Just touching base on this. I had MRND, bilateral, last April. Jugular, SCM, and SAN all preserved, but have had the usual numbness and stiffness, exacerbated by the radiation for sure.

Over the past little bit, the shoulder neck stiffness and discomfort has appeared to get worse, as the numbness has worn off. Still some numbness, but mostly tightness and some discomfort. I have just had follow ups with my RO, Surgeon and MO, so all is fine from a disease standpoint, but now the nerves in the neck are starting to fire again.

Anyone else experience this? If so, any tips, ideas?

Thanks!

Hi Jeff;
I mentioned to my wife only this morning that I noticed the "wooden-ness" of my left shoulder had evolved enough to finally make comment. It now feels almost normal with the exception of some soreness at the tip of the collar bone (please pardon my lack of proper medical terminology and nomenclature). I have sensed changes to the hearing capability of my left ear a couple of times in the last 2 years, but the muffled ringing usually returns a short time later. I understand that most instances of tinnitus is usually attributed to chemotherapy, but in my case I am fairly certain it arrived immediately following surgery.

Other effects of my surgery? Well, I am still trying to find out what happened to the missing half of my neck now that anything north of my chest resembles that of a bobble-head doll. Surgery also cost me the loss of my long, flowing shoulder length hair that a number of friends felt was a little excessive for a semi-retired 55 year old male with only a mild interest in the pursuit of his youth, but I think they were just jealous!

I have fought hard against trismus (reduced jaw movement) with passive stretching exercises with the Therabite system and experienced tremendous results, but I have had to forego treatment the last month or two while the dentists try to deal with some exposed bone in my lower mandible due to osteoradionecrosis. I find it difficult to determine whether the radiation or the surgery was responsible for various other effects or difficulties, more likely a combination of the two. I have heard that radiation damage will continue to deteriorate affected tissue, and that seems to be quite true with the muscles in the neck and shoulder area which were also affected by the surgery. My whole upper body seems to be stiffening-up to some degree, and day to day activity doesn't seem to limber it up at all.

Out of curiosity, what do you do for pain management? Do you follow any particular exercise regimen? Any detail you would care to share would be appreciated.

Every body is different I am told, but I have found this website to be a veritable goldmine of information and support. There seems to be a lot more in common with most survivors I have communicated with so far, and that has been a source of encouragement.

Anyway, the best of luck to you, and I look forward to your reply.

Kindest regards,
JT2

When Robs nerves started to recover after the neck dissection,it opened up a whole new can of worms on the pain front.And quite a different type of pain.It is notoriously difficult to control neuralgia,which is excruciating.in one respect it lets you know things are recovering,and on the other hand its a bit like a plug thats not wired and crackles and sparks when you put it in the socket.
Rob was put on a long term drug which he had to take at night and took about two weeks to gain maximum effect which really helped,and anti inflammatories to reduce the irritation and stiffness..The pain gradually receded as the irritated nerves settled down,and his favourite treatment for the shoulder and neck stiffness was a long warm aromtherapy massage.

hope you feel better soon

love liz

Thanks for the input. Don't get me wrong, this is not excruciating by any stretch, but, then again, I'm coming from a slightly different perspective than most. I had almost 20 years of neck/arm pain and numbness, bounced from MRI to CAT scan to EMG to myelogram, diagnosis of everything from arthritis to fibromyalgia, which ultimately led to proper diagnosis and 2 level cervical fusion last February 7. In fact, it was the anesthesiologist in that surgery that thought she "spotted something" that my ENT should look at. I owe her my life.

So the discomfort I have today is nothing compared to what I was used to before the fusion. It is annoying, but annoying I can live with. I try to do stretches, take a little Advil when needed. Right now it's worse, as we are in the middle of winter, so no golf, lots of time at the computer, etc., which promotes stiffening up. I'll start going to the driving range again in about a week, after things calm down at work, and that will undoubtedly help.

I envy you going to the driving range Jeff, I have so many clubs, golf balls and all the goodies, but didn't get to touch them last year. I bet one way or another I'll have that Taylor made Bubble 2 out this year. Maybe some day we can play together.

For the past two weeks the right side of my head (the side opposite the cancer) around the ear has tingled and hurt. I attributed it to nerve healing, however, it is still occuring. Also the right side of my neck is very stiff. Tylenol helps a little, but am wondering if there is anything else.

Jeff - I have experienced the same thing that you are describing - my ND was done in May '06 and last October I mentioned to my dr. that my neck was feeling tighter and "different". He attributed it to scar tissue, etc, and re-iterated the importance of keeping up my neck exercises, which I am pretty good about doing every day. It got worse, however, to the point I was having a burning pain sometimes in the side of my neck. I was sure something was going on. (I posted about this recently, if you look at my other posts) I should mention that I also have cervical spine arthritis, and have also had problems in the past with neck pain. Anyway, long story short, in January I saw all of my drs and had a CT scan since I was so worried, but everything is fine and they all say it's just a combination of the after effects of the ND and my other Neck issues....