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Radical left neck disection

D-Byrd
Posts: 25
Joined: Aug 2010

Hi everyone, I am new to the CSN and finally decided to join up and ask some questions. I was diagnosed with SCC 4 months ago after seeing a huge knot come up on my neck. I had an unknown primary wih a radical left neck disection. They removed 23 nodes with 3 being positive along with my jugular and left shoulder trapezoid.

I am having problems on the left side of my neck now and it feels like someone is choking me all the time. This pressure keeps me thinking about the cancer and makes it hard to have good thoughts of getting better. Have any of you been through this or had these feelings and if so what did you do about it?

I have been reading the forums all morning and I am glad to see there is people out there that still care. I will pray for all of you to get better and God bless you all!!!

D-Byrd

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

I would call my ENT as soon as possible and let him check it, not to say it is any cancer but to be on the safe side.

All the best to you.

D-Byrd
Posts: 25
Joined: Aug 2010

I have told my ent and everyone else of this situation and it seems to be a normal thing to them. Maybe after I heal a little there can be some kind of surgery to help relieve the tightness. I just wish there were others out there that could relate to my situation and let me know this is normal.

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

Give it a little time and some of the other CSN members will be logging in and can offer a lot more help then I. For now take care and keep posting letting us know how you are doing.

All the best to you my friend

MarineE5
Posts: 747
Joined: Dec 2005

D-Byrd,

Your post sounds very similar to what I experienced some time ago. I had the Radical neck disection done on the right side with 30 some lymphnodes removed. That was in Oct 04 and then completed my radiation in Jan 05. It was several months after that when I felt the same swelling and tightness that you speak of.

I was sent to a Cancer Physical Therapist that showed me some easy and simple stretching exercises and gentle massage to retrain the Lymphnode system to flow correctly again.

A few things that may cause us to swell is salt, laying flat while sleeping, lifting heavy objects. The swelling of the fluids not only causes our face and neck to swell, but also the inside of our throat swells and we may experience some difficulty swallowing our food.

I have posted the exercise and massage to the best that I could in prior months, I will try to find it and repost it here for you to view. That may get you started, but having a professional show you the exercise and massage would be very helpful. You can learn it in several visits. They just want to see the results after you have done it a few times and then you are basically on your own unless you have other problems. That is the way it was for me anyway.

My Best to You and Everyone Here

MarineE5
Posts: 747
Joined: Dec 2005

D-Byrd, Found it----this a post that I made some time ago. -----

Stretching and Massage exercises

A simple neck stretch exercise the Cancer Therapist taught me was to sit or stand and not move my shoulders. Keeping my mouth closed, look up at the ceiling as far as possible and hold for a count of 10. Return to facing forward and then look to the left and again count to 10, then the right. Next, look straight ahead and tilt your head to the left as if trying to get your left ear to touch your left shoulder, again count to 10, then the right side. That is the exercise she taught me and it has helped over the yrs. Try to do these 3 times during your day if you can.

Next, the massage for the Lymph system. It is a gentle massage starting at the front of your chin. Using 2-3 fingers,make small circular movements for 6-8 circles and then slowly move up in sections along your jaw on one side, working up toward the top of your ear and then slowly behind your ear and down toward the jugular vein and to your collar bone. Do both sides this way, either one side at a time or using both hands, do both sides at the same time. Then starting under your chin and by the Adam's apple, make circles again and work under your jaw bone and towards the ear area.

Next part is, place your right hand in the center of your chest so your hand can work from the center of your chest to your left shoulder just below the collar bone and push gently to the left shoulder 6-8 times and repeat on the right side with your left hand. After that, raise your left arm straight up towards the ceiling, place your right arm across the front of your body, reaching to touch your shoulder blade, slowly run your hand down along your side to your waist 6-8 times, repeat on the other side.

Next,we have a lymph system reservoir located in the general area of our belly button and to the left, but a few inches down near the left hip bone. Near this area, press alittle more firmly and make 6-8 circular motions. Work across the lower stomach area making a smiley face ( or a U shape) across to your right hip area and then back again. This stimulates the reservoir and helps move the lymphnode system.

We also have the benefit of gravity working on our side, after this stretching and massage, by walking for a short period, gravity takes over and the fluids start to move down towards the reservoir. Cutting down on salt helps and drinking roughly 64 ozs of fluid a day helps flush our bodies. If you do this properly, you will start to make more trips to the bathroom to urinate.

It took just a few visits for me to catch on and it started working for me in several weeks. I was swelling up in my face and neck, causing tightness and difficulty turning my neck and eating . Again, you will do this massage 2-3 times a day if needed. Sometimes, I only do it once a day and other days I don't need to. You will know when to do it.

Also, if we do any type of heavy lifting, picking something up that weighs more then 25 pounds, our blood and lymphnode fluid move to the area doing the work ( shoulders and neck ) which in turn causes us to swell. Sleeping flat will cause us to swell also. Once the Lymphnode system repairs itself. We will have to do less of this massage and stretching exercises. If the swelling flares up, we can do something about it.

If it continues, I would ask to be taught by a Cancer Physical Therapist, they can show you the proper technique. Hopefully, this will be helpful.

My apologies for such a long post.

GraceLibby's picture
GraceLibby
Posts: 88
Joined: Jul 2010

You also might want to look up an MCT diet (medium chain triglycerides). MCT fats are processed by the liver instead of the lymphatic system. Cutting down on fatty foods and eating MCT fats instead helps to decrease the amount of lymph fluid (chyle) that is going through your lymph system in your face and neck.

Look into coconut milk, coconut water, MCT oils, organic grass fed meats, etc... At this moment, I have to keep under 20 g of fat a day because I'm having problems with chyle build-up. If you're interested in this, I suggest speaking with the dietitian on staff at your hospital so you can keep up calories while keeping fat content low.

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Thank you for your post. Once again, I have found the answers to my questions before I even had a chance to ask them. I have rather extensive lymphedema of the chin and neck, three months out from end of my treatment. These massage techniques were just what I was looking for. I have been waking up in the wee morning hours with the sensation of having trouble breathing, usually because I've slid down off the pillow, and my puffy neck is at a bad angle. Straightening out my neck usually helps. Allowing the water from my morning shower to flow over it reduces the puffy. These massage techniques should do the trick.

Thanks again

Deb

D-Byrd
Posts: 25
Joined: Aug 2010

Thanks for all the replies everyone, this is going to be a great place for me to settle in. I hope everyone is having a great day and I will talk to you soon. God bless all of you.

Hondo's picture
Hondo
Posts: 5670
Joined: Apr 2009

I am glad you like it and hope you continue to be a part of our Family

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

Almost the very same that they found on me almost 15 years ago. I had 5 golf ball sized notes wrapped around my jugular. Then they could not do surgery first. I did chemo and radiation to shrink and then radical neck disection. Oh and mine was on LH also. All of what you are experiencing is so the same as mine and many others. The hard part is everyone experiences side effects so different from one another. I can say this, you are blessed to have had the treatments now vs when I had mine. The equipment that they use now is superior in so many ways than back many years ago. I can see that those being treated now have many less side effects as they can pinpoint radiation and stay away from area's they do not need to hit.

Your pain may take months/years to slowly get better but it will get better, mine took about 18 months until i could wake up and be able to have what I call a new normal day. that is a day where there are reminders but all are bareable.

My doc. always told me when I would point out the same type feelings your having, he would say. " I can not find anything, the pains you feel now are reminders of how blessed you are to be alive, go out and continue to have fun". After all these years I believe every word of it, I live it still daily. Just small things like looking up very high in the sky is not easy and very little reminder when I do it. It reminds me of C and how blessed I am.

Positive Mental Attitude is hugely important to the long slow recovery time. Nothing good comes out from something easy and fast.

See your Doc. often for the continued confirmation that there is no cancer and have fun no matter how many very small hurdles you continue to have daily and sometimes hourly.

John

seahaven
Posts: 10
Joined: Oct 2009

I had a radical neck dissection of my right neck in Nov. of last year. They removed 42 nodes and glands. I had rad and chemo until I couldn't take it any longer. I am now cancer free with a very stiff neck. I am in PT twice a week and it is getting better. I am thinking about another six months or so and I will be able to look over my shoulder. I wish you the best and give it your best to keep a positive attitude...... it works...

luv4lacrosse's picture
luv4lacrosse
Posts: 1379
Joined: Jul 2010

D-Byrd, welcome to the site. Keep osting and reading as this is where I go for knowledge and comfort. I had 21 nodes removed of which 19 were cancer. I was fortunate as my surgeon was able to save my muscle, my Jugular and every nerve with the exception of one near the top of my jaw. This will most likely resuly in permanent numbness to my ear lobe on the right side.

I had my Tonsillectomy 8-2 and my neck dissection 8-6. I have virtually no pain at the incission site but have constant pain to the area by my Rotator Cuff and to the right shoulder blade. I assume it is pain radiating to this area from the surgery. I have allot of stiffness to my neck. I started going back to the gym Monday and when I try to stretch by hanging from a chin up bar.I still have to support myself by leaving my feet on the floor. I feel like if I let my entire body weight hang that my neck will split open.

I assume the stiffness will remain for quite some time as they took allot of tissue out of my neck.

Can anyone comment on this??

BEST!!

Mike

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

Welcome to our group D-Byrd. Sorry you found yourself here but a better group of people would be hard to find. Just curious, you didn't mention rads or chemo. Did you have either of those? Good luck on your journey and keep posting!

Hey ya Mike,
On my neck dissection they took a lot of muscle along with a nerve to the shoulder. Since a couple of the nodes were "stuck" to the jugular he ended up having to take out my right jugular vein also. I started working out about 2 weeks after surgery. Stretching and lots of reps with no weights. I had a rotator cuff surgery the year before on the same shoulder so I just used the same exercises. Within 3 or 4 weeks the stiffness was pretty much gone. Getting strength back took a bit longer and still working on that. I ended up going to a PT this summer but it was more for pain I was having in my upper middle back. I think I lost so much weight that I just lost muscle mass in my back and that was where the pain was coming from. Both are fine now. I still only have about 95+% full motion on the right shoulder but no pain, no stiffness. Everyone is different but that was the case for me.

Good luck Bro'!

Greg

D-Byrd
Posts: 25
Joined: Aug 2010

Hi Greg53, I had rad treatmeants to both sides of my neck 5 times a week for 6 weeks, and took erbitux once a week for 5 weeks. I am 5 weeks out from my last rad this last tuesday and have been finished with erbitux for 3 weeks now. My biggest question now is should I rely on this pain medicine to cope with my situation? I can you that there are more bad days at this point of my recovery than good and I am trying to keep a good attitude. This commumity is giving me some relief though and I plan on staying here to get and give advice. Thank you all for your time in trying to help me.

God Bless you all...you are all in my prayers!!!

D-Byrd

luv4lacrosse's picture
luv4lacrosse
Posts: 1379
Joined: Jul 2010

Greg, you said it right on!!

Good to hear you are working out and the new pic update is great. My advice to you D is to not over do it with the excersise. I actually stayed home today because I was so sore today from the last 3 days of working out, I could hardly walk. The hardest thing to accept is you are not the same after this as you were beforhand.

Keep mobile however you can. My house has never been cleaner as i am always thinking of ways to stay moving. swiffering my hardwood floors, dusting things, loading an unloading the dishwasher all all good and safe ways to stretch, and stay limber. Atrophy is the worst thing you can do to yourself, so just keep moving.

keep posting and keep mobile.

All the best.

Mike

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Hi D-Byrd. I just had a modified radical neck dissection 2 weeks ago (20 nodes removed and only 1 SCC - but with extra capsular spread) and I understand what you feeling regarding the pressure in your neck. I try to sleep up on 3 -4 pillows and that seems to help. I am starting to do some easy yoga exercises to loosen up the tight muscles. I had my post-op with the surgeon today and he suggested some mouth exercises (puckering and then smiling widely - 10 times) and also some shoulder exercises: 1) walking your fingers up and down a wall from waist high to as far as you can reach and 2) shoulder shrugs. I hope this helps and don't worry, you're not the only one out there with cancer thoughts creeping into your head. My bad dream is that the neck drain is back in and they can't get it out!

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

Hi D-Byrd,
Mark was diagnosed in April, SCC left tonsil. Radical neck in May. He is 6 weeks post treatment (radiation and chemo), and most of his complaints today are from side effects of the surgery. Very stiff neck, lymphodema, healing nerve endings that are very electric.
Marine gives you good advice. And a chat with the doctor is advisable. Mark is starting Physical Therapy next week to learn how to manage these issues that apparently will be with him, hopefully to a lessening degree, for the rest of his life.
Good luck,
Kim

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