Neck and shoulder problems 9 month after surgery

Pam M said:

I'm With You
Little over two years since biopsies and tonsillectomy; 22 months since radiation; a year since my modified radical neck dissection. Right side of neck, under jawline, parts of ear, parts of the side of my head, part of shoulder and chest are numb in places, sensitive in places. Sounds like your neck feels like mine. I still have impaired motion in my shoulder, arm and neck. My neck moves better than my arm does (OK - my head - you know what I mean).
I think many here have done well with physical therapy after treatment. I also know many have better luck stretching in the shower than out.
It's my understanding that, for me, some amount of numbness/tenderness/limited motion may be permanent.

Pretty much what Pam said,
Pretty much what Pam said, but my side is the left side. Some of the numbness in areas is gone, but some is still there. Like, my left lower lip was very numb, and had some paralysis. It has gotten better. My ear and left side are not as numb, some numbness and some creepy crawly-ness is still there. I don't have as much burning nerve pain, like I used to, but I do get wicked spasms. I try to stretch my neck every day. I have very limited range of motion. I cannot touch my chin to my chest, (do you know how hard it is to fold laundry when you cannot do that. And every time, I fold, I still try and do it. Duh!), it turns left, better than to the right, i cant look up too well, either. My ROM hasn't gotten any better, but at least it's not worse. Right after my surgery, I could not lift my left arm up past my shoulder level. I can now do that, and even put it up next to my head, but that arm is still weak, and the hand and fingers are numb all the time. It also doesn't grasp stuff well. I'm constantly dropping stuff. Trying to even use that arm to put dishes in the cabinet is hard. Any weight in it, and it's hard to raise it. I really try not to baby my left arm, and I'm always doing things with it, and I even do exercises with it, but it seems to have only gotten so much better, and that is it. I think there will be some permanent damage that I will always have.

I am just exactly three years from my neck dissection, a couple days ago.

ratface said:

Seems to be very new normal
I'm coming up close to 3 years for a selective neck dissection on the left with previous rads. It's exactly as you describe minus the redness and burning. I have permanent numbness along the jaw line from the ear lobe to the beginning of the chinny chin chin. Cannot feel a thing when I shave but not much grows there anyway. The skin is taunt with a knotlike appearance where the cervical node was originally. If you want to regain as much motion as possible practice some very simple restorative type yoga which tends to concentrate and emphasize neck, shoulder, and head areas. If you live in the US and near an Aldi's they are running their gym/exercise/New Years resolution yearly annual sale last week/this week. Pick up a a box set of 'The gift of Yoga" 80 page full color book and 60 minute DVD for the astronomical price of $3.99. This is a gentle yoga practice with lots of benefit to the neck area. My favorite part is just wearing those cool yoga pants!

I had a huge area of numbness after my radical neck
13 years ago. I remember being creeped out when I put the phone up to my ear for the first time and couldn't feel it. I am not numb at all any more. Not in the least bit.

I don't know over what time frame this disappeared, but it did. Completely and totally. Now, of course, I have the new stuff from the surgery last year which affects my lip to some extent, but not my neck, or face in the least.

I don't know if this is a usual experience or not. Personally, I think you continue to heal forever.

Hey, RayTodd was asking who you were in another thread dealing with biking and running. I told him you were that sore-kneed guy from CHicago:)

shoemandan1 said:

Thanks everyone
Just wanted to thank everyone who commented on my post.Sounds like this is just part of the new norm that may take care of its self in time.I just hope that the side effects on each and eveyone of you improve with time.I consider you all friends in this ,because we share some of the same side effects.some of us more than others. God bless you all and take care. Dan

PS i,m not the guy from Chicgo i,m from Michigan .been on the sight for about a month

Same for my hubby
Andy has numbness, pain, and not great range of motion. He is 10 months out of surgery. He began some physical therapy and the best part involves using a pulley that is attached to the frame of the door. It aids in raising arms in various angles to gain back range of motion. He has started back trying to do the routine regularly and I think all of the stretching and getting gentle massages helps rehabilitate. Maybe this area will never be exactly the same but, I hope all of you show steady signs of improvement in response to your efforts!

12 years to find out what it was
I have the same problem and the cause is from the radiation treatment to a group of nerves (I think there are five of them) in the jaw that do not come directly from the spine as all of the rest in your body do. The one I was told was damaged was the trigemenal nerve and this can cause some strange symptoms - back pain, numbness to jaw, numbness to chin, numbmess to tongue, and neck spasams. If it had been caused by scar tissue then they were going to try a new treatment on me, a steroid pad wrapped around the nerve. Mine was not scar tissue so there is no treatment at this time that my Dr is aware of and he seems to be on top of most new treatment efforts in H&N.

Chryssi said:

Hi Shoemandan,
After my neck
Hi Shoemandan,

After my neck dissection I had severe shoulder and arm pain. Could barely use my left arm from the pain and weakness. I went for acupuncture treatment at Pacific College in NYC (luckily I live nearby) and had one of the teachers treat me. I saw relief immediately after the first treatment. It's been several months now and I have no pain or stiffness. I'll be going back to deal with other problems due to the radiation treatment. Hope this helps. Best of luck.

Acupuncture
Thanks for that advice Chryssi, although it wasn't meant for me. That thought never occurred to me. All I'm doing is the exercises my Dr. told me to do and boy do they hurt! But they have stopped the back shoulder blade pain. I was thinking massage but your idea is better.

Tommy