#55555 10-03-2004 04:55 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Guys
Although Pete is doing really well, he is still having problems chewing his food....it just hurts like hell. I am not sure if it is TMJ or Trismus. What is the best way to treat this ? His Doctors do not seem to pay much attention to it...He has been out of treatment for 14 months.
Can anyone help?
Thanks
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | |
#55556 10-03-2004 12:56 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Marica, sorry to hear Pete is still having problems with eating. By 14 months, I should think he would have improved a great deal. If he is still feeling about the same as he did just after treatment, I would get the attention of a doctor and get to the bottom of his discomfort. He should be feeling much better. We all react differently, but it seems to me that he should be able to get it treated so there is little to no pain. Will pray for you both.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
| | |
#55557 10-03-2004 04:38 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Marica,
Can you have Pete describe the pain? I can not tell from the post if it is hurting while chewing and if it is teeth or TMJ pain. There are lots of options for either one. Either way it is more of a dental issue and there are specialists that can help. My wife works for one now and knows of someone at the University of Florida that is exceptional if that is close to you. I can email you the details if it is convenient. Otherwise, I believe she could help find someone in your area. (My wife works for the North Texas Center for Head, Face and TMJ Pain.)
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
#55558 10-04-2004 04:25 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Thanks for answering Guys
Kirk you are right he does need to, take the time! and get this sorted out.
He is sitting here explaining to me ...he has been told he has both trismus and TMJ. On opening his mouth his pain is, I wish I could draw it !...in the joint between skull and jaw? going down towards chin. When chewing the pain is the same but more intense, shooting upward to head and as he describes it,excruciating. He travels a lot in his job some times in Florida. I would love to have the names Ed both in Florida and here in the Atlanta area . I love the fact I can now "see" your faces as I type this message.
Take care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | |
#55559 10-05-2004 03:57 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Marica,
I had treatment to widen my mouth opening. After treatment it was only 20mm which didn't allow a fork full of food in without hitting my teeth. I had no pain in opening or chewing. The therapist would manually stretch my muscles on the side of the surgery and peck flap reconstruction. That hurt because she was stretching the muscle. They were 30 minute appointments and helped alot. I am up to 30mm which allows me to eat, even if it is rather slow going.
I also used a therybyte device three times a day to stretch my mouth opening. It was covered by insurance. They are around $500.00 for one. It hurt to set it higher but kind of like the old saying "no pain, no gain. Again I had no pain like you describe. I would get after the doctor to respond if the pain is as bad as you describe.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
| | |
#55560 10-05-2004 05:49 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Hey Danny, I was wondering about how much that therabite cost. I am looking into one right now. Do you still have yours??? Or do you have to turn them in? Please let me know? Miss Vicki | | |
#55561 10-06-2004 02:28 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Miss Vicki, I still have mine. Awhile back Rosie was offering one to anyone who wanted it. I don't know if she still has it.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
| | |
#55562 10-06-2004 05:40 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Thanks Danny...I will get on to that .
Cheers
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | |
#55563 10-06-2004 06:53 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Danny Boy and Miss Vicki, I sent Heather's Therabyte to Dinah a few months ago. Don't know what her husband will do with it. Heather's insurance covered hers, but they had to be convinced it was for a cancer related problem. They wouldn't pay if it was just deemed a TMJ problem. I think if you go to the main page of OCF, (NOT the Forum main page), and put Therabyte in the search field, there is a link to the webpage of the company that manufactures it, if anyone wants more information. Rainbows & hugs,  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | |
#55564 10-06-2004 10:25 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Rosie, this is Vicki do you still have your therabite??? If you do please contact me. If I cannot get one from here, I will have to get one thru my insurance. Once I am done with it I will send it to someone who needs it as well.. Hey we have to work together and stick together,,,,Esp. now that most of us are living or trying to live off our social security checks. We were pulled out so young that we have been cheated on more ways than one. Always Miss Vicki | | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
