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Swallowing

backachedp
Posts: 124
Joined: Oct 2009

Mhusband is 3 years out and still cannot swallow.  He has had tests done and has had Pheumonia for a month now and it is due to As[irating everything he swallows.  The Dr said Feeding Tube, Husband say's NO...I told him he NOT to try and drink, or blend soup or anything when I am at work.  The Dr said it is from Radiation the gift that keeps giving...:(  He lost his swallow early in treatment and when he had his Port and Feeding Tube put in he ended up in ICU for 4 day's that was Oct 2009..supposed to be same day Surgery.  His throat was so swollen they should not have intibabted him to begin with...that's another story...has this happened to anyone else??  He has no teeth still, he continues to have Bone grow out of his Gum's and back and forth to the Dentist.  He has also been diagnosed with COPD and Ashma he seemed to be doing ok for a while trying to work p/t but he has not been able to work for a while now...he was at work and called and could not breathe called me and scarred me half to death...his phone went dead and I could not get hold of anyone at his job because it was so early in the morning.  They let him drive home when he should have been riding in an Ambulance.  Wondering of anyone has had this happen and if so what did you do??  The Feeding Tube he did have in the beggining was very costly for the rx food they prescribed and we have been appealing this 13 thousand dollar bill for almost 3 years now...how can BCBS of TX deny something so nessasary to sustain LIFE?  I don't know what to do or who to turn to for help with this.  His Esopogus, Tonsils, Tongue, everything has been litterally destroyed by the Rads.  Have Appt for the 17th of this month but worry abput waiting so long...any suggestions would be much appreciated.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi my name is Rachel, I am a 12yr h/n cancer survivour. I didn't lose my ability to swallow originally. I resented the tube so much refused to use till towrds end of treatment I at least put gatoraide in it, and I forced mmyself to eat(lots of Lipton Chicken soup), but now 12years later I just spent Christmas in hospital with aspirating phenumonia and had to get peg tube and for the moment can not eat or drink orally. I didn't want it had very bad experience last time, but I was told if I did not get it I would continue to get phenumonia and it will eventally kill me. The choice became very clear then and tube it was. Its been about 60 days and its getting little easier, I am maintaining weight(after about 15lbs weight loss unintenially) which is at least a very healthy weight. My advice TUBE, speech therapy and pray that God brings healing a swallow returns for your husband, me, and all the survivours fighting for it! God Bless you and your Husband!
Rachel

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

It sounds like your husband should be on SS Disability.  Once he is approved for that, he is entitled to Medicare.  As long as the medical formula is his only nutrition (meaning he CAN'T swallow anything by mouth), then Medicare will cover 80%.  I have BCBS Medi-gap which covers the other 20%.  I don't know what I would do without Medicare.  I certainly wouldn't be able to sustain myself so I know where you are coming from in that regard.  He should apply for disability right away.

The bone in the gum sounds like radionecrosis of the mandible.  That is why I am in the predicament I'm in.  Before he thinks about mandible replacement, ask his doctor to debride the bone first.  Instead of taking out part of the mandible and replacing it with other bone, they shave the dead part down and see if the gum will heal over.

backachedp
Posts: 124
Joined: Oct 2009

Thank you for your input. We did go to social Security last Thursday and because of Husbands diagnosis he will get SSD and no waiting period because he was on it before he went back to work p/t but he was not able to work much at all.  He would work a few hours and have to leave or when the Ashma and COPD and Phenmoia started they sent him home we were quite relieved that he can get Benefits.  I will have to look into radionecrosis they kept trying to save his teeth and ended upoosing them all...then numerous times the bone starts growing out of his gums again...but at this point I am most worried about the swallowing and getting him to agree to a Feeding Tube.  I have the new Boost Drinks that used to be the Carnation VHC with 540 calories per little box he is just not drinking them..i do not know how he is not passing out today he did have some Cocoa Wheats took him an hour to eat it slowly with choughing time but he got some down....he used to be able to eat Oatmeal very watered down with half and half (more calories) and he could do some mashed potatoes with a ton of gravy but no more...I feel guilty being able to eat...sometimes I will eat before I get home from work, but he loves the smell of food and watching the Food Network to me it seems like torture....he never did get his taste buds back eighter..maybe someday he will be somewhat normal again....we can hope and pray but he is alive and that is most important.  I see you have been on this board since June 2009 is that when you were diagnosed?  Hubby was diagnosed Sept 29 2009.  Seems like so long ago yet sometimes it seems like yesterday....wishing you the best and thanks for responding may your issues be resloved soon and get better....thank you.

backachedp
Posts: 124
Joined: Oct 2009

Thank you for your advice and experience.  I am sure the Dr's will tell my Husband just what you were told Tube or it will kill him eventualy...The Swallow Dr told me to take a CPR Class and showed me what to do if he is choking but if he turns blue call 911 well I knew that one...he seems to think she is blowing it out of porportion and he has always been stubborn and has never been completly honest with the Dr's about Pain, Symptoms, and he would not let me go with him anymore to his Appt's...he has changed and I watched the screen in the other room everything just straight down no slowing of anything it just goes into his Lungs.  She told him to tip his chin to his chest when he is trying to swallow anything and it is a tiny bit less choking but not much...we shall see what they tell us Tuesday.  I am sorry to hear how you after 12 years had this happen to you.  A Peg Tube is that the one that goes in the Stomache?  That is what he had and he says to his close friends he was shot as the scar looks like a Bullet Hole...I always just knew it as a Feeding Tube and how it was a pain and he always complained about taping it and how it bothered him, but he has to get nutrition!  I hope and pray things get better for you...the Dr also said water coffee anything like that should have Thick it in it.  He won't do the Thick it eighter so I am hoping they will tell him he HAS to do what he has to do and stop being stubborn.  I know he does not want to die he has had a rough time thru it all but he has never been one to complain or feel sorry for himself sometimes I wish he would just let it out.  He seemed more upset after that last Appt than he did when he was Diagnosed.  I just want my Husband healthy again and be able to eat when you can't eat or drink w/o choking well it breaks my heart....Thank you for your kind words of support and may you be healed and able to swallow again soon...hopfully sooner than later.  Keep me/us posted...

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

In 2009, I was having alot of problems.  That's when I started searching for answers.  It sounds to me like your husband has an esophageal stricture (fancy way of saying that the tube that his food goes down has sorta closed off).  Has he ever been dilated?  It's a very simple procedure where they put you to sleep and go down your throat with a device to stretch it back open.  It's usually done by a gastroenterologist but some cancer ENT's do it also.  

As much as he doesn't want it, he's got to get that feeding tube put back in before they have to hospitalize him.  That happened to me back in 2004.  I resisted having one put in when I started chemo and rads.  It wasn't long before I HAD to have one put in because of lack of nutrition and hydration.  The day after I had it put in, I ended up hospitalized for a week because I was so rundown.  

When you see the term feeding tube or PEG or G tube, they are pretty much the same thing.  They all go into the stomach.  A J peg is slightly different in that it is inserted into the jejunem which is part of the small intestine.  They are all meant to save hardheaded individuals like your husband and me from their own stubbornness.  I've had my second one since June of 2011 due to the operation I had for my mandible.  I'm hoping one day that my throat will free itself from the swelling and fibrosis so that the dilations they do will keep my throat open.  I'm being dilated again this coming Tuesday.  I'm also going through painful chiropractic procedures to help my throat.  LOL, the things we go through when we become addicted to eating and the Food Network.  Right now I'm watching reruns of the Worst Cooks in America.  At least with that program we're glad we can't eat what's on the screen!

backachedp
Posts: 124
Joined: Oct 2009

Sounds like you have had enough troubles too...thank you for some input that we can discuss with the Dr's Tuesday..I will be thinking of you and hope one day soon you will be able to swallow normally or as close to it as possible.  It just seems so unfair to NOT be able to eat the Treatment is hard enough on some and then it continues...never thought about Chiropratic that is also something to look into.  My Husband weighs a mire 119 lbs but was 145/150 before he got "C" so he was slim to begin with.  He has no teeth and he is 57 and his face is sunken in and wrinkled but that does not matter to me as he is and always will be my Handsome Hubby.  I do worry about him getting so run down he will end up in the Hospital...I am surprised when he got the Phemonia they did a Chest Xray and sent him home w/o anything 3 days later he was given a call after we kept calling and they rx'ed him Antibiotics and a Chough Syrup with Codine.  He has been on 2 courses of the Z Pack Antibiotics and they would not refill the Chough Syrup.  I beleieve it was a week after we asked for a refill the Pharmacy called with the generic message saying your Prescritions are ready I assumed they were for me as I am on several meds for chronic back pain so I called and said our Son would be picking up the rx's and I would pay with my Debit Card...how much they said 3.75 my Meds are alot more than that so I said what prescription do you have and for whom?  He said my Husbands name...I asked what is it for?  it was Chough Syrup....I much appreciate your input and advise as now I can talk to the Dr's, but from what I got at the swallow Dr Appt she seemed to think Dialation would not help but it is certaonly well worth a shot she could be wrong..nobody is always right and everyones body is different.  I wish you much luck on Tuesday.  Do you need a Driver when they Dialate you since they put you to sleep?  My Husband has not been Dialated ever.  He has his regular ENT Appt's where they Scope him and the Dr says it looks good....well it is NOT good.  Will let you know how it goes Tuesday and what they say.  I have also thought about Accupuntcure have you ever tried that?  I wish you much luck Tuesday and if you have a minute let me know how your Appointment goes Tuesday.

Thanks for your help and advise,Kiss

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

to take you home.  It's hard to believe that his doc hasn't suggested dilation with the inability to swallow that he has.  His throat will be a little sore for from 1 to 4 days.  I've never tried acupuncture.  I'm not suggesting there is anything bad with eastern medicine but, in my case, I don't think it would work.  There's not a whole lot of doubt in my mind that the fibrosis from the radiation and the lymphedema from the mandible operation is hindering the ability of the dilations to keep my throat open.  My cancer surgical ENT who has been doing the dilations recently said that this last time, he didn't run into as much resistance as he thought there would be.  With this news, I advanced my theory that the chiro treatments were working to break up the fibrosis.  Before I started the treatments, I could barely turn my head.  My chiropractor said I have regained 20 degrees to the right and 30 to the left in range of motion in the neck.  LOL, with my luck though, I can envision getting full range of motion back and then dying the next day.

backachedp
Posts: 124
Joined: Oct 2009

How did your Dialation go on Tuesday?  Our Appt was well not so good the ENT and Swallow Dr which is what I call her who is a Speech Thearapist showed the Video to ENT and Husband...she said it is one of the worst cases she has seen.  Diation will do nothing for him.  He is seeing her again thiis Wednesday as he will continue to asperate and he does not realise how serious this is, as she explained nothing is working in his throat esphogus and when ENT put his finger down his throat they both siad he should have gaggged and he did get a scooe done and ENT siad looks good considering how large his Tumor was.  He was more upset about the Dr's saying he needs to see a Neuro Dr for side effects from the 5FU I believe it was that he had with the Cisplatin which is causing him much pain in his Elbows and hands they hurt and go to sleep and get numb....he was given some exercises to do and keep doing the chin down to chest when drinking or trying to swallow.  I worry as they say this aspirating will continue and he will keep getting the Phemonia which is very serious.  We did talk to them about our Insurance not paying for the Feeding tube food so they are writing another letter to the Insurance Company I think he is also worried we will get stuck with another 1300 Thousand dollar bill for the rx food and thus he does not want the Tube for that reason and for other reasons money means nothing if you can't live.  He has several appt's this week and next so hopefully as we keep on top of this they will come up with a plan.  I imagine the Tube will be in the plan.  I will insist he get it.  Today is our Anniversary 31 years.  I said happy Anniversary this morning who would have thunk I at 51 and he at 57 would be broken at such young ages....and both kids have left the nest....better days ahead for all.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hang in there, he'll come around. The speech pathologist that did my study(that xray video u watched) also said to my mom that it was one of the worset she's seen, nothing raises up the esphigus and epiglidus don't move, I too was not canidate for dialation due to no narrowing of esphagious. After couple days with at home speech therapist(different one) she was very pleased with how quickly I was responding with exercises, I am now waiting to do new outpatient therapy with new speech therapist and hopefully get new study that will show improvement.

Don't let anyone take your positive thinking away. Sometimes you feel in this disease like u have no control, and your husband may feel like that and that and finances are why he is refusing, let him see your pain and realize he is not just hurting himself but also hurting you.

I refused at first, I thought I could leave with pick line and feed that way(u can't), and when I realized then I knew the people I would hurt, including myself, so it was worth the risk that it tormented me again. It did for a bit but better now, I think more so because I thought of it as a life line this time rather then something I didn't want.

Just remind him how you felt on your anniversary, and tell him you want to start living the best years of your life yet to come!

I am praying for you to guide him and him to open mind and listen, God be with you!

Rachel

backachedp
Posts: 124
Joined: Oct 2009

I think he will go with the plan if the Dr says so again.  Sounds like you have similar issues but you had a bit of a break...wonder why it took so long for you to develope problems.  I hope and pray the ecersise's work for both of you,  He has an Appt Wednesday with the Swalloww Dr as I call her and he is having his Lungs looked at again at the Lung Center so he is keeping on top of it.  I just worry so everytime he swallows.  may things get better for you.  I am glad you joined the board here.  You have alot to contribute everyone does esp for us who are not the one who has or had Cancer gives us guidence for what is to come and diffrent things that crop up I so appreciate everyone who has been here and given me advice and support.  Many many good folks here. 

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

I didn't really expect to.  Right now I just want to keep the stricture from becoming permanently closed.  My ENT said he doesn't seem to be getting as much resistance in my throat so hopefully that means the chiro treatments I've been doing to break up the neck fibrosis is working.  When I had my swallow study done in June of 2011 (before mandible surgery), I was able to eat with the help of a swig of milk.  The swallow study done six months later showed no movement of the hyoid bone in my throat to start the swallow mechanism.  That is the problem I am trying to correct with these treatments.  Is your husband's neck very stiff and hard?  If it is, that is the fibrosis that I am trying to break up with exercises and the chiropractic treatments.  I should know in about two months whether to just give up.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

I will definitely keep you posted and you as well. The last thing I wanted was a feeding,Peg, tube..the first one was horrible! This one didn't start out as bad but the piece that keeps it in place on your stomach has raised disks all around it and its too high just like the last one so it was difficult to wear a bra at first, but that has cleared up and its merely irritating. Just like the beast, I Belived I would beat it, I will beat this too. I was so low on vitamins, fluids and general nutrition I spent most of the 8 days in the hospital just trying to fix that, that is why it is so important. Cancer was always my biggest fear and having to live it was a nightmare, worse was the quality of mental life I had afterwards between Dr. Appts. I would shut down completely, I too hid things from the doctor, during radiation I could be throwing up right before he walked in, that door knob would turn I stop sit up straight smile and say I am fine, my Mom was always there and said know she isn't! This time apparently I too refused the tube in fear of the same expeiance, but my Dad cried and my mom and I thought about leaving my daughter without a mom, there was no choice, tube it is and the fight to train to swallow again began. He'll stop being stubborn, he'll give in, I Believe it!

God Bless you both! Let me know:-)

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