Rob

a google search turned up this interesting site on "frozen shoulder" FSS which basically says get PT. while my surgeon was able to avoid the SCM, I still had to take PT to avoid frozen shoulder. The good news is that PT has a great track record in healing this.
Hang in their brother,
Charm

I am the the original author of this thread and had the ND done this past week. It was a selective ND. Nine nodes were removed. Pathology was negative all around. I have full motion of my right arm. All nerves were preserved. The operation is very doable and now one week post the incision is almost healed. I just wanted to say that its not something to be afraid of. If it's indicated for your treatment don't hesitate, I've had teeth pulled that hurt more than this.

Rick,

If you had 9 nodes removed and they were all negative, my question is why did they recommend the ND in the first place? I mean were they all large? Did I already ask this question? Sorry post so much.

Rick

Very glad that your ND did not show any cancer even though that means you probably did not need a ND in the first place. That is consistent with the 50% figure of unnecessary ND in my response to your original post. However there isn't any good way that I know of to tell which 50% you are in before the ND.
Now that the surgery is over and you are recovering so well, ask your ENT for a script for physical therapy. Even when the operation goes so smoothly (mine did also), the trauma to the muscles and nerves that were preserved (they have to be moved around to get to the nodes) usually requires therapy to get them back in the game. Your other muscles will try to compensate but it's better to safe than sorry here.
Charm

Further update:

So my medical team unanimously recommended that I undergo a 2nd round of chemo-radiation therapy (CRT)... and I agreed. On Wednesday they'll do a "simulation" to start the planning process. Treatment will begin in mid-January and be comprised of daily treatment for 6 weeks. The weekly chemo will include Erbitux this time (for the first time), plus one or two other sensitizing chemicals.

Its really depressing news after all I've been through already. But the risk of recurrence without a 2nd CRT just seems too high... and a recurrence would almost certainly mean death... so I have to do it. My RO says I'll suffer severe fibrosis which will make moving my neck difficult. [Please spare me the Al Gore jokes.] My only method to combat this will be intensive Physical Therapy -- probably for a couple years. A small plus is that the radiation will be aimed at my neck, not my throat, so some of the nastiness I endured on my 1st CRT should not happen. Also fortunate is the fact that my surgeon had the foresight to install a ring of small metal vascular clamps around the high-risk region; this will provide a target for my RO to aim at.

There doesn't seem to be too much else to say. My medical team says they were all surprised... in large part because my PET/CT scan before surgery was negative.

I guess this discussion no longer belongs on this "neck dissection" thread.

Rob

Rob,

What a bummer but you know we will all be here doing whatever we can from this side.

Rob

It's a bummer as I know from personal experience to have to get more radiation and chemo after a ND. The good news is that the fibrosis of your neck will indeed get better with physical therapy. When I got out of surgery the left side of my neck was not only numb but felt like petrified wood. Now it only feels like Kelvar
Good luck with the Erbitux - I was real big on it at first but it toasted my facial skin so badly and then prevented it from regrowing so I needed to put hydrogel dressings they use on burn victims. Not as toxic as the carboplatin I took the second time around which turned out easier to tolerate. Make sure you stay on top of keeping the skin lubricated. The RO said it was the worst reaction to Erbitux out of all of my CCC oral cancer patients they have ever seen so it's unlikely yours will be so bad.

The fun starts on Wed 6 Jan with a "verification simulation". The first actual radiation (IMRT) will be Thu 7 Jan... then daily for about 30 treatments, ending about Fri 19 Feb.

Its amazing this is only 3 weeks away... I still have a swollen painful jaw (and difficulty opening my mouth) from the surgery as well as pain in my tongue/tonsil from the previous CRT which ended 26 Aug. I need to focus on some fast healing.

Tomorrow (12/18) I have my first PT session: we'll address exercises/training to compensate for the functional loss of my SCM muscle, but we'll also get started on range-of-motion exercises for my neck in order to pre�mpt the fibrosis.

Erbitux does seem to have a lot of nasty side effects, but I think it might really help. Unlike the chemicals I had last time, Carboplatin and Taxotere, which simply sensitize "fast growing" cells to radiation, the Erbitux sensitizes cells that express an abundance of EGFR (epidermal growth factor receptor) on their surface. All cells express EGFR, but SCC cells have a great deal more than usual. I'll still have some Carboplatin and/or Taxotere along with the Erbitux, but I like the idea of doing things a little differently this time since the previous CRT obviously didn't get it all.

Right after New Year (shortly before treatment begins), I'll start putting Aveeno lotion on my neck each morning and evening. I did this religiously for my last CRT and I had very few/mild skin problems... the skin finally broke in the 7th week of treatment (and I started using an astringent to help ward off infections) but it healed again about a week after treatment concluded. Things may not be the same this time around (because of the Erbitux, the different primary targeting of my neck tissues instead of my tonsil, and the shorter 6 weeks of treatment instead of 7) but I hope the skin pain/discomfort won't be any worse than before.

Charm: Thanks... its good to know the fibrosis will get better with PT. This is the most worrisome side effect for me. Like many folks, I can tolerate a lot of nasty stuff if I have a reasonable expectation that things will improve... but its especially depressing to think I'll be stuck with it forever.

Rob

Rob,
Thanks for posting; they're very informative and helpful. I'm wishing you the best as well.

Joel

I learned that my concurrent chemo will include Erbitux, Carboplatin & Taxol.
The first of these weekly chemo treatments will be on 7 Jan 2010... the same
day as the first of my daily IMRT treatments.

Unfortunately, I'm having trouble opening my mouth (trismus) because of the
neck dissection surgery. I used to be able to fit 3 fingers between my teeth
but now I can only fit 2 fingers. A specialist measured this opening at 31 mm
and says I should buy/use a "TheraBite" system. Unfortunately, my insurance
(BCBS) says they won't pay for this $400 device. So I'll try to pay for this with
my Health FSA which at least gives me a small tax break.

I've also learned that my job should be protected by the Americans with
Disabilities Act (ADA) and related statutes. The treatment I had in 2009
used up all the Short Term Disability (STD) time I had available, so now
my employer says I have to use Long Term Disability (LTD). Because I've
been paying my LTD premiums (for almost 24 years) with post-tax dollars,
this should give me 2/3 of my pay as a tax-free benefit. However, my
employer says they have to terminate me... with no assurance that they'll
be able to give me my job back when I'm ready to return. So I spoke with
a labor attorney and learned that the ADA requires my employer to give
me the time off (and to give me my job back) as a "reasonable accommodation
to my need for medical treatment." My employer hasn't yet actually denied
me my job back, but if they do I can file suit against them under the ADA.

Rob