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!