Neck Dissection Recovery is Erratic

DavidFB
DavidFB Member Posts: 6
in Head and Neck Cancer #1

Hi,

My name is David and I was diagnosed with squamous cell cancer in lymph node in base of my left side of neck. The drs determined it had originated from my skin ( I’ve had many skin cancers).I had a modified neck dissection 5 months ago. 30 lymph nodes were removed. In general the pain along the incision has improved as has the pain and stiffness in my shouldeR. The first month after was very hard and I was on Advil and Tylenol throughout the day. For the last month it felt like it was improving but then I came down with a bug of some kind ( sluggish, stomach upset) and the pain in my incision got much worse. I had an MRI about 45 days ago and it was clear, thank god, so I think its just taking a long time to heal. Have any of you had this kind of steps forward and then regression, too, in their healing ? 

I started doing PT and thought it was helping until I got sick.

Appreciate any helpful thoughts.

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    welcome

    Hi DavidFB,

    Nice to meet you, I am sorry that you found our services necessary, but what the heck, it is sunny in Albany, Oregon, I am having salmon and potato salad for dinner, I haven’t had any undiagnosed bugs in my body or my mouth, I am working outside on a leaking swimming pool and I am trying to find a phone number of a guy I used to work with 8 years ago.

    If this neck dissection (5 months ago) was before the MRI (45 days ago), I think it should be healed by now and you should be stopping by for supper this evening..  Oh well, we cannot have everything (but we can dream).

    Hey, have you ever noticed that since we have moved over to cell phones and email for most (informational) communication.  It is now (many times) more difficult to get a hold of someone?  The persons not trying to dodge you, it is just that cell phone numbers and email addresses ae sometimes difficult to find.

    Good luck, feel better and soon you may be pain free.

    Matt

     

  • DavidFB
    DavidFB Member Posts: 6
    edited July 2018 #3
    CivilMatt said:

    welcome

    Hi DavidFB,

    Nice to meet you, I am sorry that you found our services necessary, but what the heck, it is sunny in Albany, Oregon, I am having salmon and potato salad for dinner, I haven’t had any undiagnosed bugs in my body or my mouth, I am working outside on a leaking swimming pool and I am trying to find a phone number of a guy I used to work with 8 years ago.

    If this neck dissection (5 months ago) was before the MRI (45 days ago), I think it should be healed by now and you should be stopping by for supper this evening..  Oh well, we cannot have everything (but we can dream).

    Hey, have you ever noticed that since we have moved over to cell phones and email for most (informational) communication.  It is now (many times) more difficult to get a hold of someone?  The persons not trying to dodge you, it is just that cell phone numbers and email addresses ae sometimes difficult to find.

    Good luck, feel better and soon you may be pain free.

    Matt

     

    Thanks for your response Matt

    Thanks for your response Matt, wish I could come over. Having cod here on the East Coast in NJ.

    im praying the flare up on my neck is caused by something besides a return of the squamous. The MRI was clear just 45 days ago. I’m finding recover from the neck dissection just very difficult. I’m 64 and on immunosuppressive meds for a kidney transplant and maybe that is slowing recovery.

    did you have neck dissection? I take it your recovery was smoother than mine.?

    best

    david

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    When you say "heal"

    I assume you mean that the cut itself has healed but that you are continuing to have stiffness, aches, tingling, hypersensitivity and numbness along the cut line and into your shoulder?  I think, unfortunately that this is pretty normal.  I only had 5 nodes removed and I still have minor stiffness, tingling and numbness along the cut line so I can only imagine what it's like when they pull 30 out.

    PT is likely to be your solution...and staying active as much as possible.  In know that when I sit still to much my shoulder gets stiff and my neck suffers too.  Cold weather really sucks as well.

    Hang in there.

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #5
    Hello

    David I can't help you in this area never had your procedure done.

    just wanted to say Hi and welcome.

    Looks like you got some advice from someone in a similar situation hope it helps.

    A lot of good people on here and good info in the archives I'm sure you will find some answers.

    Boy, it looks like you have had your share of medical procedures to deal with including a kidney transplant also.

    Take care & God Bless

     

  • DavidFB
    DavidFB Member Posts: 6
    edited July 2018 #6
    johnsonbl said:

    When you say "heal"

    I assume you mean that the cut itself has healed but that you are continuing to have stiffness, aches, tingling, hypersensitivity and numbness along the cut line and into your shoulder?  I think, unfortunately that this is pretty normal.  I only had 5 nodes removed and I still have minor stiffness, tingling and numbness along the cut line so I can only imagine what it's like when they pull 30 out.

    PT is likely to be your solution...and staying active as much as possible.  In know that when I sit still to much my shoulder gets stiff and my neck suffers too.  Cold weather really sucks as well.

    Hang in there.

    Hi John,

    Hi John,

    Thankyou, very calming to hear about your experience. 30 lymph nodes is very  intense. Unfortunately the drs didn’t prepare me well for the recovery. Doing my own research I realized there are implications when so many lymph nodes are removed. Like what is taking over the work they were doing. Lymph nodes capture and move germs, fluids etc away and then out of your systeM. So what’s happening now without them. Likely it’s all just coagulating in my neck and so if I have a cold it’s doubly concentrated in my neck. Which could be the reason all these symptoms— the numbnes, stiffness, etc has worsened.

  • SuzJ
    SuzJ Member Posts: 427 Member
    #7
    what I was told..

    There will be numbness, and the feeling will come back - unfortunately, the pain nerves recover first

  • DavidFB
    DavidFB Member Posts: 6
    edited July 2018 #8
    SuzJ said:

    what I was told..

    There will be numbness, and the feeling will come back - unfortunately, the pain nerves recover first

    Hi SuzJ,

    Hi SuzJ,

    what you are saying is that recovery is fluid and this is why I’m experiencing such erratic sensations. It’s not a straight healing process like most things I recover from. But in fact different nerves recover at different times.... and perhaps 5 months our the pain nerves are revitalizing. That’s a very hopeful thought!! Thankyou!

  • DavidFB
    DavidFB Member Posts: 6
    #9
    Thanks to all

    for responding and welcoming me. I’m very happy I found this site.

    does anyone know how I can enable email notifications each time somebody responds to this or other threads?

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #10
    DavidFB said:

    Thanks for your response Matt

    Thanks for your response Matt, wish I could come over. Having cod here on the East Coast in NJ.

    im praying the flare up on my neck is caused by something besides a return of the squamous. The MRI was clear just 45 days ago. I’m finding recover from the neck dissection just very difficult. I’m 64 and on immunosuppressive meds for a kidney transplant and maybe that is slowing recovery.

    did you have neck dissection? I take it your recovery was smoother than mine.?

    best

    david

    David,

    David,

    My recovery smoother than yours (is to date).  I do not know?

    I was stage IVa, SCC,  bot, 1 lymph node, hpv+ (surgery (tongue &  neck), rads and Erbitux).

    I had a difficult time getting back to the “land of eating”. I tried every food I came across, but my brain wanted very little to do with the awful, taste of most foods, awful feel of most food. I did eat lots of tomatoes and cucumbers with olive oil. but there were a lot of “no thank you” helpings and hundreds of smoothies.  That was until, 7 months post and I was at a golf course with my boss (up on The McKenzie Pass, east of Eugene), we were inspecting a maintenance building we had just designed and had built.  Normally, I had my Igloo cooler filled with protein drinks, water, pop, etc., but I forgot my cooler. So I ordered a turkey sandwich at the snack bar. Well, it took 7 months, but just like a switch had been flipped on, I was back to eating and now 6+ years post, I eat anything I want, not hot (spicy) mind you, but anything I want.

    Everything else was typical H&N stuff.
     Matt

  • yensid683
    yensid683 Member Posts: 349
    #11
    two selective neck dissections!

    I avoided the modified radical, but I came close.  I was DX in March of 2012 with stage IVa, BOT with involvment of the left  cervical lymph nodes.  My treatment path was induction chemo, then rads with erbitux and then finally a selective neck dissection.  The PET scan 6 months later showed more issues so I was referred to a specialist who was going to perform a selective with the possibility that it would become a modified radical.  During surgery they exposed the troublesome node and immediately sent it to pathology while they prepared to move on to the modified radical.  I was extremely lucky that the node came back as simply scar tissue, so they finished the procedure.

    I was also fortunate that they didn't have to impact the nerve to my left arm though they did play games with the nerves to the left part of my jaw and ear, which are still tingling and numb to this day.  There are times that it itches like crazy, but fortunately no pain.  I do have some challenges with work, I use a headset on that ear and often find myself in my car on the way home and discover that my cordless headset is still sitting on my ear!

    Since you're experiencing difficulties I would contact your doctor to review.  It could simply be scar tissue pressing on nerves, it could also be the nerves themselves.

     

    Eithe way, hope you're doing better soon.

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