haha, that is what my wife says about me. Just kidding, I am serious. I a 4 years out of treatment. Generally doing well. About as fit as I was before treatment, have not gained much weight back, that is OK. But I am getting quite a bit of pain in my neck lately. Especially, when I turn my head a certain way. Actually it is a radiating pain across my neck and face on the right side. That is also where I got most of my radiation. I have been to neurologist and my oncologist. Several MRIs, no tumors...very good and also no apparent pinching of a nerve as it exits my spine. Opioid drugs help a bit but do not stop it.I have tried Soma with zero results and neurotin with no results. I am also getting PT, 8 sessions, but I am not seeing any solid results. So it hurts when I look in a certain direction, up and to the right. It also hurts when I get on my bike for maybe 10 min, then OK. the general consensus of the neurologist, oncologist and PT guy is that fibrosis is pinching a nerve.
So has anyone experienced neck pain several years post treatment? I am thinking of seeing a pain specialist. I can live with the pain but I would rather not.
Thanks, Steve
Sorry to hear of the pain issue, but it's good you're doing well otherwise. I had similar lately, but was caused by whiplash being a passenger in a car, which the driver suddenly stopped, jerking my head forward and back, and felt a twinge. I couldn't turn my head for months from that, but it's ok now. I see you're quite active. Do you think any of them could contribute to the problem, especially turning the head while swimming to breath, biking to check your sides, tje bouncing from running, etc. I used to swim 1 sometimes 2 miles at the Y, when I was healthy lol, and would have a sore neck afterwards, next day. 1 mile was 88 laps. There can be other causes from the radiation, as mentioned fibrosis, and does other things to muscles, nerves. Radiation has short term toxicities, less than 3 months, and long term toxicities after 3 months.
Good luck.
It's only been months not years, but neck/shoulder pain is the strongest "pain" symptom I have at 4.5 months post treatment, 7 months post selective neck dissection. There's stiffness turning it any way and shoulder pain from nerve damage.
Continual stretching and exercises for arm and shoulder help. Hopefully it will get better in time. I wouldn't want to be writing this 4 years for now, that's for sure!
Hope you get some relief!
Positive thoughts and prayers
"T"
Ouch!!! Acupuncture maybe? Hope you find relief soon!
Yup that was what I was going to suggest. Fibrosed tissue is starved for blood, acupuncture may help blood back into the area and help with the pain... hugs.
Well i must say I am getting a bit tire of doctor visits.
So trying to hunt down the pain and see if I can stop it
The latest theory, which I believe.
I have fibrosis on the side of my neck where the most radiation was targeted. It is quite stiff, 4 years out. MRIs show no impediment of nerves out of the spine...very good. But the fibrosis is squeezing a nerve when I put my head is a certain position. The rx is botox injections. There is a Dr at cedars sini in NYC, dr stubenfield who has a lecture on line abut this.
I am on a fence, the pain is a pain! But I have not heard of any OCF folks mentioning it.
I will let you know what happens.....
Steve
Sorry for your troubles, Steve, and have not experienced this long term with any of my neck dissections. Coud be Lhermitte's (sp) is when the standing the chin is bent forward to the chest, a shock goes through the body to the feet, and fortunately do not have this either.
FYI, there is no Cedars-Sinai in NYC, but have one in Los Angeles. In NYC it's Mount Sinai, and did not see a Dr. Stubenfield there from their listing, but doesn't mean he's not, being he's new or other reason, like doing a lecture, and is not on staff.
Good luck, and hope you find relief.
Right you are, cedars is out here, MT. in in NYC. But I will blame this on chemo brain or just going Nutz! the Dr is Michael Stubbenfield and the is at Sloane Kettering, never the less very smart guy. Look at his posted videos if you are having neck pain!
Steve
No problem. You should see my posts, errors are guaranteed lol. I have chemo brain too, and carb fog from diabetes lol. I'll check him out, thanks.
I really liked Dr. Michael D. Stubblefields introductory page at MSKCC about his treating the after effects of treatment, which I have a few for years, and some permanent. I may go see him sometime after my next surgery. I didn't watch the full video yet.
well, another update. I have seen two pain specialist. Both are in agreement, Botox is a good solution. They both also said, this is not a common occurrence. I though my RO might be crazy when she said she has not seen this before. Then I thought, she does not treat 100s of H and N patients, so I will cut her a break.
Anyway, I hope to be on treatment in a couple of weeks. I will keep you all abreast of the outcome. Hope it works!!!!
Steve
Steve, hope it turns out as you are hoping. Please let us know your progress so it can benefit other long term survivors who have the same problem.
Good luck!!!
Ha this is great. I am in my bed at Mission Hospital in Orange County , CA. While looking on ways to treat my neck pain, botox is the plan, I came down with Pneumonia. After doing some swallowing tests yesterday they believe aspirated pneumonia. I guess all that food is not going out through my nose! some is going into my lungs!
from the radiation ,imrt, wide field, my epiglottis took a beating and does not close over my trachea, oooh this is no fun at all
So this will clear up and I will take some therapy, and get back to my new normal.
I would also there are really some side effects for some radiation patients. But it beats the alternative and other than these couple of minor problems, i am living well!
Steve