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Radical Necks: Give it to me straight!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mark has completed all 3 of his surgeries. The final one, resulted in a radical neck dissection. I know it has been discussed in many threads; but I want to know so I can inform Mark of the realities of living with a radical neck. The obvious is he is alive and the cancer is out. He also had the nerve to the shoulder spared. Tell me what is okay about it; tell me the downside.

Mark credits me with guiding him in a way that has saved his life...he dosen't realize everything I know, I know from all of you!!

God Bless all of you out there fighting snd surviving; and all of you supporting and loving and fighting right along side. We have joined your ranks.

With much gratitude,
Kim

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

As long as they re-attach the head in the proper direction everything should be just fine. He might lose some sensation between the chin and the incision from cut nerves, but it gets better over time. I think the biggest shock was looking at the scar for the first time. I almost fainted from the sight, but that was because when I was trying to shave with an electric razor for the first time, I was using a 50x magnifying mirror to see what I was doing.

Now I'm back to my new "normal" and living life to the fullest.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Kim,

I had radical neck dissection on 1/27/10 along with a tonsillectomy. This was followed by 35 rad treatments concurrent with 3 chemo treatments. I finished those 4 weeks ago. On my right side they took out a lot of tissue including nerves that went to the shoulder and the right side of my face along with my jugular vein and 63 lymph nodes (10 with cancer).

By far and away the neck dissecttion was the easiest for me. I don't think I can remember having any pain associated with it. It was kinda ugly at first but I'm 15 weeks out from surgery and besides a "divot" on my right side where they had to take lot of tissue you can hardly see it. The only bad things (and really they are nothing) is permanent numbness on the right side of my face from cheek to collarbone. I can still move all the muscles there. I do have some mobility issues with my shoulder but I've been exercising that and I have about 95% range of motion already.

Tell Mark good luck with everything. Good to hear his surgeries are done.
Greg

MarineE5
Posts: 762
Joined: Dec 2005

Hi Kim,

One of the things that Mark may notice is the numbness on the side of the surgery. This will last for some time. I still get it now and again and I'm 5 1/2 yrs out. He may feel what seems like little electrical shocks during the first year. These are the nerves trying to heal.

Stiffness in the neck with the incision healing. This can be addressed with stretching exercises. Lymphadema, this will depend on the number of Lymphnodes that were removed during the radical neck dissection. Lymphadema is the backup of fluids in the area involved with the removal of the lymphnodes. This can cause puffyness and tightness in the face and neck and at times the shoulders.

I didn't get this right after the surgery, it wasn't until after my radiation that I started to have this side effect of the lymphadema. I spoke with the Radiation Oncologist about this and he directed me to a Cancer Physical Therapist that dealt with Lymphadema. She showed me a gentle massage to get the lymphnode system to flow and relieve the puffyness. She also showed me some easy exercises to do for the thightness of the neck muscles.

As mentioned before, Mark will find a " New Normal ", but he will do fine.

My Best to Both of You and Everyone Here

beaver1
Posts: 7
Joined: Apr 2010

I had radical neck surgery on 3/12/2010. The right side of my face and lower chin area feel numb which makes shaving the pits but it helps with the blade costs. I use the sharp ones on the side i can feel and the dull ones on the side i cant (joke). Although that has now changed with getting radiation treatments I am currently using and electic razor. Have had three treatments with two to go. They spared the nerve in my shoulder as well, but it has sagged for some reason which they are not sure of. So i have entered a bit of Physical Therapy to work on that situation. I do find that i get a bit stiff at times in the middle of my back between the shoulder blades. Supposedly the physical therapy will adress that as well. They cut from just below my ear lobe down below the chin area and then forward removing 20 lymph nodes which fortunatly were all benine.

They say they got all the cancer but still wanted to do radiation in the area where the node that was infected and removed was. Along with that they have talked about a year of interferon treatment. At this point I am doing the radiation but going to pass on the interferon for a bit. When i ask why if they got all of the canser they want to do interferon as well they say it is just precautionary which i can accept but it has a very low percentage of people it works on so i am opting out of that for a bit.

Overall things have gone quite well. Shoulder a bit sore, side of face, lower chin and neck a bit numb along with shoulder and some stiffness in the neck area when i get up in the morning.

So with all of that i feel quite well. Radiation is goine well. Life is good.

Mark will be just fine it just takes time and understanding that the symptoms will improve in time.

Although it is none of my business if you havent applied for social security disabilty you might consider it. I did and it makes a big difference in helping with not having to deal with the financial things along with the cancer treatments and getting along in life.

Take Care of Yourself as well !
God Bless and i will keep you and all with this disease in my prayers

j3rey
Posts: 56
Joined: Apr 2010

Hi Kim,
My husband is two weeks post neck dissection. He had a lot of numbness around is ear and into his scalp the first week. Now, just his earlobe is numb. He says that his scalp, neck, and ear feel 'bruised'. 50 lymph nodes were taken so he does has some lymph fluid that accumulates in the site. The surgeon has advised us to massage the incision with vitamin E oil to help it heal and to help his body reabsorb the lymphatic fluid that has to find a new path. He did not lose any strength or range of motion with his arms. He was a little numb across his shoulder but that is also coming back. I think that the skill of the surgeon is really key on this one (only my opinion). His scar is shaped like a T with the top of the T being right under his jaw (this incision is barely visible) the downward stroke of the T goes toward his collar bone. This is the more pronounced scar and is the area that swells a bit. He has had little pain and was back at work this week.
Hope this helps! Good luck with the healing process!
Jen

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hi Kim, The name is actually Charles, but I used Irishgypsie for a lot of my internet blogs!

I'm pretty sure Mark and I in the same place give or take a few weeks. I had my surgery April 6th. Had radical tonsillectomy with tumor on Right side with negative margins. Then had Right neck resection for 1 nodal involvement. The scar gets better every week little by little I use mederma in the day, then I bought coco butter with vitamin e that I rub in a night watching TV. Scar goes from bottom of Right ear lobe to lower tracheal area about a 3/4 inch from Adams apple. But I really don't care about the scar; just want the cancer gone. Besides I'm a military so I will make up some good war stories! :) I do have numbness from my right jaw line down to the scar seems to be better in the morning and gets worse at night; these are cause by injury to the facial nerves which should come back over time..Now i only had a neck resection so I only had lymph tissue remove. They removed 38 lymph nodes and only one came back positive with focal extracpillary extension. That extrcapillary extension was unfortunately my deal breaker. Focal= 1 small area gross= small openings all over the node. My initial ent only wanted me to have radiation only because the node was focal; but he radiation onc, and then 1 surgeon and two Medical Onc felt I should be safe on go with cisplatin and radiation. Anyway, back to the neck resection. Usually hte mane problem is movement of the accessory nerves. Most likely Mark will have decreased control over his right trapezes muscle and shoulder muscle. If he looks ina mirror and holds his arms straight out side ways u can see unevenness with traps and shoulder; this can come back but he needs to see his PT as soon a possible for this can take longer to come back as suppose the the facial nerves! Let me know what you guys decided for post surgical treatment. I know it's going to be radiation, but are u doing chemo too? Good Luck!

Charles

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Join this site it should help you feel comfortable about your decisions!!
www.nccn.org

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

I hope Mark is doing OK, but with you at his side I think he probably is. I had the neck dissection Jan.22nd, Tonsillectomy and lymph node removal. I am 4 weeks out of treatment, and the tonsillectomy was probably the hardest thing on me throughout my whole treatment. Not trying to scare you that was just my experience. One thing I can tell you is , it prepared me for the pain from the radiation. I mean the mucous and mostly all of the side effects I had already experienced from the tonsillectomy. He is lucky that the shoulder nerve was spared. I have a lot of pain with that now, but only when I do things I really should not. There is numbness and really you can see the scar if you look hard, I had a great ENT. You guys hang in there and we will be praying for you!

Best,
Steve

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

My only daughter has a Doctorate in Physical Therapy, so I pretty much trust her in what she has to say (at least in her profession :)). She told me awhile back that it generally takes six months for one inch of nerve to properly regenerate in most damaged nerves from point of injury to nerve ending. Sounds about right.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

...for sharing your radical neck experiences. I have read them to Mark to help him understand what he is experiencing. I thought it weird when he told me it hurt when I touched his hair...but reading all of your posts allows me understand some of the details of his discomfort.
He is working hard to get food in orally. He can get the tube out of his nose on Monday if he can orally take in about 2100 calories. Finding it hard to find foods that don't upsent something else (milk = more mucus). Yorgut never agreed with him. He wants coffee, found expresso gelato...but we need more nutritious stuff. He is not sleeping well either. Tubes sticking in and sticking out everywhere. He takes less the 1/2 the pain meds precribed..."tripping" on the narcotics...not for him.

So we are building him up to get strong for the chemo radiation that he is about to have. He will have 7 weeks of radiation with 3 doses of cisplatin.

I think it is helpful to hear that if you can get through the recovery of the surgery, you are better prepared for the problems that arise from the radiation.

Every time Mark thanks me for helping him...I thank you all. :0 :)

Kim

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

I don't know if I told you this already but, for me at age 52 the tonsillectomy hurt me worse than anything else they did to me. The throat pain was at times almost unbearable, but I took all of the meds they would give me. I stayed in the hospital for 2 nights, but they did all of mine at one time. Removed the mass, the tonsils, the lymph nodes the package deal you might say. They gave me Demerol and that made me sick, so we stayed with the morphine every 4 hrs. and hydro codone every 4 hrs. What they finally did was give me meds every 2 hrs. Morphine then hydro 2 hrs. later then morphine 2 hrs. later and so on.

Stay ahead of the pain Kim, no matter if he is tripping or what. As long as it does not make him sick stay ahead of it. He will heal faster if he is not fighting pain. I am not a love to get high person at all, so I understand him not wanting the meds overpowering him but sometimes that is the only way.

One good thing that came from this, is it prepared me for the mucousitis that accompanies rads and also the pain from the radiation wasn't as bad. Chemo really did not bother me that much until near the end when on Easter Sunday I just could not stop throwing up. Had to go to the hospital and stayed 2 nights again, but it got me straightened out.

Tell Mark to have faith that there are better days ahead. Hopefully he will be like me qand not suffer too much through the rest of his treatment. Hang in there and my thoughts and prayers are with you both.

Best,
Steve

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

Wow, I am so amazed that you said that your tonsils out hurt worse that the radiation. I know that I have heard that getting your tonsils out hurts worse when you are older. I was little, and the only thing I remember about it was being completely traumatized when my parents left me alone at the hospital. I freaked out so bad and beat up the nurse when she tried to get me out of my clothes and into gown....for some reason they ended up bumping me up and taking me first to restore order. Ahem. No comments from the peanut gallery.

I just know how much radiation hurt, and man if that hurt you worse, that can't be good.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Definitely have joined the ranks, Kim.

I would echo Steve's advice on keeping ahead of the pain. I, too, got to know morph well in four of five consecutive weeks- including the first four days of week #6 in a hospital with getting it thru my Port. Mark's body has enough to deal with, Kim, as is- and the stress, etc., of extreme pain only does good for the vain ego. And, of course, he's just at the mouth of the tunnel of treatment- he's got a ways to go. Encourage him to take what is needed to handle it without his body having a major struggle with the pain. Morph is the last resort, to my knowledge, and it's scary stuff- but a number of us can say it likely did right by us in healing, and getting thru the bad times.

Cannot comment on the dissection, because I had none: they aced my two tumors, and whatever else, with aggressive Chemo and typical full H&N rads. Critical time for you and Mark, now, and must urge you to keep us informed. And, of course, Kim

Believe

kcass

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Marks recovery from this series of surgeries is quite slow and difficult. 2nd day out of the hospital he seemed to perk up and look stronger as he began to eat and talk more. Then he crashed. Mucous is overwhelming with a constant cough. He can't sleep. And the oxy made him feel like he was tripping. He seems more and more worn down as the days go on. Not the direction we all expected.
There is concern that he was becoming dehydrated as he was trying to take in more orally, so we have been pushing fluids both orally and through his tube. I had his pain meds changed. But sleep still does not come, in part because of the coughing and mucous. We were told mucous is a necessary evil of the healing process.
Anything helpful you can share would be most welcome. I am hoping to see a change today with the pain med change and the increase in fluids. If not, we have our post op appointment tomorrow. He needs to be strong for mid June when he will begin his chemo-radiation.
Kim

MarineE5
Posts: 762
Joined: Dec 2005

Hi Kim and Mark,

Is Mark sleeping in a flat position like he did before the neck disection? If he is, have him sleep in a somewhat elevated position like he would be in the hospital. By sleeping flat, the mucus collects in his troat quicker and causes him to wake more often. We tend to have to deal with this problem for several months. Surgery then the treatments.

Either purchase a foam wedge for the bed or arrange a couple of pillows to have his upper body elevated above his leg level.If you have a recliner, Mark might do better sleeping in that for awhile, I did much better in the recliner verses bed at the beginning. Unfortunately, some of the mucus will make it's way to his stomach, but he will at least get a little longer nap. I am lucky if I can sleep longer then 1 1/2 hours at a clip now. But, it is better then when I was waking up every 30 minutes.

Have him take in as much liquid as possible. We need to take in 64 ozs per day. It will help thin out the mucus. Remember, he had a neck disection, so his neck is swollen, not only on the outside, but also on the inside. Which, means that his troat passageway is narrower as well. So, any mucus that collects in his troat is a problem for him.

My Best to Both of You and Everyone Here

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I was in the hospital for four nights following my neck dissection and tonsillectomy and hardly slept a wink. It was tough to get comfortable while all hooked up. Once I got home it got easier.
Elevation was important because I could not breathe through my nose if I was sleeping flat.
I hope he starts sleeping well soon....it WILL get easier.

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