Nerve damage effecting tongue, muscle, swallowing.

@ewilde My husband had the tonsil with the tumor removed but cancer spread to adjacent lymph nodes. He's starting chemo radiation next week. Dr wants him to see someone about speech and swallowing. Maybe it's because he's going in to a clinical trial? He goes to msk.

@lizzyj58 - Yes, I have done the barium swallow test a few times. It is a relatively straightforward test.

@zenren14
hear you - and even with soups, it's difficult to swallow because when there are others at table and there is the fear or anticipation that it may not go down well - and means choking or coughing up -- thus I prefer to eat or have meals at home (I live alone).

@cskippy
Hey Skippy, Wow you've got a lot going on, as a cancer patient I think we all do and share an experience or better said a journey. Skip I would Like to ask you if you did get to go thru your Electrical Stimulation Acupuncture therapy and to know if it helped you in anyway? I might have this as an option to assist with my pain but I don't know. If so would you recommend? would like to hear from you and hope things are coming along. Thank You.Stephin001

I am 15 years cancer free of salivary gland cancer. I underwent surgery to remove my parotid gland and neck dissection. I then had Proton Therapy radiation, but no chemo. After radiation my mouth would not heal. I tried acupuncture. Did not help. I went through hyperbaric chamber therapy and it did help a lot, but not completely. I have lost 5 teeth and 3 more are in trouble. I have some sores in my mouth and one major one on my tongue. There is concern that my radiation damaged tongue will become cancerous. I have trouble swallowing as food gets stuck in the back of my throat and no amount of drinking a liquid will dislodge the food. I have to hack it up like a furball. One day I may not be successful. I had testing for this but no real constructive directions on how to alleviate this other than chew longer. My speech is affected because of the loss of teeth and sore tongue as well as the inability to fully extend my tongue. I also experienced on 4 occasions the loss of control of my tongue so I sounded like I was experiencing a stroke. I was not. All of this is attributed to radiation damage. It is an ongoing adventure with no idea of what is next instore. There is always necrosis of the jaw as a possibility. Very depressing.

Hi my name is Alicia I'm 47 I recently had a CT scan of my neck because I had a bad heartburn I couldn't get rid of I was told there was a mass on my tongue down my throat and it was cancer. 3 weeks passed since I was told that I'm still waiting to see an ent doctor because whete I live everywhere is booked until March I've been back and forth to the hospital but they don't do anything and I'm waiting for an mri as well. In the meantime I've had to take weeks off work unpaid because since I can't swollow food I get sick at work or choke I'm scared I really do have cancer on my tongue I can move my tongue I can't swallow food other than baby food or mashed potatoes.

Hi my name is Alicia I'm 47 I recently had a CT scan of my neck because I had a bad heartburn I couldn't get rid of I was told there was a mass on my tongue down my throat and it was cancer. 3 weeks passed since I was told that I'm still waiting to see an ent doctor because whete I live everywhere is booked until March I've been back and forth to the hospital but they don't do anything and I'm waiting for an mri as well. In the meantime I've had to take weeks off work unpaid because since I can't swollow food I get sick at work or choke I'm scared I really do have cancer on my tongue I can move my tongue I can't swallow food other than baby food or mashed potatoes.

@alicia17frank I’m truly sorry you’re in this situation and further sorry that you can’t get into an ENT.
I went miss diagnosed twice by former primary care physician and ENT for nearly a year.
During my 6 month dental cleaning and check up my dentist found me to have tongue and throat cancer just 2 days after my 2nd miss diagnosis!!
My dentist contacted the ENT and told him to move quickly on my diagnosis and I got into the ENT a couple days later and yes Stage IV cancer!
I hade severe ear pain, difficulty swallowing food, cravings for sweets ad taking 4 exederine for migraine every 4 hours to ease the ear pain.
If you have a dentist may they can help expedite your ENT visit. Time is of the essence.
You have to have a full mouth exam and if any teeth in the radiation zone are questionable they need to be extracted and heal for 21 days prior to treatment.
As for work, I met my oncology team quickly and was ordered to file for disability at the age of 54 because they said I would never return to work.
I wish you the best and keep us updated. If you need a shoulder you can pm me any time
Jody

@alicia17frank You don’t need an ENT, you need an Oncologist. Waiting until March for an ENT to tell you that isn’t a good choice. You have something that is killing you and waiting only makes it worse. With cancer, nothing else matters because this is life or death. You need to take charge and be proactive. Tell your primary doctor to get this ball rolling, now! If they can’t address your situation, go somewhere else.
This is all my opinion however it is based on experience. If you say a year from now you should have gotten help sooner and now you are in a real bad fight, you will make me cry, and I don’t like to cry.
P. S. Welcome to our group. I hope we can help from a patient’s viewpoint