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Neck dissection and what to expect

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

I'm scheduled for a partial right side neck dissection on May 17th and am wondering if anyone else has had this and what to expect. I've had 33 radiations, 2 chemos and am currently 11 weeks post radiation. The ENT said that he's planning on taking my right lymph nodes and jugular, cutting me from right ear to inside of right collar bone. There is a possibility that he may have to take some muscle and nerves but doesn't think so although no guarantess until he actually gets in there to see. He said that the radiation totally elimanated my tonsils so there's nothing to remove, which scares me since the right tonsil was the primary source of the SCC. He told me to expect to be down for about a week, providing that the surgery goes as planned and they only really have to do surface cutting. I consider myself sorta tough, I worked all the way through radiation (although I did take 1/2 hour naps in the afternoon) and missed days 3 and 4 after chemo (5 and 6 were weekends, thank God because I would have missed them too). The closer we get, the more nervous I get........I would so appreciate any advice, experiences, thoughts that anyone has. I'm excited to be done, but man, I know this is gonna hurt! :) Hopefully this will get rid of my nasty cancer named Goliath once and for all!!!!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Wow - I was all set to say "after your tonsillectomy, the partial dissection will be cake". THEN I noticed you did not have a tonsillectomy. For me, the pain after the procedure was not as bad as I'd anticipated. I was cut from behind my right ear, down to my "main" neck crease, then around and up to under the center of my chin. I did not lose my jugular; some nerves and muscles were cut.

Ask for extra pillows in the hospital - it helped me to "pack" myself in the bed to help me stay on my back while I slept - laying on my side with the drains sticking out of my neck was not an option (imagine thin drinking straws sticking out of the side and front of your neck).

I was very concerned from the moment they told me I would not be permitted to eat or drink after the surgery - like most here, the thought of not getting water made me crazy. It wasn't as bad as I'd thought it would be - am thinking I can thank juicy pain meds for that.

Four months later, I'm still recovering. I normally have no pain (pain didn't last long). Parts of my ear, side of head, jaw, under chin, neck, chest and shoulder are numb or have lessened sensation. A good portion of the right side of my neck is "very firm". Parts of my ear and lower jaw are sensitive. I have good range of movement in my neck - not perfect, but good (I can look over my shoulder while driving again). I do not yet have full range of motion back for my shoulder, but continue to see progress. I can carry things and use my right arm, but find I now use my left arm to reach for things above my head, and to "take over" when my right arm can't get the job done. I do light yoga - I think it's helping my shoulder.

Do well.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

A selective or modified neck disection is in theory an easier go than a full bi-modal disection but that all depends on what they have to move out of the way and if they can avoid cutting major nerves. Having a jugular removed is sure to make things a bit more difficult.

I had a relatively easy time with my left selective disection , seven nodes removed, 1 -drain inserted. There are many here where the disection was much more complicated/severe so as always, "It depends"

I would suggest that having your throat cut is a bit more challenging in a work envirenment than chemo or radiation especially if it's assertive labor. Remember you are losing one jugular as it is. Your going to have stiches and significant swelling. This really is a personal time to be somewhat reclusive if possible because it anin't pretty.

Pam has already alluded to the everlasting side effects and possible complications/loss of mobility and stiffness. Again, "it depends" but you will have some lingering side effect and most of it is manageble. I also use yoga and Pilates to help with mobility and stiffness and also range of motion. You will be given some post op exercises to keep things moving along so make sure and do them. A shirt with a front pocket and a safety pin are great ways to manage the drain/s. Bring the hospital gown home.

Can you go to work in a week? Yes if you sit at a desk. Will backing a car up be almost impossible? Yes for many months to come. Don't compromise your safety to go to work if possible. If you are self-employed that's tough to do, but if not, then ask for a reasonable accomodation, it's federal law and this is your time to heal.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I had a modified neck dissection, left side. Sounds like I was cut the same way as Pam. I 'only' had my submandiblar salivary gland, the tumor, and 23 lymph nodes removed. I was in the hospital 3 or 4 days. They did not send me home with the drain. There was a lot of swelling to my face. Actually, I think I have picture of myself after the neck dissection on my expressions page. I too have the numbness in places, the tumor also had attached itself to my jawbone, and they had to scrape that off my jawbone. That hurt for a while after. It still kind of hurts when I press on that spot. One day the dog whacked his head right into my jawbone on that spot. Holy cow that hurt! My paralysis with my bottom lip on that side is a lot better. My neck is extremely stiff tho. I have very limited range of mobility. Backing up is hard. I would suggest not being around me when I back up. I've not hit anything yet, but I wouldn't rule it out. My left arm after the surgery was super weak. I also could not raise it above shoulder level. I can raise it now, but it's still not right. Also, now I'm having numbness in that hand and up my arm a bit. My neck is still very tight feeling. It bothers me every day. Sometimes it gets stabbing pains, nerve tingles, creepy crawly feelings.

I agree about working. I am amazed you worked through your treatment before, but I would take some time if you could. I don't know if I would try and drive right away. It isn't just backing up, it's driving too, with the steering wheel. I always use two hands on the wheel now, that left arm cannot be trusted to steer properly on it's own. Actually, only a couple weeks ago I had an incident. I am glad I was turning onto my road, in the middle of nowhere, and not in town. I was making a left, and I was more using my left arm to make the turn, that arm/hand seems to like to just drop stuff on it's own and not work right, the wheel sort of slipped out of my hand mid left turn. I almost ended up in the ditch. I was sort of turning the wheel hand over hand, and it slipped right out of that left hand. Lemme tell you that got my heart beating!!

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Thank you everyone for your input. It sounds like everyone had quite a more extensive surgery than what they are planning for me, but of course, they won't be able to guarantee anything until they get in there. I never thought about doing yoga or pilates afterward, but that will be something that I look into now. I talked to my ENT again today, he said I'll check in on Tuesday afternoon, have surgery and be released Wednesday morning. He said that I'll have 1 possibly 2 drains which will come out about 2 to 3 days post-op and once they do, I'll be able to shower normally and start trying to function normally. I do have a desk job, so Im so very blessed with that. My bosses have actually become my lifline through this, making sure that someone is with me for every doctors appointment and procedure, bringing in mats and blankets for me towards the end of radiation so that I could nap in the afternoon. Amazing people and I am truly blessed to have them in my life! I thank you all for your support, any other advice that can be given will be so appreciated and I'll keep an update going post-op so everyone knows how it goes!
Hugs to all
Karen

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I forgot to say that yoga is a great thing to do. I need to find another class. I went a few times, and the studio closed. I need a very gentle class.

BTW, I only had one drain. I don't believe it will be as easy for you as you're thinking. Sorry. I of course have no clue, but it took me more than a week to be able to do normal things again. Maybe I'm just a whimp. :) I am hoping you have an easier time of it.

I am very glad that your work place has been understanding. Mine was not, they would not relax anything for me. Still wanted me to work 48 hrs minimum a week while in treatment, among many other things I could not do.

Keep us posted, and good luck.

Hugs,

Sweet

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Sweetblood22.....I value your honesty over anything else. I do tend to try to make everything rosier than it will be. I'm hoping for it to go smoothly, but just in case, I already promised work that I would take a full week off to rest and heal and then go from there. I'm not as tough as I think I am and I'm sure that you'll be reading my whiney posts shortly after! ;)

I really value your input!!!!!
Karen

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thank you for valuing my honesty. Sometimes it gets me into trouble. But I do always mean well. I had to tell you what my fortune cookie was today. I got take out last night, but didn't open it until today. It said. "Hope for the best. Prepare for the worst."

:) sweet

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

AMEN my sister! That is my life motto!

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

My husband had a lot of problems with his drains. I nicknamed them bedbugs - they suck the fluid and slept in bed with him. Yes, I know, too cutesy but hey all his nurses knew what I was talking about. At first they were fine, but the one on his right side got taken out too soon so all the fluid collected under the skin so it looked like he had a mini Nerf football under the skin between his neck and his shoulder. He ended up coming home with that drain (after the doc did a bedside reinsertion) and it stayed in another 2 weeks.

Hubby had a complete laryngectomy with a bilateral neck dissection. The only thing I might add is he said it felt like he had a noose around his neck and when the weather changed, his muscles tightened up. Kinda like arthritis acting up, I guess. Everything else has already been covered.

Good luck - I'll be sending happy thoughts your way :)
April

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

April- I know I had a lot of questions about the drains....I've never had them before, even when they did exploritory abdominal surgery when I was 16. This is going to be an adventure, just as the rest of this whole experience has. Thank you for the happy thoughts and for the time to give me your input,it really does help to know that people have gone through this and made it ok...I will keep everyone updated!!

Hugs to you!

Karen

mixleader
Posts: 267
Joined: Oct 2010

Hi, Karen. Lots of best wishes and prayers coming your way. I had my neck opened up twice because of this miserable beast and, like a lot of us here, I still have residual effects. However, I am still here and working and I am still hopeful for the future. Yeah, it was tough, but I find that I just keep getting tougher as more and more problems come my way. I also consider myself pretty tough, but I was scared as H*** before my surgeries and before the rads began. But, we all learn to deal with it when we have to. To quote a SEAL phrase "The only easy day was yesterday" and "the only thing worse than losing, is giving up". It sounds like you have been through a lot so far and I wish you the best in your upcoming fight. Stay strong.

Roger

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

I am scared but this has been such an adventure so far....I've learned so much about myself and the people that really love me. It hasn't been easy, but I feel like everything that has happened has been a horrific dream and at some point I'll wake up. Sort of sureal I guess. It would have been much worse to go through if it was one of my children, so for it being me, I am grateful! I fully intend to not give up, I'm gonna fight this monster Goliath (my cancer's name)with everything I have! I always have been and fully intend to continue being a survivor!

Hugs to you!
Karen

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

Frankly, my dissection was not that bad. One-night stay to make sure all OK and then home. Mine was probably less than yours will be. He did slice me and take out about 26 lymph nodes in a cascade from my ear down but that was all that came out. He said he pushed around the nerves a bit but did not cut. It has been more than two months now (wow!) and practically all of the numbness right down to my chin is gone and the ear is almost normal feeling. The scar on the outside is almost invisible, just another wrinkle, and the swelling and wattle are much reduced. And we haven't really been all that assiduous in massaging or anything. I have basically full range of motion left and right and down (with a bit of L'Hermitte's still) but up is not quite all there. For a goalie this is kind of important but for normal people, no big deal. And, yes, I am back to playing 3 days a week whenever I am not overseas for work.

However, they scoped me at the same time and whether it was from the scope or from the tube while I was knocked out, there was a tear in my mouth tissue way back in the corner and a very sore jaw that still bothers me some, like TMJ. The mouth sore is almost gone and I don't use pain killers and have stopped applying anesthesia to the area (like concentrated magic mouthwash) so I'm finally almost done with this.

Again, the neck dissection itself was really no worse than the tonsillectomy in terms of pain and bother and really not bad once they took the tubes out. The tubes were pretty frightening looking (pic on my caringbridge site) but they don't last long.

And yes, between the tonsillectomy and the dissection I did have nine weeks of rads and a couple of chemos and that was an adventure.

Though sort of unnecessary in the end, doing the dissection was worth it since they could finally prove with biopsies that all they took out was cancer-free and I was finally done.

I hope yours will be successful. Please let us know. Doug

tnsilcncer's picture
tnsilcncer
Posts: 64
Joined: Apr 2011

Thank you Doug. I'm hoping mine goes as easily (if you can call it that) as yours did. Will keep you posted!

Hugs
Karen

furkidsmom's picture
furkidsmom
Posts: 11
Joined: Jun 2011

hi, I joined this site a few days ago with a similar help call to yours. I am having a radical neck dissection at the end of the month and am totally clueless as to what I am going in to. I have gotten feedback from several of the same people you have and the people here are awesome. I would like to ask how your surgery went and what you have gone through afterwards. Any hints or advice on how to get through it? This journey I am embarking on has temporarily thrown me for a loop and to cap it off my job 'let me go' as I could not do the lifting required... so it is "sorry you have cancer, oh and by the way you don't have a job now either" sorry just a little venting here. But i am interested in how you are doing and what your surgery experience was and post surgery experience. I hope you are doing well and am sending soft hugs your way.

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

My husband had a neck dissection and had 34 lymph nodes removed about 3 months ago. The only real problem he had was muscle atrophy in the shoulder. The pain was managed very well. He also has a little bit of nerve damage going to the corner of his mouth. These are all things you are warned about before surgery. 3 months post and the site is still numb.The one thing we had going for us is that we love to joke around...alot. The hospital stay was 3 days and we looked at it as almost a vacation.We're only 31 so it got us away from the kids : ) Gl to you and your family. I hope all goes well for you,also a speedy recovery. Alison

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