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

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!!

So glad you found this forum, Suzy - it's the best place to be for the latest information and compassionate suggestions from people with similar experiences. My son also had the swelling in his neck but he did the massage as suggested in above posts and it went away after a while. And now, almost 4 years later, the scar is barely noticeable. It would be a good idea, as mentioned above to check with the doctor about the swallowing problems. Do let us know what happens and how you are doing. If you would like to list info about your treatment under your signature line (see mine below), just go to the top of this page where it says "my stuff", click on "profile" and scroll all the way to the bottom and you will see a box where you can fill in whatever information you like.

Suzy:
I echo the seeing a physical Therapist for massage techniques. I had the "Turkey Waddle" going on and found it uncomfortable, for lack of a better word. The massage processes I learned help move the lymphatic fluids around and lessen the amount gathered just under the chin. The swallowing piece is still a challenge 4 years out but all the mayo and gravy help keep the weight at a comfortable range, otherwise I probably wouldn't garner enough calories. I still get some fluid build up with changes in weather (Maybe there's a new profession hidden there-LOL) so i utilize the massages routinely. Also, Biotene products were mentioned earlier. I use most of their products and whatever you do STAY HYDRATED, it helps. As for the scar tissue speak to your doctors about it. Hopefully it isn't a large part of the swallowing issues and if so maybe there are some alternative solutions to at least some of it.
Warm Regards,
Steve

Hi Suzy from a fellow "Brit".You have had some brilliant help and advice from the gang,and i have just a few things to add that are relevant to UK users.Firstly don't despair if you don't get any answers to your posts for a while.This is to do with the time differences.Our USA family hit the boards late afternoon until about midnight,Aussies tend to reply early hours of the morning and things can be a bit sluggish over the weekend.

Secondly unlike our friends in the states,we are bound by the rigid appointment system of the NHS,and are not able to ring our consultants or ask to be seen whenever we wish,this can mean a long time between appointments and a lot can change over a few days in the post treatment phase of Oral Cancer.

If the swelling is very bad,then contact your local hospice.Most hospices in the UK have a Lymphoedema clinic and a specialist lymphodeama nurse,who is specifically trained in lymph massage.Bombard your GP until he refers you for help.Contact Macmillan or Marie Curie and ask if they have a service which may help, and always remember there is a support system here and also on our British based sister foundation The Mouth Cancer Foundation run by a Doctor based at Saint Lukes hospital in Bradford.I have an e- mail address in my profile that you are welcome to use any time.

good luck

Hi Suzy

Prior to being treated for left tonsillar cancer Carol couldn't eat and had a very difficult time even sipping water which ended up coming out through her nose. After radiation and chemo she was beginning to eat some very soft foods. Unfortunately she had a recurrence shortly after and underwent surgery. Carol is 3 months post surgery and it still feels as if something is stuck at the back of her throat, having difficulty swallowing. She is doing the massages and exercises but her neck is still very stiff and can't lift her left arm too high. It is still too soon after surgery and hopefully this will lessen over time.

It is indeed good news you are able to eat some foods so soon. This is a positive sign and you are on your way to healing! I would also strongly encourage you to talk to your doctors about your issues and getting them addressed.

Sorry I'm not able to give you anything directly related to your questions, but you have come to the right place. The folks here are a wealth of information and insight. I haven't posted in a few months, but this is the site that provided me with tons of info to OC, both the pros and cons.

Linda

Wow !! It is great to have access to so much information, more importantly, this is 1st hand experience that you are all sharing, with great compassion and it makes a real difference to get such responsive support. I want to say a very big "Thanks" to all of you, I have read through your replies and you show much empathy, alongside some good solid advice regarding things that have worked for you and suggestions that I can try.

I feel like I need to give this all I've got now and will be getting down to some PT next week, as well as trying some other things you have advised. It seems the surgery can heal differently after RT, but as my SCC was advanced, it was not possible to do the neck dissection before RT.

Good luck to each and everyone of you.
Suzy (London)

After my surgery, swallowing wasn't too back once the initial healing of the tongue happened. It went downhill fairly seriously towards the end of Radiotherapy (June 2010) but is now somewhat improved. I still feel a tightness in my throat when I swallow but I sense it is slowly (and I mean slowly) improving as is my supply of saliva. For some time I used to wake up 3 or 4 times with my tongue glued to the top of my mouth but now I make it through the night albeit with a slighlty gummy mouth most mornings. My consultant says things will continue to improve for some month still so I remain optimistic. (only way to be!)
My chin is looking fairly good after the neck dissection (April2010) althought my neck is a little lopsided after they removed lymph nodes from one side. The tissue around the scar is still quite stiff or hard to touch but again I am sure it is slowly improving. I do some simple neck stretching exercises as recommended by my physio which I believe assist in healing the scar tissue but I dont use any creams.
Hope this helps Martin

Hi Suzy,
I'm glad you got some good responses and ideas from the others. Mike did not have the neck dissection, but he did have the choking sensation and the feeling of items getting caught in the throat. He also got the "turkey chin". That went away on it's own. The swallowing got better with time, and he needed a couple throat dilations to help it along.
I am wishing you the best as you try some of the suggestions offered as well as your PT.
Keep us posted as to your progress.

Ginny

Suzy, welcome to OCF. Im so glad you have so many responses to your questions. Im sorry I didnt see your post til now. I always try to make the new members feel welcome. Its important for us to look out for each other. Ive made many friends over the past 3 years on OCF. While the majority of us do not have medical backgrounds, we do know quite a bit just by being patients and caregivers. Im glad you found OCF to help you with your recovery.

I noticed a few things you mentioned in your post. First was the fact that you very recently finished with radiation and then had the neck dissection last month. After undergoing radiation the healing process takes much longer. You mentioned suffering from another problem which further comlicates your ability to heal. I had a long surgery last year and it took me 10 months before a tiny hole would close. This hole was located next to the area that was radiated. I have experienced things taking up to 10 times the normal rate of healing in this area. My docs always are telling me to be patient and that it takes a full year before things will heal. Unfortuantely it can take up to 2 years to recover from radiation. It continues to work long after you have stopped having treatments.

As far as the eating and swallowing goes, I would consult with a speech therapist. They can do a swallowing test and help to figure out what has happened to make it get worse. I suspect it may be due to swelling from the neck dissection. This is a very uneducated guess. Im thinking you are probably still swollen from having radiation and the neck dissection further irritated this and caused more swelling. My docs tell me swelling can take 6 months or more to fully subside.

Have patience, its going to be 2 steps forward and 1 step backwards for a while longer. But soon, you will start having more good days than bad. I wish you the very best in your recovery.

Hello I can't add a whole lot that wasn't said already. We know that though we share the same disease everyone's cancer is individually different and we respond differently too treatment as well. I do agree with the swallowing exercises; though my swallow is fairly well. My hospital never gave me swallow exercises; I am talking to a girl now is is going through treatment at MD Anderson and she was given swallowing exercises right away. Some people may have had swallowing problems before this even started but didn't realize it. Also, as woman you may be very petite so less tissue, surface to work with; which brings me to the one thing know one spoke about surgery after radiation. I like most people was able to have the neck dissection before radiation and it effected very little tissue. However, in your situation I'm not sure why they waited either they thought they could go with out the neck dissection like Michael Douglas or the tumors where in operable in the neck at the time; but I was told and have read that surgery on irradiated tissue is a lot more difficult. This may be where your problem lies. All I can say is take the other members above advice, also not sure what hospital you are at but if you are not happy with there therapy u may need to search elsewhere. Best of luck! Big Hugs!
Charles

Dear Suzy,

I am so sorry to hear of your ongoing problems with the side effects. I can empathize with how little the Docs can seem to care about getting to the bottom of some of these life altering problems and how hard it can be to find the right help.

I will divide my comments into 2 parts: first my theory on the direction that your surgical oncologist should be going in to figure out what is going on with your swallowing and second, my scenario which may help with the process of elimination.

My Theory: Since your swallowing problems appeared after the neck dissection, the possibility that a nerve was nicked or severed should be considered. For example the vagus nerve controls the action of the cricopharngeus muscle, (also known as the Upper Esophageal Sphincter, or UES) which is normally flexed and must be relaxed to facilitate swallowing. Of course there are lots of other nerves involved. Your surgeon should be forthcoming in helping with the testing necessary to determine if nerve damage during the neck dissection is indicated; after all, if medical practice in the UK is like it is in the US, you signed a complete release of liability before they proceeded with the neck dissection.

My Scenerio: I had tongue cancer which had metastasized to neck nodes on the right. Treatment was a partial glossectomy and right neck dissection followed 3 weeks later by 6 weeks of chemo radiation including Cisplatin and about 60 GY to oral cavity and both sides of neck. After surgery I was OK. During chemoradiation I lost the ability to swallow anything, taste anything or generate any saliva. I was on a feeding tube for 10 months. After 2 months of not being able to swallow they did a swallowing study where I attempted to swallow liquids and they observed with x-rays. The liquid seemed to be getting stuck at the UES. They concluded that the neck muscles that act to help pull the UES open through a connection involving the Adams Apple had been atrophied in the radiation treatment and had me doing neck and swallowing exercises. This went on for 2 months with no results. Finally I saw an ENT who specializes in esophagoscopy with a tube equipped with a video chip. The problem was immediately identified as a stricture, ( scare tissue) located just below the UES. Hence the reason for the misdiagnosis from the swallowing study.

A bogie dilation procedure was done to open the stricture. I have been able to swallow fine ever since. Unfortunately I have severe xerostomia and have not gained back much ability to taste. I get my nourishment from chocolate Ensures.

I saw on one of the other posts a reference to botox treatments but no explanation. My understanding is that botox reduces hypertonicity of the UES muscle. This may help if nerve damage is suspected. The downside is loss of protection from reflux.

I hope you find relief soon. If you want more info from me write directly to [email protected]

Sincerely,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09, biopsy got it all, praise God!