgomery. I would assume that you have a mask that fits over the Shiley and has a strap for around your neck. You could do the same thing with the Montgomery. If you are going to have the trach for any length of time, it is definitely worth looking into.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Dear George and everyone with trachs, I'm now pluging my trach off and getting oxygen by a .nasal cannula and I'm up to 10 hrs,this makes my 2nd week,I can't sleep with it I'm not there yet but I'm sure working on it. I'm going to look into the Montgmery one for sure.Thanks for everyones input. Everyone have a great week. God Bless Briget

patricke's picture
patricke
Posts: 442
Joined: Aug 2006

Hey bjw, I too am a one year Trachestomy survivor, and I also had a Larynjectomy at the same time. I had a tumor removed from the entrance of my trachea, thanks to the radiation treatment back in '00. Radiation, the gift that just keeps on giving. So far, so good, it's just another challenge to adjust to, and establish a new normal. Best wishes.

PATRICK

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

I've had a tracheotomy followed later by a laryngectomy. The airway between the lungs and the mouth is maintained after a tracheotomy Therefore, under the best conditions, the tube can be removed and normal breathing restored. My tracheotomy was performed as an urgent procedure and biopsies were obtained. When the biopsies proved that I had advanced laryngeal cancer and that my voice box had to be removed.

Therefore, I had a lumpectomy After that operation, there was no airway to my mouth. My mouth is only connected to my stomach. My lungs vent to a hole in my neck. Of course, I lost my natural voice.

After a laryngectomy, there are at least three methods by which voice can be restored. I've used all three. An electro larynx is a mechanical device that you hold up to your neck. It produces a robot-like sound. In esophageal speech, I swallow air and burp. The swallowed air does not reach the stomach but is captured in the esophagus. Finally, a voice prosthesis is available. It is a one-way valve surgically implanted between the trachea and esophagus. The operation is sometimes call TEP (Tracheal Esophageal Puncture).

There are pros and cons for each method. I will try to post these later.

If you have lost your voice box, have no way to speak, and would like to try esophageal speech try this.
Swallow,
Make the K sound.
Try to say either scotch, cake, or cup.

Swallowing and the k sound forces a little air into the esophagus. These three words are among the easiest for esophageal speech. You will almost certainly need a speech therapist to help you. But if you can make almost any sound, it might enlighten you about the possibilities.

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Hi bjw, my wife came across this discussion and I am so glad she did. I'm new to all this
and am grateful to find kindred spirits. My Trach was inserted after a biopsy for a lump on my larynx, the lump was interfering with my ability to breathe, turns out the lump is cancerous, I have a PET scan today to determine its severity and if it has spread. All this is very new to me and a little overwhelming, however I feel positive about the fight ahead and due to a loving wife and family have so much to live for, I am 59 years young with a lot left to do in this life. Will share my experiences if they are helpful.

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

Welcome to the group. We are all overwhelmed at the outset of this journey. Best to take things one step at a time, as you can deal with things that way. This discussion mostly took place awhile back. Some of the participants are regular contributors, and some are people who were only here for awhile. Feel free to post to any threads that you'd like to, and by all means start a thread of your own. Or even several:) That way, you will get the attention/answers you may need. Again, welcome to the board. Sorry you have to be here.

Pat

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Hi Pat, I don't mind being here, life has been pretty good to me. I originally came from Sydney , Australia and ended up marrying a Southern Belle from Alabama nearly 14 years ago, best thing I ever did. We moved from Alabama over a year ago to Panama City Beach FL where we own our own home and my wife works at a local hospital (RN). We are still having our honeymoon (never stopped) and will fight hard to have as many years together as possible.

Michael

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

A trach is a temporary procedure. A laryngectomy is the permanent removal of the vocal cords, and having the airway end in the hole (stoma) of the neck. Not that I care about what things are called. But using the correct term will help when doing searches.

I would suggest searching on WebWhispers, a web site devoted to laryngectomees. (I am not suggesting abandoning this site.) However, on webwhispers, you'll find a lot of specific information once the vocal cords are removed.

I am a laryngectomee, and I use all three methods to speak: esophageal speech, electro larynx, and TEP (prosthesis). They all have their pros and cons. Rick.

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Thank you Survivor and Golden for your time. So far my trach is temporary. Had a PET scan today and am about to embark on 6 weeks of Radiation therapy and Chemo. Although the cancer is fairly advanced I chose not to have the larynx removed just yet to see if the trach could be removed after treatment with the hole closed. The doc said he could only wait and see the outcome to see if that could be the case.

I will certainly take your advise Golden and chase down some of that specific information.

Came across someone very interesting today, a doctor in Huston Texas called Stanislaw Burzynski a biochemist who "discovered the genetic mechanism that can cure most human cancers", Antineoplastons are what Dr. Burzynski has developed to fight cancer. Apparently the FDA and he don't see eye to eye for some reason, I guess any new idea in the medical world would be a challenge to implement. Not wishing to get on a soap box here or cause any waves I just like to see all possibilities, perhaps others would like to examine Dr. Burzynski's work and treatment. I am certainly going to investigate further.

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