Well here we are... 6 weeks post-ND, 4 week post the second surgery to seal the chyle leak. H has "boggy" vocal cords according to the surgeon which mean he is croaking instead of talking and has NO volume to his voice. He is having pain which he describes as toothache pain although all teeth were pulled prior to RT. Also pain in jawbone. If he does anything he gets "wheezy"...out of breath. Without pain meds, pain in moving his neck. Still losing weight because it hurts to chew and PEG has been removed. Naturally he's fit to be tied and the response I got yesterday from a nurse when I called to request a refill on his pain medication was "well, if he continues to be cancer free, they won't want to give him pain medication". Hello??? These treatments are enough to knock the crap out of a person for quite some time! So..I would like some feedback from my esteemed forum buddies...does this sound on track or are we looking at some problems here??? Thanks.

Cheryl

Hi Cheryl,
Sorry to say it, but this does not sound normal. His ND was a month and a half ago. I've had two ND and had no pain with either. People who have pain usually have it in the shoulder where the muscles have been weakened or cut. I'd call the doctor and get it checked. He also should not have to endure pain. Did anyone prescribe PT for the neck?

Take care,
Eileen

nope, no PT. gave him some home exercise sheets - common sense stuff really and he continues to move the neck around. He was just checked by the doc about 2 weeks ago who kinda just blew it off and said it was too early. RT isn't real excited about it either. No pain in the shoulder. It was a radical neck dissection, both sides, and part of the jugular removed. The section where the jugular was removed is the part that was reopened to fix the leak. I got the rx for the pain pills refilled so he won't be in pain but I thought the comment re: pain was out of line considering the treatment. (maybe I'm just in a snit today - maybe something to do with explaining everything over and over and over to doctors and nurses and creditors and ....) He will be scoped every 6 weeks for awhile now to be sure the primary doesn't return.
Thanks for the input....I need all the help I can get

Cheryl
The easy answer is that there is no normal,and your husbands neck dissection so far has been far from most accepted normals.Firstly you need to blow off the idiot nurse who made such a ridiculous statement,and secondly you need to see your specialist as soon as and get some explanation for his problems.This should involve doing more tests and he needs to see a nutritionist with a view to having his peg replaced asap..the one thing he cant afford to do is lose weight and struggle with his strength and energy levels.The wheezing could be caused by a few things and he should have a chest x-ray at the very least.Problems can get away from you very quickly so i would start shouting.
love liz

Thanks for the input, Liz. I am good at shouting so I'll start (actually continue!) now.

Liz hit the nail on the head. There's a reason nurses (RN's anyway) can't prescribe meds. I had complications with my neck dissection and suffered nerve damage, from the sounds of things he may be experiencing neuropathic pain, but it definitely sounds as though Liz's advice is the way to go...get a specialist and definitely don't let the weight slip.

None of what you describe sounds right and certainly does not comport in any way with the TX I got from Georgetown CCC. hard as it is, you may need to consider switching medical teams if they remain so out of line and unresponsive. It's been two years tomorrow since I was diagnosed with Cancer and I have never had any problem getting my pain meds renewed, even in the
"cancer-free" year before recurrence. Failure to prescribe
Physical therapy after a neck dissection veers close to malpractice IMO. So sorry you have such sh**y medical follow up.
It is frustrating, I know but I have complained and shouted so much the Georgetown Patient Advocate herself (and not her staff )takes my complaints now and knows me on sight. Good luck