Neck dissection pain

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 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

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 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.

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