Suzy,
So many great ideas from the previous posters should help. I had esophogeal dilations for swallowing and dry mouth from medications before I had OC and learned a few things which have helped me since. I have had no radiation or chemo only surgery for mandilbe removal and later for reconstruction and a 4 weeks ago TOR(robotic surgery) for removal of a begnign growth at the base of my tongue. Through all this I have learned some things which may help you. Try to avoid dry crumbly food. Meats, rice and other grains and even sometimes bread are more easy to swallow if they are moist. Try to take smaller biites of food than you used to and chew carefully. If liquids give problems try a thicker version such as a hearty soup rather than a thin broth or take a small amount of soup with something more solid in the spoon. Heavy pasta in "shapes" can sometimes be easier to swallow than small noodles which seem to get stuck. Experiment with different textures and consistencies of foods and liquids.
Healing is a funny process. There are ups and downs but generally things do improve. Our bodies can get used to much and we learn to adapt sometimes without realizing then one day we realize that we have gotten better in some way.
Pain after any injury does diminish. Any tissue or muscle takes time to heal. Your throat is raw now. Two weeks ago my voice was hoarse and I had some of the same problems you speak of. Today I can tell you that I feel better than I did a week ago.

Please PM me if you would like to chat more.

Suzy-
My husband had the neck disection and removal of lymph glands too- He had about a year of the extra fluid in his neck and face, and finally the lymphatic fluids found alternate routes. Erik had a very large and tight scar on his neck as well, and the longer out he got from surgery and treatment, the tighter it became. Along with numbness, tingling, and muscle spasms it made things very difficult for eating and even driving as his head wouldnt fully turn. He tried Botox, but it had very little effect, finally a plastic surgeon decided to cut out the scar tissue and repair the area. His plastic surgeon said that since he was still healing when he got the radiation, it probably caused more scar tissue to form than normal. Once he had the surgery it was an immediate relief from the choking sensation. I hope this helps some. So sorry you are going through this, glad you found OFC as it has been an amazing tool for us.

Suzy

I also had a neck dissection plus radiation afterwards and my skin afterwards was just like petrified wood. Very hard and rigid and I could not turn my neck much at all.
My doctor sent me to a physical therapist who told me about "scar massage". Basically it was a gentle rubbing application of moisturizing cream (although he used a honey balm mixture)along the scar. The theory was that the rubbing/massage would break up the skin adhesions underneath the scar. The massage also helped a lot with the swelling and fluid retention Now this is not a heavy duty "Rolfing" type massage, just gentle pressure.
I still use a moisturising cream on the scars and when I don't they do tighten up and hurt.
It took me about four months for my scars to quit hurting all the time.
Unfortunately, I don't know a real cure for the hard skin itself as 18 months later my throat is still rock hard but the contracture pain and tightness are gone. I did ask for and get pain pills to help me deal with the massages and I recommend them.
Another helpfulthing is heat and moisture. I joined a gym with a steam room and sauna and did neck twist and stretching inside them. My therapist said that a nice hot moist towel (not too hot, don't burn yourself) placed on the neck was equally effective.
Hope this helps. I'll double check my wife's notes to see if I can add anything. Blame it on chemo brain or just wanting this all to be in the past, but I don't remember all the details.
charm

Suzy

To read a whole series of posts dealing with scar tissue and petrified wood syndrome of the neck, just type in the Search box on the left hand side of the forum: "scar massage".
Be sure to put in the quotes. Hit Go and a screen will pop up with a whole series of threads on this.
For now, here is a direct link you can just click on that will take you to a post I wrote when my memory was much fresher back in May 2009 on your issue
Scar massage

Hi:

I had two neck dissections 3 years apart, and had radiation twice. It is the radiation that is the culprit. It truly is the gift that keeps on giving. My left nd started to tighten up after about 2 years and now my right nd is tighening too. I think of it as a "cost of doing business", but I suspect that your connective tissue disorder might be making a tough situation worse. Time to have a good chat with your doctors!! Make them listen.

As far as swallowing liquids - I have a much much easier time drinking from a bottle as opposed to sipping from a cup. When my throat is tight the bottle seems to deliver the water to just the right place at the back of my mouth - maybe that will help?? Worth giving a try anyway.

Donna

Hi Suzy,

A familiar story to mine, 7 years ago...my primary was on my tonsil pillar, the secondary was under my chin (3 x 2.5cm). I had the radical neck dissection on that side, 41 nodes removed, 1 positive, thought that wasn't too bad of odds!). I only had radio, no chemo but I have had many problems since - rotting teeth, (14 root canals I think? My dentist has lost count also!). Besides the teeth problems I also had problems getting food down and reflux, so I went for a colonoscopy and endoscopy recently (family history of both ends!). They couldn't do the endoscopy because of a stricture, quite common after radiotherapy. Thus I went to my original surgeon (ENT & Head & Neck specialist) and last week he performed a endogastronoscopy (spell?) with his nice thin tubes and camera. He got past the stricture, performed a balloon dilation and after a few days of pain I can swallow better without throwing up! I see him next week and he wants to do another one. I don't mind because it means I can finally put on some weight (and hopefully not the last one to finish a meal in a restaurant! ;-) Really puts you off eating and my friends & family say I'm scrawny. Just lost my appetite for food even though I'm hungry).

It was so good to finally get a result - my doc said my oesophagus was about the size of a threepence instead of a florin (I see you're from the UK so you'll know what I mean!). And at least I can get vitamin pills down (even though I still halve them), without them getting stuck between the trachea and oesophagus (I timed how long a Vit B takes to dissolve, without throwing up! ;-) )

All I can suggest is see a good ENT man/woman (not sexist here!) and see what they say. The after pain is worth it, nothing like the RND & radio! And ask for a general anaesthetic;-)

Cheers!

Tizz (aka Meredith Brooks)

Any other questions feel free to ask:-)

Hi Suzy, I had a neck disection in May 2002 and that area is still hard to move and I had months of physical therapy which seemed to help, but then I had cancer again after 5 years from the first and they had to split my jaw to get to it (soft palate), most recently I had cancer on my tongue again in March and had surgery so honestly I am in constant pain. I take narcotics to help me with it. I am currently waiting on a biopsy done last week on my gyums where teeth had to be pulled last surgery. This cancer just keeps giving me a fit. Sorry to get side tracked, but for the 5 years after my first surgery and neck dissection and radiation, P/T helped and I def still have swelling in my face left side. I saw a speech teacher and someone to help manage the lymphedema during the first 5 years being cancer free, so maybe try a physical therapist, it certainly cannot hurt. I wish you all the best, you can pm me if you want to know more. Take Care.

Hi Suzy,

I had tongue cancer but no radiation or chemo, I did have a neck dissection. My neck gets stiff like yours, when it happens I massage it and it loosens up, I also massage my throat. I also move my head from right to left to loosen the muscles up, it works. My cheek gets tight and I massage that as well. I might have to do it a few times a day. Also my throat felt like it was closing I thought I had throat cancer, but I didn't it was acid reflux. I was put on Nexium it went away after a week or so.

I send away to Canada for my meds I'm not going to pay $350.00 for a 90 day supply. I pay around $160.00 for a 90 day supply from Canada, same pill different price. What the heck is that all about got me!!!

I hope this helps, take care.

Connie

Hi Suzy,
I had a modified radical bi-lateral neck disection 10/31/07 and still have some of the same issues, hard to swallow, no saliva etc. I keep working creams into my skin..so it isn't as hard as Charm's may be...but it ain't what it used to be either. And my beard is gone...think ZZTop...and I really miss it. BUT...when I look down I can see the grass, I can still put on a motorcycle helmet and turn my head, I really love soup and when I wake up I get to have coffee. I spoke to by cousin who had thyroid cancer 37 years ago and also had a bi-lateral, and she still has some of the same issues..but we beat it so far and we're here to help each other get through the left overs. Hang in there, do your exercises, smile as much as you can.

Suzy....My advice is not nearly as relevant as the advice from those whose situations are more similar to your own, but I do know that my own dr. said that I'd "better massage the h---" out of my neck scar so that it wouldn't become like a rope around my neck. I realize that you have many issues to consider, so ask him about massaging that scar, but don't wait to get started!!