Swallowing

rachel12yrsuv said:

Hi my name is Rachel, I am a

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

Hi Backachedp

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 said:

Rachel

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...

I will definitely keep you
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:-)

backachedp said:

George

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.

Hang in there, he'll come
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 said:

George

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.

Still can't swallow but

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.