Hey everybody, I'm 20 months out from my surgery, 16 months from the end of radiation/chemo. In the last couple of weeks I've started having cramps in my neck. I don't notice anything in particular that I am doing to cause this or bring it on. My question is, is this something others have problems with or is this something I should be worried about? I have an appointment with my RO next week and my ENT the week after and plan to speak with them about it but just wanted to see what you kind folks could tell me. I'm also having trouble with thrush quite often. Is this the "new normal"? I'm beginning to hate that term but know I should just be very grateful (which I am) that I'm here to have a "new normal". Thanks so much for taking the time to read, and hopefully comment.

Very common and can be caused by rads or neck dissection. Sadly, not a lot of docs do much about it. PT will help but it will be a lifetime of things to do to manage it. Check out PT first.

Thrush can also be a lifelong battle for most but can just as easily go away with meds for many. Whoever is you care team leader would be able to mange thrush easier than the cramps.

I "enjoy" neck cramps frequently. I am very physically active including lifting weights which may make things worse. Right now, I like the way I feel when I work out more than I hate the cramps so I fight thru them. Some day that will change...

I have an excellent masseuse who discovered a trigger point between my shoulder blades that stop the cramps immediately. Obviously I can't reach it but my wife knows where it is and will help me (if I'm on her good side:)

If you are ever planning on being near the east side of Plano, Chris, I believe somewhere between 1 - 3 treatments and it will be good for weeks. They take insurance and if not, flat rate $65. They are all Ironman Triathletes, too.

Want to head to San Antonio for an OCF walk April 12?

Running a half-marathon in Houston (if I get my stinkin mileage up where it's supposed to be!). I am torn, lots of OCF folks that I would like to put a face with a name or handle.

Thank you for your replies.

I don't specifically suffer from neck cramps as much as chronic neck pain. It's always a 3-4 out of 10. Tramadol helps but doesn't alleviate it. I spoke with my team last week at my 3 month check and we'll see how it feels in May when I go back. They talked about possibly using botox in the neck muscles to help.

Hope you feel better...

Positive thoughts

"T"

Thank you! Also another question. Most everyone has talked about Physical Therapy, that was never mentioned to me. Possibly because they didn't think I would survive long enough for it?? Anyway, what all kinds of PT have you been through? I'm wondering if some of it might have helped me.

Thanks!

sanmc,
I am 4.5 years out of TX and have had neck pain for several years now. Tried Drugs, PT, Botox and Acupuncture. My vote goes to Acupuncture and maybe drugs right now. I am an active triathlete and do lift weights. When my neck hurts, I just stop . I am fairly sure the damage is fibrosis to a couple of neck muscles. It is the new normal as we all say.
I do daily neck exercised to strengthen my neck. I also have some swallowing difficulties fro the same reason. I use a thickener in my fluids to help.
All in all I am on the right side of the green and do believe there is an ironman in my future (again) maybe a bit slower though!!!!!

steve

The important thing to note is that radiation induced fibrosis is progressive and will never just go away. Diligence in managing this can be time consuming and may require many perspectives to improve QOL. The flip side of this coin is it can kill you as well. My issues started in year 4 and relentlessly continued to near death until I fully understood many of the components necessary for long term management. I was late to the party and my current diagnoses includes a few terminal expectations. All are closely tied to restricted blood flow.

I had regular PT almost every other month, various massage techniques almost weekly, exercise and stretching daily yet I could not stop the progression. There is no silver bullet although I have not had pain meds for 14 months now and went from progressively worsening pain 24 x 7 to brief episodes of pain for minutes at a time.

One of the advantages to someone like Steve is the amount of exercise he does. I consider triathletes to be elite athletes at any age. A healthy cardiovascular system is perhaps the single most important piece of a very complex problem.