Neck dissection pain

vsudd

My husband had a radical neck dissection 15 months ago. He is cancer free and we are so thankful. He has been fighting head and neck cancer for 5 years. What I am wondering is, does the pain ever go away. We have asked numerous Doctors, Neurologist, Surgeons etc and never have gotten a straight answer. I have seen on the board that we have a few long term dissection survivors. I would like to hear your experience. Thank You, Valerie

Dav1965

My story
I had double neck dissection in July 2010. I had around 10 nodes removed on the left none on the right. Chemo and radiation on both sides of the neck equall. I have no side effects of the dissection just side efffects from chemo and radiation. I guess everybody is different. I am in more pain now than i was before the surgery. But at least i am here to complain about it. Good luck and God bless. David

vsudd

Dav1965 said:

My story
I had double neck dissection in July 2010. I had around 10 nodes removed on the left none on the right. Chemo and radiation on both sides of the neck equall. I have no side effects of the dissection just side efffects from chemo and radiation. I guess everybody is different. I am in more pain now than i was before the surgery. But at least i am here to complain about it. Good luck and God bless. David

Neck Dissection Pain
Thank You, Dave. Yes I am so happy you two are here and God Bless. Thank you for you story.

D Lewis

Almost relevant...
I didn't have a neck dissection. All I had was removal of a single 3-cm lymph node on one side. This was back in February of 2010, before I started treatment, about 18 months ago. The surgical site is still uncomfortable. I don't need pain meds, but it surprises me that it is painful to the touch.

Deb (still cancer free)

vsudd

D Lewis said:

Almost relevant...
I didn't have a neck dissection. All I had was removal of a single 3-cm lymph node on one side. This was back in February of 2010, before I started treatment, about 18 months ago. The surgical site is still uncomfortable. I don't need pain meds, but it surprises me that it is painful to the touch.

Deb (still cancer free)

Almost relevant
So glad you are cancer free and doing well! Thank You for the post.

ahamric

neck dissection
My husband had a neck dissection in march. He had 36 lymph nodes removed. 6 weeks later he had a reconstruction of his tongue,at that time they went back through the same spot as the dissection was done The next day the reconstruction failed due to 2 blood clots the tissue died. The dr had to go back through the neck again. No pain 11 weeks out at all. Still cranky and kickin it after 33 rounds of radiation and 3 glossectomys. fun fun

vsudd

ahamric said:

neck dissection
My husband had a neck dissection in march. He had 36 lymph nodes removed. 6 weeks later he had a reconstruction of his tongue,at that time they went back through the same spot as the dissection was done The next day the reconstruction failed due to 2 blood clots the tissue died. The dr had to go back through the neck again. No pain 11 weeks out at all. Still cranky and kickin it after 33 rounds of radiation and 3 glossectomys. fun fun

neck dissection
Sorry he had to go through all the surgerys but so happy that he is not going through all the pain. God Bless.

luv4lacrosse

NECK PAIN
I had a modified dissection last August. I do still have a dull ache in my Neck and Shoulder, but with daily stretching and excersise, I have been able to reduce this quite a bit.

Seems to bother me the most when I get out of bed in the morning, but a hot shower and some stretching relieves it pretty quickly.

I suspect all of us who have had any type of neck dissection will have an array of issues going forward. Actually my biggest annoyance is the complete loss of sensation on the side my neck from the surgery and it goes half way up my face.

Feels really wierd when shaving.

Mike

juliepearson

neck dissection
hi
My husband neil had a full neck dissection in may of this year he also had the floor of his mouth removed replaced by his arm. His main pain is in his rh shoulder and his ear. he finds it very hard to get comfortable in bed and it even hurts him to walk. The surgeon said he should not really have pain now but he says the pain is getting worse he start physio therapy on wednesday to see if this helps. AT the moment my husband is taking tramodol 50mg mostly 8 per day but does sometimes get away with 6 per day the dr has just also prescribed lyrica 50mg (pregabalin) to see if this helps. I was intrigued by the fact that nobody is really answering ure questions about the pain in the shoulder because i aslo feel that we are fobbed off basically.
Sorry that i cannot offer any advice for you but am wondering if you can give us any and if there are any meds that have helped your husband. looking at your replies these people do not seem to have too much pain and my personal opinion is that he was butchered in surgery as he had 2 anatomas in the recovery room so was took back into theatre so his neck was opened up 3 times, we have now moved to a different hospital our first appt with the surgeon is sept 6th so we can see what advice he gives i will be happy to let you know how we get on and i would love to hear from anyone else who is suffering this pain sorry to harp on and we wish you and your husband all the very best.


lots of love

Julie n Neil

Hal61

luv4lacrosse said:

NECK PAIN
I had a modified dissection last August. I do still have a dull ache in my Neck and Shoulder, but with daily stretching and excersise, I have been able to reduce this quite a bit.

Seems to bother me the most when I get out of bed in the morning, but a hot shower and some stretching relieves it pretty quickly.

I suspect all of us who have had any type of neck dissection will have an array of issues going forward. Actually my biggest annoyance is the complete loss of sensation on the side my neck from the surgery and it goes half way up my face.

Feels really wierd when shaving.

Mike

Shaving
I'm with you on that Mike. I have to keep feeling the left lower side of my face and neck to see if the shaver is working. Simlar time frame. Numb from lower left ear--tops fine--down neck and left jawline. Hurts not much nowadays, but always feels like someone just coated the area with super glue, but I think that's still some lymph buildup. I've mentioned also that the dissection also moved my scalpula on the back left, and one end of it now juts up to my collarbone on that side. After a year of sidestepping, my ENT--who did the surgery--admitted the dissection sometimes causes that. He said as far as he knows, pyhsical therapy won't move the bones back. I'm just glad the numbnutz finally admitted it to me so I could quit wondering.
best, Hal

juliepearson

Hal61 said:

Shaving
I'm with you on that Mike. I have to keep feeling the left lower side of my face and neck to see if the shaver is working. Simlar time frame. Numb from lower left ear--tops fine--down neck and left jawline. Hurts not much nowadays, but always feels like someone just coated the area with super glue, but I think that's still some lymph buildup. I've mentioned also that the dissection also moved my scalpula on the back left, and one end of it now juts up to my collarbone on that side. After a year of sidestepping, my ENT--who did the surgery--admitted the dissection sometimes causes that. He said as far as he knows, pyhsical therapy won't move the bones back. I'm just glad the numbnutz finally admitted it to me so I could quit wondering.
best, Hal

neck dissection
hi hal

just wondered if you could give any advice ref the pain you suffered in your shoulders and what meds you took for it.
I am so pleased that you mentioned that you have a bone sticking out in your back as my husband does too his is about 2 inches down from his right shoulder and my husband cannot lift this arm right up does this go or do u still have the same problem.

Look forward to hearing from you

love julie n neil x

Hal61

juliepearson said:

neck dissection
hi hal

just wondered if you could give any advice ref the pain you suffered in your shoulders and what meds you took for it.
I am so pleased that you mentioned that you have a bone sticking out in your back as my husband does too his is about 2 inches down from his right shoulder and my husband cannot lift this arm right up does this go or do u still have the same problem.

Look forward to hearing from you

love julie n neil x

Julie n Neil
Hi Julie, Neil is still pretty fresh, and had more done by far than I did. He'll need to take his time, and you with him. But, to answer best I can, any real pain only lasted a month or so. I had dull aching for a number of months, but not bad. I took vicodin, like a lot of people here have or do. At first I had a hard time lifting my left arm very far--mine was all left side. I noticed when I went to the drive-through ATM I could hardly manage to push the keys. That got considerable better after 5 or 6 months, and my arm goes up much easier now.

But that is a side effect my surgeon mentioned before the procedure, and the severity or limitation can include the ongoing inability to lift that arm very high. You won't know for awhile though, because it took like I said 5 or 6 months for very good motion for me, and it's still not easy as my right arm.

Yeah, the shifted bone thing. That shoulder area ached too for several months, but it doesn't bother me much at all after a year from surgery, and I think got better after 6 months or so. But it's still out of whack. I had lymph-edema massage that didn't do a lot, and am not going to worry about getting my shoulder blade to straighten out. As said, my surgeon said in his experience therapy doesn't shift them back. He could be wrong, but it's not a big problem for me.


best to you and Neil
Hal

vsudd

juliepearson said:

neck dissection
hi
My husband neil had a full neck dissection in may of this year he also had the floor of his mouth removed replaced by his arm. His main pain is in his rh shoulder and his ear. he finds it very hard to get comfortable in bed and it even hurts him to walk. The surgeon said he should not really have pain now but he says the pain is getting worse he start physio therapy on wednesday to see if this helps. AT the moment my husband is taking tramodol 50mg mostly 8 per day but does sometimes get away with 6 per day the dr has just also prescribed lyrica 50mg (pregabalin) to see if this helps. I was intrigued by the fact that nobody is really answering ure questions about the pain in the shoulder because i aslo feel that we are fobbed off basically.
Sorry that i cannot offer any advice for you but am wondering if you can give us any and if there are any meds that have helped your husband. looking at your replies these people do not seem to have too much pain and my personal opinion is that he was butchered in surgery as he had 2 anatomas in the recovery room so was took back into theatre so his neck was opened up 3 times, we have now moved to a different hospital our first appt with the surgeon is sept 6th so we can see what advice he gives i will be happy to let you know how we get on and i would love to hear from anyone else who is suffering this pain sorry to harp on and we wish you and your husband all the very best.


lots of love

Julie n Neil

neck dissection Pain
Hi Julie, I am so glad you answered my post. My husband didn't need any meds till about 5 months after surgery. That is when the pain started, he does have shoulder pain also. A neurologist told us he thought it was nerve damage from the radiation pellets they gave him after the surgery not the surgery it self. He said the pellets take a while to go through the body and that is why no pain at first. He has little strength in right arm but I do notice its getting a little better. He takes hydrocodine ever 4 to 6 hours during day. At night he takes neuron tin ,which is same type of drug as lyrica. He wasn't able to take the lyrica it made him hyper. He was very uncomfortable at night until he took the nerontin, it helps him sleep and he has no pain during night. The pain doctor is trying to get him to take neurontin 3 times a day but it makes him very sleepy so we are still working on that. He wants to work a few hours a day and he can't on that med.
He has also tried acupuncture and that helped . You might look up accurpunture for neck dissection pain on internet , they have had studies on it. It works for some people. Don't think everyone has the pain he does. Your husband is just a few months out of surgery so I'm sure he will be fine. We are just happy he is here with us and cancer free !!
Keep it touch and good luck to both of you.
Lots of love,
Valerie

Angel6

vsudd said:

neck dissection Pain
Hi Julie, I am so glad you answered my post. My husband didn't need any meds till about 5 months after surgery. That is when the pain started, he does have shoulder pain also. A neurologist told us he thought it was nerve damage from the radiation pellets they gave him after the surgery not the surgery it self. He said the pellets take a while to go through the body and that is why no pain at first. He has little strength in right arm but I do notice its getting a little better. He takes hydrocodine ever 4 to 6 hours during day. At night he takes neuron tin ,which is same type of drug as lyrica. He wasn't able to take the lyrica it made him hyper. He was very uncomfortable at night until he took the nerontin, it helps him sleep and he has no pain during night. The pain doctor is trying to get him to take neurontin 3 times a day but it makes him very sleepy so we are still working on that. He wants to work a few hours a day and he can't on that med.
He has also tried acupuncture and that helped . You might look up accurpunture for neck dissection pain on internet , they have had studies on it. It works for some people. Don't think everyone has the pain he does. Your husband is just a few months out of surgery so I'm sure he will be fine. We are just happy he is here with us and cancer free !!
Keep it touch and good luck to both of you.
Lots of love,
Valerie

neck dissection questions
Hello everyone,

I have been searching for help with Radical Neck Dissection and Laryngectomy Stoma. My husband has been battling tongue cancer. He has already had 2 surgeries and gone through chemo and radiation treatments. The Stanford Tumor Board is recommending a full glossectomy, radical neck dissection and laryngectomy stoma. We would greatly appreciate any advice on the post op recovery phase and what to expect afterwards for the following months to years. He is 48 years young. We send all of you much love & prayers. xoxo

Angel6

vsudd said:

neck dissection Pain
Hi Julie, I am so glad you answered my post. My husband didn't need any meds till about 5 months after surgery. That is when the pain started, he does have shoulder pain also. A neurologist told us he thought it was nerve damage from the radiation pellets they gave him after the surgery not the surgery it self. He said the pellets take a while to go through the body and that is why no pain at first. He has little strength in right arm but I do notice its getting a little better. He takes hydrocodine ever 4 to 6 hours during day. At night he takes neuron tin ,which is same type of drug as lyrica. He wasn't able to take the lyrica it made him hyper. He was very uncomfortable at night until he took the nerontin, it helps him sleep and he has no pain during night. The pain doctor is trying to get him to take neurontin 3 times a day but it makes him very sleepy so we are still working on that. He wants to work a few hours a day and he can't on that med.
He has also tried acupuncture and that helped . You might look up accurpunture for neck dissection pain on internet , they have had studies on it. It works for some people. Don't think everyone has the pain he does. Your husband is just a few months out of surgery so I'm sure he will be fine. We are just happy he is here with us and cancer free !!
Keep it touch and good luck to both of you.
Lots of love,
Valerie

neck dissection questions
Hello everyone,

I have been searching for help with Radical Neck Dissection and Laryngectomy Stoma. My husband has been battling tongue cancer. He has already had 2 surgeries and gone through chemo and radiation treatments. The Stanford Tumor Board is recommending a full glossectomy, radical neck dissection and laryngectomy stoma. We would greatly appreciate any advice on the post op recovery phase and what to expect afterwards for the following months to years. He is 48 years young. We send all of you much love & prayers. xoxo

vsudd

Angel6 said:

neck dissection questions
Hello everyone,

I have been searching for help with Radical Neck Dissection and Laryngectomy Stoma. My husband has been battling tongue cancer. He has already had 2 surgeries and gone through chemo and radiation treatments. The Stanford Tumor Board is recommending a full glossectomy, radical neck dissection and laryngectomy stoma. We would greatly appreciate any advice on the post op recovery phase and what to expect afterwards for the following months to years. He is 48 years young. We send all of you much love & prayers. xoxo

neck dissection questions
Hello Angel6. My husband had a radical neck dissection in May 2010. He had pharyngeal cancer in 2006 in fact we found out Labor Day weekend of 2006. He went through 5months of chemo and radiation, we thought everything was fine and all his check ups were clear. But he felt a lump and long story short it was back. They decided the only thing to do was the dissection. He was in surgery for 8 hrs. He really did well with the surgery. He was eating the next day , he was walking around in 2 days. He did have a radical surgery. They removed all the lymph nodes and jugular, muscle from the neck, took out the pectoral muscle and put it in his neck. I believe they had to do this to save him. He is going to work but he does have pain and we hope one day it will go away. But he is alive and that is all that matters. I know a lot of people don't have any pain, so every one is different. It is frustrating because not many people know or have had this surgery so you don't really know what is normal . Post op was really not bad, I think the radiation was the worse. I hope this helps. Much love and prayers to you and your husband. I know he will do fine.

Valerie

sweetblood22

vsudd said:

neck dissection questions
Hello Angel6. My husband had a radical neck dissection in May 2010. He had pharyngeal cancer in 2006 in fact we found out Labor Day weekend of 2006. He went through 5months of chemo and radiation, we thought everything was fine and all his check ups were clear. But he felt a lump and long story short it was back. They decided the only thing to do was the dissection. He was in surgery for 8 hrs. He really did well with the surgery. He was eating the next day , he was walking around in 2 days. He did have a radical surgery. They removed all the lymph nodes and jugular, muscle from the neck, took out the pectoral muscle and put it in his neck. I believe they had to do this to save him. He is going to work but he does have pain and we hope one day it will go away. But he is alive and that is all that matters. I know a lot of people don't have any pain, so every one is different. It is frustrating because not many people know or have had this surgery so you don't really know what is normal . Post op was really not bad, I think the radiation was the worse. I hope this helps. Much love and prayers to you and your husband. I know he will do fine.

Valerie

Valerie, I didn't realize
Valerie, I didn't realize your husband's surgery was that extensive. I only had a modified neck dissection, 23 lymph nodes and my left salivary gland, I still have daily pain, and stiffness in my neck, as well as issues with my left arm, so I imagine with as extensive as your husband's surgery was, I makes sense that he would still have pain. I still have times, though not as much as last year, where I will have burning nerve pain, or sharp pains, wicked quick nasty sharp pains where my surgery was. More often, I have creepy crawly feelings on that side, that don't really hurt, but they don't feel good either. There is a little numbness left. I have had bugs crawling on me a couple times out side, a yellow jacket once, and a spider, and my friends were like- "How can you not feel that?!" I'm trying to tell them it always feels like something is crawling on me so I try and ignore it. Lol

Hoping he will have continued improvement.

Hondo

Hi Valerie

Great to have you with us, I did not do the neck dissection I just did the rad to the neck in hopes that it would kill the C, and it looked like it worked for me. On the pain sorry to say but it is there for life as part of our new normal. My C started in 2002 and I been treated in 2004 and 2005 when it came back for a rematch, but been doing well so far. What I have found out is the longer I live the more side effects I get, I too ask the doctors and like you said they can’t answer.

I don’t like drugs so what I do it to use the ones that give me the less side affects and still do the job of killing the pain. I was on the Lara tabs and Oxy cotton but got off of them as I did not need anything like that. Now I live on two or three Tramadol 50Mg a day, it is just enough to keep the edge off the pain and lets me continue to work as normal. I work as a Maintenance Manager for a Diving company a have been here for over 22 years. I love what I do and enjoy coming in to my office everyday and I thank God for his kindness in blessing me to work for a great company like this.

Hope this help and welcome to the family
Hondo

juliepearson

vsudd said:

neck dissection Pain
Hi Julie, I am so glad you answered my post. My husband didn't need any meds till about 5 months after surgery. That is when the pain started, he does have shoulder pain also. A neurologist told us he thought it was nerve damage from the radiation pellets they gave him after the surgery not the surgery it self. He said the pellets take a while to go through the body and that is why no pain at first. He has little strength in right arm but I do notice its getting a little better. He takes hydrocodine ever 4 to 6 hours during day. At night he takes neuron tin ,which is same type of drug as lyrica. He wasn't able to take the lyrica it made him hyper. He was very uncomfortable at night until he took the nerontin, it helps him sleep and he has no pain during night. The pain doctor is trying to get him to take neurontin 3 times a day but it makes him very sleepy so we are still working on that. He wants to work a few hours a day and he can't on that med.
He has also tried acupuncture and that helped . You might look up accurpunture for neck dissection pain on internet , they have had studies on it. It works for some people. Don't think everyone has the pain he does. Your husband is just a few months out of surgery so I'm sure he will be fine. We are just happy he is here with us and cancer free !!
Keep it touch and good luck to both of you.
Lots of love,
Valerie

neck dissection
hi

Thanks for getting to me much appreciated , it is still early days and since i last wrote we have been to see our physio therapist.
She has advised us the reason why he is getting so much pain is because his nerves have been cut the muscle around his shoulder blade are not working hence the pertruding bone.

We have been given plenty of exercises to do to try and improve all aspects of his neck shoulders and arms however she told us not to hope too much as he may never get full use back in this arm. It has put my husband on a downer as we knew he would lose the strength in his other arm as this is the one the rebuilt his mouth with but seems its prob gonna be the two but like i have said at least he is still alive n cancer free at the minute.

We are not going to worry about getting addicted to the meds at the minute just getting them right to reduce the pain sorry for rambling again but its great to talk to someone that understands i feel us caregivers feel so helpless at times but also i feel like its my illness too if that makes sense.

speak soon love to you both

Julie n Neil

D Lewis

Hal61 said:

Julie n Neil
Hi Julie, Neil is still pretty fresh, and had more done by far than I did. He'll need to take his time, and you with him. But, to answer best I can, any real pain only lasted a month or so. I had dull aching for a number of months, but not bad. I took vicodin, like a lot of people here have or do. At first I had a hard time lifting my left arm very far--mine was all left side. I noticed when I went to the drive-through ATM I could hardly manage to push the keys. That got considerable better after 5 or 6 months, and my arm goes up much easier now.

But that is a side effect my surgeon mentioned before the procedure, and the severity or limitation can include the ongoing inability to lift that arm very high. You won't know for awhile though, because it took like I said 5 or 6 months for very good motion for me, and it's still not easy as my right arm.

Yeah, the shifted bone thing. That shoulder area ached too for several months, but it doesn't bother me much at all after a year from surgery, and I think got better after 6 months or so. But it's still out of whack. I had lymph-edema massage that didn't do a lot, and am not going to worry about getting my shoulder blade to straighten out. As said, my surgeon said in his experience therapy doesn't shift them back. He could be wrong, but it's not a big problem for me.


best to you and Neil
Hal

I've got the shoulder thing going on, too
I aways figured this was an effect of the radiation, as my surgery wasn't all that extensive. I've been wondering about chiropractic, but no way am I going to let my old Chiro crack my neck like he did pre-c. My head would probably break off. Or, something vital might rupture... eeeeeeeeek.

Deb

vsudd

juliepearson said:

neck dissection
hi

Thanks for getting to me much appreciated , it is still early days and since i last wrote we have been to see our physio therapist.
She has advised us the reason why he is getting so much pain is because his nerves have been cut the muscle around his shoulder blade are not working hence the pertruding bone.

We have been given plenty of exercises to do to try and improve all aspects of his neck shoulders and arms however she told us not to hope too much as he may never get full use back in this arm. It has put my husband on a downer as we knew he would lose the strength in his other arm as this is the one the rebuilt his mouth with but seems its prob gonna be the two but like i have said at least he is still alive n cancer free at the minute.

We are not going to worry about getting addicted to the meds at the minute just getting them right to reduce the pain sorry for rambling again but its great to talk to someone that understands i feel us caregivers feel so helpless at times but also i feel like its my illness too if that makes sense.

speak soon love to you both

Julie n Neil

Neck Dissection Pain
Sounds like you have a good physical therapist . I am sure he will get better with that. My husband went through a depression this winter when he didn't see much improvement. He has always been a very positive person and had to keep me positive but now its up to us, the care giver. This site helped me a lot . Reading about all the things everyone has been through. I am very glad I found it. I read on one of the post that it takes quite a long time, a couple of years to get over this surgery. I was very grateful to read that. Once my husband realized this he is his back to his old up beat self. We are also not worrying about addiction because the Dr. says not to and no one should have to live in that much pain. We will take it day by day and this summer was a lot better than last. I do feel helpless too, when he has a bad day, sometime I think its harder on me at least emotionally. Keep the faith and God bless you both and stay in touch.

Valerie