I have a query and not sure where to post it. I was treated for tonsil cancer, had chemo-radiation � 6 weeks radical radiation, and then afterwards, I had a neck dissection at the start of October to remove lymph nodes on right hand side. I finished RT the last day of August, and I seemed to be recovering from the radiation effects pretty quickly and by start of October was able to eat a good range of foods. I stopped oral intake of food for only 2-3 weeks but maintained ability to take fluids, especially water.
After the neck dissection everything went wrong. I have more difficulty now with swallowing fluids, although moist foods are fine. The space in the back of my throat appears to be reduced, as if the back of my tongue is so close to the back wall of the throat that it is touching some of the time: horrible sensation as if i have something stuck there, and worsens the dry mouth/throat problems. The second problem is that the a lot of very hard scar tissue has formed on my neck, especially along the scar line, above it and below my chin, centre neck over area where adams apple is. I think the healing process has become extreme in my case, possibly due to the fact that I have had SLE )connective tissue disorder) since 1996. I am interested to know, how long I am likely to have to endure this dreadful discomfort (it feels like I am being strangled all the time, it tugs when I am eating and I look as if I have a double chin when in reality I am very slim). There is some lymph collecting which causes the double chin, but the real issue here is the very hard scar tissue which is hell to live with.

I notice the photos of Brian Hill, founder member, and the post operative swelling he experienced, but not sure for how long that continued. Would like to know more, both from the other members or indeed anyone who can help.
Thanks
SuzyS

Suzy, can you tell us when you finished treatment? If it was recently it does take a long time ..months to get back on track. I had a BIG double chin for a while, maybe a triple chin!!
Id did go down after 6 months or so. So tell us your time line!
Steve

Hi Suzy,
My husband was diagnosed with tonsil cancer almost 8 years ago. He had radical neck dissection and then chemo and radiation. He had very rigid neck tissue, mostly from the radiation. Most of the rigidness has eased, but he has no feeling on the portions of his neck that received the most radiation (side the lymph node metastasis was on).

As for swallowing, I don't remember him ever complaining of the closed throat feeling you describe - but will say that swallowing remains his biggest lasting issue. As you mentioned, fluids can be the worst. He seems to cough after every sip of many liquids. He thought it was the giant hole in his throat left after removal of both tonsils and surrounding tissue. But he talked to his treating ENT at a office exam a month ago and doctor said that it is the destruction of the swallowing muscles as a result of radiation.

All of these issues have gotten better with time. We thought, at one point, that he would never again eat a piece of bread. These days, he enjoys baking our bread (and then proceeding to eat half the loaf when it comes out of the oven).

I don't expect that any of this post helps you that much with your particular set of issues, but mostly just want to let you know that things do tend to get better with time.

Best,
Anita

Hi Suzy.... welcome to OCF and so very sorry to read about your discomfort. Although scarring from a neck dissection has been a problem for many people it's not particularly so for me - but my neck is definitely tight and still largely numb on the surgery side, so I sympathize.

Have you tried a massage therapist/physical therapist? That can really help, as can some topical ointment rubbed into the neck daily. Even something you get at your local chemist (that's the word for pharmacy in the UK, right?) could be helpful.

I'm very encouraged to read that you were able to get back on solid foods so quickly! Took me months. But your swallowing difficulties lead me to wonder if you have either some esophogeal narrowing or something else going on down there that bears attention.

I had both, and have had my esophogus dilated maybe half a dozen times by a gastroenterologist. You might ask about this. Like you, I felt that food was continually getting stuck back there and I know the feeling is horrible. The dryness we all get after radiation doesn't help of course. Be sure and gargle with water and baking soda, that often helps. There are also sprays and such... I don't know much about them specifically, but you do certainly need to be on Biotene or other dry-mouth specific toothpaste if you're not already.

I also saw a swallow therapist and had some real-time radiation scanning that determined that the mechanism wasn't quite working correctly. The therapist gave me exercises to do and, over time, the problem was significantly reduced.

Time is a great healer as you know, and my guess is that most of what you're experiencing will improve. But I'd still recommend you speak with your docs about possible narrowing and/or other swallowing problems. And of course about what you can with the scarring issue.

Please keep us informed. My very best thoughts are with you.

David 2

Hi Suzy,

I had the some f the same issues during the healing process. I am 7 years out and still have discomfort in my neck, muscle spasms/cramps that still wake me up at night, what can only be desribed as a ledge in my throat where food gets stuck if I dont use liquids to wash it down, shoulder pain, and little saliva when I talk too much. Like you moist foods are easier to swallow.

You will get used to it. It is frustrating but it does get easier. I always say, "It's a 1000 times better than the alternative!"

I have found that Botox works extremely well in calming everything down. I go every three months for the injections which take about 5 min and for the next three months I am hard pressed to even remember I had cancer with the exception of the saliva and the swallowing. Anyway, you will also get better at coping. Right now you are not used to the "new" you. It will eventually become second nature and you will learn to live with it like all of us.

Great job on making it through! If you need anything please let me know

Regards,
-rh
Robert Hamilton

Hi Suzy,
I have had two NDs four years apart and have not experienced any swallowing problems from them or narrowing of the throat. What does your dr say about this? Have they done a swallow test or endoscopy to determine what the blockage is?

As to the hard scar tissue and the fluid under the chin, a physical therapist should help both. My PT used moist heat for 20 minutes and then massaged my neck in various directions to help the lymph fluid find new paths. He also massaged the scar both crosswise and lengthwise. You can do that also. A Vitamin E cream might help it heal. I used Biafine which is prescription but I don't know if avialable in UK.

Take care,
Eileen

I can not speak to the scar issue on your neck as I did not have to have lymph nodes removed. However, at about 3 months post treatment I began experiencing Lymphedema - alot of "swelling" in my neck and also lower face. My RO got me into physical therapy at the local hospital. It was handled through the wound treatment department. The PT worked with me with massaging techniques for my face and neck that made a huge difference in the amount of fluid that was collecting. I was able to do these massages at home also Over the course of the next two months it all but disappeared. Also, I purchased a garment from Solaris that I wore at night that also helped. Following is the info in the garment.

solarismed.com
414-918-9180

Item Code FN-MA "Tribute individually manufactured therapeutic nightwear edema garment" (Previously FN-NK) E1399

Good Luck. PM me if you are unable to get results from your Dr getting a referral to a PT. I think I have kept the details and diagrams of the exercises I did and I can email them to you.

Suzy, I think you are going thru what the biggest percentage of us are. I have a lot of the same wrong things as you but my ENT and Oncologist insist they are Severe radiation burns and scars. I won't tell you anything I haven't ben convinced of. Both of these Drs told me that it will just keep getting worse because I insist on nothing but the truth and facts. It's been over 3 1/2 yrs and so far they hit the nail on the head. It is worse daily it seems, but I am handling it. Even what soupy food I was eating are getting harder to swallow and get out of my mouth. I had to have my teeth removed and rad along with chemo and the seed implants. It seems I have a lot of hiding places for food an when I brush my mouth, I rinse out a good part of anything I have eaten. I hope you get by this stage and feel much better as time passes by. This isn't the best life for us but it sure beats the alternative. Tio top this list off, I have just had an aortic abdominal surgery 2 weeks ago for th time but am healing fast. Any questions I can answer or maybe clear up, just ask,. I'm not the brightest bulb on our tree, but have been thru quite a bit the last few years. I have you in my prayers and give you my best for all things. Jim Ihope I helped you a little anyway.

Suzy,
I am 7 years out from treatment, but had many of the same issues.
I think the swallowing difficulty is likely a radiation side effect that just coincidentally appeared around the time of the neck dissection. I had swallowing trouble and trismus both come up around 2 to 3 months after completion of radiation. recovery is a slow, sometimes frustrating process.
The double chin issue is probably a result of the neck dissection. As your body developes new drainage paths to replace the missing lymph nodes, it will improve. As a couple of other posters have said, you might check into physical therapy for massage techniques that can help this along.
I also received a great deal of help with my swallowing issues from a Speech and Swallowing Therapist. After a radiographic swallowing exam, she gave me a group of exercises to perrform, tailored to my specific problem. If your health service has such a therapist available, I would heartily recommend you take advantage.
Of course everyone's experience is going to be different, but many if not most of my issues have resolved over time.
As I write this, I'm eating a bowl of chicken chili, something I wouldn't have even considered 3 years ago.

I hope this info has helped.
I wish you the same good fortune that I have had in your recovery.

Good Health,

Chuck

Hi Suzy:
I wrote a long reply earlier, and for some reason it didn't go through. Anyway, hope this does. I see a lot of others have replied with good replies, so that's good. What you are experiencing is probably what all of us have experienced. I had my tonsils removed and after they found squamous-cell cancer underneath right one (Nov 2007), and spreading to other side in some nodes, I had 7 weeks of radiation and chemo. I ended up not being able to swallow and had a feeding tube for almost a year. Afterwards, I was slowly able to eat soft foods and anything with gravy on it. I still (after almost 3 years) have trouble swallowing and have the feeling you defined as something stuck in my throat all the time. Just yesterday, I went to Nashville, TN, Vanderbilt Hospital and had a specialist do a swallow test. It seems my muscles in the back of my throat at the end of my tongue are weak and my food just sits there unless I can drink something to wash it down and swallow HARD. All they recommended was tongue exercises, which I'll send you if you like. When reading other posts on the OCF, you'll see that some get over the trouble of swallowing sooner than others, so I hope you'll be one of the ones who does. As for me, after almost 3 years, I seem to be almost as bad as I was at the beginning, except I can get by without a feeding tube. I do supplement my food intake with a couple of cans of Carnation VHC Instant drink (it has 560 calories per can. Here in the States you can usually order it from a CVS Drug Store, but you can also get it on the Internet. Again, I hope you recover fast and all the other responders to your post have excellent suggestions and you get a chance to see you are not alone. Keep in touch.
julieann