Oh, by the way Bev, just want to say I believe the neck tightness is as real as can be! It is this real discomfort/pain in the neck that leads to any anxiety. The anxiety can be a natural side effect to the pain. Anyone who thinks it's all in someone's head should go through the surgery themselves to see how it feels! Don't ever let anyone tell you it's all in your head. That is insane! Naturally the neck would be tight after such extensive cutting and scar tissue. If the person had radiation there is even more scar tissue. Think how much more empathetic a Dr. would be if he/she had to go through this themselves. Of course I wouldn't wish it on anyone.

Angel18 you are so right.

We can relate to many things you are saying. Yes the surgeon likes to call it anxiety. He looks at you like you are crazy with all your complaints and makes you feel like it's in your head. My Dad is not a complainer; he has a high tolerance for pain and he won't take pain meds unless very very necessary. So when he tells me something is bothering him then I know it's true. Yes I do think anxiety kicks in and can add to the problem however anxiety is not the problem!

Back in May he got a cold and some nasal drip and was having throat spasms. His breathing would cut right off for a few seconds. This was so so scary. The surgeon acted like he never heard of this. Then they suggest nexium for acid relux. Well I go and google and find an entire community of people out there having throat spasms from either acid reflux or nasal drip and they all describe the same thing and they all say the dr's act like it's anxiety.

I aksed for a swallowing test. The surgeon agrees to anything we want. What makes us mad is why do we have to ask; why don't they suggest it. The test showed because of post treatment swelling food and fluid sit in the epiglottis and cause some coughing and irritation. He has a trace of dyphasia and no aspiration. The test was done on a bad day for him so the results are actually good.

Well the spams eventually stopped and the breathing study people showed him some exercises the stop the spasms if they happen.

For the past few weeks he's been having a phlegm issue and lots of salavia in his mouth. Again no answers from the surgeon. We go to the dentist at the cancer centre and he tells us more about it. He also said most head and neck patients have no idea what they are getting into with the surgery.

We too asked many questions before surgery and the surgeon never told us the half of it. At the time I did my research the people I chatted with on the OCF forum said it was easier to get thru then the rad treatment. No one told of these stories like here on this forum.

Maybe the dr's don't want to scare people off having something that they feel they need. It's a puzzle to me. I told one of the dr's they should hand out some literature to patiens after the surgery explaining all the side effects so people don't panic and so they can learn to cope with it better. And here's the thing that no one can give you an answer to which only makes it all the more scary. How do you know the differance between 'feeling' like you are choking and having breathing problems vs it actually happening?

Yes they are brilliant at what they do and we know for sure we have one of the best surgeons here. It just angers me that they look at you after like you are crazy. COME ON.....with all the talking we do here it sounds like everyone is having the same complaints.....so why the heck do they act like they never heard half of this.

Best wishes to you all! And this forum is great and so very helpful!
LisaB

This message has been edited. Last edited by: LisaB Canada,

Hi there!
I have family that live in Devon pa- those Btritish names!.
I had neck dissection in June last year. I had no use of my arm and had loads of pain in my shoulder. I was determined to get thru it and continued to play tennis and golf ( badly!)I still have no feeling from my cheek downn to the top half of my arm. I have found that I have an aromotherapy massage every 3 weeks and it keeps me from being uncomfortable- any longer and I am in pain. My neck is still stiff despite doing exercises every day-having said that i managed to win a tennis match tonight and played for 4 hours! Keep doing the exercises they do help!They hurt but you MUST do them. Same goes for speech therapy exercises. I now speak properly and can open my mouth fairly wide- but only because I was dedicated( and still am) to the exercises.
I find I am in pain when I sit for long periods ie on a car journey or at the cinema. Kepp shrugging those shoulders!
Anne

Hi all,

Angel how are things going with your husband? Any improvment on pain? Did he start any kind of massaging?

Bev what about with you? Hope things are improving. Remember it does take time.

Well my Dad's phlegm issue was pneumonia. The ER did a CT and that's what they feel it is. Took 10 day supply of antibiotics. He feels pretty good. Gets a bit of chest pain still (just finished them on Monday). He's out and about and almost back to normal.

Anne W how much physio a day. Is it light stretching thru out the day or do you do more of a vigorous work out? No one really tells us ha.

(To add to my above post (as always LOL) I really hate to rant about dr's afterall these people are out there saving lives every day. There really should be some kind of middle man to address questions and concerns; and that way it lets the surgeons and RO's do what they are so great at doing).

LisaB

Hi Lisa,
the exercises i do are more strenuous now. ( I am 1 year post treatment)I did lots and lots of stretches at first (every commercial break!) Now I do a work out once a day if I am not doing any other sport. I still do neck stretches during the day (when i remember-usually at the traffic lights!)
Anne

Hello Anne

Could you let us know the detail of the exercises as they might be helpful to others. From my experience, not everyone gets told about what they can do to help with the stiffness in the neck. If it is too much to type, you can either send me photocopy of the exercises at the MCF address or email the scanned copy to me at info@mouthcancerfoundation.org. Thanks.

Best wishes
Vinod

hi lisa b and angel
it is now 7 weeks post surgery for me and i seem to be improving very slowly the pain is still quite severe in neck and tongue and i am changing pain meds all the time the neck tightness has improved and the tiredness is not as bad i attend the local hospice once a week for support and complementary therapys they really help hope you are all fine bevx

Hi Everyone. LisaB, in answer to how my hubby is doing, about the same is the best answer I can come up with. Today he went to his last physical therapy, although he will be continuing exercises at home. If there is improvement in shoulder pain, it is slight. Neck tightness is still very present. Anymore advice from anyone in alleviating this tightness is welcome. The good news we received yesterday is the CAT Scan showed nothing abnormal! Also, the surgeon scoped his throat and there is nothing to speak of there either. As for the massage, he hasn't started anything yet. The Dr. didn't think lymph build up was his problem. I think his muscles need to be built up. The thirty pounds he lost were mostly muscle because he didn't really have much excess fat to begin with. I am massaging him with Bio-Oil, and that feels good.

LisaB, I am glad your Dad received treatment for pneumonia and he is feeling better. Hope he continues to improve.

Bev & Anne W, please hang in there, things have to improve! That's the way I feel about my Hubby. Any improvements since surgery are tiny, baby steps, but they will continue and eventually over a couple years time we will see big changes for the better. Talk about a test of patience!

Anne W, like Dr. Joshi asked, any info you can give about exercises would be helpful.

Thanks for listening!

Hi again All!

Angel18 that is great news! And you are so right....it takes time. Hang in there Bev and everyone else!

My Dad is 6 months post surgery now and he sure has come a long way. Yes he still has tightness in the neck and can't lift his arms the way he use to. He now can sleep on his side rather then just straight up on his back; so that feels so much better on his back. I notice his cheeks get a bit puffy from time to time (nothing bad). He eats well and dines out a bit too. The Bio Oil helps and he really feels the MLD massaging does too. The tightness is the main issue, as I'm sure you all know so well. Scary stuff!

It sounds like the physio really helps. Thanks for the info Anne; looking forward to reading more about it.

Keep me posted all.

Take care,
LisaB

Hi again. Hope you are all doing better.

Ok I spoke with a dr (Assistant Attending Physiatrist Rehabilitation Medicine Service
Memorial Sloan-Kettering Cancer Center) on another board and here is what he said about neck tighness:

"The tightness is usually largely from spasm due to involvement of the nerves and muscles in the radiation (or surgical) field. We treat it in several ways including physical therapy to improve and as importantly maintain range of motion, nerve stabilizers such as pregabalin (Lyrica), and often botulinum toxin injections."

This is interesting because with my Dad; some days he feels like his neck is ceasing up and yet there is no visible swelling. We chalk it up to inside swelling. So I wonder if it's actually neck spasm and not lymph swelling.

When I read up on the injections he mentions I don't like the side effects. So do your homework first.

Hope this helps.

Maybe Dr. Joshi can comment here for us.

LisaB

This message has been edited. Last edited by: LisaB Canada,

LisaB,

Thanks for the additional info. I printed it and will be taking it to Hubby's next doctor's appointment. We'll see how it goes.

Angel18

Hi! Sorry have been busy!
Here are some of many neck exercises.Please remember they were given to me by my physio and some may not be suitable for individual problems.
Neck Flexion
Bring your head forward so that the chin hits the chest and your face is staring at the floor- slowly X5
Neck Extension
Bring head back so that you are looking at the ceiling. Slowly and smoothly leaving neck at the end of the movement for a few seconds X 5
CAUTION you may feel dizzy ask for advice if you do
Rotation
Turn your head slowly to one side until it cannot easily go further do one side X5 then the other. DO NOT GO FROM SIDE TO SIDE OR ROLL NECK.
Again hold neck for a few secs at end of each movement.
(I now do this lying on my tummy in bed and push one side into the mattress and leave for a while before chanhing sides)
Side Flexions
Keep head facing forward and try and get ear on to shoulder. This is hard when you have had a neck dissection as one side will be nowhere near the shoulder!
Again don't go from side to side do X5 on one side then do the other.
This next exercise is supposed to be good for your swallow as well.
Lie on the floor (with head on pillow if you want) and lift head up so that you are looking at your toes(or at the TV!)keep shoulders on the floor. Repeat X 5
Other exercises which you should know about are- Shoulder shrugs-bring shoulders up as far as you can then downwarfd further than normal
Shoulder bracing- bring shoulders to the front as if you are trying to get them to meet at the middle them pull them right back pulling shoulder blades together. Make it a vey large and slow movement.
This is the last one for now- I have more!
I found this helped to get movement back in my arm after the neck dissection.
Lie on floor with arms by side. lift left arm up and place long and straight above head trying to let your bicep touch your ear9as if you were doing back stroke) Leave there for a while and repeat other side.

Phew!
The first 3 exercises i did every time the adverts came on when i was watching tv and before going to bed and most important as i got up in the morning.
It is painful- but I reaping the benefits a year on and can now nearly get my arm up straight to serve at tennis and play golf.

Cheers! Keep smiling!
aNNE