HELP, this is 4 weeks post surgery. My son is doing very well except for the extreme saliva gland swelling which is very painful and which has limited what he can eat. He is back in the hospital, it was drained once by needle at the Drs. office and when that only worked for a day they admitted him and put in a drain. The drain was not in the right position, it was drained again by needle, did an ultrasound and moved the drain and it is still not working. Severe swelling after he eats to the point that he says it feels like it is dislocating his jaw. The Drs. either don't know what they are doing or have never dealt with this situation before. He will be having radiation and chemo when he heals, we are wondering if one shot of radiation on the saliva gland will stop it working??? Has anyone had similar experiences and can offer some advice.

Julia,
the saliva glands are hit pretty hard during radiation. If I recall correctly it was somewhere around the end of the first week where I started to notice and around the third week where I could complain about dry mouth.

Every case is extremely different due to how they radiate the field, especially considering the amount of surgery he has already had to the location.

On the flip side, I am nearly 1.5 years out and I only get dry mouth at night now. I keep a glass of water by the bed and it is pretty manageable.

Even though my saliva is present it is considerably different(much thinner and slower flow) and I hate eating without having a glass of milk to help create the right viscosity.

Thank you Brian, glad you are doing so well. I was hoping to hear that the radiation would stop the saliva glands on the one side for his sake, we will have to wait and see.

well saliva glands to get nuked quite nicely during treatment but they also tend to recover... why don't they just remove the darn thing if it is not needed? too bad he's suffering - the rads won't be easy either but he will get through it. Try to stay on top of the pain. I'm not a big one for pain meds... but if they are needed then he should take it when he begins to feel it coming on... not when it is really hurting. If nothing helps he needs a consult to find something that does.

Hugs to you.

Hi Cheryl: I agree, the saliva gland should just be removed, I had read somewhere else that it will recover later, makes me wonder if the surgeon knows what he is doing. Son had an appt. with the dental surgeon at the hospital today which is part of the routine before radiation and chemo treatments. He is very mad and upset, can't open his mouth properly and thought it was part of healing process, the dentist told him they stitched it up too tightly in his mouth, he will never be able open any wider. Can I mention the surgeon's name so others will go to someone else???? I told my son to insist on an appt. with the surgeon as well as the Dr. who said he was a pioneer in this type of oral cancer surgery and who assisted. Most likely he won't get to talk to anyone until after the long weekend.

that's too bad. They can redo the surgery to loosen things up at a later date and time - I don't believe in nevers - My surgeon used a fairly large flap on my tongue and has offered to reduce the size if i want. It fits okay it's not super huge, so I'm fine for now. He calls it debulking surgery. So chances are your son's incision can be adjusted later ideally take care of the cancer first then when he's healed and cancer free work on the mechanics of returning his life to a normal state. I know someone else who had the sutured area loosened. (apparently they'd stitched her whole tongue to the floor of her mouth!)

It does sound to me a little like your dr is not on top of his game. go through with rads and chemo and then later on when he goes to have the surgery adjusted - perhaps push for different surgeon. Though I would make a point of telling him what is wrong with your son's function now.

hope this helps. He likely needs you to advocate for him.

hugs.