Radical Neck Dissection

Lisa I.

My husband will undergo a radical neck dissection in a couple days. He completeted 35 radiation treatments with 5 sessions of chemo (Cisplatin) in mid October, 2017. He was diagnosed with P16+ cancer with no site of origin found, stage III. He underwent removal of tonsils and 38 other biopsies from base of nasal cavity to base of throat. Needle biopsies identified type. The tumor to be removed is in a cluster of lymph nodes in the left mid-neck and not as small as they had hoped but feel the time is right to remove it. Can anyone provide info on what to expect for the healing timeline and repercussions from this surgery? We are both scared and very worried. Thank you!

DanceSkater

Left Radical Neck Dissection

Hi Lisa -

When I had my surgery, June 6 2017, I was 68 years old and weighed 130 lbs.  I had finished 35 rads and 8 infusions of Erbitux on June 6 2016.  Please remember that the actual surgery is always a little different for everyone as well as the side effects and recovery.

I had very little pain after the surgery.  I took nothing for pain after I left the hospital.  I had 2 drain tubes after the surgery and both were removed before I left the hospital.  It did not hurt to have them removed.  I do not have as much mobility in my left arm as I had before the surgery and did have physical therapy for it.  I can't turn my head quite as far in any direction as I could before the surgery  (not terrible).   

The worse two things for me is I feel I have less saliva production than I had before the surgery, which was already bad because of the radiation, and my ability to swallow worsened.   I am using a feeding tube.  I could probably get rid of the tube and live on smoothies and VERY soft foods but I'm not ready to do that.  I can eat VERY soft things, like yogurt and creamy soups) but it's a chore.  I have not seen anyone else post that they have had these 2 problems after dissection surgery.  A nerve was damaged and my speech has a little bit of a lisp at times.

Unlike many others, I've had no problems with lymphedema.  The therapist said it could happen any time but it hasn't happened yet.

I recall that the doctor did not want me to drive for a while nor do any heavy lifting nor physical work.

I'm doing fine.  I just drove myself from Michigan to Florida and back !!   (1200 miles in each direction)

If you have any specific questions, feel free to ask.  Best wishes to your hubby !!

Jan

 

tommyodavey

Depends

My doctor told me it wouldn't involve much pain and he was right. Didn't even need pain meds for my right neck radical dissection 5 years ago.  The only issue was him having to lift a nerve to get to the cancer.  He didn't cut it but it made my right arm feel a sharp pain for almost a year.  Not really that bad.  It's fine now but nerves don't like to be messed with.  I'm very grateful he didn't cut it.

He cut a lot of other muscles and tendons I think.  My head now looks a little crooked but no one else notices it but me.  A little lymph node swelling but is still going away.

So what I'm saying is it was no big deal for a lot of us.  He'll be fine once the swelling goes down.  I can't even see the scar anymore because he cut me right on a major wrinkle line.

Lisa I.

tommyodavey said:

Depends

My doctor told me it wouldn't involve much pain and he was right. Didn't even need pain meds for my right neck radical dissection 5 years ago.  The only issue was him having to lift a nerve to get to the cancer.  He didn't cut it but it made my right arm feel a sharp pain for almost a year.  Not really that bad.  It's fine now but nerves don't like to be messed with.  I'm very grateful he didn't cut it.

He cut a lot of other muscles and tendons I think.  My head now looks a little crooked but no one else notices it but me.  A little lymph node swelling but is still going away.

So what I'm saying is it was no big deal for a lot of us.  He'll be fine once the swelling goes down.  I can't even see the scar anymore because he cut me right on a major wrinkle line.

Radical Neck Dissection

Thank you Tommy, I appreciate you sharing. We are concerned about the nerve as my husband has suffered with this horrible pain since the tumor first developed. They are unsure of how the tumor and nerve are placed And won’t till they get in there. We pray there is relief and not exasperating it! Good news and glad you are doing well. We pray Tony will also have positive results. 

Lisa I.

DanceSkater said:

Left Radical Neck Dissection

Hi Lisa -

When I had my surgery, June 6 2017, I was 68 years old and weighed 130 lbs.  I had finished 35 rads and 8 infusions of Erbitux on June 6 2016.  Please remember that the actual surgery is always a little different for everyone as well as the side effects and recovery.

I had very little pain after the surgery.  I took nothing for pain after I left the hospital.  I had 2 drain tubes after the surgery and both were removed before I left the hospital.  It did not hurt to have them removed.  I do not have as much mobility in my left arm as I had before the surgery and did have physical therapy for it.  I can't turn my head quite as far in any direction as I could before the surgery  (not terrible).   

The worse two things for me is I feel I have less saliva production than I had before the surgery, which was already bad because of the radiation, and my ability to swallow worsened.   I am using a feeding tube.  I could probably get rid of the tube and live on smoothies and VERY soft foods but I'm not ready to do that.  I can eat VERY soft things, like yogurt and creamy soups) but it's a chore.  I have not seen anyone else post that they have had these 2 problems after dissection surgery.  A nerve was damaged and my speech has a little bit of a lisp at times.

Unlike many others, I've had no problems with lymphedema.  The therapist said it could happen any time but it hasn't happened yet.

I recall that the doctor did not want me to drive for a while nor do any heavy lifting nor physical work.

I'm doing fine.  I just drove myself from Michigan to Florida and back !!   (1200 miles in each direction)

If you have any specific questions, feel free to ask.  Best wishes to your hubby !!

Jan

 

Radical Neck Dissection

Thank you Jan! Knowing how smoothly your pain management went and the drain tubes too, is Hopeful. Congrats on your driving trip! Good for you! Yeah!

My husband has lost 64 lbs since this all began in June, 2017. He is 6’ tall and so, this has been drastic. He was 68 when diagnosed, turning 69 in February, 2018. Treatment (biopsies, tonsillectomy, 2 compromised molars and a wisdom tooth removed, chemo port and feeding tube insertion, radiation and chemo) was completed Oct, 2017. He was recovering, doing well and we began seeing the lymphedema specialist in Jan, 2018. The nerve pain was wretched but the PT was helping reduce that. She has been wonderfully helpful.

My husband, Tony, has been suffering so badly with lymphedema, so, we are thinking it will continue thru this surgery and after. I surely hope that his saliva won’t be more severely impacted as that has just begun to return a little. His taste has mostly returned.

We are prepared for the soft diet again but Tony also has kept his feeding tube, so we are prepared and expect to use that too. We Pray it won’t be a need beyond a few weeks, as are the Drs. All depending on swelling. 

How big was your tumor when they removed it? T’s went from. 23 to 8 but they wanted it a 5. So, surgery may be harsher than they hoped. We really don’t have a clue what to expect. As there are so many unknowns. This is frightening.

I thank you for your positive and hopeful response! I wish you well and continued improvement. I sure hope you can get some relief for the swallowing - what are the Drs saying about that?! is there treatment to help with improvement?

hugs, Lisa

Lisa I.

tommyodavey said:

Depends

My doctor told me it wouldn't involve much pain and he was right. Didn't even need pain meds for my right neck radical dissection 5 years ago.  The only issue was him having to lift a nerve to get to the cancer.  He didn't cut it but it made my right arm feel a sharp pain for almost a year.  Not really that bad.  It's fine now but nerves don't like to be messed with.  I'm very grateful he didn't cut it.

He cut a lot of other muscles and tendons I think.  My head now looks a little crooked but no one else notices it but me.  A little lymph node swelling but is still going away.

So what I'm saying is it was no big deal for a lot of us.  He'll be fine once the swelling goes down.  I can't even see the scar anymore because he cut me right on a major wrinkle line.

Thank pyou!

Tommy, thank you for your reassurance and sharing your positive outcome. My husband has suffered with terrible nerve pain since this all began as the tumor impacts the nerve. The Drs are unsure what the extent is. We are hopeful removing it will give him some relief. However, we are prepared for some impact... whether it is continuing or if that nerve is cut. 

He has had serious lymphedema and seeing a specialist to help with that. We were seeing improvement and some relief from the pain with the massaging and exercises. He will resume this after surgery when we get the clearance from the surgeon. 

Did they find site of origin for you? Tony had a large radiation field as his was stage 3 with cluster of nodes encompassed with this tumor and underwent a tonsillectomy and 38 biopsies, with no origination site found. 

Your positive response is wonderful and we are so pleased you are doing so well! Congratulations!!! 

Thanks again, Lisa

Curlyn

Hi Lisa, I had a very

Hi Lisa, I had a very extensive neck dissection but prior to chemoradiation. I did save photos because it was so extensive. There are no photos online and I wanted to know, so saved mine. There was no post op pain as nerves were numb. Healing was quick but it will probably be slower on irradiated skin. In fact, I had no pain until I recd the chemoradiation. It's been 7 months and I have recovered only a small amount of sensation to my right neck and lower face but this will be permanent. The nerve deficit to movement in my lower face has recovered fully. The scar is not that noticeable and I have minimal lymphedema at present. I do all of my exercises, have good days and bad (16 weeks from chemoradiation), go to gym. I look like me again. My surgeon was excellent.

SuzJ

No pain

Really none, the nurses kept offering me pain meds, and I looked at them like they were nuts.

 

I was up and walking to the bathroom with no help (I got into trouble for that) but I really did feel fine.

 

I am told I have one of the most beautiful scars they have seen - sounds crazy, right?

 

I have pics from before after, at different times, and cant believe how good it looks now.

 

I also bought a compression thingy for nights (NO WAY would I let anyone see me in that thing!) But it does it's job, and my neck swelling is almost gone, and I now have a jaw bone again!

 

As I said,no pain, but when they offer the laxative and stool softner, say yes. - trust me - just say yes.

Lisa I.

Curlyn said:

Hi Lisa, I had a very

Hi Lisa, I had a very extensive neck dissection but prior to chemoradiation. I did save photos because it was so extensive. There are no photos online and I wanted to know, so saved mine. There was no post op pain as nerves were numb. Healing was quick but it will probably be slower on irradiated skin. In fact, I had no pain until I recd the chemoradiation. It's been 7 months and I have recovered only a small amount of sensation to my right neck and lower face but this will be permanent. The nerve deficit to movement in my lower face has recovered fully. The scar is not that noticeable and I have minimal lymphedema at present. I do all of my exercises, have good days and bad (16 weeks from chemoradiation), go to gym. I look like me again. My surgeon was excellent.

Thank YOU Curlyn!

What good news and Am so happy for you!

My hubby underwent his surgery last Friday. It was more extensive than expected as they had to remove that nerve and a muscle that were encased in tumor and scar tissue from treatment. He has had manageable pain and was released yesterday. He has a drain but they are saying it will come out Wed. It has helped tremendously with the lymphedema., which has suffered from. We are rather worried about that returning in a huge way and impacting his healing. 

Tony has the numbness and we do know this will be permanent as well as other issues with the nerve removal. However considering this nerve had been SO horribly painful, the numbness is welcome. 

We are thankful for a great surgical team and his ENT team. We will continue with the PT and they will add OT to the regime when he heals a little more. We now will follow the exercise plan they gave us in the interim and start our walking again! 

Thank you for your positive response! 

Lisa I.

Lisa I.

SuzJ said:

No pain

Really none, the nurses kept offering me pain meds, and I looked at them like they were nuts.

 

I was up and walking to the bathroom with no help (I got into trouble for that) but I really did feel fine.

 

I am told I have one of the most beautiful scars they have seen - sounds crazy, right?

 

I have pics from before after, at different times, and cant believe how good it looks now.

 

I also bought a compression thingy for nights (NO WAY would I let anyone see me in that thing!) But it does it's job, and my neck swelling is almost gone, and I now have a jaw bone again!

 

As I said,no pain, but when they offer the laxative and stool softner, say yes. - trust me - just say yes.

Thanksanoth SuzJ

Thank you for the positive report SuzJ! My husband had his surgery last Fri and is doing amazingly well, considering they had to remove that main nerve down the neck and shoulder AND a muscle. of course, just having that behind him is HUGE, mentally! 

He has had to take pain meds. AND yes, he is taking the laxatives!!! We have been down this road with previous surgeries so, we’re prepared for that. LOL But the pain isn’t nearly as bad as he had expected!!! 

Another friend who underwent this surgery also showed us HIS scar which was pretty hard to see! So am happy yours is beautiful too! 

The surgeon assured us he did his best work and the incision around his neck won’t be too noticeable, however, the descending scar, from this neck one to base of the neck (about 2” long, like a T) may be. BUT heck, after all he has been thru, who cares?!? Am just thankful he is feeling and getting better!

You talked of the the “compression thingy” (we call this thing a Jaw Bra!), Tony has had one for months and wears it up to 5 hours a day as part of the treatment with the lymphedema specialist he has been seeing. He was told NOT to wear this at night. Are you under the care of a lymphedema specialist or doing this on your own? How long have you been doing this at night? Tony doesn’t wear it in public either, just here around the house and when we are alone. 

Thanks again, Lisa I.

Curlyn

Lisa I. said:

Thank YOU Curlyn!

What good news and Am so happy for you!

My hubby underwent his surgery last Friday. It was more extensive than expected as they had to remove that nerve and a muscle that were encased in tumor and scar tissue from treatment. He has had manageable pain and was released yesterday. He has a drain but they are saying it will come out Wed. It has helped tremendously with the lymphedema., which has suffered from. We are rather worried about that returning in a huge way and impacting his healing. 

Tony has the numbness and we do know this will be permanent as well as other issues with the nerve removal. However considering this nerve had been SO horribly painful, the numbness is welcome. 

We are thankful for a great surgical team and his ENT team. We will continue with the PT and they will add OT to the regime when he heals a little more. We now will follow the exercise plan they gave us in the interim and start our walking again! 

Thank you for your positive response! 

Lisa I.

Happy to hear this. Those

Happy to hear this. Those gentle stretching exercises are so important in maintaining movement, esp now! Remember that there could be nerve pain from the dissection eventually and some stiffness. Mornings were the worst for me. I still take ibuprofen or tylenol occassionally. My doctor also prescribed Lyrica for the nerve pain as it could be taken when I needed it...just some extra tidbits to watch for.

SuzJ

Yep, Kim!

My Lymphadema person is called Kim, she's based at VCU in Richmond and part of the huge "team" I get to see.

 

I can wear it in the evenings if I want, but, I just wear it at night. And.. to answer, always at night. I got it in.. um.. January? 3rd week?

The chin strap one, well that was kinda hilarious, it was a case of "when I wake up, where will it be" (hint - never under my chin)

This Jobra one? seems to stay on a lot better, does wonders for my hair (sarcasm there) but as I said, my swelling is almost non existant - if I work out how, I'll post pics of before and after, my neck has shrunk literally, inches.

tommyodavey

Lisa I. said:

Thank pyou!

Tommy, thank you for your reassurance and sharing your positive outcome. My husband has suffered with terrible nerve pain since this all began as the tumor impacts the nerve. The Drs are unsure what the extent is. We are hopeful removing it will give him some relief. However, we are prepared for some impact... whether it is continuing or if that nerve is cut. 

He has had serious lymphedema and seeing a specialist to help with that. We were seeing improvement and some relief from the pain with the massaging and exercises. He will resume this after surgery when we get the clearance from the surgeon. 

Did they find site of origin for you? Tony had a large radiation field as his was stage 3 with cluster of nodes encompassed with this tumor and underwent a tonsillectomy and 38 biopsies, with no origination site found. 

Your positive response is wonderful and we are so pleased you are doing so well! Congratulations!!! 

Thanks again, Lisa

Site

Yes, it was on the base of my tongue.  With Tony, let's hope they don't have to cut the nerve.  It is rare when they do it and the doctors try very hard not to.  He may get lucky and just have them move the nerve like me with only a years discomfort.  After going through all the pain we do a year is nothing. It is now a distant memory.  

BeenThereDoneThat

Sending Positive Energy Your Way!!

Haven't been on this site in 10+ years. Back to tell you that things will work out. I had my radical neck operation in January of 2004. I am here, happy, and healthy. 

Sounds like he is in good hands with you taking care of him. I always said that I listened to the doctors most of the time, but to my wife ALL the time!

I had the whole deal. Surgery, then radiation and chemo at the same time. Things have changed a lot in treatments. Just take things as they come and stay positive.