Modified radical neck dissection issues for an athlete

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Comments

  • Patti678
    Patti678 Member Posts: 55
    MarineE5 said:

    Lymphadema
    Patti,

    Doug already touched on a very important topic, Lymphadema. As you have only recently had a neck disection with the removal of 59 lymphnodes, the lymphnode system is totally out of whack. Ask your Oncologist or Surgeon if they can send you to a Cancer Physical Therapist that is trained for Lymphadema. I was fortunate to have one here locally after I had my Surgery in a big City.

    She taught me a gentle massage so I could do it anytime I needed to from over doing any work or exercise. Check out Sweetblood's Super thread and look for - Stretching and Neck Massage Instructions. It is listed in the section under ( Products and Tips that help side effects ). I posted the information some time ago. You can try it and see if it helps, but do try to see the professional therapist if possible.

    You can retrain the lymphnode system a bit and it takes awhile. Remember that anytime you use your shoulders, the blood and lymph system flow towards the working area. When the fluid gets there and can't flow away like it did before, it backs up and causes swelling and discomfort/pain.


    My Best to You and Everyone Here

    Thanks
    Thanks. I live in Atlanta so I'm sure I can find one here. I also looked online on youtube.com and they have some good videos on how to do it as well. I can tell without a doubt that there is a problem with the lymph nodes system not draining.

    Thanks for this input. It amazes me every single day the information I receive here.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Patti678 said:

    Thanks
    Thanks. I live in Atlanta so I'm sure I can find one here. I also looked online on youtube.com and they have some good videos on how to do it as well. I can tell without a doubt that there is a problem with the lymph nodes system not draining.

    Thanks for this input. It amazes me every single day the information I receive here.

    Hi Patti

    I know that you have been running for a while before and after your C but is there a program for beginner on how to start. My doctors been telling me I need to do more exercise but every time I start I poop-out to fast, body just not use to it after radiation twice to the head.

    Thanks
    Hondo
  • Patti678
    Patti678 Member Posts: 55
    Hondo said:

    Hi Patti

    I know that you have been running for a while before and after your C but is there a program for beginner on how to start. My doctors been telling me I need to do more exercise but every time I start I poop-out to fast, body just not use to it after radiation twice to the head.

    Thanks
    Hondo

    Program?
    Do you know the name of the prgram so I can google it? I have found that the first mile is the worst and then things seem to click. I also allow myself to run/walk which oddly enough I discovered when I had severe tendinitis in my ankle and I still use a system of run 1/2 mile, walk for 60 seconds. It works!
  • Patti678
    Patti678 Member Posts: 55
    Hondo said:

    Hi Patti

    I know that you have been running for a while before and after your C but is there a program for beginner on how to start. My doctors been telling me I need to do more exercise but every time I start I poop-out to fast, body just not use to it after radiation twice to the head.

    Thanks
    Hondo

    Program?
    Do you know the name of the prgram so I can google it? I have found that the first mile is the worst and then things seem to click. I also allow myself to run/walk which oddly enough I discovered when I had severe tendinitis in my ankle and I still use a system of run 1/2 mile, walk for 60 seconds. It works!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Hondo said:

    Hi Patti

    I know that you have been running for a while before and after your C but is there a program for beginner on how to start. My doctors been telling me I need to do more exercise but every time I start I poop-out to fast, body just not use to it after radiation twice to the head.

    Thanks
    Hondo

    More Than You Realize
    Most people actually can run/jog more than they think...or you mind let's you think.

    You just start out either walking and or jogging a little at a time...down the block...next week or when you feel good part way back...

    Keep striving to go just a little further....jog a little then walk.

    When I ran 30 - 40 miles a week I usually ran a few miles at lunch and then a few miles later in the evening...

    On Saturday, even though I might have only routinely ran 3 - 4 1/2 miles at a time, I could run 7+ when I just focused and controlled my breathing and rythm.

    And like Patti mentioned, I was always slow to warm up...the first mile was always slow for me, then I got warmed up and in the groove.

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    More Than You Realize
    Most people actually can run/jog more than they think...or you mind let's you think.

    You just start out either walking and or jogging a little at a time...down the block...next week or when you feel good part way back...

    Keep striving to go just a little further....jog a little then walk.

    When I ran 30 - 40 miles a week I usually ran a few miles at lunch and then a few miles later in the evening...

    On Saturday, even though I might have only routinely ran 3 - 4 1/2 miles at a time, I could run 7+ when I just focused and controlled my breathing and rythm.

    And like Patti mentioned, I was always slow to warm up...the first mile was always slow for me, then I got warmed up and in the groove.

    JG

    Problems

    When I try I poop-out too fast, not sure if there is a problem or not. I can work all day with no problems but I sit down most of the time. After my first radiation I had no problems returning to doing all the things I loved to do, I even could go scuba Diving with no problem. But after the second radiation treatment it is like nothing works anymore. I am starting to notice a problem now when I have to board some of our Ships, as there are normally several flight of stare to get to the Pilot House, and I poop-out about half way and need to rest. There was time when I could jogger up and down these with no problem but knot no more.

    I am fixing to start going back to the acupuncture and chiropractor doctor may be that can re-adjust these bones or something to help get a little more energy in them.

    Thanks
    Hondo
  • Patti678
    Patti678 Member Posts: 55
    Hondo said:

    Problems

    When I try I poop-out too fast, not sure if there is a problem or not. I can work all day with no problems but I sit down most of the time. After my first radiation I had no problems returning to doing all the things I loved to do, I even could go scuba Diving with no problem. But after the second radiation treatment it is like nothing works anymore. I am starting to notice a problem now when I have to board some of our Ships, as there are normally several flight of stare to get to the Pilot House, and I poop-out about half way and need to rest. There was time when I could jogger up and down these with no problem but knot no more.

    I am fixing to start going back to the acupuncture and chiropractor doctor may be that can re-adjust these bones or something to help get a little more energy in them.

    Thanks
    Hondo

    Stairs
    Ok, this is odd I know but although I can run, I have the same issues with stairs. Every morning I have to walk up 2 flights of stairs to get to my office and I'm out of breath during that. I understand getting out of breath running...but not on 2 flights of stairs. Makes no sense. I hope you can get that worked out Hondo.

    Out of curiosity, what does the radiation do that causes us to be so weak? What does it destroy?
  • Hondo
    Hondo Member Posts: 6,636 Member
    Patti678 said:

    Stairs
    Ok, this is odd I know but although I can run, I have the same issues with stairs. Every morning I have to walk up 2 flights of stairs to get to my office and I'm out of breath during that. I understand getting out of breath running...but not on 2 flights of stairs. Makes no sense. I hope you can get that worked out Hondo.

    Out of curiosity, what does the radiation do that causes us to be so weak? What does it destroy?

    Patti
    Good Questions I hope you can get some good answers, becuase I too need to know.

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Patti678 said:

    Stairs
    Ok, this is odd I know but although I can run, I have the same issues with stairs. Every morning I have to walk up 2 flights of stairs to get to my office and I'm out of breath during that. I understand getting out of breath running...but not on 2 flights of stairs. Makes no sense. I hope you can get that worked out Hondo.

    Out of curiosity, what does the radiation do that causes us to be so weak? What does it destroy?

    Routine...
    I think alot is just routine, what you have been doing and your body is used to it. When you do something different and your body isn't used to it, it isn't nearly as efficeint at it.

    Once you get into the groove, constantly utilizing similar routines and motions..the body learns them quickly.

    That's why the body builder guys will change their routines, or positions..the muscles learn quickly and you don't get as much from it (muscle growth). So you change reps, or weights...different forms, etc...to burn the muscles, generate new growth, keep it interesting.

    Anyways, it's like anything, usually the more you do it, the better you get at it.

    JG
  • Goalie
    Goalie Member Posts: 184
    Skiffin16 said:

    Routine...
    I think alot is just routine, what you have been doing and your body is used to it. When you do something different and your body isn't used to it, it isn't nearly as efficeint at it.

    Once you get into the groove, constantly utilizing similar routines and motions..the body learns them quickly.

    That's why the body builder guys will change their routines, or positions..the muscles learn quickly and you don't get as much from it (muscle growth). So you change reps, or weights...different forms, etc...to burn the muscles, generate new growth, keep it interesting.

    Anyways, it's like anything, usually the more you do it, the better you get at it.

    JG

    getting better
    I used to try to convince my girlfriends of this ...
  • Patti678
    Patti678 Member Posts: 55
    Skiffin16 said:

    Routine...
    I think alot is just routine, what you have been doing and your body is used to it. When you do something different and your body isn't used to it, it isn't nearly as efficeint at it.

    Once you get into the groove, constantly utilizing similar routines and motions..the body learns them quickly.

    That's why the body builder guys will change their routines, or positions..the muscles learn quickly and you don't get as much from it (muscle growth). So you change reps, or weights...different forms, etc...to burn the muscles, generate new growth, keep it interesting.

    Anyways, it's like anything, usually the more you do it, the better you get at it.

    JG

    yep
    Yeah I agree. I ran 4 miles this morning with a few short walk breaks when I was too out of breath. Already I am seeing improvements.

    I've also been lifting weights to get my trap working again. I love the machines that give me full range of motion. It has been pure hell going through this much pain but I won't stop because using the muscles helps so much. The worst part of the day is when I wake up and the muscles are all balled up and frozen.

    I am so thankful I started doing triathlons last year and have the motivation and teammates to start all over again. It's much better than letting the muscle atrophy.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Goalie said:

    getting better
    I used to try to convince my girlfriends of this ...

    Practice...
    Practice, practice, practice...
  • sizzle
    sizzle Member Posts: 3 Member
    My experience
    Hi Patti. I had a modified neck dissection followed by 40 rounds of radiation in early 2010. I have always been very active: daily cardio and/or strength training, officiating ice hockey, and playing senior hockey. Like you, I resumed limited training a few days after surgery and continued through radiation. I also started PT to increase my range of motion a few weeks after surgery. I experienced periods of extreme fatigue, high blood pressure, and high heart rate for 4-5 months post surgery which then thankfully abated but was quite frustrating. I did not have high levels of pain during exercise except for neuropathic burning throughout the shoulder and neck area when starting a workout, which I still have. Unfortunately, I would say my level of discomfort has trended higher over time as the nerves recover. I take a couple Tylenol-3 a few times a week for "pain breaks" and may investigate botox injections which was recommended to me recently by my Oncologist. In summary I would say that it took about 6 months to resume the level of training that I was doing prior to surgery and about a year to regain lost muscle mass. You'll get it all back and then some, keep working and good luck.
  • Hondo
    Hondo Member Posts: 6,636 Member
    sizzle said:

    My experience
    Hi Patti. I had a modified neck dissection followed by 40 rounds of radiation in early 2010. I have always been very active: daily cardio and/or strength training, officiating ice hockey, and playing senior hockey. Like you, I resumed limited training a few days after surgery and continued through radiation. I also started PT to increase my range of motion a few weeks after surgery. I experienced periods of extreme fatigue, high blood pressure, and high heart rate for 4-5 months post surgery which then thankfully abated but was quite frustrating. I did not have high levels of pain during exercise except for neuropathic burning throughout the shoulder and neck area when starting a workout, which I still have. Unfortunately, I would say my level of discomfort has trended higher over time as the nerves recover. I take a couple Tylenol-3 a few times a week for "pain breaks" and may investigate botox injections which was recommended to me recently by my Oncologist. In summary I would say that it took about 6 months to resume the level of training that I was doing prior to surgery and about a year to regain lost muscle mass. You'll get it all back and then some, keep working and good luck.

    Hi sizzle
    Great to hear you are doing so well and back to your new normal.

    PS: Welcome to CSN

    Take care
    Hondo
  • Patti678
    Patti678 Member Posts: 55
    sizzle said:

    My experience
    Hi Patti. I had a modified neck dissection followed by 40 rounds of radiation in early 2010. I have always been very active: daily cardio and/or strength training, officiating ice hockey, and playing senior hockey. Like you, I resumed limited training a few days after surgery and continued through radiation. I also started PT to increase my range of motion a few weeks after surgery. I experienced periods of extreme fatigue, high blood pressure, and high heart rate for 4-5 months post surgery which then thankfully abated but was quite frustrating. I did not have high levels of pain during exercise except for neuropathic burning throughout the shoulder and neck area when starting a workout, which I still have. Unfortunately, I would say my level of discomfort has trended higher over time as the nerves recover. I take a couple Tylenol-3 a few times a week for "pain breaks" and may investigate botox injections which was recommended to me recently by my Oncologist. In summary I would say that it took about 6 months to resume the level of training that I was doing prior to surgery and about a year to regain lost muscle mass. You'll get it all back and then some, keep working and good luck.

    Thanks
    Thanks so much for your feedback. The pain in my trap muscle ranges from a 5 on a good day to a 10 on a bad (out of 10). It's intense but I'm finding different ways to deal with it. I have a TENS machine that I just started using tonight. And I take a Lortab if the pain is too great but I like to avoid prescription pain pills if I can.

    I can feel the scar and it's twingeing (for lack of a better word) but it's minor now. I can kind of tell it's going to get worse as it heals and feeling returns to that area.

    My expectation is the 4-6 month period...and I only did one radiation pill. I did not have any external radiation treatments.

    Good luck to you in fully recovering from the pain. For what it is worth, I have been using Botox for 15 years on my face for cosmetic reasons wihout any adverse side effects. I don't have how effective it would be to eliminate pain but it's worth a try.

    I have always thought throughout this process that I would regain all my fitness and strength and that it's possible to go on to be a better athlete than before the cancer. Only time will tell if I'm correct but I know how powerful thought and belief can be. Why not use it to my advantage?
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Practice...
    Practice, practice, practice...

    John
    I see now that is why you catch so much Fish, Practice, Practice, and Practice some more. Ha ha ha.

    Of corse you also live in the right place to be able to Practice so much, lucky guy….

    :+})
    Hondo