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Post Mastectomy Pain Syndrome (PMPS)

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  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    LADY'S... THIS IS A TEST FOR BCO....

    CAN YOU ALL SEND ME A PM.. JUST PUT ON IT..... TESTING

    THANK YOU

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Well, I so appreciate all you hopes , prayers and thought for me..

    I have truckle LE and in my effected arm.. SO.. this was slightly unexpected. But ladies, I KNOW I have been living in denial..

    My PT is so great. I met here two yrs ago when I started this BC Journey. I am lucky to have her in KC.

    We did an hour of massage... Lymphatic massage that is. She will see me twice a week until about the end of July. She thinks we caught in in time. My left arm was 1 1/2 larger than the other..

    Anyway.. she said it is due to total node dissection and RADIATION.

    Thank you for continued support. I will TRY to STOP having issues..lol

    I am going to post this on two other threads... Thank you for caring so much!

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Nice Add to this thread Daisy... TY...

    Packergirl is a BIG Yoga girl... I think she told me she started it 3-4 yrs ago.. I want to do this also. I have a wrist that I cannot put any pressure on.. so even the Down Dog ( I think) I cannot do. So I am going to look further into LIGHT Yoga... for mainly the : keep moving: part...

    Thanks Again for posting this.

  • Lovegolf
    Lovegolf Member Posts: 75
    edited June 2010
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    I went to my first yoga class last.  The fitness center at the medical center has free classes for all cancer paitents and survivors>  It was great.  I am going to try to caught one class a week, two if work allows.  I can see this helping so much with range of motion, etc.

  • Ashlynnicole88
    Ashlynnicole88 Member Posts: 3
    edited June 2010
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    Hello ladies, 

    My intent in posting information for Clear Passage was not to mislead. My goal was to provide information and education as to an alternative to surgery. We have treated women in the past with post-mastectomy pain and have achieved great results. I am in no way claiming that this therapy is a cure all, I simply wanted to provide information for you to consider at your own discretion. 

    Clear Passage is aware of the blog that was posted by Dr. Malpani, who owns an IVF clinic in India. If you read the comments posted below the blog, you will find very interesting discussion by both skeptics and believers. Again, my intent is to inform, never to mislead. 

    Sincerely,

    Ashlynn Northcutt

    Clear Passage Physical Therapy 

  • whippetmom
    whippetmom Member Posts: 6,028
    edited June 2010
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    Ashlynn:  Thank you for clarifying.  I think that members can explore further the PT options you provide if they are inclined to do so.  It may well be that someone could benefit from the services you provide.

    However, you joined bc.org with the express purpose of posting and advertising your services, which really is inappropriate.  All of your posts have been referable to promoting Clear Passage PT.

    Your posts have been in violation of Breastcancer.org policies, to wit:

    You agree not to advertise or promote any goods or services in the Discussion Boards or Chat Rooms......You agree not to solicit anyone to buy or sell products or services, or to make donations of any kind, without our express written approval.

    These guidelines remain in place for the protection of bc.org members.

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Daisy, at the risk of sounding completely out of touch (well, actually I guess I am out of touch!) how do you do yoga with a Wii? If I'm picturing it right it would be like watching a DVD? I've never seen a Wii...just heard people talk about them. I went to a few yoga classes at a local center and really enjoyed the stretching. But it would be cool to do yoga at home with a little help.

    Laura, you're doing all the things my sister did for her lymphedma. As I say to her when she's taking care of herself, "Good Girl!!!" You are so much alike, both of you taking care of others, so exuberant and full of life. She has red hair and was always getting into mischief, and taking me with her on what she called adventures. When we were really little she took red lipstick and wrote "Lisa dibbs this" on our parents bedroom wall. Luckily I didn't take the fall. They came looking for her as soon as they saw it!!!

    Deborah, thank you for keeping watch for us. With love to all, Fog

  • jkfran
    jkfran Member Posts: 3
    edited June 2010
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    After 18 months of pain following my mast, I finally feel hopeful.  I have been dx with costochondritis.  Costochondritis (kos-toe-KHON-dri-tis) is an inflammation of the cartilage that connects a rib to the breastbone (sternum). My pain is similar to that describe by some on this blog.  TIghtness across chest, pain under the arm.  Costochondritis can be caused by chest trauma.  The treatment involves anti inflamatories, pt, muscle relexants possible steroids.  I have started pt with an ion treatment.  It use negative charges to deliver an anti inflam directly to the effective area.  I meet with pain management next week.  I will keep everyone posted.

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Fog.. you remind me of the BEST kind of sister...:) xxxooo...

    If I am not taking care of someone..if not one needs me...I go find a soul that does..:)... I have a career.. it is successful. I love what I do.. ( taking care of....) When I have not one to care for.. I go looking... I just might like that sister of yours!!!

    PS.. I took your wonderful words as a complement. TY.

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Deeds.. sweety... How are YOU doing?

  • Nbb1032
    Nbb1032 Member Posts: 6
    edited June 2010
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    Hi Everyone,

    New to this thread.  Just diagnosed 5/12/10 and already having pain in armpit after a single lymph node biopsy two weeks ago.  Also, my sister had a bilat w/immed implants last year and is still in pain!  I need to schedule my surgery ASAP so the question is this:  Has anyone recently had their surgery using th paravertebral block that you all were talking about.  And if so, did you have immediate reconstruction?  I really want to avoid the nerve pain that you are all experiencing (or at least minimize it)  

    Thanks for your imput!

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Laura - oh my gosh - the thought of you and my sister in the same room made me smile from ear to ear! Just so much positive energy!!!I hope your LE is lessening and you are resting this weekend. The soul that needs you right now is your own - take good care of you.

    jkfran - I'm glad you have a diagnosis for your pain. Please keep us posted on your progress and let us know if treatment for costochondritis relieves your symptoms.Taking a positive step forward on the road to recovery is a tough thing to do and so important. Bon courage as they say in France!

    nbb1032 - So sorry you're having pain after your lymph node biopsy. Under the arm is so sensitive and any surgery there can be especially painful. I hope someone will come along who had the paravertebral block for their surgery. I think the block helps with immediate post-op pain. Some studies have shown that the more severe your pain the first few days after surgery, the more likely that pain is to become chronic. So the theory is that the block gets you off to a good start and you're less likely to develop chronic pain.

    But my gut feeling is that a surgeon injured my nerves and the block would not have helped me other than giving me a more comfortable first few days of recovery. There are a couple different causes of PMPS. Mine was nerve trauma during the surgery. So I woke up with the damage done and it's taken almost two years to heal. Deeds developed pain after her exchange surgery. And sometimes the healing process traps nerves.

    My advice is to find a highly skilled surgeon and make sure he or she is doing the surgery. My surgery was done at a teaching hospital and I believe a resident did my prophy side. If you find yourself in pain after a month or so see a pain specialist. You are so far ahead of where most of us started out - just knowing that PMPS exists is HUGE.

    Love, Fog

  • Deeds
    Deeds Member Posts: 43
    edited June 2010
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    Bump

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    I wanted to update you on what I'm working on. No news on the Times article BUT at the same time I've been trying to clarify what needs to change exactly? My life coach neighbor told me that if you can't say in 24 words what you want then you haven't figured it out. I was not even in the ball park. Also, Trudy from the UK posted a link to an article that really got me thinking. It appeared in London the same month I had my bilat mx, July 2008. The young woman was bascially saying the same thing I want to publish in the Times. So a personal testimonial about PMPS was published and yet Trudie, who went to the very same hospital, was in the same boat we all found ourselves in...So I think I can say what I want in 24 words (or less!) I found it in an email I wrote to our local cancer center. Here's the whole email and, in bold type, the nugget!

    <<I'm through treatment and reflecting on the past two years, asking what would have made it an easier experience. I've talked with lots of other BC patients and we all agree that after surgery we were pretty much dumped out of the system and on our own. I did go to Holistic Therapy for PT but only after I continually asked my surgeon why I was still in pain 3 months after surgery. Women are left to advocate for their post op care and this just doesn't seem right to me. Cardiac patients go through a rehab program after surgery - that's the standard of care. Does a program like this exist for BC patients? That is what I'm researching because I'm going to start advocating for it and I'd rather not re-invent the wheel.</p>

    Long story short - when I received the phone call with my biopsy results - I wish there had been a guideline for care that started pre-op and continued post op. Is there someone familiar with the BC scene in Maine who could give me an idea of where and who might be providing this kind of care?>> (I attached KristinPink's pdf file that describes pre and post op rehab)

    Sorry this is so long - so much for "briefing it up". :) 

    Love, Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Daisy,

    Thanks for that information on Wii Fit Yoga. As I was reading your message my daughter walked by and said she had tried it and it was cool! Funny though she said "it" asked her if she fell over often and told her she should gain 15 pounds. Now, I would buy my own if it would tell me to gain 15 pounds. And I would definitely fall over!!!! 

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    Fog, where do I click to see the email????

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Sorry about that - I guess it really was too long! Here's the email

     I'm through treatment and reflecting on the past two years, asking what would have made it an easier experience. I've talked with lots of other BC patients and we all agree that after surgery we were pretty much dumped out of the system and on our own. I did go to Holistic Therapy for PT but only after I continually asked my surgeon why I was still in pain 3 months after surgery. Woman are left to advocate for their post op care and this just doesn't seem right to me. Cardiac patients go through a rehab program after surgery - that's the standard of care. Does a program like this exist for BC patients? That is what I'm researching because I'm going to start advocating for it and I'd rather not re-invent the wheel.

    Long story short - when I received the phone call with my biopsy results - I wish there had been a guideline for care that started pre-op and continued post op. I'm attaching a pdf that goes a long way toward describing what would have been helpful. Is there someone familiar with the BC scene in Maine who could give me an idea of where and who might be providing this kind of care?

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Another update: the survivor care coordinator from the community center called last night to discuss my email. She said that there is a HUGE need for a standard of care (esp. post op) for BC patients in Maine. She is being contacted by many women who don't know where else to turn, who feel alone with their pain and other issues, and whose doctors don't understand why they are having problems. Sound familiar???? She said there are a couple of groups working on defining the standard of care and gave me their names and numbers. I'm going to follow up with them today. I was relieved to find a kindred spirit who not only understood exactly what I was talking about but is involved and knowledgable about work in progress. 

    So I now know what I want to happen and I have decided to start in my own back yard. Love, Fog

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    (((((((FOG)))))))

    I have PT today ladies. I will have it twice a week till August.. GRRRRRRRRRRRRRRRRRRRR

    Anyway.. I get WRAPPED today... and I know it is going to help treat me..............but.....

    Being honest here.............. I AM MAD and I WANNA throw a fit like my 2 yr old granddaughter....

    The wrapping of the arm for LE is amazingly... UGLYYYYYYYYYYYYYYYYYYYYYYYYYY

    and every sweet sister that has LE understands what I mean.... grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

    OK... I vented....

    see you in a few.... of to get massaged..and uglyfied..... ( is that a word)

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    (((((Laura))))) yes, it is so so unfair, frustrating, uncomfortable and ugly, too. Ugly - it's just not you. One day my sister came over and we were sitting at the table holding hands, crying. She said she was sorry for crying because it didn't help. I told her we should cry all we want today and tomorrow we'll begin the fight and we won't stop fighting. So we sat and cried until we didn't feel like crying any more. Then we got on with her treatments. And that's just what you'll do. We'll be holding your hand from here. With love, Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    Thanks Foggy, you r the best!

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Hippy, are you home? Did you have a good trip? Where did you go? How are you feeling? I'm sure I could come up with more questions but I'll take it easy on you this morning.

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    Hi Foggy, I am in Gatlinburg Tennessee!!!   We are on our way home, only 1 more stop in Georgia to pick peaches and get some pecans. 

      I feel the same, but I have to do what I have to do, and thats to see America.  I have some pain pills that I  take sometimes, but they really don't help, Oh well, Im happy to do what I can do.  Will give my travelog when I get home. Love Hipp

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Awe Fog, you must be everyones BF where you live. Over the Internet, you are so kind and uplifting.. a joy to be with. TY!

    Well.. the wrapping of the arm.. easy to do... and not as big as I thought it would look.

    I slept in it last night as instructed.. and woke this morning to sausage roll fingers.. EEKK.. I forgot/had no time to call my PT... so I will not wrap tonight, and MAKE the time to call her tomorrow..

    The massage is wonderful. We talk all the way though it. .. she likes the things I do in my life.. etc... I like talking with her... but next visit, I am going to ask her if it can be silent. I think I can focus on healing if we are quite and she works on me.

    Ladies.. have a blessed weekend coming up!

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Laura, how are your arm and hand this weekend? Did the wrapping somehow force lymph fluid into your hand?  I don't have lymphedema but I go every two weeks for a massage. I do believe it's important to be quiet so you can be in tune with your body. I also believe my massage therapist helped my brain. Just an hour every two weeks (especially when I suffered so much from PMPS) your brain gets a break from the relentless signals that something is wrong. That break in the cycle of pain, just that little bit of relief, can make all the difference. I think that's partly why I'm on the road to recovery. And makes me glad I stood my ground and said I'm doing this for me and I'll sacrifice in other areas but for now I have to take care of me! That's what you need to do and it's not selfish. Laura, I know I've said this before but take care of you. You are precious and one of a kind.

    Hipp, did you pick peaches in Georgia? We had peaches for breakfast this morning and I thought of you. Maine actually kind of feels like Atlanta today - muggy and hot. We lived there for a year and I loved the peaches and pecans!!! Maybe you're home right now having some vanilla ice cream with peaches on top, sitting by the pool.

    I'm sorry to vent but I know you all understand so I'll do it here and not to my family. Last night when I was getting ready for bed I took off my bra and didn't put on the bandeau bra I wear to bed. I wanted to see if I could go bra-less. I can't do it. I started to have a panic attack because I was afraid this part of PMPS won't ever go away and I'll always feel like I'm being shocked.I had this terrible feeling of being trapped in my body. Then I got really angry again at the surgeon(s). I'm trying to let go of the anger but it keeps coming back. My daughter asked me not to be angry all the time like I was before I started getting better. That made me sad. I didn't realize it showed that much. The whole time I am typing this little voice is saying I should be happy, grateful and I am...very much so. But I want my old body back. I want my old body back with all my heart. There I said it.  Thanks for listening. Love you all. Fog

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Me too Fog. I sit here in TOTAL understanding. It is so sad... whether it be PMPS, fibro brought on by nerve damage, LE, bone and joint pain from the ER/PR girls after meds.......... we ALL feel like you do. It is our life right now. Maybe not forever.. who knows. What we do know... is it is very hard to deal with, and accept our new found life and body. You are SOOOOOOOOOOOOOOOOOOOOO not alone. I SUCKS bigger than anything bad I have ever had in my life.. so I know all the sisters in our shoes feel the same. We are the same. It just IS.

    " At least you are alive"

    " At least I am alive..."

    Who all here TOTALLY know this... but is beyond tired of hearing it...

    Fog... you're not alone!!

    I feel  it ladies... SOMEDAY we will be healed... someone will be able to help..:) Keep the faith!

  • fogandroses
    fogandroses Member Posts: 130
    edited June 2010
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    Thank you, Laura, I really needed to hear that. Someday we will be healed. You reminded me of a a song by ColdPlay. The first time I heard it I cried. It truly seemed like a message from God. It's called Fix You.

    When you try your best but you don't succeed
    When you get what you want but not what you need
    When you feel so tired but you can't sleep
    Stuck in reverse.

    And the tears come streaming down your face
    When you lose something you can't replace
    When you love someone but it goes to waste
    Could it be worse?

    Lights will guide you home
    And ignite your bones
    And I will try to fix you

    And high up above earth or down below
    When you're too in love to let it go
    But if you never try you'll never know
    Just what you're worth

    Lights will guide you home
    And ignite your bones
    And I will try to fix you

    Tears stream, down your face
    When you lose something you cannot replace
    Tears stream down your face and I...

    Tears stream, down your face
    I promise you I will learn from my mistakes
    Tears stream down your face and I...

    Lights will guide you home
    And ignite your bones
    And I will try to fix you.

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    Hi Daisy,  I think we have all had those weeks where we just want to do nothing cuz we r in pain, but feel so guilty doing it.  I don't think anyone who has not walked in our shoes can understand that guilt and feeling of uselessness.  But, I do what I have to do and thats chill out when I have to.  The problem is, I rest for a while,feel a little better, do some stuff, and bam Im back in the pain again.  Your son won't care if u eat pizza every nite,lol.  Sandwiches are good too.

     I just wanted to comment on the man therapist.  I was skidish about a man touching me......well I was so right.  A man has a much harder touch than a woman.  I went to a male therapist right after my bmx.  He was very nice, but I was in agony when I left the building. He did help my range of motion though.  Anyway, I went to several therapy sessions b4 I realized I had to have a woman.  I am done with therapy now.  I go to a pain specialist (my 3rd one).  He flat out told me the kind of pain I have will never be helped by therapy.  I was glad he said that because I was sick of hearing both pain specialists and therapist tell me they could help when I knew deep down they couldn't.  So I get pain pills to tide me over. I am hoping someone will come up with a solution to this pain problem, but for now I will take the pills and not throw my money away to people who say the can help but really can't.

  • Estepp
    Estepp Member Posts: 2,966
    edited June 2010
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    Steph... please PM me your symptoms again. tell me them exact. I am going to take your individual situation to my PT on Monday or Tuesday next week. ( cannot remember the first day I see her next week) I will see if she has seen what you are talking about. She is a PT and she specializes in LE.. and pain after mast and rads.

    Maybe getting an opinion from another PT in another state...???? who knows... but I am willing to try for you. I know that what I deal with is hard, emotional and it gets in my way of my life somedays. But I do not believe I hurt as bad as you and some of the other girls. I am so sorry...

  • hipchik47
    hipchik47 Member Posts: 113
    edited June 2010
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    Hi Daisy, I have been on pain meds for a long time.  Same progression as u tylenol with codene,vicodin, and now percocet.  I am up to 4 a day now.  I suffer till around 4 then I take them every 3 hours for some relief.  Its not much relief, but its better than nothing.  Right now this is all I have for relief so I'll take what I can get.  Stinks though, I just want to be normal....................