Top 5 suggestions for dealing with neck dissection

Patti678
Patti678 Member Posts: 55
in Head and Neck Cancer #1
I'm 10 weeks post-op for a modified radical neck dissection and here are my top 5 suggestions for the physical issues that I had. I am neither a doctor nor a PT but I have been lifting weights since I was a teenager and have studied the affects of diet for many years as well. Only one side on my neck was dissected and 59 lymph nodes were removed as well as my thyroid. My spinal accessory nerve was sacrificed.

1- Getting back in the gym and lifting the lightest weights possible has helped the pain in my trapezius muscle immensely. The machines which allow for separate right and left arm use with full range of motion are incredibly useful but don't discount the ones where the "strong" side helps the "weak" side. I only use enough weight to control the machine. I do NOT use enough weight so that it feels like I am "lifting weights".

2- Baths. Preferrably with epsom salts. In the beginning I was taking 3 baths a day. I have an air jetted tub but a standard bath helps too. I also have plenty of wash cloths that I soak in warm water and use as compresses for my neck and trap muscles.

3- Carrot juice. Although my swallowing has improved in 10 weeks, in the beginning it was really difficult to swallow. And the liquids I drank need to be thick. Carrot juice was like liquid velvet going down my throat. Incredibly soothing and healthy.

4- Eat a healthy diet. As hard as it might be, don't let yourself use too many comfort foods. I found that fruits and veggies were much easier to swallow than junk food. I always had fruit cups and applesauce on hand. Trader Joe's has incredible "pear sauce". Also, Target has organic squeeze packs of baby food in lots of fruits and veggie combos.

5- The worst part of the day for me is when I first wake up. The muscles around my neck and back are rigid and screaming with pain. I spend 5-10 minutes massaging them before I get up each day and also if I'm in intense pain, I do some of the PT exercises prescribed for me.

I hope I posted this in the right place. If you guys/gals who have been around for awhile know a better place for me to post it, please tell me. And please tell me your suggestions too! I'm no where near full recovery and any advice is very welcome!!!

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Patti
    Sorry to hear about the nerve damage but I think you are doing it the right way, getting a good work-out, and eating right is a big part of getting back to you again.


    Take care
    Hondo
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Hondo said:

    Hi Patti
    Sorry to hear about the nerve damage but I think you are doing it the right way, getting a good work-out, and eating right is a big part of getting back to you again.


    Take care
    Hondo

    a couple of more
    #6 Lymph edema is a common side effect of a dissection characterized by pooling of lymph fluid. The fluid will pool to your sleeping side in the morning. Lymph edema therapy is very effective in controlling swelling initially. Time passage will take care of the swelling in the long run as new pathways are created.

    #7 Long term management of mobility to the neck area will benefit greatly from a regular restorative yoga routine which typically targets the neck and head areas.
  • Patti678
    Patti678 Member Posts: 55
    #4
    ratface said:

    a couple of more
    #6 Lymph edema is a common side effect of a dissection characterized by pooling of lymph fluid. The fluid will pool to your sleeping side in the morning. Lymph edema therapy is very effective in controlling swelling initially. Time passage will take care of the swelling in the long run as new pathways are created.

    #7 Long term management of mobility to the neck area will benefit greatly from a regular restorative yoga routine which typically targets the neck and head areas.

    thanks
    these are awesome too!
  • Patti678
    Patti678 Member Posts: 55
    #5
    Hondo said:

    Hi Patti
    Sorry to hear about the nerve damage but I think you are doing it the right way, getting a good work-out, and eating right is a big part of getting back to you again.


    Take care
    Hondo

    thanks
    i don't know what the nerve pain is like for others but for me it is excruciating. i'm in pain all the time. :(
  • Hal61
    Hal61 Member Posts: 655
    #6
    Good news, not so good news
    Hi Patti, glad to hear you're doing what you can to improve your healing. I know ten weeks sounds like a long time, and you're still hurting, and that's not so good news. The good news is that I was about in the same spot ten weeks after my partial--left side--dissection. I remember going through the ATM drive and struggling to lift my arm and key in my pin. Every day, hurting and stinging. I'm about a year and a half from my dissection now--it had followed my chemo and rads. My situation is much better. You will improve. I've recently been taking a non-narcotic called gabapentin for the neck. I don't feel any side effects and it has helped a lot. You might ask your doc about it. Ten weeks is a long time, but not in this case. It will improve for you. Hang in.

    best, Hal
  • Patti678
    Patti678 Member Posts: 55
    #7
    Hal61 said:

    Good news, not so good news
    Hi Patti, glad to hear you're doing what you can to improve your healing. I know ten weeks sounds like a long time, and you're still hurting, and that's not so good news. The good news is that I was about in the same spot ten weeks after my partial--left side--dissection. I remember going through the ATM drive and struggling to lift my arm and key in my pin. Every day, hurting and stinging. I'm about a year and a half from my dissection now--it had followed my chemo and rads. My situation is much better. You will improve. I've recently been taking a non-narcotic called gabapentin for the neck. I don't feel any side effects and it has helped a lot. You might ask your doc about it. Ten weeks is a long time, but not in this case. It will improve for you. Hang in.

    best, Hal

    Thanks
    Mine is on the left side as well and I know exactly what you are talking about with the ATM or anytime I need to reach my arm straight out to the side.

    I'm only taking 1-2 Lortab a week so I don't think that is too bad. I will check out the non-narcotic drug you mentioned.

    I agree that it takes more than 10 weeks to heal this. It's just that spending 10 straight weeks in intense pain without knowing when the end will come is hard. Because I do a lot of sports, I can pretty much endure any level of pain if I know when it will stop. I just tell myself everyday that the next day is when it will get better. I am certain that I am healing. It is in small amounts so it doesn't seem measurable.
  • DrMary
    DrMary Member Posts: 531 Member
    #8
    "Orthotics for the neck"
    The beginning of your day sounds nasty. I'm wondering if some of it could be helped by the right placement of supports. As a triathelete, you are probably familiar with the various gel and foam orthotics for feet, but the same principle of support to avoid fatigue applies to necks and shoulders. While your pain and stiffness might be caused by lack of movement, some of it might also be spasms caused by muscles trying to support parts of your upper body all night. This is why those special neck-roll pillows help non-neck dissection folks with neck pain, because they have irritated neck muscles by having them go unsupported all night.

    Just something to think about - maybe some of those gel mattresses and pillows could help, if stuffed in the right configuration.

    About carrot juice - mixed with cream or half-and-half, and then heated, it makes a pretty good carrot soup. It goes down nicely; important if you can only eat small amounts and are trying to get both maximum vitamins and maximum calories in at the same time.
  • Patti678
    Patti678 Member Posts: 55
    #9
    DrMary said:

    "Orthotics for the neck"
    The beginning of your day sounds nasty. I'm wondering if some of it could be helped by the right placement of supports. As a triathelete, you are probably familiar with the various gel and foam orthotics for feet, but the same principle of support to avoid fatigue applies to necks and shoulders. While your pain and stiffness might be caused by lack of movement, some of it might also be spasms caused by muscles trying to support parts of your upper body all night. This is why those special neck-roll pillows help non-neck dissection folks with neck pain, because they have irritated neck muscles by having them go unsupported all night.

    Just something to think about - maybe some of those gel mattresses and pillows could help, if stuffed in the right configuration.

    About carrot juice - mixed with cream or half-and-half, and then heated, it makes a pretty good carrot soup. It goes down nicely; important if you can only eat small amounts and are trying to get both maximum vitamins and maximum calories in at the same time.

    Pillow
    It's so interesting you say this. I have a tempurpedic pillow (and bed) and was thinking how I need a new pillow because my current one is old and is NOT supporting my neck very well anymore. Great idea and I will get a new one. My mattress is the best ever...it makes such a difference.

    Wow carrot juice with cream??? Thats sounds decedent. A great suggestion for those needing max cals.

    I've also had trouble swallowing vitamins and now am buying liquid ones. I'm so glad Costco has these.
  • Pam M
    Pam M Member Posts: 2,196
    #10
    59 Nodes??
    That's a lot. I had all the nodes removed on one side, and it was only five in my case. I told my doc that seemed like a very small number, and he said "we took them all". You've shared some great tips, thanks.
  • jtl
    jtl Member Posts: 456
    #11
    Pam M said:

    59 Nodes??
    That's a lot. I had all the nodes removed on one side, and it was only five in my case. I told my doc that seemed like a very small number, and he said "we took them all". You've shared some great tips, thanks.

    Lymph Nodes
    I read somewhere there are like 200 in the head and neck area and 600 throughout the entire body. Five does seem like a small amount.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    Pam M said:

    59 Nodes??
    That's a lot. I had all the nodes removed on one side, and it was only five in my case. I told my doc that seemed like a very small number, and he said "we took them all". You've shared some great tips, thanks.

    Pam
    You only had 5 lymph nodes removed, but that was all you had on that side? That doesn't sound right to me. I had 23 removed from my left side, they didn't tell me if they took them all though, so I don't know. They just said I had clean margins and that 3 of the 23 were cancerous. Fifty-nine sounds like a lot. I have no clue what's "supposed" to be there though.
  • Patti678
    Patti678 Member Posts: 55
    #13
    sweetblood22 said:

    Pam
    You only had 5 lymph nodes removed, but that was all you had on that side? That doesn't sound right to me. I had 23 removed from my left side, they didn't tell me if they took them all though, so I don't know. They just said I had clean margins and that 3 of the 23 were cancerous. Fifty-nine sounds like a lot. I have no clue what's "supposed" to be there though.

    number of nodes
    There are approx 200 in your neck so I'm guessing 100 per side. To me that means he removed about 60% of mine.

    There are WAY more than 5 in one side of your neck. I would ask the doctor what he meant by "all". Did he mean all of the ones that were cancerous?
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #14
    Patti678 said:

    number of nodes
    There are approx 200 in your neck so I'm guessing 100 per side. To me that means he removed about 60% of mine.

    There are WAY more than 5 in one side of your neck. I would ask the doctor what he meant by "all". Did he mean all of the ones that were cancerous?

    5 lymph nodes
    Patti, that was what I was thinking, that Pam's doc meant "all" as in the ones that were cancer.
  • LeoS2323
    LeoS2323 Member Posts: 160
    #15
    Good Timing
    Hi Patti

    Thanks for the tips - great timing for me as I have a left sided neck dissection scheduled in eleven days time!

    I will definitely take these tips on board, and let you know how it goes.

    Interested to see how many nodes they remove from my neck as there seems to be a big difference between people's experiences. I have actually already had some surgery as my doctors misdiagnosed my mucoepidermoid carcinoma as a branchial cyst for 6 months and removed it thinking that was what it was. I had a clear PET scan even. Not a nice surprise when they got the results back from the lab! Turned out to be a cancerous node.

    I can feel three nodes that are up in my neck but the doctor says that is common after surgery so it's hard to say if more are cancerous or not; but he is going to remove them anyway. As it stands my primary is too small to find even with PET so I think if he removes them, if we have a period of waiting to see if it shows, then with no adjacent nodes it is unlikely to spread. I am an odd case apparently! I had an MRI Tuesday which may make the picture clearer before the operation.

    Anyway thanks so much for the tips, I will definitely be aiming to use them post operation.

    All the best

    Leo
  • akotke
    akotke Member Posts: 37
    #16
    Thank you for ths post. I
    Thank you for ths post. I had a radical neck dissection about a year ago. I lost my jugular, my sterno muscle and my spinal nerve. I also have pain almost every day and all day. I would have to say that out of all the treatment, this is really the worst part Im left with. I have asked several times about relief with no real responses. I now take tramidol three times a day for pain and I take loritab at night for added relief. I will be trying the exercises and the weight lifting fo sure. This is why I love this sight! The best advice comes from others who are in the same boat. :)
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #17
    Calcium & Parathyroid Gland
    People may be tired of my repeating myself BUT:

    I had more than a neck dissection, I had my vocal cords removed. In addition my parathyroid glands were compromised. I think this can happen in any neck surgery, but the bigger the surgery, the bigger the risk. AND I have not heard of parathyroid damage as a result of neck dissection.

    SYMPTOMS: Your FACE MUSCLES TWITCH, for me especially around the lips.

    The parathyroid glands regulate calcium in our bodies.

    Low Calcium: can adversely affect the heart. Every time blood tests found the calcium low, I went for a four-hour IV infusion. The hospital even kept the IV center open an extra two hours to accommodate me. So they must think it's serious.

    TREATMENT: Is easy: Calcium Supplements like TUMS, and a special form of Vitamin D.

    DON'T GUESS: If you've had a neck operation (or even radiation) and develop twitching of some facial muscles, call your healthcare team. This condition is only dangerous if ignored.

    FINALLY: Most patients won't run into this problem. But I think it does not hurt to know the symptoms.
  • Sam999
    Sam999 Member Posts: 319 Member
    #18
    ToBeGolden said:

    Calcium & Parathyroid Gland
    People may be tired of my repeating myself BUT:

    I had more than a neck dissection, I had my vocal cords removed. In addition my parathyroid glands were compromised. I think this can happen in any neck surgery, but the bigger the surgery, the bigger the risk. AND I have not heard of parathyroid damage as a result of neck dissection.

    SYMPTOMS: Your FACE MUSCLES TWITCH, for me especially around the lips.

    The parathyroid glands regulate calcium in our bodies.

    Low Calcium: can adversely affect the heart. Every time blood tests found the calcium low, I went for a four-hour IV infusion. The hospital even kept the IV center open an extra two hours to accommodate me. So they must think it's serious.

    TREATMENT: Is easy: Calcium Supplements like TUMS, and a special form of Vitamin D.

    DON'T GUESS: If you've had a neck operation (or even radiation) and develop twitching of some facial muscles, call your healthcare team. This condition is only dangerous if ignored.

    FINALLY: Most patients won't run into this problem. But I think it does not hurt to know the symptoms.

    Hi patti,
    You are doing
    Hi patti,

    You are doing pretty much that is needed. Good post. I also had neck disection and two most things that help me is yoga and just simple neck excercises mentioned in the literature they gave me a meorial sloan catering center pamplet.


    Sam

Discussion Boards