Wow - I just had my surgery last month (4/11) and I started having shoulder problems almost immediately. I do try exercising my right arm as I was told to do by my surgeon - basically take a 2lb weight and bring it up horizontally and hold - I am at about 25% - can't raise my arm up all the way. Typically around mid-afternoon, I am having bouts of serious, acute shoulder pain. So much so that the Lortab my surgeon prescribed to me for my tongue (I presume) pain post-op (which I don't have - just a slight burning sensation), I am using when my shoulder pain gets so bad that I'm on the verge of tears - and I usually have a very high pain threshold. With what I'm reading here - folks with this pain years after surgery - I am going to ask my surgeon to prescribe physical therapy NOW before this gets any worse... He did tell me that I must exercise it in order to avoid "shoulder freeze."

Hi,
I responded to you about this in your other post. You are correct: ask for a physical therapist who sees head & neck patients.
Anne

Thanks, Anne! I intend to - there is no way that I can just suck it up and live with this kind of pain for years. When this pain hits me, it literally brings tears to my eyes. It's awful and I intend to do something about it - I'm nothing if not persistent (I'm a taurus)... My mother always says the squeaky wheel gets the grease... Squeak, squeak...

Pepper

If you read the first page of this thread, you saw my post about the damage a neck dissection causes. although your other posts have mentioned that you are asking for a PT referal, I just want to emphasize how important a competent physical therapist is to aid your recovery as well as reduce the pain. It' been almost a month since your surgery, you should hve been in PT by now. Lifting that 2 lb weight is all very good, but hardly enough nor does it work the other muscles. I had about 20 different exercises to do over the course of a month that really helped.
I winced when I read that you had 29 lymph nodes taken out and not one of them had cancer. I'm a bit of a curmudgeon here at OCF about neck dissections since all too many doctors consider it a routine precaution instead of surgery with major quality of life complications. It's just like the old days of breast cancer when they did more surgery than needed for "safety".
After my doctor explained all the "normal" complications of a neck dissection, I refused a proposed neck dissection my first time around even though one lymph node did have cancer. when the cancer came back, my surgery required all the same neck slits and muscle trauma that a neck dissection would cause anyway, so I agreed to it plus the risk that the cancer was left over was too great to take for a third time. The pathology report showed that my neck dissection had been unnecessary overkill even in my textbook situation of needing a ND. The one lymph node that had had cancer was totally necrotic or dead and no cancer cells showed up in it or any of the other nodes taken out on levels II, III & IV.
Since you have mentioned your immune system in other posts, you already know how important and vital those 29 lymph nodes were to your immune system.
Keep squeaking: plus I found that starting back in Yoga and Pilates classes really helped my range of motion and the pain.
It does get better but now is the most important time to break up those muscle adhesions and strengthen the muscles that will otherwise atrophy after a ND.
Oh, last and not least, I still do those PT exercises three years later as maintenance in addition to my regular workouts.
You are young and you can overcome this but you do need PT asap.
Keep the Faith
Charm

Has anyone mentioned or have you been to see a lymphedema specialist? I was just talking about this with my speech therapist when talking about neck/shoulder excercises.

Pepper - I meant to ask you about this as well after we spoke and you mentioned neck/shoulder pain as well.

MissB

Just to reiterate what Charm has said, you really need to start seeing a Physical Therapist. These issues are very common after a neck dissection and many of us have experienced this side effect.

Where physical exercise feels like the last thing you wish to do after this experience, let me assure you that it's one of the best things for you. Exercise is shown to be as effective as antidepressivants for treating depression. Due to brain chemistry the body feels more pain when in a depressed state (also very common after the cancer experience) so the physical exercise will also help with pain management.

Keep your head up, get into a physical therapist and keep plugging into these boards for advice and support

Eric

Well, I bitched so much about how much my shoulder hurts that my doc's nurse assistant finally agreed to schedule me for PT. As for exercise, my doc actually told me no strenuous exercise until he clears me - the only thing he allowed me to do is lift 2lb weights until I go for my follow up (which is this Wednesday). He said something about the potential for tearing internal stitches. He also doesn't want me doing anything that will overly stretch my neck in any direction because he doesn't want me stretching out the healing incision - he says that would elongate the scar.

Even when I try jogging with my dogs, it sometimes hurts my neck so until I get into physical therapy, I don't want to do myself more harm than good...

I'm also almost out of Lortab, though when I asked if they would call in a refill for me, the nurse assistant told me to just take 4 Ibuprofen (800mg) pills at a time instead. Well I already do that during the day just to manage the moderate pain so it's not making a dent on my acute pain in the evenings. So now I'm wondering what the highest dosage of Ibuprofen is that I can safely take... I know a lot of doctors are concerned with patients becoming addicted to pain medication but I think that if I was addicted, I would probably be taking the stuff all day long instead of saving it and using it ONLY when the pain is horribly unbearable. Still, I'm not sure how you explain this to the nurse without sounding like some sort of desperate junkie.

As for the lymphedema specialist - no, I haven't seen one or been referred to one. I'm not quite sure what that even is but I can probably infer by breaking down the word.

I will certainly ask about that when I see my doc on Wednesday...

Thanks for all the advice, everyone!!

A lymphadema specialist is someone who does a special kind of lymphatic massage to help move the lymph fluid build up. They removed nodes the fluid doesn't drain well now. The massage helps move the fluid and build new pathways.

Hey Pepper

[quote]I know a lot of doctors are concerned with patients becoming addicted to pain medication but I think that if I was addicted, I would probably be taking the stuff all day long instead of saving it and using it ONLY when the pain is horribly unbearable. Still, I'm not sure how you explain this to the nurse without sounding like some sort of desperate junkie.[/quote]

Talk to the doctor personally and just say what you said above. Insist he act professionally and treat the pain.
Hopefully he is not just drinking the DEA Kool Aid and understands that cancer pain medication is essential to healing. Good luck
Charm

Pepper,
you're on the highed ibuprophen dose. If your doc doesn't want you on narcotics (your doc, not your nurse), here are some things to ask the doctor:

Switch to different NSAID - individual results very, naproxin might work better for you - it's a crapshoot what works best for any individual.

Is it ok to add tylenol to the mix - offset by 2 hours. Ask about this don't just do on your own.

You can keep a journal today and list time of day and level of pain every hours; note also when you take the ibuprophen. That should help your doctor help you manage your pain.

Re: the nurse. Organize your questions so that you sound as professional as possible. As long as she answers professionally, you shouldn't give a tinker's d--- what she thinks of you personally.
good luck!