Hi, I'm 5 months post radiation/chemo treatment for right tonsillar carcinoma with metastasis to my right neck lymph nodes. I have not had any surgery at this point.

At my first follow up, at about 4.5 months, I was told that I have residual swelling in my neck, and a needle biopsy was inconclusive but suspicious for residual cancer in my lymph nodes in my neck, and I've been referred for partial neck dissection to remove any involved lymph nodes.

Is there anyone on here who is willing to share their experience with similar surgery? Side effects? Recovery time? Relative to radiation/chemo treatment (as bad, nothing like it?).

In my case I've already had the radiation, so my surgery cannot be followed up with additional radiation.

Thank you,

-Seth

Hi Seth. I can only share with you my aunt's experience. The neck dissection (one side only) was not nearly as bad as the after effects of radiation. She came through the surgery very well at age 63 and her only complaints today are related to her speech from the tongue flap (I think she sounds completely normal) and from the radiation. Her only issue related to the neck dissection is a bit of stiffness in the neck.

D

Thank you very much. I've just now spoken with my surgeon's office manager and she told me that typical post-surgery pain management is via nothing more than Tylenol 3, which suggests that the surgery is way more manageable than the radiation was. I ended up on, probably too much, Fentanyl (an alternative to morphine) during and following my radiation treatments. I may have reacted badly to that opioid, and the addictive issues are significant.

Thanks again.

-Seth

Seth,
I have had two neck dissections, two different surgeons, 4 years apart. In comparison to radiation, this surgery is a walk in the park, although it is still a long surgery. I was in the hospital for 5 days, and had no pain but looked like hell. However, the side effects can be bad depending on what muscles, nerves get cut. Make certain that the surgeon doing this has done so many 'that he can do them in his sleep'. You will most likely need several months of PT following the surgery to get you arm to work properly.

Ask your surgeon what muscles, nerves he will need to cut, if any, and what type of temporary and permanent side effects you will have. Do NOT let them remove your submandible saliva gland unless absolutely necessary. I have no permanent side effects from my second neck dissection, but still cannot get my arm over my head from my first. I also had a neuroma that took about 5 years to resolve which left my ear and neck numb on the right. I still cannot look over shoulder to the right so parallel parking is a problem. It is also possible that the dental surgeon caused my head rotation problem when he extracted my rear teeth. I don't remember complaining about that until after the dental surgery.

So it boils down to which sections is he going to remove and does he need to cut any muscles or nerves that are going to effect your ability to move your arms? That are many variations on neck dissections so find out which one you will have. Keep us posted.

Take care,
Eileen

Seth, agree with everyone that neck dissection recovery is nothing compared with radiation. But there are definitely nerve-related side efx that come into play, and Eileen has sage advice for you. In my case I've been left with the left side of my tongue nearly completely numb. After more than 19 months post-op I have a feeling it's permanent. And neck stiffness too, but that's manageable.

Keep us posted, and courage!
David 2

Good advice from all Seth. I think the Drs aren't really sure what will be cut until they make the 1st one and check things out. Good luck and prayers to you.

Thanks everybody. I had my pre-operation assessment this morning and it went fine, no big surprises. It was confirmed that the final extent of the partial neck dissection will be determined once they've zipped my open. I was told this will be a bit more tricky since I've already had my radiation and there is likely to be some scar tissue. Hopefully they don't have to do any significant nerve damage and they can get it all out (if there's any to be gotten out).

I'll have this surgery on Monday, 11 October (4 days from now). They say I'll be in the hospital for 1 to 3 nights, depending.

-Seth

And you'll have several thousand of us in there with you in spirit, Seth. So don't crowd the bed, ok?

D2

18 months on from my surgery i still have odema under jawline , more pronounced on left hand side and the leathery tight feel. for 12 months i had pains in my uppper right arm and initially told it was permanent nerve damage and i couldnt move it very freely at all without intense belts of pain , then my surgeon referred me to a pshyio and 3 weeks after doing daily routine exercises its back to about 85 % . havent dont any for a couple of months and its just starting to hurt slightly so will have to get it back into my daily routines again. have nerve damage to lower lip on my left side and may need a minor corrective surgery but dr & i agreed to wait to see what its like when odema fully subsided.

hmm I had no idea about the potential nerve damage - how common is this? I'm trying to prepare myself for a possible neck dissection (will find out tomorrow if I need one or not).

I think it's pretty common. I have permanent damage to my right shoulder but it isn't really painful, just have lost some function and feeling in that shoulder. I also have the lip thing making my mouth look crooked kind of like I've had a stroke. But as far as recovering from the surgery, I was home from the hospital in three days and Tylenol was all I took. My bigger problems are as a result of radiation.

Hi Seth,
I must have missed your earlier post as I would have responded.
My experience does not seem to be as bad as some others however as you had the radiation first that may have been an issue.
As your surgery was nearly 1 month ago can you let us know how it went and post if you have any questions?
Gabriele

I had a left neck dissection 18 months ago. I've bounced back quite well. The surgery wasn't too bad. INITIALLY I looked pretty rough. Following the neck dissection, my smile was completely crooked. A nerve in my back/shoulder area was cut so I also had a drooping shoulder. Because of the nerve being cut, I lost a great deal of muscle and movement in that shoulder and upper arm.

NOW I am back to my pre-neck dissection self. The scar on my neck is the only way you would know I ever had surgery. I completed 28 physical therapy sessions to work on my drooping shoulder, range of motion, strength, etc. They payed off. And although I thought my smile was ruined forever, I am happy to report that it is back and probably even bigger than before! The only difference to report is that I've lost most skin sensation on the left side of my neck between my jaw line and collar bone (e.g. I can feel pressure on my neck but don't feel the touch of fingers on my skin).

I strongly encourage as much physical therapy as possible. It helped me bounce back without any evidence of surgery. And make sure you do any and all exercises that may be recommended by doctors or physical therapists.

Good Luck!

Update time! Sorry to be slow to follow up. I had my neck dissection here in London (UK) a month ago, it went well and they found very little to remove, so my surgery was "bog simple" and the extent was minimal, meaning I've ended up with almost no nerve damage at all; I've only ended up with a numb area under my right jaw line, down to the horizontal incision line. They gave me some stretches to do, but I've not needed any phisio, and now, a month in, I have minimal stiffness or soreness.

The really good news is that the material they did remove only contained dead cells; no viable cancer at all! So, my cancer is in clinical remission (they won't use the "cured" word for five years). This is the best possible outcome at this time, and means my radiation/chemo in Canada was successful.

The numb area under my jaw line has already shrunk noticeably. It's still quite odd-feeling to touch it, and shaving gives me the creeps, but as things go this is not so bad.

Regarding Monicacc's question about how common nerve damage is, I'm afraid that will entirely depend on how far they decide to go in removing material, and I understand this ultimately is decided during surgery. The more they remove, the more potential for trauma or damage to nerves. In my case I was fortunate, in that they found almost nothing to remove.

For me, ultimately, the neck dissection has been much less of an issue than chemo/radiation treatment, which I had first, ending in late April 2010. I didn't have significant pain following surgery (only required the local equivalent of Tylenol and Ibuprofen), although the drain was pretty gross. They removed that after two days in my case, and sent me home. A week later they removed the tape over the surgery scar (and I was pleasantly surprised at how little the scar was visible already at that point) *and* gave me the good news about the material they removed.

I'm having much more trouble with the residual side-effects of my radiation/chemo treatment: dry mouth (much more trouble than I would have imagined), numb soles of feet, changes to digestion, sensitive fingernails(?), sensitive hair follicles(?), dry skin(?), vision changes (maybe just age?), trouble with concentration, trouble with optimism (lack thereof, although this may be related to other life changes). I find myself in London because this is where my wife has professional employment, but I'm having real trouble fitting myself into this surprisingly foreign place, and of course, employment prospects seem very grim right about now.

I can only give it time, and try to be a good house-husband. Oh, and try to get some exercise, which has historically been my answer to life's challenges. I've started climbing the stairs in the 11-floor building we live in, and jog/walking along the Thames. I'm quite out of shape after 8 months of inactivity.

I had some vision changes after my neck dissection surgery...I can't tell if it was going a week without my glasses or if, because of the tightness of the scar, I can't get my eyes to use the area of my glasses that are the no-line bifocal area. :o) Sorry to hear about the many sensitivities - hope they go away! I had the surgery in late Sept. and other than the scar being tight because of now doing radiation, it wasn't bad at all. Yes, the numbness under the chin is weird! :o)

Michele in IL

Very interesting to read all these varied reactions to the surgery. In my case I was left with a tongue that now, 20 months after the operation, is still numb on the left side. The left side facial neuropathy is better but also still far from normal. None of my docs seem to know if I'll ever regain feeling in the tongue. It's a strange sensation and I know a lot of you have similar strangeness and worse.

But very glad to be alive!
D2

Monica, don't know if this is reply is too late to advise you but I had a neck dissection done at the same time as a partial glossectomy(about 50% of my tongue) and graft of a flap from my arm. On discharge from hospital after ater about 10 days I could barely raise my arm to the horizontal at the side. A couple of months later afer some advice from a physio on exercises, I have complete mobility back. I had 22 lymph node removed so they poked around in there quite a bit but obviously avoided any damage to the accessory nerve that controls the shoulder muscle. Can't help with statistics. Its now 6 months on and my scar has healed beautifully. Neck is still strange to touch and some patches of numbness which have receeded over the months and I am told should improve still further.

Stily, so glad to see the update on your neck dissection and that you fared well. And a big YEEE- HAAA on the no-cancer findings!!