I read somewhere that after a neck dissection - there can be permanent swelling and hardening of the soft tissues of the neck, which among other things - can restrict movement. John's "puffiness" in the face area has seemed to gone down to some degree....but there is a most definite hardened feeling under the chin and throat area. I don't mean the skin feels rough or anything on the surface, but more like a very hard feeling deep in the tissues of the neck. Will this also go away with time - or is this a potential permanent side-effect of the treatment? John has an appt. this week with his oral surgeon as well, but I was wondering if anyone else had or still has this "hardened" feeling in their neck/throat area. Thanks.

That will be there for the duration. The nice soft fatty tissues and lymph tissues were taken out in surgery. All that is left is the muscle mass itself. I'd say my neck feels pretty much like the leather on an old hard saddle.

Hi DonnaJean, the hardened feeling around my chin and throat (I didn't even have neck surgery) is still with me and I am lucky that the stiff neck does not hinder my movement. I was told to expect this as a life long side effect and so when my neck has recovered from the severe burn, I started to exercise my neck every time I remembered it. During the appointment with my oncologist, when he felt around my neck with his hand, he always said,"hm, it is still quite hard" When I asked if my neck would become 'soft' again, he simply said, " maybe, just wait and see". I am not bothered any more since it doesn't do me any inconvenience--- I have no problem when parking my car.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks Brian and Karen, John went to see his oral surgeon today - put that "camera thingy" up his nose to check things at the base of the tongue, mouth, etc. - and everything, thank God, looks fine. As far as this hardened mass/tissue - the doctor didn't seem too concerned, and said it was quite common and seems to feel it's more of a side-effect from the radiation. Also asked the doctor if a "swallowing specialist" was a good idea for John to see, and although he said that the they do have someone in that field of expertise - he felt it was not needed for him at this time. We also asked to see if he can get his thyroid checked since John still gets frequently tired and spends a lot of time in bed - he said that we have to wait "6 months from the surgery" before that can be done. I suppose that's because he is still healing and everything is out of whack yet. So all n' all - not much to report, but John is getting so frustrated with this tight, swollen neck - he said it's like "being in prison - with no chance of parole". Kind of a strange analogy - but I can understand where he's coming from. (not that either one of us ever spent time in prison!) The doc also gave him a different way of excercising his arm/shoulder in the pool that is supposed to be more effective - so as I write this, he's doing his therapy now. Thanks again for the reply's - I do appreciate it.

Hi Donnajean,

I'm happy his doctor visit went well!

I have not seen any indication in the various searching I've done that indicates he should "have to wait for 6 months" to do a thyroid test. It is such a simple test (a small amount of blood) I'd ask your regular family doctor and see I he/she will do the test.

It is not necessarily up to the doc to decide if he should see a swallowing specialist. It should be up to you if your having swallowing problems what will a visit hurt? Your doctor doesn't have to live with these troubles, you guys do.

If it seems like I don't like his doctor, at this point that is true. From what you have described I get the feeling he is blowing off some things that might easily help with your husbands side effects.

If it were me I'd ask again and be firm about it.

Hi Mark, I thought it was kind of strange that he said we should wait 6 months before getting the thyroid test done - but he seemed to know what he was talking about, so we didn't second-guess that at the time. But since John has to see his regular PCP to get a script for Oxycontin, I will tell him to make an appt. to have the blood test done too. After all, it couldn't hurt since it's a simple test like you mentioned. Thanks for the advice.

I think the reason that they hold off on the thyroid test is because many of the side effects from radiation mimic a bad thyroid. I have heard of other doctors recommending 6 months also.