Neck dissection pain

vsudd

sweetblood22 said:

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.

Neck Dissection Pain
Hi Sweetblood, yes his surgery was very extensive. He also has the issues you have. Sometime he tells me he has a new symptom every week. LOL. I am glad to hear you have gotten better and your nerve pain is not as bad as it was. I am hopeing for the same for my husband. I do think he is slowly getting better, just wish he wouldn't have to take the pain meds but if he has too he has too. He goes to work for about 4 hours in morning ( that is the best time of the day for him) and comes home for lunch, takes a 2 hour nap, then back to work for a couple of hours . So I think he is doing well. Continue doing well !!

Valerie

vsudd

Hondo said:

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

neck Dissection Pain
Thanks for the reply, I am glad you were able to get off the meds. That is the one thing my husband wishes he could do . Like you he loves to work, in fact he was a workaholic before the cancer and if he was able, he would still be. He hates that the meds make him tired and sleepy but unfortunately he needs them. He works about 3or 4 hours in morning , comes home for lunch and a 2 hour nap and then back for a couple hours or until he gets to sore. We have our own business so he can come and go as he needs. He is lucky .

Hope you continue doing well.


Valerie

Hondo

vsudd said:

neck Dissection Pain
Thanks for the reply, I am glad you were able to get off the meds. That is the one thing my husband wishes he could do . Like you he loves to work, in fact he was a workaholic before the cancer and if he was able, he would still be. He hates that the meds make him tired and sleepy but unfortunately he needs them. He works about 3or 4 hours in morning , comes home for lunch and a 2 hour nap and then back for a couple hours or until he gets to sore. We have our own business so he can come and go as he needs. He is lucky .

Hope you continue doing well.


Valerie

Meds

Don’t e ashamed it is what we need to do to help us with being normal again, just another part of life. I too enjoy those naps and thinking about taking one right now.

Wishing you both well
Hondo

ktjt

Bi-lateral radical neck dissection
Hi Valerie,
30 some odd years ago my husband had a bi-lateral radical neck dissection, right side first six months later the left. the cancer was sent down from a tumor in the naso-pharanx. I'm not gonna lie, he still has pain. Sometimes its not so bad, sometimes it's pretty bad. However, he has learned to cope with it, through Meditation, he used to do bio-feedback, massage and yes the heating pad is often his best friend. I do work his neck but very gently. He has also been to several pain clinics. Yes, both his scapula dropped lower. I often give him massages sometimes just very, very light rubbing helps to soothe and relax. We had a fur coat that we cut the sleeves off of so its really soft sometimes we use that. It takes team work and a lot of love, compassion, and understanding, did I mention a sense of humor. We have raised two healthy children who are now 22 and 24, so we've had a full loving life since his surgeries. OH and we also have a hot tun that helps his pain especially in the winter time.
If you'd like to ask him more question please do not hesitate. If you want to communicate with him directly just let us know and I'll get his booty on here!
Karen

Pam M

sweetblood22 said:

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.

CreepyCrawlies
Exactly! With me, too, it usually isn't painful so much as creepy.

Pam M

ktjt said:

Bi-lateral radical neck dissection
Hi Valerie,
30 some odd years ago my husband had a bi-lateral radical neck dissection, right side first six months later the left. the cancer was sent down from a tumor in the naso-pharanx. I'm not gonna lie, he still has pain. Sometimes its not so bad, sometimes it's pretty bad. However, he has learned to cope with it, through Meditation, he used to do bio-feedback, massage and yes the heating pad is often his best friend. I do work his neck but very gently. He has also been to several pain clinics. Yes, both his scapula dropped lower. I often give him massages sometimes just very, very light rubbing helps to soothe and relax. We had a fur coat that we cut the sleeves off of so its really soft sometimes we use that. It takes team work and a lot of love, compassion, and understanding, did I mention a sense of humor. We have raised two healthy children who are now 22 and 24, so we've had a full loving life since his surgeries. OH and we also have a hot tun that helps his pain especially in the winter time.
If you'd like to ask him more question please do not hesitate. If you want to communicate with him directly just let us know and I'll get his booty on here!
Karen

Hey - ktjt
"30-odd years ago"?!? That makes you and hubby rock stars here. Woo Hoo! Sounds like you guys are a wealth of info for pain management post treatment.

sweetblood22

Pam M said:

CreepyCrawlies
Exactly! With me, too, it usually isn't painful so much as creepy.

Pam
Creepy crawlies. I cannot wear necklaces or have a shirt with a collar. Scarves and turtle necks are annoying now too.

It is a very strange feeling.

ktjt

Pam M said:

Hey - ktjt
"30-odd years ago"?!? That makes you and hubby rock stars here. Woo Hoo! Sounds like you guys are a wealth of info for pain management post treatment.

rock stars
I like that! Yes, we are def rock stars, most of the time..

vsudd

ktjt said:

Bi-lateral radical neck dissection
Hi Valerie,
30 some odd years ago my husband had a bi-lateral radical neck dissection, right side first six months later the left. the cancer was sent down from a tumor in the naso-pharanx. I'm not gonna lie, he still has pain. Sometimes its not so bad, sometimes it's pretty bad. However, he has learned to cope with it, through Meditation, he used to do bio-feedback, massage and yes the heating pad is often his best friend. I do work his neck but very gently. He has also been to several pain clinics. Yes, both his scapula dropped lower. I often give him massages sometimes just very, very light rubbing helps to soothe and relax. We had a fur coat that we cut the sleeves off of so its really soft sometimes we use that. It takes team work and a lot of love, compassion, and understanding, did I mention a sense of humor. We have raised two healthy children who are now 22 and 24, so we've had a full loving life since his surgeries. OH and we also have a hot tun that helps his pain especially in the winter time.
If you'd like to ask him more question please do not hesitate. If you want to communicate with him directly just let us know and I'll get his booty on here!
Karen

neck Dissection Pain
Karen, thank you for your story. I really appreciate a straight answer. It's nice to know what to expect. 30 years is awesome. I hope we have seen the last of the cancer and we also will have 30 years. I do think my husband is doing a little better. I was thinking last year at this time he couldn't even wear a shirt with a collar and now he can. Little things like that are an improvement. He got a pulley shoulder exercise that really seems to be braking up some of the scare tissue. It seems to be helping. The heating pad is always near his chair. He uses that a lot. We are not going to worry about pain meds because that is what he has to do, we can live with that. My husband too has seen my daughter graduate from college and walked her down the isle and we are very lucky. I am so glad you wrote . Thanks again and I will keep in touch.

Valerie

vsudd

ktjt said:

rock stars
I like that! Yes, we are def rock stars, most of the time..

Rock Stars
I agree, you two are Rock Stars !!!!!!

akotke

ktjt said:

Bi-lateral radical neck dissection
Hi Valerie,
30 some odd years ago my husband had a bi-lateral radical neck dissection, right side first six months later the left. the cancer was sent down from a tumor in the naso-pharanx. I'm not gonna lie, he still has pain. Sometimes its not so bad, sometimes it's pretty bad. However, he has learned to cope with it, through Meditation, he used to do bio-feedback, massage and yes the heating pad is often his best friend. I do work his neck but very gently. He has also been to several pain clinics. Yes, both his scapula dropped lower. I often give him massages sometimes just very, very light rubbing helps to soothe and relax. We had a fur coat that we cut the sleeves off of so its really soft sometimes we use that. It takes team work and a lot of love, compassion, and understanding, did I mention a sense of humor. We have raised two healthy children who are now 22 and 24, so we've had a full loving life since his surgeries. OH and we also have a hot tun that helps his pain especially in the winter time.
If you'd like to ask him more question please do not hesitate. If you want to communicate with him directly just let us know and I'll get his booty on here!
Karen

I know this post is a few
I know this post is a few weeks old but I had a radical neck dissection also. They removed the spinal accessory nerve, the jugular vein, and the sternoid mastoid muscle. My question is are there late term side effects to the surgery? Or is the pain and limited mobility in my shoulder as bad as its gonna get? I can live with this but am always worried about what the future holds in terms of all they did to me lol.

Hondo

akotke said:

I know this post is a few
I know this post is a few weeks old but I had a radical neck dissection also. They removed the spinal accessory nerve, the jugular vein, and the sternoid mastoid muscle. My question is are there late term side effects to the surgery? Or is the pain and limited mobility in my shoulder as bad as its gonna get? I can live with this but am always worried about what the future holds in terms of all they did to me lol.

Hi akotke
Nothing is old here, it is like fine wine just gets better with time

Keep posting
Hondo

luv2cut1

Same surgery
Pat had the exact same surgery 2 years ago. He does have some pain but not constant. He is not on pain meds but if he overdoes it or moves the wrong way it will really hurt for a while. Drs have also been vague with us. They say nerve damage is unpredictable and with the anatomy changes he is likely to have off and on pain. I just wish I knew if it was going to get worse long term.

Please keep us posted and let us know if you find out anymore information. We will do the same. So very glad your hubby is cancer free.

Myka

vsudd

akotke said:

I know this post is a few
I know this post is a few weeks old but I had a radical neck dissection also. They removed the spinal accessory nerve, the jugular vein, and the sternoid mastoid muscle. My question is are there late term side effects to the surgery? Or is the pain and limited mobility in my shoulder as bad as its gonna get? I can live with this but am always worried about what the future holds in terms of all they did to me lol.

Neck Dissection Pain
I am not an expert but have been searching for answers ever since my husband has had the surgery. I think you have been through the worst of it. I think you only get better with time.
God Bless,
Valerie

sweetblood22

vsudd said:

Neck Dissection Pain
I am not an expert but have been searching for answers ever since my husband has had the surgery. I think you have been through the worst of it. I think you only get better with time.
God Bless,
Valerie

Only getting better with time.
I really wish that were true. I started with severe neck and back spasms on Monday. I'm finally functional today. Unbelievable painful. I seem to be getting worse over time.

ggpierce

radical neck disection
I had this surgery done on my right neck in Jan of 09 I was in severe pain for a couple months. My surgeon told me part of the pain was from nerves growing back, it was a tingling pain running up my neck. After this much time has gone by I don't have regular constant pain, I just get sore easily and if I lift something too heavy I have a pain in that side of my neck. I feel like I get better with time. My biggest complaint after the two surgeries is the not being able to swallow very easily. I choke on things all the time and have gone to eating mostly things that will slide down.
Good luck with your recovery.

marymary2001

pain likely 1) neuro and or 2) ortho/rotator/ligament strain

hi - i love online groups bc discussions identify commonalities (the reality) faster & better than docs who rely on theory & probability. 

2001 i had mod rad lat neck dx. great dr at 

stanford. two 10 hr surgeries. chylous fistula required re sewing of all cuts. 

weeks later had killer pain ... drop to your knees in middle of grocery store type, 24-7. up all night for weeks, pain meds for an elephant, not helping. googled my a$$ off. brought info to dr ... rare neuro issue that he thought i "dont have ... very rare" was then determined to be it. nerves stay turned on instead of turnuing off at cut points. like permanently having a bleeding raw chopped off leg, but no one can see it. i was sent to pain mgmt clinic (beginning of end of life/hope) ... w my 8 mo old baby in my arms. 

 

dr researched neuro issue ... 2 versions ... i type lasts forever, the other magically turns off one day. must have had some luck bc one day instead of runnimg to swallow bucket o pain meds at 2.5 hr interval point to reduce excruciating pain ... i was suddenly lifted to normalcy... 

fast forward 11yrs ... rotator cuff issues, tearing. now in fla vs calif. less expertise of neck dissections. shoulder weakness caused rubbing, rubbing caused bones to build up calcium ... now spurs, which are causing tears. so i wonder if your husband has this. im an upper body lightweight so it took years of rubbing from running, ballet, handling two boys to get to me. but your husband could have it worse bc he is likely more robust in shoulder strenght etc (not my area of expertice!)