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Post Mastectomy Pain Syndrome (PMPS)

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  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Fog, I don't know if I would have understood that I could have this kind of pain.  I probably would have still chosen a bilat.  I can't beat myself up about the decission I made.  I just don't like the fact that my BS did not say ANYTHING about possible cronic pain. 

      I am going for my second physical therapy today.  I hope it goes better than the first one.  I'll keep u all informed.

      My mom had bc twice also, so I wanted the most agressive treatment.  Bilat mast was the most agressive.  My mom had lump and rads.  She had a second primary in other breast.  She was fine and lived to be 90.  I just did not want the weight of the world on my shoulders anymore.  I had "iffy" mammos for years and did not want to continue 2-4 mammos a year waiting for the worst. 

      Later Gators!!!!!

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

      Bett, what is a neauroma anway???

      So as I was sitting at the therapists getting a "deep tissue massage" I realized that massage is not the answer.  If its all about the nerves how can I massage help??  Im still in pain....................

  • Lovegolf
    Lovegolf Member Posts: 75
    edited February 2010

    Hello ladies

    I had bilat Mx 5/1/09 and had PMPS.  It was the hot wire across my chest feeling.  My surgeon was great about it and talked to me. I had no reconstruction.  On 10/28 a great PS went in and did magic. I had developed a real hot point that triggered alot of pain.  PS revised the scar and removed extra tissue etc.  I feel great no more pain.  The hot wire is gone. I sleep on either side with no pain. I rolled over in the bed with out pain or waking up. PMPS is very real.

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    So how do I go about finding a ps???  I can't stand the thought of talking to my bs cuz Im sure she knows about pmps.  I would be devistated if I woke up from surgery still in pain.  Help help help

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hi everyone. I'm back from seeing my PS in Boston to discuss my letter (see post above) and wanted to update you. Our meeting couldn't have gone better. It was more than worth the trip. He was compassionate, smart and humble. He took my letter seriously and is working to make sure education about PMPS is part of pre-op activities and post-op followup.I gave him the handout from Dr. Wascher - he was very interested in reading it. He's going to keep me updated on procedural changes and wants me to meet with my BS as well. Progress!

    Smart - I asked about clips being used and he said yes it is common practice (they don't use them at Brigham/Women's. they cauterize instead)  I asked if the clips could be causing PMPS and he said yes, if a nerve is entrapped by one of the clips. Obviously no guarentee that the clips are the cause...but it's possible.

    Thanks Hipp for your thoughts on making your choice. I think you're right. There no way I could have understood the impact of chronic nerve pain and weighed it against the positives of having a bilateral mx. But I sure would have appreciated knowing about it when my symptoms went undiagnosed for 18 months. 

    LoveGolf - thank you for sharing a success story. You give us all hope. With love, Fog

  • Deeds
    Deeds Member Posts: 43
    edited February 2010

    Thanks, Fog, for your unwavering dedication to educating doctors and making PMPS information available to all. You have more chutzpah than most of us.  Spoke with my PS today and mentioned that it needs to be more than just verbally alerting prospective mastectomy patients about PMPS; a handout is needed in order to communicate fully. It's also for the doctor's own protection, as they must know!

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    So Fog what did ps say as far as helping u with the pain???  Did he suggest any surgery to fix it by him or just wanted you to see bs??

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hipp - we didn't really talk about fixing me - I was SO focused and encouraged by his news!  He did give me the name of a pain specialist to contact. I think I will call but here's the thing...I started out in extreme pain 19 months ago. I asked and asked and asked...anyone who would listen...what was wrong with me?  No one had an answer. So I took pain medication and cried (a lot!) My husband deserves an award but that's another story. I have seen tiny improvements. For instance, I only take ibuprofen now. And I don't cry anymore, at least not as much. Compared to 6 months ago I am better.

    I posted earlier that a neurologist told me an injury to my intercostalbrachial nerve could have caused all my symtoms. He explained that it's just a theory because an MRI couldn't pick it up. But if a nerve gets strecthed or nicked the entire path of the nerve is effected. I think he's right. And that helps for some reason, just knowing all these symptoms are related.But if he's right, for me there isn't a cure - just medication for the symptoms. It's up to my nerve to heal on its own. This could take a LONG time.

    So what am I doing to get better and stay sane? acupuncture, water aerobics and channeling my energy into making a difference somehow. I wish I had a better answer. Love, Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Deeds - I don't have enough thank you's to thank you for starting this thread!!  Yes, the handout is key. It's not perfect but it's a start. Sleep well! 

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited February 2010

    Hi Deeds and others as well.

    I really want to do something about the fact that women are not informed about the PMPS, also.

    It is really sad that this is such a big disease and so many women get Breast Cancer and are not informed of the risks. Women deserve so much more!  We are the mothers, daughters, sisters, nieces, aunts, cousins, grandmothers, friends and so much more. We have to take care of our families and friends. It is so hard to do when you have PMPS. I am one of those sufferers and have been for over 2 years. I tried to return to my job after my surgery, but it was too difficult with the pain.  I know it is because of the nerve injury to the intercostalbrachial nerve. We seem to have to educate ourselves and be our own advocate. Good luck to all.

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    Hello Ladies,

    I am home from New Orleans and doing well.  My pain is still gone,  There is hope!  Please do not give up.  I was ready to give up after 3 years of constant pain, but I am so thankful that I did find the Dr.'s at the Breast Center in New Orleans.  www.breastcenter.com

     Check them out.

    Someone ask what a neuroma is.  I think it is nerves bundled in tissue and fat after surgery.  I had three different areas that the Dr. debundled and removed the tissue.  I just pray this last!

    Bettye

    Thanks to all you wonderful ladies for your posts and your support.  I pray you all find relief.

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Bett, I am so happy for u.  I was thinking NOLA was thr only place to go to get this fixed.  So u had recon there too???

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    YES, I had delayed reconstruction on the left and immediate reconstruction on the right.  I could not be more pleased,.  I feel so much better minus the pain and so complete with my new breast.  I just wish every woman going through this could have the same results.

    Bettye

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    BettyeE-

    Spectacular! I have scheduled a consult at NOLA for early next month. Can you provide more detail about your surgeries? Specifically, what the problem was that caused the pain, how you came to know its cause, the surgeries you had and how pain was relieved..

    Thank you soo much!

    Blessings,

    Jessica

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Good morning Ladies. I need your opinion. After reading the UK study I emailed one of the authors to ask if the UK is ahead of us in recognizing PMPS and treating it. Dr. Julie Bruce wrote back yesterday - an incredibly caring and informative email. Long story short - the UK is not ahead of us but she thinks PMPS should be included in their national guidelines for surgery (for instance, their guideline for hernia repair surgery states that chronic pain from nerve damage is a possible outcome but their guideline for breast surgery does not). Don't get me going on that one!!!!

    She said many women in the UK have contacted her about PMPS and wanted to know if I would start a website that focuses on PMPS (communication and support) and also if they could email me for support and information. I was thinking that this thread would serve the same purpose but before I email her a link I wanted to know if you all think that's a good idea.

    with love, Fog

  • Deeds
    Deeds Member Posts: 43
    edited February 2010

    Fog - this thread might be a better place to send them rather than you taking on that big of a job (I think you're saying that they wanted YOU to start the website, not Dr. Bruce?) That could be very time-consuming, and you'd be the "answer woman". Can you do that? There are more and varied responses on this thread. The only drawback for them being on this forum is that we often make referrals to clinics and doctors in the U.S., as well as having different protocols and treatments available. However, the benefit of shared experiences is invaluable.

    Just my two cents. 

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hi Deeds - Thanks! Dr. Bruce thinks we would benefit from organizing in some way (website, email support group) and I could do that but like you said that involves a lot of overhead. Plus I don't think it would be any better than what we already have on this bulletin board. I just didn't want to email a link to this thread without passing it by you. 

  • Lovegolf
    Lovegolf Member Posts: 75
    edited February 2010

    For what is forth the PS that "fixed" me was not a breast reconstruction PS.  He is more of a injury reconstructionist. 

  • whippetmom
    whippetmom Member Posts: 6,028
    edited February 2010

    Fog:  If these women in the UK would like to come to bc.org and join this thread, I think that would be fabulous for them.  You know, I have women in the UK and now one in Australia contacting me about breast reconstruction issues and they all say that there is absolutely nothing for them like bc.org in their respective countries.  I do not know if it is the level of communication we have going on here - our fervor for research and wanting every shred of information we can find regarding PMPS.  For some reason, it is not that easy for women in other countries to find bc.org.  I think it would be wonderful for you to invite them to share this thread with us. 

    I think that you should be very much involved with this thread - one of the "moderator" of sorts -  and perhaps it would be a springboard for you to start a website down the road.  But it would be nice to extend the invitation to these other women hungry for information on PMPS.

    Deborah

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Deborah - thanks so much for your generous and inclusive attitude. I sent a link to this thread to Dr. Bruce in the UK and she will pass it on to women who contact her for information.  I agree that the women on this board are not only compassionate but incredibly smart and dedicated. We can share this community with women who don't have a resource like this closer to home.

    I will stay involved with this thread. Based on my experiences during the past month, I think PMPS will soon be more widley recognized and treated (and then hopefully prevented). 

    TuffyBuffy - welcome and sorry you are suffering from PMPS. You're right - we have to advocate for ourselves. And we will!

    Good night all. Sweet dreams. With love, Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Golf can u be more spacific on your doctor.  Is injury reconstruction a type of doctor??  Is he in Savannah?  I really do not want more surgery, but my quality of life is getting worse.  I just want to stay home with this pain, but really have more fish to fry.

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

      Ok, I just emailed my breast surgeon for some suggestions on this problem..  I had to calm down a little before I could do this,  I can't wait to see what she says considering the fact she has poo pooed me about it for 2 years

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hipp - I just wanted to tell you how brave I think you are...to pursue help when you're in pain and all you want to do is curl up in a ball. This takes incredible strength - mental and physical. You have someone rooting for you up here in your old stomping grounds.

    Please keep us posted on how your surgeon responds.You may be the woman who wakes her up and changes everything for women coming along behind you. My PS paid no attention to my pain for 18 months and now he really "sees me". Do you remember that line from the Joy Luck Club   (I think the movie Avatar stole it from Amy Tan!) I felt invisible all this time and now my PS sees me. Don't give up until you find someone who sees your pain. With Love, Fog

  • Elin
    Elin Member Posts: 1
    edited February 2010

    Hi, Fogandroses.

    [This may be a bit long. And apologies if it runs twice. I have a Dell computer, afterl all...)] 

    Your posts have been really helpful to me. I had a partial right mastectomy for Stage 0 DCIS last June 2nd. I had clean margins and there was no need for any node examination. My surgeon was wonderful before and after---but did not tell me about possible complications. I developed a seroma and had several post-op visits to check on it. He didn't go into much detail, just said it was a "possible fluid buildup" and he believed it would resolve. Here's what happened instead:

    Eighteen days post-op, I was sitting outdoors at my granddaughter's high school graduation party, not drinking enough fluid, and with ice packs on this hard lump in the middle of my scar. That night, I had a fever and was extremely uncomfortable so I went to the emergency room. The ER doc there gently poked my breast several times over the course of four hours to see if it would do something or not (it didn't) and sent me home on antibiotics (I had hydrated while I waited to see him and my fever was gone) and with a tentative dx of cellulitis and a recommendation to see my surgeon Monday morning.

    The following afternoon---nineteen days post-op---I was resting at home. I'd just made a piece of toast in the kitchen when the doorbell rang. It was the Brazilian bread man, who came every week with homemade bread. I bought a loaf, saw him to his car and was back in the kitchen mere seconds later, butter knife in hand for my toast, when the seroma exploded and I was drenched from breast to foot in warm, rust-colored sticky fluid. (BTW, did you know it doesn't stain clothing?? Oh, such joy!)

    I was unprepared and completely unnerved. The on-call surgeon said, "I'll bet you're a lot more comfortable now," and I said yes. That calmed me down. He advised me to see my own surgeon the following day, then told me to stand in a hot shower and let the wound drain, and apply bandages as needed. He said standing in a hot shower would encourage drainage, and it appears he was right. It drained like crazy.

    When I saw my own doctor the next day, now almost three weeks post-op, he drained still more fluid and apologetically said he'd never seen a seroma let go more than ten days after surgery. He drained it three more times over the next week or so. Then nineteen days after it let go in the kitchen, the wound closed. I began radiation about a month later. That ended September 28th.

    In December, six months after my surgery, I was getting ready for bed one night and noticed that my scar felt "different." I looked down and lo and behold, a thick white-ish fluid was draining from a new hole near the old seroma. Since I'm dying childless, I was quite surprised to see what I concluded was clotted breast milk coming from the side of my breast!

    I saw my surgeon the next morning. There was nothing to drain and he didn't think it would happen again---but if it does, I'm to contact him immediately. I've gotten to know that lovely man better than I ever thought I would!...

    All of that brings me to this: in the last three weeks or so, I've noticed a new discomfort. My breast suddenly feels different to the touch. It lumpy around the seroma (of course it always was lumpy around the seroma!), but now there seems to be a long "ridge" effect a little below the scar, running toward mid-chest. I thought it might be a previously-unnoticable edge from where tissue was removed, but I don't know. And, the area in the upper chest wall and going toward the armpit is tight and sore. Reaching for anything is uncomfortable---so instinctively, I've begun reaching as much as possible to stretch it. That seems to help.

    I was considering calling my PCP and the surgeon again to see if the pain and bumpiness are normal (since we're all so different, is there a normal now?)---but I thought instead to check this site and see if anyone else had encountered this business. And I found all of you!

    Later on today I'll read more of these posts. I seem to remember from the dim recesses of my mind hearing decades ago about women who routinely had physical therapy following mastectomies. Why isn't that routinely mentioned in pre-op visits.

    I agree that we'd all be a whole lot better off if we were told about possible complications (PMPS, cording, seromas, etc.) before surgery. If we're strong enough to bear children, we're strong enough to cope with possibilities. I've already suggested that to my surgeon.

    This site is wonderfully helpful, and I'm very grateful I found it.

    Thank you all,

    E

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Hello Elin, welcome to our thread.  Very nice post for your first one lol. 

      I, of course, had a seroma.  I could go on and on about my seroma.  I have done my rant many time so I will spare u from most of it.  It all started with the sloshing noise...........so when it got really uncomfortable I called my bs and she said come on in and we will look at it. Of course she would not be availabe to see me so I saw an intern.  He drained it and said I will be fine.  Well I was not fine.  I woke up every morning soaked. My scar had 2 holes in it.  I did not want to go back to get another draining cuz I live 11/2 hours from the hospital, so I drained it myself by squeezing the glop into the sink.  I could be a doctor.  I did go back to the doctors office 2 more times, seeing only nurses cuz my bs was toooooo buisy.  It finally healed after 6  weeks. 

      I was never told anything would happen to me after surgery.  Had I known I might have been able to prevent all the anguish.  This is one of the reasons we need handouts post surgery that spells out everything that could happen to us.

      I would go back to your breast surgeon, Elin, and show her your concerns..And request to see the surgeon, it was her work that she needs to see.  Good luck, Hipp

      by the way, my fluid did stain.  It ruined my sheets and clothes.  Also I go to the chat room every nite.  There are many well informed women in there who might have insight to your problem.. Please join us.

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hi Elin and welcome! I'm so sorry - you have NOT had an easy time of it. I can imagine what a roller coaster ride these past months have been for you. I remember as things changed it seemed like every day there was a new worry.Your lumps and bumps might have been there all along, hidden by the swelling.But best to see your doctor for peace of mind.

    At Brigham and Women's Hospital there is a pre-op teaching meeting. I'm working with my PS to include some things that would have been helpful (that's an understatement) to know before surgery. So far the list includes: PMPS (would have been hugely helpful for me), cording, lymphedema, Physical Therapy...and thanks to your post I'm adding seromas.

    Keep us posted and come back with any thoughts you have for pre-op education. with love, fog

    and by the way, I'm jealous you have a bread man coming to your door every week!!!

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    The more I think about this the more it bothers me so I'm going to vent to you all.

    I've been thinking about the many studies I've read about PMPS. They conclude by naming risk factors for PMPS like thin vs. overweight, old vs. young, intense post-op pain vs mild post-op pain....Now this seems strange to me...because all of that focuses on the patient and not at all on external factors. WHAT ABOUT THE SURGEON? and the surgeon's SKILL or TECHNIQUE?

    The studies are asking - What is it about certain women that causes them to have PMPS???? Well, since 47% of breast surgery patients are left with chronic pain/nerve damage the answer to that question might turn out to be that "We had mastectomy surgery!!!!!!!"

    Thanks for letting me get that out there. with love, fog

  • Deeds
    Deeds Member Posts: 43
    edited February 2010

    I agree with you, Fog.  I didn't fit the profile (which is: overweight and young), as well as many others who've admitted their ageWink  So I think you're right. The data is slightly skewed in that department. But follow through with where you're going; if there is surgeon "error" involved, then that opens up a can of litigation worms.  Perhaps it's a little of both, and as with other chronic pain syndromes, it seems to be one giant question mark. I think you're doing a super job pushing for reform in educating the doctors;  if I start thinking too much about who's to blame with this PMPS, I'll get an ulcer.  And boy howdy, that's all I need.

    Bless you, bless you for your compassionate spirit!

    Fondly, Deeds

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    Thanks to every person who takes the time to post here.  I think my pain was taken care of with my surgery, but I spent three years in pain.  I don't think it is so much surgeon error as it is surgeon not giving a s****.  Every Dr. I talked too just moved on with a statment to the effect that they felt like it would resolve itself in a year or two.  Well, if I could I would gladly have given this temporary pain to them for a year or two or three. 

     Girls, do not give up.  I can't tell you how much better I feel!

     Bettye 

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited February 2010

    Hi BettyE,Deeds,Fogandroses,Elin,hipchik47and many others,

    I read many of your posts and found them very useful.  I have read up on PMPS as well. I found studies, but nothing that there seems to be any action taken from them, or the studies are old.

    I can't believe that more hasn't been done, for all the money that is given to breast cancer research.

    I saw my pain specialist today though and asked him if there was anybody around our area that does the surgery on a neuroma or on the intercostalbrachial nerve injury.  He actually said he may be able to help me.  He said I would see an anesthesiologist first and try a nerve block to see if it would help, and then talk about doing the surgery on the neuroma and nerves.  ThanksBetteE for helping me. A doctor 2 years ago did't even wan't to help with anything.i am finally so excited to meet the person that can help me.