Mellay,
did your doctor send you for any scans MRI/CT after the surgery? My doctor did a biopsy of the margins and it was only a 3 point. But my tumour was not big 3x2.2x1.5cm. He also did not prescribe radiation therapy because my tumour was low/intermediate; margins indicates complete removal and I'm still young (30) so no radiation to prevent onset of sarcoma in 20-30yrs time.

No, I did not have any scans after surgery. I had 2 surgeries though. They removed the tumor on the first surgery but the pathology report said that the tumor was "very close to the deep excision line" so a second surgery was needed. On the second surgery, they took 7 frozen samples that all came back negative and then did a neck dissection and removed 30 lymph nodes that also came back negative. So, the cancer was gone after the first surgery. My tumor was 1.1x1x1cm.
Pretty small.
I am also young, 29, so my doctors also felt like I should not do radiation. If it had been high grade, they would have done the radiation.
I am six weeks out from my second surgery. I also had trouble brushing my teeth or getting anything other than a straw in my mouth. It will get better. It just takes a while.

Dear Huihien & Mellay,

Attached are photos of a therybyte device used for stretching your mouth opening. I am using it about three or four times a day. I was original only able to open my mouth 20mm and am now up to 28mm. A big difference when your trying to put a fork full of food in.
My ENT wrote a script for one and my insurance covered it. They are around $500.00.

I can't figure out how to get the photos from the a-disc to this posting? I will send them to your email.

Best Wishes, Danny Boy

Mellay, Daniel,
Thanks for the information. I am opening my mouth by first letting head fall back and using gravity to help open my mouth gradually. After about 2 weeks, I think it works better with opening and shutting action. Otherwise the throat tends to get dry and feel a bit sore. Also, I am gauging progress by the number of fingers I can stick in my mouth to measure the height of the opening. My pre-ops height was 3 fingers (index to middle finger). I am now 2 fingers wide (abt 28mm too!).
I bought a toothbrush for 2 yr olds which has got shorter bristles.

You all are so brave to have undergone so much surgery. God bless you all and may you get well soon.

Hi, I am a new member. My mother was recently diagnosed with mucoepidermoid carcinoma of the salivary gland. She has never smoked or drank. She had neck dissection surgery and is currently about 8 days post-surgery. She has lost the feeling on one side of her tongue due to nerve involvement, and this loss is permanent. Has anyone else experienced this? She is having some speech difficulty and can't eat anything except soft foods. Any suggestions?
Thanks!
Marie's daughter

I am about 7 weeks out from surgery and I still do not have any feeling or taste on the right side of my tounge. The doctor said that it may or may not come back. It takes a while to get used to but as soon as your mom's mouth heals she should be able to eat normal foods again. It took me about 3 weeks.

Mellay, Thank you so much for your quick response! It was very encouraging to hear that your menu broadened after 3 weeks. I'm looking for any encouraging info. I can share with my mom as she is somewhat discouraged right now. She will get her pathology report from surgery back Monday, so I think we're all apprehensive about that. Her mucoepidermoid was high grade when they first found it, and the surgeon said she would almost definitely need radiation to take care of any microscopic cancer cells that may be remaining. She was very encouraged to hear that I found someone with a similar cancer who was a little further along in the process but doing well.
One other question, did you have any facial or shoulder numbness following surgery, and if so, did it improve? Also, did you need any speech therapy due to the tongue difficulty? She is supposed to meet with a speech therapist on Tues. Thank you so much for sharing!
Marie's daughter

Yes, I did have numbness, and still do. The side of my face, my shoulder, my chest, and my back were all numb following the surgery. It is slowly getting better. I am now only numb on the side of my face and right around the incision. I had a lot of trouble with not being able to use my shoulder. I had to do lots of exercises. I still dont have full range of motion. Also, my face was very, very swollen.
I did not have to go to a speech therapist.
Good luck with the pathology report. The hardest part is waiting for your results.