Anyone dealing with Fibrosis?

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I'm challenged with issues with the muscles and nerves in my neck.

I was DX in March of 2012, (stage IV-a) treated with induction chemo, concurrent radiation and chemo and finally surgery, I've been NED for 5 years now and have some pretty substantial issues with my neck.

Tight muscles, lack of flexibility and the feeling of 'pinched nerves' whenever i try to do stretching exercises.

 

I'm looking for direction on what doctor to pursue.  My ENT noted that there is a possibility of 'radiation fibrosis syndrome' which cannot be cured, only managed (not the most encouraging thing to hear)/.

 

I did some looking on line and saw a couple of videos from Sloan Kettering that noted that the flexibility would be addressed with physical therapy, and the neuro pain managed with meds, but I'm not one to self diagnose or self treat.

 

I'm located in the Central Florida

 

Peter

Comments

  • Sonja.K
    Sonja.K Member Posts: 79 Member
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    I had treatment (surgery and

    I had treatment (surgery and radiation) in 2014 and do have radiation fibrosis syndrome and neuropathy.  I had PT which included deep tissue massage and exercises.   I have not gone for the massages for a number of years but I do the exercises daily (and can tell when I do not).  I take Bacoflan and Gabapentin which were prescribed by a pain management doctor.  Everything helps but it never feels great.  I am going to try CBD oil, it just became available in my state.   My doctor said it would not hurt to try it and it would not interfere with my prescribed meds.  My friend in Oregon cannot say enough positive about medical marijuana.  It is not legal in my state, I have never tried it.  Looking forward to hearing anything helpful from others. 

  • donfoo
    donfoo Member Posts: 1,773 Member
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    ditto

    The only long term side effect that bothers me today, after 5.5 years NED is fibrosis in the neck, along the rad path. It goes from my shoulder to my jaw and underneath the teeth. Usually, there is a daily reminder but a few times a week it will really let me know not to forget; it ain't going to run off anytime soon.

    Multiple times each day I move my neck forward/backward, side/side, and turning left/right. Massaging with firm pressure along the main long neck muscles helps a lot. When it craps under my lower jawbone, some hard pressure with a couple fingers will loosen it up. 

    No medications for pain, just the self-massaging and neck stretching.

  • wbcgaruss
    wbcgaruss Member Posts: 2,371 Member
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    I don't Know if it is Fibrosis

    I guess it could be, but since treatment 35 rads I don't have the same amount of swivel on my neck left and right. It is especially noticed driving when depending what street you are on to look and make sure traffic is clear to pull out I have to turn my body a bit because my head will not turn far enough. Also lately at times, I get something I would compare to a charley horse in my radiated side if my neck and to relieve it I lift my head up as far as I can stretching it back and that stops it similar to a charley horse you get up and stretch your leg out and stand on it. Also, I am not getting any younger and I know we have leftovers and blame to our treatments but sometimes I figger it is just getting older that is affecting us.

    God Bless Folks-Take Care

  • donfoo
    donfoo Member Posts: 1,773 Member
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    wbcgaruss said:

    I don't Know if it is Fibrosis

    I guess it could be, but since treatment 35 rads I don't have the same amount of swivel on my neck left and right. It is especially noticed driving when depending what street you are on to look and make sure traffic is clear to pull out I have to turn my body a bit because my head will not turn far enough. Also lately at times, I get something I would compare to a charley horse in my radiated side if my neck and to relieve it I lift my head up as far as I can stretching it back and that stops it similar to a charley horse you get up and stretch your leg out and stand on it. Also, I am not getting any younger and I know we have leftovers and blame to our treatments but sometimes I figger it is just getting older that is affecting us.

    God Bless Folks-Take Care

    sounds like classic fibrosis

    If the areas of tension are the areas radiated then it sure sounds like classic radiation aftereffects ala fibrosis. When you turn your head and feel the tightness, feel your neck for the source. I'd bet it is a radiated area. Do take time and actively massage those muscle areas; it helps me  alot.

  • yensid683
    yensid683 Member Posts: 349
    edited February 2019 #6
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    other information

    while the tumor and the associated lymph nodes were on the left side, radiation was done to both sides of my neck due to the size of the primary tumor.  Add to this that I also had a power port that went into the right jugular, which clotted off during the first days of rads (opened with two doses of TPA) and then clotted again a few weeks after rads ended.  I endured increasing pain and discomfort in the right side of my neck, sloughed off by the RO as "probably radiation, lets watch it".  My wife put her foot down some 6 weeks later which resulted in an ultrasound that found the severe clot issue.  Resolved with two weeks of twice daily self injections of Lovenox, but now that side if my neck is extremely tender.

    I started doing stretching exercises that I found on line, head rolls, shoulder lifts and what have you, and the pain (especially on the right side) is really ramped up.

    time to see the DR, but I have no idea what specialty. 

    I was treated in upstate NY and now call central FL home.  I have an ENT that specialises in head and neck, but nothing else....

  • MickeyD
    MickeyD Member Posts: 14
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    Had some of the same symptoms

    plus some others involving my shoulder.  My radiation oncologist suggested physical therapy.  It helped a lot.   The therapist also suggested that I might get some relief for the shoulder problems by wearing a type of brace - a Bauerfeind OmoTrain. She said some of her patients liked it and others didn't.   I tried it and it helped with my shoulder but also reduced the pain I was having in my neck when I was active.  I haven't a clue why.

    Since you live in central Florida, you might consider making an appointment with the Inventional Pain Management department at the Moffitt Cancer Center in Tampa.  My ENT in Ft Myers referred me to Moffitt in 2014 and I think the world of them.

  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    donfoo said:

    sounds like classic fibrosis

    If the areas of tension are the areas radiated then it sure sounds like classic radiation aftereffects ala fibrosis. When you turn your head and feel the tightness, feel your neck for the source. I'd bet it is a radiated area. Do take time and actively massage those muscle areas; it helps me  alot.

    Fibrosis

    Hi Donfoo, I'm going to need to look up what fibrosis means in regard to my neck.  Had a radical right neck dissection and it seems like my surgeon cut so much muscle and tendon away to get to my infected lymph nodes.  Many times a day my neck muscles will seize up and not loosen for about a minute or two.  But it's been that way since the surgery so I assume it's normal and not fibrosis from the rads.

    Interesting subject so far.