radical neck dissection side effects

tracy_csn

In addition to radiation and chemo for my tonsil cancer, I had a radical neck dissection.
So, a question for other head and neck survivors who had radical neck dissections:
- did/do you have much physical discomfort? (7 months after my surgery, and my neck hurts all the time, the scar tissue is still contracting, and at night I wake up every 2 hrs with my neck locked up...
- did/do you do physical therapy or specific exercises to get back range of motion and train new muscles? how long did that take to help?
- has anyone tried, had results from acupuncture?
- how about massage?
Thanks in advance.
Tracy

tavz77

Hi Tracy,
I too had tonsil cancer..left side....
I had a radical left neck disection 8 mos. ago. I had alot and still am having trouble with my left shoulder, neck and back. I was in PT for awhile after my surgery but had to stop while I was going through the radiation. I just started going back to PT and it seems to be helping a little. Although I still get really sore in the muscles around my shoulder blade.My neck gets stiff as well. I have an excercise that makes it feel better.....sit in a chair with your butt all the way back. Sit up as straight as you can. Put your finger tips on your chin and gently push back against your chin. This will help strengthen what neck muscles are left. I do this about every three hours or so..10 times each time.....sometimes I push back and then tilt my head so that I am looking straight up....this helps stretch out the scar tissue area... I hope this helps you a bit....hang in there...Rich

sknaeble

Tracy, my husband had a radical neck, then and still in rad and chemo. He also had a trach placed but that came out before we left the hospital. His neck healed very well. He still has occasional and mild neck stiffness but we credit his healing to his sister, She is a practitioner of energy healing. She has been working with my husband every few days while hospitalized, and still now, weekly. My husband was "whatever" at first, but now he feels his sister had a huge part in the healing process. Massage also is very good, along with use it or lose it. Wishes of Wellness. Shanon

hamfam

Hi Tracy
I had a radical neck dissection for tonsil cancer that had spread to one lymph node 3 years ago.
Iwas told i would not be able to shrug my shoulder after the op but luckily my nerve survived and i have maintained the shrug movement. however i have lost my deltoid muscle and about 50% of the rotor cuff muscles around my shoulder as a result of nerve damage.
i had PT for a few months with some success but do not expect to get full use of your shoulder and neck movement, i guess i have about 80% now.
I still have days when my shoulder aches more than is expected and i resort to co-codamol for relief but it has to be said this normally follows a round of golf so it is very much self inflicted!
I get cramps in my neck on both sides and they can be very painfull but they pass in seconds, i guess they are almost a daily occurance.
The left side of my neck (site of the dissection) is always more tender than the right side, due to the lack of muscle cover over the tendons but this is only to be expected and is of no real consequence.
All in all the biggest problems i have are dry mouth/throat and the neck cramps, but hey 3 years on and i'm still no better at golf but at least i've got an excuse now!
Be lucky and keep smiling
Derek

tracy_csn

hamfam said:

Hi Tracy
I had a radical neck dissection for tonsil cancer that had spread to one lymph node 3 years ago.
Iwas told i would not be able to shrug my shoulder after the op but luckily my nerve survived and i have maintained the shrug movement. however i have lost my deltoid muscle and about 50% of the rotor cuff muscles around my shoulder as a result of nerve damage.
i had PT for a few months with some success but do not expect to get full use of your shoulder and neck movement, i guess i have about 80% now.
I still have days when my shoulder aches more than is expected and i resort to co-codamol for relief but it has to be said this normally follows a round of golf so it is very much self inflicted!
I get cramps in my neck on both sides and they can be very painfull but they pass in seconds, i guess they are almost a daily occurance.
The left side of my neck (site of the dissection) is always more tender than the right side, due to the lack of muscle cover over the tendons but this is only to be expected and is of no real consequence.
All in all the biggest problems i have are dry mouth/throat and the neck cramps, but hey 3 years on and i'm still no better at golf but at least i've got an excuse now!
Be lucky and keep smiling
Derek

Thanks Derek:
I am also continuing PT, and with muscle atrophy, I started some gradual weight exercises (like 3, 5, at most 8 lbs weights...). I also get a deep massage every two weeks. Finally, about three evenings a week, I take some strong pain drugs.
For dry mouth, after trying lots of other things, I finally discovered Biotene OralBalance, ie, fake spit, and if you haven't tried it, you should. It works great.
Thanks again for the encouragement.
Tracy

JeannaR

Hi Tracy, i had 2 radical neck dissections, 1 on each side, 18 months apart. I had squamous cell carcinoma of the base of tongue and with the first surgery and tonsilectomy, they didnt find the primary until he showed himself 18 months later. I had the second radical Jan of 2003, followed by base of tongue surgery followed by plastic surgery to put muscle from my forearm once where the 1/2 of base of tongue was. Then radiation and chemo, 2003 was a busy year. I too suffer from shoulder/neck pain, its constant. I've been taking 800mg of motri in the morning after a hot shower. I have been doing acupuncture for the dry mouth and pain and it does help! I started out 1 time a week for 3 times then every other week then every 3 weeks, now go about every 2 to 3 months, I can tell when i need it. Good luck to you!
Jeanna Richelson
Chattanooga, TN

jeff_wherrett

JeannaR said:

Hi Tracy, i had 2 radical neck dissections, 1 on each side, 18 months apart. I had squamous cell carcinoma of the base of tongue and with the first surgery and tonsilectomy, they didnt find the primary until he showed himself 18 months later. I had the second radical Jan of 2003, followed by base of tongue surgery followed by plastic surgery to put muscle from my forearm once where the 1/2 of base of tongue was. Then radiation and chemo, 2003 was a busy year. I too suffer from shoulder/neck pain, its constant. I've been taking 800mg of motri in the morning after a hot shower. I have been doing acupuncture for the dry mouth and pain and it does help! I started out 1 time a week for 3 times then every other week then every 3 weeks, now go about every 2 to 3 months, I can tell when i need it. Good luck to you!
Jeanna Richelson
Chattanooga, TN

Wow Jeanna. 2 Rads? Tough Stuff. I've just completed my radiation and chemo for my second fight with throat cancer (squamous cell carcinoma). My neck rad was done in Aug and now, two 1/2 months after the treatment, I feel like my stretching and neck massages have paid off. I'm still queasy and nauseous from the drugs and all, but I'm hoping to get off the pain killers soon. I really am glad that you all have posted comments such as this. It really helps out when you're going through a very difficult time. Good luck to all. Keep STRONG!!!!

chadpip

RND side effects
Hello, Tracy_csn

I had a rad. neck diss. in Spring of 2009, along with chemo and radiation. No lie, it was awful. The left side of my neck still aches constantly and the neck cramps have recently started. At my last checkup 5 months ago, both of my drs. said that the pain is normal and permanent, due to the radiation. I've been told by many drs. that I seem to have a high tolerance for pain, so I am not on any painkillers and haven't been since surgery. While my skin is still nearly numb on the left side of my neck, the tissue underneath is very sensitive and tender to the touch. Again, the drs. said this is normal and permanent. While I've gotten used to the pain, I am always aware of it. I do, however, have full use of my shoulder. Never tried massage, as it hurts to even touch it. Despite all this, I am quite grateful to be alive and cancer-free. Best of luck to you.

Chad

ggpierce

I had tonsil malignant,
I had tonsil malignant, squamous cell carcinoma, had the right side rad. neck disection. Was in fierce pain for a few months. They wanted me to go to physical therapy, but when they showed me what I would be doing I just do it at home. Turn your head left, turn right, lift it up, look down. This I can do myself. Besides, I operate equipment most every day and turn my head around both directions and that stretches it out. I still have dry mouth, cant swallow, and mild pain. I just sit and stretch it as much as I can. It's been a little over 2 1/2 years since I had it.

Hal61

Stuff I've Tried
Hello Tracy, I had a partial on the left side 10 months ago, preceded by IMRT, and Cisplatin chemo.

My neck, like the above, gives me some pain, along with the shoulder. I've tried acupuncture which didn't help much. And I tried a licensed lymph edema massage specialist for a number of treatments. The relief there was substantial immediately after the massage, but after a few hours my neck would return to it's plugged-up state. The most bothersome to me is the tightness, and the feeling that someone has super-glued my mainly numb neck area.

The dissection also re-alligned my bones a bit. It took my surgeon about a year to acknowedge it, but the surgery can for some cause a shifting, most often of the scalpula. My scalpula at the left of my back has tilted up as it approaches my spine, and protrudes just slightly at the latissimus (sp?) muscle where my neck and shoulder meet. Doc said therapy, in his experience, would not correct the bone movement, but it gives me little or no pain.

Neck dissections, as far as I can tell from 18 months of watching posts, are a fairly blunt instrument. When the doc says "We didn't have to cut any nerves," it's more of a legal stattement than a positive prognostic.

best, Hal

vsudd

radical neck dissection
My husband had a radical neck dissection in 2010. He has had a lot of pain, went through physical therapy for about 8 months. The only think that has helped him is time and acupuncture. He is slowly getting better and I know you will too. It just takes time. I wish I could hurry it up for all those who have had this radical surgery but it will slowly get better.
Best of luck.
vsudd

Hondo

chadpip said:

RND side effects
Hello, Tracy_csn

I had a rad. neck diss. in Spring of 2009, along with chemo and radiation. No lie, it was awful. The left side of my neck still aches constantly and the neck cramps have recently started. At my last checkup 5 months ago, both of my drs. said that the pain is normal and permanent, due to the radiation. I've been told by many drs. that I seem to have a high tolerance for pain, so I am not on any painkillers and haven't been since surgery. While my skin is still nearly numb on the left side of my neck, the tissue underneath is very sensitive and tender to the touch. Again, the drs. said this is normal and permanent. While I've gotten used to the pain, I am always aware of it. I do, however, have full use of my shoulder. Never tried massage, as it hurts to even touch it. Despite all this, I am quite grateful to be alive and cancer-free. Best of luck to you.

Chad

Hi Chad

So sorry to hear you had to go through all that pain and now to have cramps just starting. I do agree with your doc that it is normal as the side affects of treatment are now the problem. I am like you that through it all I am very thankful just to be alive.

PS: Welcome to the family here on CSN, glad that you are here with us.
Hondo

longtermsurvivor

vsudd said:

radical neck dissection
My husband had a radical neck dissection in 2010. He has had a lot of pain, went through physical therapy for about 8 months. The only think that has helped him is time and acupuncture. He is slowly getting better and I know you will too. It just takes time. I wish I could hurry it up for all those who have had this radical surgery but it will slowly get better.
Best of luck.
vsudd

It does get better
I had a radical neck dissection and radiation in 1998. I had lots of trouble with pain/spasm initially. My jaw would spasm down into my neck, which was excutiating. My shoulders actually had knots in them that you could fee. Much of this was radiation related rather than just due to the neck dissection. I also developed significant gastric reflux from the neck dissection, which I still have to this day.

It does get better. Very gradually. My severe spasms subsided over maybe 4-5 years. I have a few palpable knots in my shoulders still, but nothing like the initial pain. I sleep on a very thin pillow, because I have neck pain if I elevate my head much at night.

You heal forever following the insult of the surgery/radiation. Fortunately the treatment gives you time to do this.

vsudd

longtermsurvivor said:

It does get better
I had a radical neck dissection and radiation in 1998. I had lots of trouble with pain/spasm initially. My jaw would spasm down into my neck, which was excutiating. My shoulders actually had knots in them that you could fee. Much of this was radiation related rather than just due to the neck dissection. I also developed significant gastric reflux from the neck dissection, which I still have to this day.

It does get better. Very gradually. My severe spasms subsided over maybe 4-5 years. I have a few palpable knots in my shoulders still, but nothing like the initial pain. I sleep on a very thin pillow, because I have neck pain if I elevate my head much at night.

You heal forever following the insult of the surgery/radiation. Fortunately the treatment gives you time to do this.

It does get better
Thank you for hope that it does get better. My husband had surgery in May 2010. He has been on pain meds starting about 5 months after surgery. After many Drs. not telling us any info. finally went to one who said it was due to the radiation after the surgery. We go from thinking some improvement to having a bad day and thinking no improvement. But I do see improvement but it is very slow. It is good to hear from people that have had surgery or caregivers like me who seek answers. It is very helpful.

Thanks Again,

God Bless
vsudd