choking sensation after neck dissection/radiation - Oral Cancer Support

Hi all,

My husband finished his brutal treatment [neck dissection both sides, 2 cisplatins & 33 radiation] 5 weeks ago. He has suffered from a weired choking sensation [constantly feels like being strangled on neck] few days after surgery and until today, this sensation just getting worse. He weaned off all pain med within a week after treatment since he doesn't think the pain med is helping, as he didn't think it is the pain bothering him, it is discomforts of being strangled 24/7. He felt depressed from it.

He can swallowed well and had tube pulled out 2 weeks after treatment. But his neck is getting stiffer and this darn strangeled feeling is torturing him.

Anyone who can share some insight on how long can this heal itself? We have been researching on scar massage/PT help as well. He also suffered from weak shoulder after surgery. Our first post on this helpful site, and any feedback will be greatly appreciated.

Sylvia
Husband has Tonsil Cancer IV HPV 16+

Welcome to OCF! Treatments for OC sure are brutal! Congrats to both you and your husband for getting thru them. It sure is not easy!

Sounds like your husband may have some swelling which is making him feel strangled. I would discuss this with his ENT or whoever is managing his after care. Dont put it off, as this could be a serious problem. Please call and make an appointment and tell them your husband has a serious problem. He may need some steroids to help combat the inflammation. I would think the doc should do a scope and see if there is anything there that is causing this.

The stiffness is something many of us (including myself) learn to adapt to. My left arm I cant raise and has a limited range of motion, its permanent for me. My situation is much different, its from several major surgeries including removing my left jaw and moving muscles around during the process. Did your husband have a neck dissection? Thats usually the cause as it has something to do with muscles and nerves in that area. Im sorry but I do not have a medical background but I am very experienced with most things related to OC. You will learn this forum is a wonderful place to get a good education about OC and HPV. Have you looked into PT? That should be very helpful as well as massages to help with scar tissue.

Recovery can take a very long time. For most of us we are pretty good at about 6 months post tx, but at the year mark even better. It can take a full 2 years for a complete recovery. Best thing for this is high protein whey powder added to beverages to help boost his protein intake. that will help speed his healing. Keeping up at least 2500 calories daily and 48 oz of water for at least the first year after treatments will also help him to bounce back easier.

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Best wishes!

Hi Sylvia, sorry you have cause to join us all here.
I agree with Christine that you should definitely get this checked out with your Husbands medical team. I think the fact that he can swallow is somewhat reassuring.
The bilateral neck dissection does in itself cause a very hard and stiff neck. My husband was unable to turn his neck for 6 months postop and needed Physiotherapy for 3 months to help loosen up both the neck and shoulder muscles. This has taken a lot of work and Kris continues to work on these muscles by going to the gym a couple of times a week. Radiation makes it all worse and causes the tissues in the neck to become really hard, - like concrete.
After 3 months of intensive PT Kris was back driving, mowing lawns , using the chainsaw, hanging out the laundry etc.
Hope this helps,
Tammy

Thank you ladies. Together we do feel stronger!

Such sensation had been mentioned to my husband's docs every time when we visit them. However, no one can give us a certain answer except "time could heal and hang in there". The radiologist says his neck skin is still "soft" and acknowledged my husband has a bit lymphedema on his cheek area, but he says that is very minor and stating those lymph liquid usually starts under chin area. So to him it is not a big problem and just suggest us to PT & massage. But again, no firm help on the strangled sensation.

We googled 'choking sensation' and actually see it might be the combination effect of lymphedema, scar tissue and fiborosis. I am asking for help from the community if anyone else who actually have gone thru this and give my husband some guideline what to expect next few months. He always thinks this is going to be life time.

Thanks Christine's estimated timeline for recovery. I think it will be helpful for my confused and frustrated husband.

And thanks Tammy for sharing your experience with your husband! Those are encouraging!

Keep them coming!!

Sylvia

Recovery can be a very frustrating time. Its full of ups and downs. It seems like every time you begin to feel ok you slide backwards and have a few bad days.

Here is a very broad estimate of what I have witnessed on the forum with how most members recover. Keep in mind keeping up the high calories (at least 2500) and good hydration (at least 48 oz) every single day for at least the first year will greatly help to speed things along. Also try having a diet high in protein to help with healing. Ive touched on just a few of the issues OC patients deal with during their recovery.

The first month after finishing rads things are difficult. Radiation keeps working even after the patient has finished. It takes about 3 weeks before a patient begins to have some easier days. There is thick mucous that can choke you. Some use a portable suction machine to get the gunk out of their mouths and throats. Severe fatigue is normal.

The second month is still difficult. Most still have the thick mucous going on. Many have their mouth sores and neck radiation burns beginning to heal during the second month. Food still mostly tastes pretty bad, nothing even close to what it should taste like plus its burnt and salty. During this month the patient begins to feel a little better gaining strength and the fatigue begins to lessen slightly. Around the end of this month the heavy mucous stops abruptly to be replaced with dry mouth. This is seemingly an over night metamorphosis.

Month 3, the patient begins to have more good days than bad. The mouth sores are gone and the neck burns have healed. Most patients will begin to get their sense of taste back but its still hit or miss with many foods tasting 'off'. The dry mouth continues and is very annoying. It interferes with sleep and causes the patient to carry a water bottle with them everywhere they go.

After the first 3 months of recovery many patients will have mainly good days but dont be shocked by a couple bad ones here and there. The further out from treatment, the least amount of bad days a patient will have. They can still have some long lasting fatigue and get tired easily. By now, the patients will be able to resume eating many foods that they had not been able to eat while being treated. Food can still not taste as it should but its better tasting than when they first finished treatment. Seems like some foods will be ok while others are awful with no rhyme or reason to it.

Many patients continually worry about recurrences. Usually the first check up scan is about 3 months after finishing radiation which can also cause some anxiety. After going thru the brutal treatments, its a patients worst fear to have done all that for it not to be successful and to be sick again. This can really do a number on many patients, they can become obsessed with "what if it comes back" way of thinking. This is something that takes practice to overcome. Its not easy to learn how to shut it off and live in the moment but the longer they are out from treatments the easier it becomes.

Things really will get easier for your husband. I know it seems like its a never ending cycle full of many ups and downs. With recovery being so slow its quite alot of downs at first.

Best wishes!!!

Hi - your husband definitely needs physio, he should also be doing his own at home,the stiff tight neck is very normal he likely is scarred from treatment and inside and our the radiation tightens and shrinks tissue particularly scar tissue. This has to be loosened up by stretching. Acupuncture can also help. Welcome and best of luck!

Thanks Christine & Cheryl. My husband has been doing stretching at home ever since he is back home from surgery. It is the 5th week after all treatment, he says he neck is even worse than before...this is frustrating. Christine's reply seems make sense that the radiation is working and making his neck even stiffer.

He will be seeing PT twice a week and hopefully this will make him feel better.

The strangled feeling maybe need some med help to relieve? I am thinking to schedule a visit with his surgeon soon and take a look inside his throat, hoping to prove something that med can help.

Sylvia

Perhaps the radiation has caused swelling inside his throat which would mimic choking. Has anyone scoped him ? Predisone would reduce swelling and are very small pills. Or even a couple sessions with a Nebulizer (similar to the inhalers asthmatics use).
Sadly you often have to be quite demanding as the radiation doc and most of the team focus on the cancer not these quality of life issues
Sorry to hear he is having such a hard time. Christine's time line is excellent and reliable. The neck dissection is brutal. My neck felt like petrified wood, literally. I would reconsider pain pills as it made the strenuous PT easier. Pain is not good for healing.
Feeling strangled is not normal, so keep pushing for help. Sometimes Ativan helps reduce unconscious muscle clenching. Just throwing out med ideas.
Charm

Sounds like inflammation, and scarring of the skin tissue from surgery, radiation and as others have mentioned, has different names. I know it as leather neck, and turkey neck. With the lymph nodes removed there is slower drainage, and gets baked up causing swelling in the face, chin, neck, and takes time to go down.

Discuss this with your doctor who may prescribe meds like ant inflammatory, physical therapy, manual lymph drainage massage, acupuncture, further testing. Light exercise, like walking while swinging arms overhead or at least above heart will help with the lymphatic drainage, also swimming, bouncing in place on a trampoline helps too, but check with the doctor for any restrictions. Good luck.

An update here:

We have seen the surgeon & medical oncologist this week. The surgeon scoped my husband and didn't find anything abnormal. No swollen issuses. He says he doesn't agree with the sensation being called 'strangled', it is the tightness from neck after the combined therapy. Both doctors suggest PT & massage therapy helps. The medical oncologist states my husband's depression makes the tightness even worse.

This week is my husband's third week of PT. Seems a bit helpful on improving his shoulder's range of motion, but the tightness is not improving at all. I understand it takes at least couple more weeks to see more result from PT.

Now that my husband keeps feeling depressed with no answers or helpful insights from the doctors in addition of the slow slow progress from PT. He saw the psychitrist 2 weeks ago and was prescribed anti-depressant. The doc says a better mood will help the brain to re-assess the pain/discomfort level. I wonder if any of you have the similar experience? Will anti-depressant help? He didn't fully start the anti-depressant treatment, since only after 1 pill, he starts to have trouble sleeping & feeling nausea the next day. He discontinued it and will see the psychitrist tomorrow.

Can anyone share your experience how long to take for the neck tightness to improve? Surgeon says no nerve or muscle is damaged...but my husband is suffering the severe tightness on neck and very limited shoulder function.

Thanks everyone!

Many OC patients have struggled with depression and anxiety. This is very common. They also do not like to take meds but it really does help. Please encourage your husband to at least give it a try for 2 months and then if it has not helped to discontinue it. With hundreds of meds on the market, Im sure the doc can find something that will work for your husband.

The strangled feeling is not as common. Many will feel tightness and have swallowing issues but not exactly what you have described your husband feels. But then again, remember everyone is different and has their own little differences and responses to meds, treatment, recovery etc.

Please keep us in the loop. By you posting it could help others who are going thru similar circumstances.

Best wishes with the doc!

Hi... a neck dissection causes muscle and tissue damage and therefore scar tissue. Radiation causes a tightening and damage to anything in it's path. I am two years out of rads in two weeks - and I still have tightness on the surgical side - both sides of my neck were radiated, but it's the operative side that is TIGHT... So I know what your hubby is talking about. This is permanent, it may ease in time but the numbness, and tightness will always be there to some degree as far as I know. Acupuncture and physio, and lymphatic massage all help loosen the area up but it requires diligence daily. As for depression... I'm sure there's plenty of advice here. With all the information in the news about antidepressants, I would push him to go to talk to someone first before taking a pill. He may have to come to terms with the loss of what was his NORMAL STATE... his fear of cancer, and all the baggage that comes with it. hugs and best of luck to you both.

Thank you Charm. I wonder how you get thru the leather neck feeling? Can you still drive? Seems you have gone thru quite a lot treatments, how can you hold your spirit up when you live with a very stiff neck?

Thx Christine &Cheryl, just notice your posts are on my 2nd page.

Cheryl, based on your experience, it seems the surgery side's tightness didn't go away after 2 years? Has it been relieved at least a bit as time goes with all the stretches & PT going on? As my husband has dissection on both sides, it is no wonder he has that tight collar on neck. Has the tightness pulled your head heavily? Did you lost some motion range on shoulder? Can you go back to a new normal way of life? If yes, would you share with us how you get thru all of such discomfort.

Christine, do you think the anti-depressant will help relieve his sensation on the tightness? I believe as my hub is constantly focus on his neck's sensation, it does make it feel worse. Do you think so?

I dont know for certain if it would work but its worth a shot. I do believe when someone continually thinks about a certain medical problem they will begin to think it is worse than it actually is. Im not saying that your husband isnt having a problem. Im thinking he does have something going on but if the doctors cant help him maybe he is thinking about it so much that its all he thinks about and his focus is on how bad this is, not how lucky he is to be alive after everything he went thru. I would give it a try and if it does not help in 2 months (they take a while to work) then discontinue them. I sure is better than having him feel like this all the time.

Good luck!!!

Sylvia

One oncology nurse called it the Wooden Soldier syndrome . I couldd not move my neck without turning my entire head and body. It took a while before I could drive again. Physical therapy and time very slowly worked. My skin actually felt like petrified wood. You could even knock on it. 4 years later, there is still a marked difference between the left side where the dissection was and the right side where only radiation was .
I am sorry for your husband's pain and sorrow. How do I deal with it? Both my deceased father and mother set the example that a man or a woman do what needs to be done and endured for the sake of the family. I try in my way to live up to the sacrifices they made for me, my brothers and sister.
Charm

Hi there yes over time tightness has gotten better - it always feels tight, but I had acupuncture to break up the scar tissue, and return blood flow to the area, I also did lymphatic massage to move the fluid that's trapped there. If he had a lymph nodes removed on both sides then he's likely got a lot of fluid trapped there that will make things feel tighter.lymphatic massage rebuilds the pathways and allows for the lymph fluid to drain. My shoulder's about 98% I have good range of motion but I also have a pinched rotator cuff not related to the surgery but that hurts when I move a certain way. I have full range of motion with my neck.. Bending it back is a bit hard but the more you stretch it the better it gets.

it's a long haul. Your hubby having had both sides done has to work twice as hard but it does pay eventually, not everything works for everyone but you never know until you try and and by trying I mean give it a few months to see improvement. Though there often is immediate improvement - continuing makes it last longer if you get what I mean - if you do decide to do have massage etc... Make sure you get someone who is certified and knows what they are doing.

best of luck, and despite it all I do feel good.

Sylvia,

I have the same choking feeling. It's like someone has their hands around my neck and is squeezing. I have started a laser treatment to try and break up the scar tissue, but it's only my second treatment on Friday.

I'm just starting to feel sensation on the incision lines, so hopefully that's a sign that the tightness will be letting up. I'm 6 months post surgery so, it's slow going.

I'm posting the laser updates as they occur and if it works I will pass on the specifics. In the meantime, physio has helped somewhat, along with lymphatic massage.

Can you please post a link on the laser treatment? Was that geared for scar tissue? Just want to study the possibility. Thanks!

Also anyone heard of the plastic surgery helps? I somewhat came across a post here stating her husband gets immediate relief after the plastic surgery. Really don't know whether we should give it a shot.

What kind of plastic surgery? In my opinion having a surgery is a very drastic way to fix this problem. I previously suggested anxiety meds. That would be so much less invasive and permanent than having an operation. I really think by taking something to have your husband in a better state of mind and much calmer, he wouldnt feel so lousy. Its worth a try.

Hi...I am suffering the same symptoms ...I was find for the first 3 months after my radiation but now it seems like my lymphedema is getting worst by the day....it starts in my neck and runs up my cheek...its not terribly painful..but constantly there so it reminds me of the cancer every minute of every day...I really hope It gets better and I can lead a better life..i have an appointment with a Lymphedema massage therapist Monday...praying this will help ease the stiffness / numbness...as I always say...if I need to live with this pain cancer free...I will do so....just afraid its not normal...as everybody that goes through surgery/ chemo/ radiation goes through...so many aches and pains that you constantly worry if its a reoccurrence.....I've noticed this post is a few months old...how is your husband now?