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Post Mastectomy Pain Syndrome (PMPS)

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  • rebellamy
    rebellamy Member Posts: 1
    edited May 2010
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    Hello, While I do not have breast cancer myself, my mother has just been diagnosed with breast cancer this spring. There are millions of words one can say to try and lift all of your spirits but I know that the only comfort my family and I have been able to receive has been from our savior Jesus Christ. I know for those of you who are not believers may say another one of those people, but I beg you look into who he is, dont keep sitting in your misery when there is so much to be offered to you, not in only healing but in companionship. He knows what you are feeling when you feel like no one understands, and your probably right they probably dont, but He does. Jesus walked as a human so that he can identify with us, to show us that he does indeed understand what are human emotion feel like. He offers so much love and understanding and it is vital that we get to know him especially in these times of heart aches. This walk of going through breast cancer is hard but with Jesus it is manageable, and through him there is no such thing as death if we only believe on His name and love him through our actions, we can spend an eternity with him............. Get to know him sisters.... He offers life, peace, and yes even in these times joy. Give him your heart he will cherish it. for he knows exactly how many tears we have cried. trust on him and you will never be put to shame.

  • fogandroses
    fogandroses Member Posts: 130
    edited May 2010
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    I'm home! Three canceled flights and finally went to London to get a flight from there. Lots to catch up on!!!! Off to water aerobics for now.Back soon. Love, Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited May 2010
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    Yeah, Foggy is home.  So tell us everything about the trip. Love Hipp

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited May 2010
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    can someone please tell me where i find the questionaire ? also the articles abt the anesthesia block helping womam having  post surgery... can someone please send me that link again...i am having revisoin surgery for my left implant which shifted to the left on June 22..i want to send this article abt the anesthia to my PS....

    thax ladies!!!

  • binney4
    binney4 Member Posts: 1,466
    edited May 2010
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    Tinkerbelle, if you mean the New York University research survey about post-mastectomy symptoms, it's here:

    http://www.stepup-speakout.org   (The home page has a paragraph about the survey and a link to the page.)

    PLEASE, all,  do take a few minutes to do this -- we need to tell the medical world what life is really like beyond bc treatment.

    THANKS!
    Binney

  • hipchik47
    hipchik47 Member Posts: 113
    edited May 2010
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    yoohoo where is everyone???  Im on a roadtrip right now on my way to Maine to see my daughter and her hubby.  In North Carolina right now.  Tomorrow Virginia, then Pa,NY, Mass and Maine.  Food has been so delish.  Had she crab soup.wonder if it has any he crab in it lol.  I miss u guys so start writing ....

  • whippetmom
    whippetmom Member Posts: 6,028
    edited May 2010
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    Bump

  • Estepp
    Estepp Member Posts: 2,966
    edited May 2010
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    Daisy, please share with us what you mean by Lymph Pain?

    I also do not have LE from all I know..

  • whippetmom
    whippetmom Member Posts: 6,028
    edited May 2010
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    Bump

  • Deeds
    Deeds Member Posts: 43
    edited May 2010
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    Daisy - I cannot answer from personal experience, but this topic was addressed early on in this forum. If I remember correctly, one of the possible causes of PMPS might be due to damage of the costobrachial nerve. If that's true, then removal of the implants won't help. In fact, one study of post mastectomy pain (I believe it was the scandinavian study) involved women who had never had implants. Still...ask your PS!

     So, so sorry that nothing works for the pain!

  • fogandroses
    fogandroses Member Posts: 130
    edited May 2010
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    Hi Hippy and all my sisters!!! Sorry I've been radio silent for so long. We were away for a month and so much happened while we were gone. So much changed for me physically and mentally - it took me a long while to get myself together and figure out where I am. I have a salt of the earth nephew who likes to say "I'm going to brief it up for you." And that's what I'm going to do.

    I am almost pain free now...the nerves in my left arm have quieted down so my hand doesn't go numb, long sleeved shirts don't bother me anymore. The constant pain in my left chest is gone...yes, gone. It comes back when I lift something or drive or twist the wrong way. But mostly it's gone. I am sleeping comfortably for the first time in almost two years. Was it water aerobics? Acupuncture? The complete change of routine? Or maybe just the passing of time? The truth is I don't know.

    But I do know I will never forget how it feels to be in pain. Or how coming out of the pain felt, when I was half way between these two worlds...walking in the sun with a light breeze against my face felt like flying. I will never regret the gift of knowing. In the interest of "briefing it up" I won't explain that now but I know you understand.

    The article for the NY Times will be submitted next week. They receive over a thousand articles a week so chances are it won't be published. But maybe it will. The doc from Boston who is co-authoring already has someone who wants to publish but I decided to go for the Times first. If it's rejected we'll go the more scholarly route and I'll also post the article here. (not allowed yet since the Times only prints original material). This article is just the beginning. I'm trying to figure out exactly what would have helped me on this journey. My rage at being injured and then ignored is turning to quiet determination. It won't be easy and it will take a while but we will be heard.

    Love to you all. Fog
     

  • Deeds
    Deeds Member Posts: 43
    edited May 2010
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    Fog:There is HOPE, and you're proof of it!

    We need your voice to speak for those of us who are still somewhere "in between". The fact that you are just up to your 2 year mark since being diagnosed could also be a clue. Daisy - you have a couple of months to go before you're at 2 years. Expect a miracle! 

    Thank you, too Fog for your continual optimism. Another clue, I think!

  • Estepp
    Estepp Member Posts: 2,966
    edited May 2010
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    Sweet Stephanie.. I am beyond sorry for you sister. I HATE all this. I wish this had not happened to you. Having to sleep in a chair after all this time to get pain relief. NO ONE told us this huh? I am truly sad for you. It is all I can say. I am sorry.

    Well, for me... I had a horrible day yesterday myself. My arm swelled up and is pitting. The pain down the entire are is about a 5. I cannot believe it. I have Lymphedema. I have been in such.. denial.

    I got fitted for a sleeve I have on now. It gives me relief. My arm is big...:(....... and I am not. I was told, being thin.. I would not get LE even though I had ALL my nodes removed, a mastectomy and Radiation. WHATEVER.

    I miss who I was so bad. SO BAD. Stephanie.. I feel your hurt. My heart is very tender right now.. I cannot believe this is my life.... I am about as messed up in my head as I was the night before my masectomy. Actually more.

    I will be off BCO for awhile to deal with all this ladies. I hope you can find the way to deal with your crosses too! Steph... you are in my heart and prayers.

  • Deeds
    Deeds Member Posts: 43
    edited May 2010
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    .

     Oh, Laura (Estepp). That was so hard to read... what you're dealing with now.  We're all rooting for you, and hope to have you back soon, with better news.

  • fogandroses
    fogandroses Member Posts: 130
    edited May 2010
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    Laura, you give so much love and comfort to everyone else. I know God will return this to you ten fold as you focus on yourself.

    I wanted to share my only sister's story with you. She is a hair dresser and she has lymphedema. She had melanoma stage 3 on her right side and had all levels of lymph nodes removed almost 3 years ago. She is right handed. She went to a lymphedema specialist at a local center who helped tremendously (special massage and pool treatments). 

    It was bad in her right arm, side and back for several months. But with consistent treatment and a reduced work schedule she has fully recovered. She has flare ups if she over does it but she is very active and works hard. I remember reading that you couldn't devote any more of your time to treatments. You wanted to move on with your life. When I read that I thought of my sister who had her business and her clients and at first felt the same as you. But she learned that the time she invested in getting better was well spent. She learned to take care of herself and somehow it all worked out. Her clients adore her and actually helped take care of her. I'm sure your clients feel the same about you. Anyone who is lucky enough to be in your life knows it.

    Making your recovery (mental and physical) your first priority may seem like giving in or giving up the fight for normalcy. But it is the opposite, Laura. It is the beginning of reclaiming what cancer has taken from you. It is okay to fight for yourself. No one else can do this work. Fight for your recovery with the same energy you give to the people you love.

    I'll PM you my sister's email address if you like. With Love, Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited May 2010
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    Deeds, thank you. Yes, there is hope!  Back in December I read a study that revisited PMPS sufferers 7 years after surgery and they found that 50% were pain free - a ray of light appeared in the darkness. 

    Stephanie, I'm sorry I'm not up to speed on what's happening with you. But just wanted to say I'm sorry, too. 

    Love, Fog

  • whippetmom
    whippetmom Member Posts: 6,028
    edited May 2010
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    Laura:  I had no idea!!!  My sister emailed me to let me know what was going on with you.  I am so, so sorry.  You will be in my daily prayers my dear friend....

  • Ashlynnicole88
    Ashlynnicole88 Member Posts: 3
    edited June 2010
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    There is a non-surgical treatement for post mastectomy pain syndrome that uses the Wurn Technique®. This treatment uses a hands-on manual physical therapy to release the adhesions that form during the healing process following surgery. These adhesions can reduce range of motion and produce the pain and tightness that is often associated with post mastectomy pain syndrome. 

     For more information on this treatment, you can read an informational eBook at www.clearpassage.com/ebooks/post-mastectomy.pdf

  • whippetmom
    whippetmom Member Posts: 6,028
    edited June 2010
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    Bumping

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Thanks but I couldn't get that link to work.  Did anyone else? Fog

  • Ashlynnicole88
    Ashlynnicole88 Member Posts: 3
    edited June 2010
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    Sorry, here is the correct link. 

    http://www.clearpassage.com/ebooks/post_mastectomy.pdf

     -Ashlynn 

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    I just clicked on Ashlyn's bio.  She is the Wurn technician.  Not that thats bad, I just think we should all be aware.  The Clinic she works out of is 45 minutes away from me in Florida.  I am on a road trip now in my rv, so when I get back to Florida I might look her up.

  • makingway
    makingway Member Posts: 465
    edited June 2010
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    Just the thought alone of having someone massage or touch the area hurts...I can't even let the water from the shower hit it.

  • whippetmom
    whippetmom Member Posts: 6,028
    edited June 2010
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    CLEAR PASSAGE THERAPY:  CAUTIONARY STATEMENT....

    Okay, I have been researching this for the past twenty minutes only and I have come up with some comments regarding this "patented" treatment - and I would suggest that you withhold divesting any of your hard earned cash into this until further notice. 

    One medical doctor's blog states as follows:

    http://doctorandpatient.blogspot.com/2006/01/clear-passage-therapy-taking-infertile.html

    I am sure I will find some others.....

  • whippetmom
    whippetmom Member Posts: 6,028
    edited June 2010
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    From another infertility clinic M.D. with warnings against certain therapies, under which Clear Passage was listed:

    "9. Physical therapy and massage therapy to remove adhesions. "Clear passage" at www.clearpassage.com claims to achieve excellent success rates with "site-specific" massage, which they believe "decreases adhesions and increases function of the organs." This is an excellent example of quack therapy ( to learn how to identify quackery read www.quackwatch.com). However, it's all just clever marketing ( what a lovely name they have selected !) . Their claims that their "medical studies " were "recently honored with induction into the US Library of Medicine" will unfortunately mislead naïve patients into believing that this therapy works, when every surgeon know that it's impossible to remove adhesions without surgery - after all, scar tissue does not melt because you knead it !

    Not only do all these treatments waste time, money and energy, they also cause patients to get fed up and frustrated, so that they end up losing confidence in doctors - and in themselves ! The worst kind of hope is false hope - and these treatment offer unsuspecting patients just that, and nothing else. The only antidote against this is information and education, so you can protect yourself from such harmful treatments.:

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Makingway - you're exactly right. I used to take showers with my left hand over my chest. And PT hurt for days after.

    Deborah - thank you for doing that research and providing another view point. I'm sure Ashlynn has the best intentions but it sounds like this treatment is not a cure all for PMPS.

    Good night all. Fog

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Ladies:

    I start LE Therapy Monday. I will post my experience if you want me too.

    Laura

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Laura - I'll be thinking about you Monday. You are already in my prayers. I hope you will post about your experience for two reasons: 1. it will help everyone here and 2. selfishly, I want you to stay in touch.

    You are one of the people who always lifted my spirits here just reading your posts. Knowing you are hurting so badly now, so much so that you need time off the board to focus on getting better, breaks my heart.

    We are here for you now like you've been there for us all along. Love, Fog

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Fog... you note was immensely special and so nice. I will post back my experience Monday in LE Therapy to help my girls on BCO... I promise.

    BCO helped me SO SO SO Much in the first two months after dx.. that I promise God, I would stay and help here..... or anywhere He chose for me.

    So far... I am here;.. and I love love love all you girls!!

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Laura - how did it go today? Thinking about you...