I had a modified bilateral neck dissection on Fri. Sept. 2nd and went home the next day. My husband who stayed with me was going stir crazy plus I really wanted to go home helped me decide that I was going to go home.

From the middle of my ears going down the edges of my face down to the top of the incision feels swollen and numb. Like when your mouth feels when you get a cavity filled and get novicane. I have been waiting for it to wear off but it hasn't.

Wednesday the 7th I had the 3 drains removed. I was not prepared for this and did not take any pain med before I went. I'm glad they are out now but just wish I was prepared a little better. Of course everyone has things done differently.

I am scheduled to have the staples removed this coming wednesday the 14th. And everyone has told me that removal of staples does not hurt.

Is this true? Also My shoulders are sore and some of my neck muscles. I am still numb from half my ears down around my face til the incision. I am putting neosporin on the incision area. Can anyone tell me will the numbness go away? and about how long. It hurts for me sometimes to move my head and hold it up.

I will find out about the pathology report on Wed. also. I am just trying to get some more information and I have talked to some people but like I said everyone has a different experience and some more insite may be helpful.
Thanks
Terry

Terry

I had my neck dissection in April and I am still numb. At first, I was numb on my neck, face, around my ear, shoulder, and chest. It got better week to week. I am still numb around the incision site and a little on my face.

My shoulder and neck muscles were VERY sore after surgery. I couldnt lift my arm at all for about 2 weeks. This is much better. My shoulder and neck are almost back to normal.

My staples did not hurt when they took them out.

Good luck on your pathology report. The hardest part is waiting. I will be thinking of you.

Melissa

Terry,

Having major surgery like a neck dissection is not like having a shot of novocaine, where you just wait for it to "wear off". A lot of nerves get severed in the process, and they take time to regenerate. I don't recall exactly how many months it took me to get back all of the sensation around my incision, but it definitely was a long time -- maybe as much as a year.

It is common (and to be expected) for you to have soreness in your muscles in that area, and difficulty with motion. Some people find that they need some degree of physical therapy to help get back to normal motion over time.

Please keep us posted on what you find out from your pathology report.

Cathy

Hello Terry,

You have had major surgery!! I was in the hospital for eight days. The neck disection was the easiest part of all the treatment involved. Very little pain and removing the staples was no big deal. I thought it would be worse than it was. just like thinking about going to the dentist. After your done you wonder why you fretted about it brfore hand.
I am hoping your pathlogy report comes out clean. Don't be surprised if it doesn't. Just another hurdle as you battle this diaease.
Many of us have had similer treatment and survived and I know you can to!!!

The numbness may last a long time depending on what nerves were severed during surgery. Please keep us posted after you receive the pathlogy report. Ask any question you can think of and someone with similer treatment should respond.

I wish you the best of luck as you continue your journey down one rocky road.

Danny Boy

Terry

I had a radical neck dissection back in May and echo whst everyone else says.

It will heal but you will feel numb, the knitting back can be painful but try the usual painkilling drugs, I even had oral morphine at one point. There is still numbness there and had that through my RT.

It slowly comes back and is not painful at all, but thsi week I start physio and already feeling positive about it recovering to some normality.

Hi All,

I had a Selective Neck 10/3/03. I am still numb along my jawbone. Drives me nuts at times.

Doctor told me the feeling will likely never come back.

Not a huge deal. A trade off I can live with.

Key word there is "LIVE".

Take it easy.

-rh

Thanks for the encouragement!!!! I need all that I can get. It is sooooo hard at times. I am home by myself a lot and my mind and body take a toll on my emotions.

It is so hard not doing much. I have always tried to stay busy doing things with my family... going to kids sporting events and school things. And working. I miss seeing my customers. I have received many cards, calls and prayers of encouragement. But at times it is so hard. I am so emotional that it is driving me crazy!!!

This site has helped with information and I know there is hope but it is also scary. finding people who have been through what I am going through and reading the experiences has helped.

I know I need to get strong both physical and mental to get better.

This morning the bottom of my cheeks are getting numb!! I guess this is part of recovery and I hope it will go away. ANd it may not and so I will have to LIVE with it.

I will keep all of you updated.
Love
Terry

I got good news today and wanted to share it with all of you!! I went and got the staples out of my neck today! It was canceled Wednesday due to Ophelia on the coast.

My ENT was excited and told me that he had the results and was very glad to report that everything came out great!! No CANCER!!! not in any of the 45 nodes or my tongue!!!

He did say that there was one node on the left side that was disfigured and it came back with other stuff in it but no cancer. He told us the scientific name but it is gone so now I do not have to worry!!!

I am glad that I went through with the surgery (I'm not gl

Hello Terry,
Glad to hear your good news about your pathlogy report.
Do you have any follow up treatment besides the neck disection?

Best Wishes, Danny Boy

Terry, great to hear your good news :)As far as the numbness goes, my husband's neck is still numb after 4 1\2 mo., so you will probably have to live with that for awhile. He continues to use Aquaphor on the scar to keep it from itching and keep it soft. I guess it depends on your skin. Hope you will continue to share here. It sounds like you are doing great. Amy

Hi Terry,

Wow, great news. Congratulations.

My experience has been as follows. 30 nodes removed April 6th. I was numb from my ear to the midline of my neck. I never applied anything to the scar and it has healed perfectly. It is still visible, but fading.

My numbness has been decreasing over time and my ear and earlobe are back to normal. The numbness still exists from about an inch below the ear to the midline. The only time that I'm aware of the numbness is if I touch the area or something rubs against, like a shirt.

You mentioned your shoulders and neck in your first posting. I can tell you that I now have 100% mobility back in my shoulder and very minimal discomfort when I reach my arm straight up. This too, shall pass.

I don't expect that the numbness will ever go away and I am more than willing to LIVE with it the way it is. What a small price to pay for being cancer free.

Good luck on your recovery and again, congratulations on the great news.

Hope this helps.

Jerry

Jerry,

Don't assume the numbness will always be there. I found the healing process and nerve regeneration to be slow at times, but the entire area around my incision did get full normal sensation back eventually -- no more numbness, no more "pins and needles".

Cathy

That is great news Terry! I bet you are so relieved to get that report!!!

I was wondering how much time lapsed between the completion of your chemo/rad and your surgery? My Mom is considering a consult from MD Anderson for the removal of the nodes. She stopped her IMRT and chemo 3 weeks ago and her local oncology group will scan her in 2 months. They don't feel she needs to consider surgery but I want a 2nd opinion on this issue. I wasn't sure if she should go to MD for the consult before the 2 month scan or afterwards. So I was curious of your time frame and when the doctors decided on pursuing the surgery. Thanks & congrats on your promising pathology reports!
Tami

Hello everyone thanks for your posts.
I had asked my ENT yesterday about my muscles? in my neck and upper chest area hurting at times and feel like they want to pull my head down and the only relief was to sit back in a chair with head support or lay down (not flat ) with head support. He told me that because of the way he had to take the nodes out (in the mass they are in he had to stretch some of the muscles and scrape some of the mass off of them. That is why I get the sensations I do and this will eventually go away WITH TIME.

That seems to be the answer to all my questions I aske the doctors it WILL GET BETTER WITH TIME. The road to recovery was hard. Reading what people are currently going through reminds me of what I went through. I really don't remember to much of it because I was so drugged up from pain killers.

When I was first diagnosed I was given options of surgery first and then do rad/chemo (surgery on tongue to remove tumor and neck dissection to remove nodes plus future reconstructive surgerys) or do the rad/chemo first and then do the surgery. My husband and I decided to do the rad/chemo first and I had in the back of my mind that if the rad/chemo did their job I would not have to have any surgery.

My last radiation was sometime mid may. (My memory is not as good as it once was and I have a hard time thinking sometimes (told it is a side effect from radiation and may get better with time)

I saw my ENT the first week of june and we scheduled the neck dissection for July 12th. I was scared and my mom kept pressuring me not to have the surgery. We scheduled another appointment with the ENT to talk about concerns at the end of June and at this time I could not talk again due to mucusitus.

We decided to postpone the surgery for a little while because I just needed more time to. I also saw my radiation and chemo doctors and they encouraged me to do the surgery because that was the planned treatment.

I could not believe how I acted when I look back. I have always been strong for my children when they needed surgeries for differnet things like it was nothing but when it came to me no way. We scheduled another appointment 5 weeks later.

It was the longest 5 weeks I have ever had!!!. I kept feeling my neck and still having issues with my tongue and throat. I talked it over with several people some from this site and others who my ENT recommended and people that I met who have been there. They made it through it fine and I finally got it through my head that I had to do all that I could to make sure I got rid of this awful disease!!

It has amazed me on all the different cancers there are and how many people have or know someone who has/had cancer.

When we went back at the end of July and talked to my ENT and told him that we decided to go on with the surgery he was glad. He said he wanted to be sure that I would still be here in 5,10,15+ years.

I have followed along everyones stories (most of them) (some I have a hard time understanding what is going on) and my heart aches for all that have/had and are going through this. No one deserves this. It does changes things and people and I guess there has to be tragedy to bring people close together to help where there was not a need to before.

Life may not be all that it is cracked up to be but I will try to help others all that I can and be a shoulder to lean on. I pretty much was that kind of person and now I have more doors open for me to help.

everyone take care and we have to live life one day at a time and smell the roses. (btw I lost my sense of smell during rad/chem but it is coming back!!)
Love
Terry

Thanks so much for your story Terry....it gives me inspiration for my Mom's recovery and I will be sending her your last post to read. I wish you many years of health & happiness!! Thanks again for taking the time to post your story.
Tami

Tami,
I also just remembered my chemo doctor who never sugar coated anything. She was always up front with everything from how I would feel to the hair loss. When she told me to have the surgery and if it was her she would I asked her why and she said that she sees cancer all the time and knows what people go through.

The best thing is to fight it hard with all you got and since I already been through the hardest part and was still here I should go on with the surgery.

If the cancer comes back and I didn't have the surgery I wouldn't have done enough. Plus the survival statistics are not as good if you get it again. That is what they told me.

I hope you mom can get on this site and read read read. She is not the only one that is/has/will go through this.

She has to be strong for her and her family. I pray that she recovers well and from my understanding it is just her and her husband in Texas. Maybe it will be time for a move closer to family?

I will keep both of you in my prayers. Keep in touch
Love
Terry

P.S. I also remember everyone telling me that it will get better. I would be feeling so bad and would not believe them but I am a lot better than I was. Keep the faith in your doctors and if you feel like you need a second opinion you have every right. That is what saved me was the second opinion when they first found the lump in my neck!

Cathy...thanks for the encouragement on the numbness. I certainly will welcome the feeling back, if it happens.

Terry...happy to read what a great attitude you have.

Jerry