Radiation and Muscle atrophy HELP

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  • Butterfli7
    Butterfli7 Member Posts: 10
    #42
    cjk22 said:

    I had my heart cath and the results were a little better that they thought after I had the echocardiogram. My ejection fraction was 40% instead of 25% that seemed to show on the echo. Also valve leakage not like the echo showed either so that was good. I do have cardiomyopathy, pulmonary hypertension and an enlarged left ventricle.I just figured I was done with the radiation damage to my body and to find this out knocked the wind out of my sails. How much longer does this radiation continue to destroy? What else can happen to my body because of the radiation? I have really been in a depressed state with all of these new diagnosis.  Then I feel guilty for feeling depressed because there are others out there worse than me. So how can I be selfish and be depressed about my situation? Living life is so hard now. Just the simple things of hanging clothes back up in the closet takes so much effort with the dropped head.etc.

    How do i stop feeling sorry for myself in private and crying and longing for the old days of being normal?

    I don't show this side to others. They really don't understand.

    Everyone asks how I am doing and if I am feeling better when I see them. You can't make them understand that there is no getting better. I just say I am doing okay.

    I am using a walker now, I have a handicap hanger in my car, I can't clean my house and cook as I once did. i just feel depressed about the loss of independence and have to wait on someone else to help. People say to call them if I need help or a meal. I don't want to call. I just want them to come and say I am here for 2 hrs what do you need done. i will not call and inconvienience them. I grieve my old life, my independence, my friends from work etc.

    Well I guess i am done feeling sorry for myself. That felt better getting it out there because you all understand. Some of you are in the same boat. How do you cope?

    Carol

    Hey CJK

    I am new to the site and had Hodgkins in 1987.  Had radiation to the chest and throat. I like you and many others are have many long term issues.  I have weakness and pain from neck fibrosis.  Got a hard collar for my neck in 2014 to help with this problem.  Just had a heart attack and tripple bypass surgery in 2014. Also I have trouble with food getting struck in my throat which surprises me that I haven't heard anyone else mention on this site.   I am now at the point especially with my neck that working has become an issue with me.  I forgot to mention that I also have restrictive lung disease. I am in the process of applying for disability.  My family thinks I will not have any trouble, but I am skeptical.  Do you know of anyone who has tried for disability for neck fibrosis?  If so can you share their experience with me?

    Thanks and I hope the best for you.  I know for myself it is a long road traveled and I wish for you better days. 

  • jmazzenga
    jmazzenga Member Posts: 2
    #43
    Butterfli7 said:

    Hey CJK

    I am new to the site and had Hodgkins in 1987.  Had radiation to the chest and throat. I like you and many others are have many long term issues.  I have weakness and pain from neck fibrosis.  Got a hard collar for my neck in 2014 to help with this problem.  Just had a heart attack and tripple bypass surgery in 2014. Also I have trouble with food getting struck in my throat which surprises me that I haven't heard anyone else mention on this site.   I am now at the point especially with my neck that working has become an issue with me.  I forgot to mention that I also have restrictive lung disease. I am in the process of applying for disability.  My family thinks I will not have any trouble, but I am skeptical.  Do you know of anyone who has tried for disability for neck fibrosis?  If so can you share their experience with me?

    Thanks and I hope the best for you.  I know for myself it is a long road traveled and I wish for you better days. 

    esophagus

    Hi,

    It is a caution to be wary of. I am also in treatments for esophageal scarring, for lack of a better term. I am a long term survivor at 42 years. But there are these side effects such as the fibrosis and scarring.

     

    I have never applied or inquired for disability for these issues. Good luck.

     

    JM

  • cjk22
    cjk22 Member Posts: 11
    #44
    Butterfli7 said:

    Hey CJK

    I am new to the site and had Hodgkins in 1987.  Had radiation to the chest and throat. I like you and many others are have many long term issues.  I have weakness and pain from neck fibrosis.  Got a hard collar for my neck in 2014 to help with this problem.  Just had a heart attack and tripple bypass surgery in 2014. Also I have trouble with food getting struck in my throat which surprises me that I haven't heard anyone else mention on this site.   I am now at the point especially with my neck that working has become an issue with me.  I forgot to mention that I also have restrictive lung disease. I am in the process of applying for disability.  My family thinks I will not have any trouble, but I am skeptical.  Do you know of anyone who has tried for disability for neck fibrosis?  If so can you share their experience with me?

    Thanks and I hope the best for you.  I know for myself it is a long road traveled and I wish for you better days. 

    disability

    Hello. I got disability in 2013 because of the dropped head syndrome that the neck fibrosis caused. It was a long process. I had to apply for disability 2 x then get denied. I then went to a lawyer that specialized in disabiity cases. The lawywer would only see me after I was rejected by disability twice. He then had to questin me and see if he thought he could possbly win the case. If he didn't think he could win it then he wouldn't have taken the case. They only make money if they win the case. Once he took the case it was 13 months before I went before the disability judge. You have to prove that you can no longer do your current job and the previous job you did and why not. It was a lot of paperwork and many hours of filling out the paperwork and questions answered to the best of my ability. Sorry Ihaven't responded sooner. I have not been on this computer site in months. Carol

  • Hondo
    Hondo Member Posts: 6,636 Member
    #45
    cjk22 said:

    disability

    Hello. I got disability in 2013 because of the dropped head syndrome that the neck fibrosis caused. It was a long process. I had to apply for disability 2 x then get denied. I then went to a lawyer that specialized in disabiity cases. The lawywer would only see me after I was rejected by disability twice. He then had to questin me and see if he thought he could possbly win the case. If he didn't think he could win it then he wouldn't have taken the case. They only make money if they win the case. Once he took the case it was 13 months before I went before the disability judge. You have to prove that you can no longer do your current job and the previous job you did and why not. It was a lot of paperwork and many hours of filling out the paperwork and questions answered to the best of my ability. Sorry Ihaven't responded sooner. I have not been on this computer site in months. Carol

    Hi cjk

    I was very lucky as I was able to get disability the first time I applied. I had radiation twice and when it came back a 3rd time back in 2006 was only giving 6 months to a year to live, but by the grace of God the cancer stop growing and went away, that was all most 10 years ago. I had to leave work and go on my company’s long term disability because I can no longer talk, I am 85% deaf, and use a PEG tube to eat with for the rest of my life.

    I was blessed because my old place of employment had people who helped me file SSI and within two months I got a letter from them saying that I was approved. I hope things work out for you; I will keep you in prayer.

     

    God Bless

    Tim

  • Todd Stafford
    Todd Stafford Member Posts: 1
    #46
    JM88 said:

    same thing
    I have the same question. After a childhood bout with Hod. Disease....I have been looking for treatments for muscle atrophy. I am a workout nut and yet nothing works.

    Muscle Atrophy

    Right there with you. Work construction, muscles all over, except neck, shoulders and chest.  I am trying to find appropriate doctor to help deal with it.  I just joined last night. If I find out anything worth knowing I will definitlely share.  Radiation treatments in late 70's, I am now 47. Atrophy started soon after treatment.  Just dealt with it until now.  Heart troubles started in 2011, first pacemaker then 2014 open heart surgery (double bypass and two artificial valves) not to mention lots of skin cancer popping up.  Wild ride for us.  Keep up the hard work, maybe something will give.  Never give up.

  • JanetGreen91
    JanetGreen91 Member Posts: 5
    edited July 2017 #47
    Butterfli7 said:

    Hey CJK

    I am new to the site and had Hodgkins in 1987.  Had radiation to the chest and throat. I like you and many others are have many long term issues.  I have weakness and pain from neck fibrosis.  Got a hard collar for my neck in 2014 to help with this problem.  Just had a heart attack and tripple bypass surgery in 2014. Also I have trouble with food getting struck in my throat which surprises me that I haven't heard anyone else mention on this site.   I am now at the point especially with my neck that working has become an issue with me.  I forgot to mention that I also have restrictive lung disease. I am in the process of applying for disability.  My family thinks I will not have any trouble, but I am skeptical.  Do you know of anyone who has tried for disability for neck fibrosis?  If so can you share their experience with me?

    Thanks and I hope the best for you.  I know for myself it is a long road traveled and I wish for you better days. 

    Same problems

    Hello CJK,

    I had mediastinal Hodgkins with 32 mantle radiaiton treatments 1991.  Am 53 years old now and finally figured it out myself why the sides of my neck and upper middle back have burning and stabbing pain constantly and my left arm twitches off and on through the day, vomitting migraines also. Food gets  stuck lower in my chest that hurts so bad until it passes I feel helpless and think I'm going to have to call 911?   And of course had total thyroidectomy for 6 nodules plus papilary cancer, and 3 basal cell skin cancer spots treated (all in odd sun-blocked areas within the radiation field). I just saw my new primary care Dr. who recently diagnosed me (after not being diagnosed by an ortho/neuro, oncologist, and my primary care of 15 years) and she said it is like fibromyalgia- cannot get disability especially without a diagnosis code (ICD10) so I am on a mission to get this condition recognized and respected!  I sent an email to American Cancer Society, ICD10code website, and Dr. Stubblefield today asking for advice/help.    

  • JanetGreen91
    JanetGreen91 Member Posts: 5
    edited July 2017 #48
    viola43 said:

    Radiation and neck atrophy

    Hi CJK,

    i had extensive radiation for Hodgkins about 20 years ago and 5 years ago figured out (from this site) that I also had RFS. My oncologists had denied I had RFS so I went to Sloan Kettering to get more info and the diagnosis. The long-term clinic there was so helpful and made me better understand my condition - the neurological, internal, and orthopedic ramifications of my radiation. I took home a folder with medical summaries and recommendations for monitoring systems. Having this information and an article by Dr. Stubblefield helped to educate my docs and other health professionals as well as legitimize my symptoms. Physical Therapy, home exercise, heat and other interventions have helped considerably but a support collar has been particularly useful. I take frequent rests throughout the day and sometimes use a home traction machine. My neck and upper back tire easily and are stiff and painful which is limiting. 

    I'm sorry you have had to be your own advocate but you sound strong. I know what a physical and emotional toll RFS causes and am sorry you are experiencing so many symptoms. I recommend going to a cancer survivorship center in your area if you haven't already done so for an assessment. it was such a relief to find people so knowledgeable and empatHetic. 

    Best to you -

    Viola. 

     

     

    misdiagnosis

    Hello Viola,

    I feel the same as you.  I also was misdiagnosed 3 times then finally had to change primary care doctors to find one who listened.  I recently to those ignorant physicians Dr. Stubblefield's and "NCBI Opportunities for rehabilitation of patients with RFS" info and a letter telling them why I am not paying their fees.  The Orthoneuro specialist said he didn't want to read my radiation reports because that was too long ago and the oncologist I saw said "it is unlikely" that I have it.  UGHHHHHH

  • jmazzenga
    jmazzenga Member Posts: 2
    #49
    JanetGreen91 said:

    Same problems

    Hello CJK,

    I had mediastinal Hodgkins with 32 mantle radiaiton treatments 1991.  Am 53 years old now and finally figured it out myself why the sides of my neck and upper middle back have burning and stabbing pain constantly and my left arm twitches off and on through the day, vomitting migraines also. Food gets  stuck lower in my chest that hurts so bad until it passes I feel helpless and think I'm going to have to call 911?   And of course had total thyroidectomy for 6 nodules plus papilary cancer, and 3 basal cell skin cancer spots treated (all in odd sun-blocked areas within the radiation field). I just saw my new primary care Dr. who recently diagnosed me (after not being diagnosed by an ortho/neuro, oncologist, and my primary care of 15 years) and she said it is like fibromyalgia- cannot get disability especially without a diagnosis code (ICD10) so I am on a mission to get this condition recognized and respected!  I sent an email to American Cancer Society, ICD10code website, and Dr. Stubblefield today asking for advice/help.    

    Same Problems

    Hi Janet.....I've read your story and wondered how you were coping 'today' with it? I'm of the same age, dealing with post mantle radiation, an avid workout nut, and no matter what I do, nothing 'develops'....not that the rest of my body isn't stronger - it really is. 

     

    But it's a psychological thing more than a physical nowadays...

  • Tere
    Tere Member Posts: 2
    #50
    radiation neuropathy

    Check out Dr. Sylvie Delanian.  She is in Paris, but you might find a physician willing to try the medications she prescribes.

    cheers to everyone

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