Radical Neck Dissection

Just joined this board and I'm so glad to have another source for info!

My husband has been thru 35 rad treatments and 3 chemo sessions for SCC which ended 2/22.  Since then they've done F&A's (?) and 2 CT scans and a PET scan and yesterday we met with the specialists/tumor board after the results.

The first biopsies (3) on June 2nd didn't show any live cancer cells.  Then on the 10th they did 5 more and found some cells so I thought since they had been dragging their feet the surgery would be selective or moderate dissection...yesterday they sat down and said they wanted to do radical dissection ASAP!  Definitely the scm muscle, 50/40 chance of the jugular and  nerve.  I was floored!

Especially since it's on the left side and my husband is left handed...I'm frantically trying to find info on after effects and how best to prepare as we're at the VA and when we did the radiation/chemo they gave us minimal info, no real prep to know what to expect and I found it all by searching on the web.

 SO, any info you all can give would be great!  I know each case is different but whatever you can tell me to get ahead of the ball is really appreciated!  The drs seemed to act like it won't be a big production, 3-4 days in the hospital and I asked if we could take our planned vacation in exactly 2 months and he said no problem!?!

Thanks so much...

Artray,

          I had a Radical Neck Dissection done before my Radiation 4 1/2 yrs ago. Mine was on the right side and I am right handed. I was a bit weaker on that side for awhile, but my strength did build back up. Not to the levels I once was, but pretty close. 

         I did have the drain tubes and the staples as you might have read in your search for information on the web. The Doctor left them both in for 12 days. The healing was fairly fast on my part as I mentioned, I didn't have the Radiation until after I healed up.

        One side effect of a Neck Dissection is the removal of the Lymphnodes and that causes swelling in the neck area from the lymphnode system. The remaining lymphnodes have to work harder. By lifting anything heavier than a Bowling Ball, will cause the fluids to work up to the neck area and thus the swelling begins.

        One small tip to help with this is to cut down on the salt intake. Although we have to hydrate, we also don't need to keep the water in our body as it causes the swelling. A nice balancing act we have to learn.

       So, I have not done much weight training like I did before, but have slowly built myself up by chopping wood when ever I can. Each person will find what works for them. Even this causes me to swell up and get tight in the neck area, but then I do neck stretches and a gentle massage around the lymphnode areas of the neck.

       Your Husband's recovery will depend on how he tackles it and how his body responds. Each person is different and hopefully, he will bounce back quickly.

       There are several other people on this board that have had the Radical Neck Dissection and I'm sure they will respond when they view your post.

       My Best to You Both and Everyone Here

Thanks pop pop...I'm just trying to get as much info in advance as I can.

My husband is a very active, physical man and I just want to know what I can do in preparation to make his recovery as good as possible.  I know that physical therapy is available, not sure how good it is at the VA we use, but whatever I can do to help him get stronger and recover well is in my duty list!

 Thanks so much...

I have a modified neck dissection last summer..........along with tonsil surgery and 23 biopsy punchs........so my recovery was extended due to a very sore throat.  Was a bit weak on my left side.......improved with use.  As Pop-Pop mentioned, swelling can be a problem.........it improves also, or at least it did in my case.  Hope your surgery goes well.....just keep asking questions.

Steph

Hi, I am in a similar situation as your husband.  My radiation and chemo and radiation finuished up on 30 Jan.  PET indicated possible live cells remaining in the tumor on my left side, so a bilateral neck dissection was done on May 1st.  They removed the tumor and left jugular vein, several lymph nodes; but did not touch the nerve or muscle.

The surgery went fine but since radiation was done first healing has been somewhat troublesome.  Lymphadema (fluid retention) in my neck has caused the incision to open back up about 4 weeks after surgery but it too is getting better also it has made swallowing more of a problem.  I was coming along slowly with eating but the surgery has delayed that also.  As far as your vacation I would not venture it until it is well healed, if we would have been on the road when mine opened up it would have complicated matters even more.

One thing to remember is that if they do not do the surgery the chance of it spreading is extremely high, so even with the possible side affects it sounds like it is a necessity and not to wait to long.  This may not have been what you were hoping for but as everyone in here will tell you “there is light at the end of the tunnel” it may just be dimmer right now but it will get brighter.

God bless and my prayers are with you and your husband….

Thank you everyone for the info.

I, again, talked to the Dr's yesterday with all my concerns now that I've had time to digest and research the info...and was told, again, that we should have no problems leaving the end of august.  Interesting that of all the people I've read, no-one seems to have had the SCM muscle removed and they did say (yesterday) that the cells were along the muscle and since they want to take a 'margin' of good tissue to make sure they've gotten everything that means the muscle...but not necessarily the vein or nerve!  I guess we'll just have to see what happens when they actually open him up!

We are scheduled for 7/6 so it's only a week away...did the pre-op yesterday so we're all set to go.  I do realize that since he had the radiation those areas on his neck are not as strong but the area they said they'd be cutting doesn't go thru the skin that was damaged by the radiation (at least the part we had to take care of) so maybe we'll get lucky!

I also asked about the swelling and he said that since the radiation damaged/killed so many of the lymph nodes that we shouldn't have that problem, but he may just have been telling me what he thought I wanted to hear.  Guess we'll cross that bridge when we get to it!

Dave, does a 'bilateral dissection' mean they did it on both sides?

And what have you found is the secret to comfy sleeping???

Thanks again for the info...can't imagine how much comfort it brings!

Hello Artray,

          I'm glad to hear that you were able to gather some more information on the up coming procedure. 

          In my prior post above, I mentioned a radical neck dissection. I didn't mention the SCM muscle, but I did have it removed. As I mentioned before, it was on the right side and that side was a bit weaker for a spell.

          As you mentioned, physical therapy will play a part in your husband's recovery after the surgery. Hopefully, his incision will have healed up well by the time you are going on vacation.

          If your husband has a trache put in, he will have to slept in an upright position until it is removed. He may and I say may have to sleep in a inclined position via several pillows or a wedge in bed to have his head above his heart level after his surgery.

         The reason for this is due to the lymphnodes either removed or damaged/killed as you stated. The remaining lymphnodes try to do what the others did and they get backed up with fluids causing the swelling we mentioned. Just want to make you aware of the posssibility of it happening. No one told me about it after my surgery and it was several months before I started having swelling issues.

         The swelling not only effects the outside of your throat, but also happens on the inside causing the passageway to shrink somewhat. Making swallowing a bit more difficult. Again, hopefully, this doesn't happen to your husband and again, just making you aware if possible issues.

          Sorry that you and your Husband have to travel this road. As you mentioned in your first post, you'll be going to the VA hospital. Thank your husband for me for his Service to our Country from an old Vet.

          My Best to You Both and Everyone Here

Artray,

I had a modified radical bi-lateral neck dissection on March 2.  I went on vacation May 10.  Bass fishing with my father.  I fished everyday twice a day for hours on end.  (I did need a nap between!)  

The modified just means that they HAD to save on jugluar vein.  Other than that everything went.  Nerves, muscles, veins, and lymphnodes.  And thank goodness.  The cancer is where it should be-gone. 

Now my vacation was a trip that we took by car and it was only 3 1/2 hours away.  I had to take my jevity with me as I still can not eat anything. My swallowing was impaired further by the surgery and swelling.  I am 7 months post rads and still can not eat. 

If your husband has a problem with lymphedema like I did and your vacation is by airplane he may have a problem.  And it is easily solved with a compression garment.  I wear one every night to help keep the swelling down.  Again, I have no lymphnodes on either side of my neck so my swelling is probably alot worst than was you can expect.  If you'd like to see my fat little head let me know and I will pm you a link.  The compression garment can be seen by going here http://www.affordablesupporthose.com/epstein-facioplasty.htm

If you have any other questions just let me know.

acknk,,

Thank you so much...you give me sunshine in this tunnel!

Yes, we are flying (a 3 hour flight up and 5 hour flight back after 2 weeks) to Alaska for a cruise.  The Dr's said it should be ok...he's set to have just the left side done and the Dr said definitely the sternocleidomastoid muscle, possibly 50/50 chance on the nerve and jugular.  Although he said (and I asked him point blank) we should have no problems with the swelling (which I've been reading about on the postings) I wonder if he told me this cuz it made me feel better...I will definitely check out the compression bandage just in case.

My husband, however, has been working in the yard alot this week and has had minimal swelling so far (the Dr also said the radiation has killed most of his lymph nodes on that side so the removal wouldn't be much more damaging to the lymph system?) but I've noticed that depending on how he sleeps (sitting up vs. leaning on 3 pillows) and if his neck is bent does effect the swelling in his throat.

Although he's now 4 months past radiation and he can pretty much go without the jevity thru the tube he does keep up with a few cans a day to keep the calories up and he can't eat as much as he did before...gets so tired from chewing only makes it thru 1/2 a plate of food!  But I'm really hoping to wean him off the g-tube before we go on vacation...what's the explanation the Dr's have given you for not being able to eat still???

 Thanks again for the info and support!

Jeani

Jeani,

The swelling that you have already noticed is lymphedema.  Caused by the already damaged lymphnodes.  Think about it like this.  You have lymphnodes all over your body.  So lets use the ankle.  You sprain your ankle, it swells.  Your health, your lymphnodes are all intake.  It takes that swelling a couple of days but it will move away and be absorbed by your body.  If you keep you leg elevated it moves away fast, walk on the foot and ankle swells more.  

Now, lets say the lymphnodes in that ankle are sick or damaged for some reason.  The fluid builds up when there is no trama so when you hurt yourself it's going to really build up.  Because it's backing up.  No where to go. 

It's the same with the head and neck.  Yes, his lymphnodes have been damaged.  That is why your seeing the swelling.  Now your going to ask the his damaged body to deal with the trama of surgery.  You have to expect swelling.  How much is anyones guess.  I was a bad case.  But it does happen.  No doctor can really say it wont.  He will have the lymphs on the otherside so that should help a great deal.  It's just a matter of re-routing the fluid.

"they" tell me the reason I am unable to swallow is that the epiglottis in almost immobile.  A resent CT scan showed that the epiglottis is slightly thickened.  I would assume that this is from radiation.  The working theory is that the epiglottis can not move correctly because of the thickening and that the problem is compounded by the swelling still present in my neck and mandible area.  I have no idea weather this can be corrected or not.  I will be seeing my ENT next week.  He was not the doctor that order this test, but I do believe he is the doctor to answer the questions. 

One more thing to factor into the healing of any surgery is age.  I am 41 and I was in pretty good health before I let this people make me sick.  Ironic isn't it.

Have a good night.

Amy