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cant open mouth

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

Hi yep Im new here,Getting frusterated cant seem to get an answer from my doctors about how much Im going to be able to open my mouth.Had surgery march 15 2013 Had Squamous cancer in my cheek ,also had lymph glands removed.tonsels.two teeth and a flap put in my mouth made from my arm o ya and a skin graft from my leg to put on my arm.Starting 30 rounds of radiation on june 5. can only open mouth enough to barely get my figer between my teeth afraid it will get worst with radiation.Has anyone encoutered this problem and whith what outcome any feedback would be appreciated.

Thank you

John

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

 Greg,

Welcome to the H&N forum, where frustration is shared by all of us (to a degree).  Personally, I did not have opening mouth problems to the extent you have described. I am surprised you were not given some exercises or physical therapy.  I did have tongue and neck surgery, but my complications were minor and short term.

I have read about your condition, so let’s hang tight and hope someone chimes in.

Matt

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

Normally speech pathologists can help with exercises to help open the mouth.  There are also devices that they can recommend to help facilitate increasing the range of motion of the jaw to help open the mouth wider. 

You might also want to ask your dentist for advise as they probably deal with people that have difficulty opening their mouths.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

 

I have the same problem; I can only get my mouth open 21mm. The doctor did not think I was going to survive so he did not see any reason to get me some help with any thing. Here I am 8½ years latter and it is hell to get anything done to my mouth. June 3 I will be in surgery to get tooth number 32 pulled, surgery not a dentist office.

 

OK so here is what you need to start doing. Ask your doctor to proscribe Physical Therapy for you after the radiation treatment is finish. Also ask your doctor and see if he will also proscribe a TheraBite or something like it and start using it as soon as you feel like you can; with your doctor permission. Never do anything with out asking your On-cal man (doctor) first. 

 

Oh and most important of all pray about it, if you need any help my e-mail is on my About Me page.

 

God Bless

Hondo

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

Thank you Hondo for getting back to me, and most of all thanks for proving your doctors wrong good to still have you here.I am thankfull that I am so stubborn I wont let anybody tell me I cant do it or it cant be done.

in my prayers

John

Noellesmom
Posts: 1317
Joined: Aug 2010

I'm the same way - tell me it can't be done and then get out of my way while I do it, John.

This time recognize it's not going to be quick, though, if you want it done right.

You don't want to damage what has been done to save your life so do this the right way.  Go back to your doctor and tell him/her you want help with this and demand he provide it.

Speech therapist, as suggested before, is going to help but I believe there are other things you can do.

March 2013 is not very long ago - do they say you are competely healed from the surgery?

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

The doctors and anybody that have seen me are amazed how well I am healing,they were very happy at the way the flap took in my mouth. I was talking two days out of surgery even with the trake,they could not believe it. even at the hospital the second day I was up and walking the halls even with all the tubes and stuff they attached to me. At one point they told me I had to slow down.I guess I need to realize the extent of my surgery's the first one was four hrs the second was twelve hrs.I feel like MR.Potato head parts of me put all over the place.LOL Sorry for rambiling on it's just different talking to people that know how you feel mentaly it is tough.I start therapy on the 5th of June thats when I start 6 weeks of radiation. I see you joined in 2010 Im glad to see you are doing good.

Thank you for your ear

John

hlrowe
Posts: 23
Joined: Oct 2012

Have the docs order up sessions with a certified speech pathologist.

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

Yes they have start on June 5th.

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

Yes they have start on June 5th.

TracyLynn72's picture
TracyLynn72
Posts: 747
Joined: May 2013

I am brand new here and also had surgery in March.  March 6th they removed a section of my lower left jaw which contained a 4cm mucoepidermoid carcinoma tumor.  A week later the feeding tube, drainage tubes and IV's were all removed and I was going home.  Well, my margins weren't clear and they had to go back in March 15th to remove my left "hinge" as well.  My final pathology report was clear but they suggested radiation as a precaution.  I'm halfway done with that now.  I can't open my mouth as far as they would like either, but they gave me a list of exercises to do each day and I painfully do them.  Now, with radiation, I have the dreaded mouth sores so the exercises aren't as productive.  There are exercises that help tremendously, so ask for them.  It's basically the arthritis foundation neck and mouth exercises.  Best of luck with the rest of your treatments! 

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

 

Glad to have you here on CSN welcome to the family. Keep doing the exercises as much as you can but when it gets too painful stop and ease up. I use the jaw dynasplint system that I believe is the best of all but cost the most. But the good thing about it I am able to set the tension so there is no pain. I am at my maximum opening at 21mm and that is a big problem for dentist because they can’t get in to do anything to my teeth. I don’t want anyone to go through the hell I been through; if I would have started with mouth exercises as soon as my radiation was finish I would not be in this situation. So keep up the good work and keep stretching when you can, even if it is just a little it will help. Hope you keep posting.

 

Still in Gods workshop

Hondo

TracyLynn72's picture
TracyLynn72
Posts: 747
Joined: May 2013

Thank you for the welcome!  I'm so grateful that I found this site.  I'm still trying to stretch, but now that my lip is swelling and I have these awful mouth sores...it's more difficult for sure.  I'll keep at it as long as I can, and then start back once the rest heals.  

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

Hi John,

Sorry to hear about your mouth. As soon as my husband started treatment for his tonsilar cancer (with one positive lymph node), we began what I call "physical therapy" on his jaw. He uses a small plastic bottle, insertis it into his mouth for about 5 seconds, then removes it and repeats this about 5 - 10 times per session. Maybe you can start with something small, like a thick pen, then slowly graduate to something larger.  I picture the jaw like a rubberband, tightening up, once you start to stretch it loosens up.

I hope this helps. Also, at the top of the board topics is something called "super thread", click on that link. That's where I found info. about something called L-glutamine (which in my opinion has been invaluable) and jow/mouth exercises.

I pray your journey doesn't steal your joy.

God Bless.

Jude

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

 

You are so right about the jaw being like a rubberband the more you stretch it the bigger it will get. Radiation damages the muscles in the jaw so the soon you get then stretched back the better.

 

In my case I waited way too long almost 4 years after my treatment and by that time the damage to the muscles was done. But I keep working at it because I don’t believe in the impossible. I live with a PEG tube for live I am told because I can’t swallow, for a lot of people this is a problem but to me it is just another part of life. When my wife and I go out to eat we order our food, when it comes I put it all in my little blender with some water and put it down my tube. Sometimes our bodies are not the same after treatment but that does not mean we stop living. There is always a way and by the grace of God we will find it and enjoy living once again.

 

 

Still in Gods workshop

Hondo

 

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