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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • Kate33
    Kate33 Member Posts: 1,936
    edited April 2012

    cinnamonsmiles- I was telling my LE therapist about how so many on here don't seem to have access to anyone in their area.  Her only suggestion was to call the one that's closest to you and ask if they know of someone nearer to your home.  Sometimes there are qualified therapists that just aren't listed.  She said she gets calls all the time and has started a list so she knows who to suggest in our area.  Maybe the one that is 3 hours away can do the same.  Good luck.  I hope you can find someone.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited April 2012

    I saw one OT that deals with breast cancer issues. She was the one that failed to listen to me as I complained about feeling swollen, especially in hot and humid weather. Obviously, she didn't listen to me because on our last session of my pmps, it was like a light bulb went on in her head and she did one manual massage on me then sent me on my way. She had been taking measurements of my arms the entire summer and when she looked at at that last appt. she said I may have a very mild case. Sigh...I just can't win in this. 

    I imagine if I had had a more severe case it would have been easier for her to diagnose.

    I don't mean to be rude, but this thread is acutually for PMPS, no LE. LE has it it's own forum, where information is easy to find. So I will not post anymore about LE in this thread.

    It is hard enough to find information within this PMPS thread since bc.org will not make a special forum for it.

    I don't mind if people come here and discover that they may have LE. But if it is LE issues, it should then transfer over to the LE board for those issues.

    This thread is becoming so cluttered that it is becoming harder to find and search for information on PMPS.

  • MamaTaz
    MamaTaz Member Posts: 6
    edited April 2012

    Has anyone found SOMETHING to stop neuropathy skin symptoms? Allodynia: Severe sunburn-like, painful needles & pins skin sensations all around the area of previous breast tissue?  VERY tight skin compression by wearing forms helps some days, after weeks of acupuncture; some days unbearable to wear forms.  A cold breeze, very soft cotton or silk t-shirts feel like rough sandpaper & immediately set off painful sensations.  Can aanyone help?

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited May 2012

    I am not sure how far out  you are from treatment or if this is from chemo or node dissection? Could  you give us a little information on what treatments you have had and if you had mastectomies and/or reconstruction, chemo or rads?

    Thanks

  • elmendorf
    elmendorf Member Posts: 1
    edited May 2012

    After having my double mastectomy in 2010 with silicone implant reconstruction and living with constant pain ever since, I have just decided to have the implants removed (difficult decision for me) and the meeting with the surgeon yesterday was the FIRST TIME any doctor out of 4 (primary care, mastectomy surgeon, and two plastic surgeons) even mentioned the term  Post Mastectomy Pain Syndrome.  He only mentioned it to tell me that he would remove them but the pain may continue and then he described the Syndrome. 

    I feel as though I was totally unprepared for the possibility of the negatives that could happen with breast surgery.  My impression when I was diagnosed with breast cancer was that I was immediately on a high speed bullet train and the decisions were coming at me fast and furious; most decisions heavily "weighted" towards an answer the doctors wanted me to give.  If I had it to do over again I would never have had a mastectomy; I would have had a sentinel node biopsy to see if the cancer had gone into the lymph nodes (it hadn't), then had another magnification mammogram to see if any cancer remained after my biopsy (it didn't) and I would have kept  my breasts.  Especially since two months later I was diagnosed with lymphoma in my bone marrow, it's kind of a moot point that breast cancer "may" come back in 15 years.

  • MamaTaz
    MamaTaz Member Posts: 6
    edited May 2012

    DCIS, 2 spots, 2009 with lumpectomy.  Chose no radiation as area was right over my heart.  Only have 1 heart.  DCIS diagnosed again 2010, more widespread.  Had bilateral mastectomy with sentinnel node removal (neg), chose no reconstruction.  Did not have rad nor chemo.  About 1 month post-op HORRID allodynia.  Wore Ace bandages almost nonstop for 6 months, progressed to Spanx, then forms.  Have tried soft forms, crocheted forms, foam, reg silicone, fianlly have pair of ltwt silicone.  Some women collect shoes, I seem to collect breasts.  I can wear the forms with mild discomfort after 6 acupuncture sessions.  Still cannot stand plain cotton or silk shirts on my bare skin.  Weird.  Lyrica gave me a drug-high so I don't use it.

      

  • moderators
    moderators Posts: 8,739
    edited May 2012

    Forum for PMPS?! Hi All!  There have been requests to make this it's own forum. We are debating this, as we constantly get complaints that we have too many forums. Can you suggest other ways (besides pinning) that you think would be helpful, other than a new forum. We are really wanting to help, just reluctant to build more forums...

    Thanks for your input!!! 

    Your Mods 

  • moderators
    moderators Posts: 8,739
    edited May 2012

    Moved to new forum on pain! Hope this helps.

  • minustwo
    minustwo Member Posts: 13,389
    edited May 2012

    OK - so what's the link to the new forum?  I'm not good enough with this new format to find anything new.

  • binney4
    binney4 Member Posts: 1,466
    edited May 2012

    MinusTwo, you can go to the top of this page where it says:

    All topic (arrow) Pain (arrow) Post Mastectomy Pain Syndrome

    and click on the single word Pain and it'll take you to the new forum. Or go to All Topics on the top left of this page, then scroll down -- it's the forum just below Lymphedema. Or put this into your browser:

    http://community.breastcancer.org/forum/136

    Thanks, Mods. A forum just called "Pain" may prove to be a bit unwieldy, as so many things about bc cause pain of all sorts, but it should be interesting to see what surfaces there.
    Binney

  • minustwo
    minustwo Member Posts: 13,389
    edited May 2012

    Thanks Binney & Mods.

  • Sonata
    Sonata Member Posts: 78
    edited May 2012
    How many of you have gotten the 'brush off' by your doctors?
    My own personal experience has been this: I had a bilateral mastectomy with axillary node dissection on both sides back in November 2011. I have not had one day without pain since! I've seen my BS, Onc, a Pain Management Dr....all of whom have seemingly brushed my concerns off. I think its because they just really don't know enough about it, although it seems to have been a 'side effect' of breast surgery for decades.
    I'm SO tired of being in pain on a daily basis. Because of being brushed off, I have inadequate pain management. To make matters worse, I also have cording and some minor lymphedema in my arms.
  • Estel
    Estel Member Posts: 2,780
    edited May 2012

    SouthernSoprano - Have you seen a LE therapist for your lymphedema?  A lot of my pain was related to the lymphedema ... not all of it, but a good part of it.  Have you checked out the step-up speak-out website?  There is a lot of helpful information on there from ladies who suffer from it.  

     For some reason, my computer isn't allowing me to paste.  

    The website is:

    www.stepup-speakout.org

    Most of us, I'm afraid, have had the brush-off from our docs.  Undecided  You're not crazy. 

  • Estel
    Estel Member Posts: 2,780
    edited May 2012

    SouthernSoprano- here are those links:



    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm



    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm







  • velutha
    velutha Member Posts: 5
    edited May 2012

    As promised:  Went to see my PS this week, and yes, they are doing microsurgery on lymphatics.  If your pain is due in part to lymphedema, in addition to seeing a lymphedema specialist, you can consider looking for a PS who does a lot of microvascular surgery (ie DIEP) who is working on lymphatics.  It's a very new and experimental procedure, so the results are NOT proven - there just isn't any long term data, and not a lot of women have had the procedure. 

    Basically they take lymphatics from somewhere else on your body and transplant them to the problem area. 

    The thinking is that earlier is better, but even someone who has had lymphedema for years could benefit.

  • 1boob
    1boob Member Posts: 11
    edited May 2012

    I had a modified radical mastectomy about 7 months ago. At first I had phantom pain in the non existent breast - this is now infrequent, thank goodness. What I have is some kind of neuropathic soreness  on the site - worst at the dog end, ie close to the other boob, but also sore in the armpit. In general it feels as if somebody took a hot plate and slammed it on my mastectomy site.

    All bras hurt. I have tried a wide variety and by the end of about 2 hours they all hurt. All prostheses hurt - especially the soft ones. The silicone ones hurt least but are so heavy that I have to wear a fierce bra to keep it up - and then the bra hurts.

    All in all, I often go around single breasted. Nobody acknowledges this has happened to me so I was relieved to see that post mastectomy pain is quite common. I can live with it but I wish somebody would produce a sensible prosthesis.

  • binney4
    binney4 Member Posts: 1,466
    edited May 2012

    1Boob, have you checked out the board here called "Living Without Reconstruction After a Mastectomy"? That would be a great place to ask about light-weight prostheses, as there are many kinds. Also check out BreastFree.org for lots of product reviews and other ideas for living with no recon. The site was developed by one of the women here, and she's always available to answer questions about bras, prostheses, swimwear, or anything else having to do with managing "breast free."

    Hope you find what you need to be comfortable again! Be well,
    Binney

  • dawnnadine
    dawnnadine Member Posts: 2
    edited June 2012

    Thank you for your post.  After spending 6 months trying:

    acupuncture for about 3 months with 1-2 sessions weekly,myofascial release massage treatment with 1-2 sessions weekly,cupping

    gabapentin, lidoderm patches, tramadol,TENS (electrical charges),heat packs.compression packs and ice

    I found that the myofascial release massage and wearing a www.yogitoes.com rStrapStretch band works well to keep my pain and pressure in control.  When the pain is especiallly intense I put an ice pack under my chest band. 

    While I have found the professionals I have gone to ,to be for the most part kind and attentive, I feel like I am doing the teaching ~ hence I spent the better part of today sending a similiar letter to all of the professionals that I have seen since my bi-lateral mastectomy-no re-construction in January 2012. 

    This board along with the Post Breast Therapy Pain Syndrome facebook page (closed page that you need to join to view) and in the early stages www.cancervacation.com have been my saving grace on my (ex) breast cancer journey.  I recently met Dr. Weiss at the Wanderlust Festival in Stratton Vermont and felt like I met a life-long friend.   Thank goodness for kind professionals who really care about those that they treat! 

  • moderators
    moderators Posts: 8,739
    edited June 2012

    Great to hear Dawnnadine! We are passing this along. Everyone really enjoyed meeting you at Wanderlust!!

  • kriserts
    kriserts Member Posts: 61
    edited July 2012

    I just found this info, which I thought was interesting:

    "Scar tissue can develop and tighten in the incision area after breast cancer surgery, and the area might become hypersensitive. This hypersensitivity frequently occurs at the incision and drain site, and can make wearing a bra or clothing painful.

    ASTYM treatment is a non-invasive soft tissue therapy using handheld tools to apply force to the tissue. The therapy "remodels" the tissue and provides a desensitizing effect. ASTYM treatment also may be used on other soft-tissue problems, such as shoulder tendonitis and elbow epicondylitis. Recognizing signs of pain and hypersensitivity and contacting an ASTYM- certified provider are important to help decrease long-term symptoms."

     http://www.kentucky.com/2012/07/02/2245603/scar-tissue-swelling-problems.html

     it's the first time I hear scar pain described that way. 

  • makingway
    makingway Member Posts: 465
    edited July 2012

    I can't even fathom this... Water hitting my skin just from a shower nozzle causes me pain...

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited August 2012

    I have been exactly wear you are makingway. I also had a hard time washing my chest, underarms, back of arms. Putting on deodorant was horrid!! I had to find a roll-on deodorant with the right sized head and I couldn't start with a dry ball. Sometimes I even have to start the roll-on on my leg then I can do the underarms.Burning my arms when air conditioning blows on them in the car, etc etc.

    Are you on any meds for pain? There are some meds out there that work for nerve damage pain but you could have some side effects (like any medicines that could have se 's). 

    I do know that when I had lots of scar tissued adehsions across the whole chest, into the armpits, and down the sides of my chest. I had occupational therapy to release them. It took months, but I could feel the progress.

    Have you talked to your dr.'s about your pain? I had to write down all the different types of pain I had for my surgeon to "get it" that somethign was really wrong and I was VERY specific. 

  • makingway
    makingway Member Posts: 465
    edited August 2012

    I don't want to take neurontin for the pain. I don't trust doctors any more after all I've experienced.I only take 600 mg ibuprofen when I just can't stand it any longer.

    My surgeon acted as if I was the only patient she'd ever had with this pain. I have a friend who also had the same surgeon, and also had the pain, so, I know the surgeon is lying. It angers me that my surgeon, along with the rest of the medical community, discounts this pain and suggests it is due to favoring the sugery site rather than admitting it is due to nerve damage they caused during the surgery. I've read time and time again that doctors suggest the pain is caused by scar tissue. Personally, I think that's just a reason they give us to get us off their backs-to give us hope that someday we can have possibile relief. I too had physical therapy. I got little relief. In fact I felt it exacerbated the pain. I was in physical therapy for 6-8 weeks twice a week. I did this twice because I was still in pain and the surgeon suggested it. So, I had between 12-16 weeks of physical therapy. It's been 3 years and I still have the pain...I believe my pain is due to both nerve damage caused by the axillary lymphnode dissection and also the loss of tissue in my armpit. Afterall, they don't pluck the lymphnodes out like grapes-they take all the tissue they're imbedded in. That's why the armpit looks hollowed. I have read that fat grafting can help. I hope that someday I can afford this procedure. 

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited August 2012

    I am sorry that you are so lost within doctors that won't listen and treat you. I had OT mainly for the scar tissue adhesions. The rest of my pain, that I am left with is also from the nerve damage from the lymph node removal. I only had a few sentinel nodes removed from both sides and an additional 1 axilarry node on the right. I recently starting getting PT for lymphedema and think part of my pain comes from LE flare ups as well. It took me three doctors before I got a referral to the pain clinic.  My breast surgeon warned me before the surgery of the possible of nerve damage, she just didn't tell me what the symptoms were so I was thinking the amount of pain I was in immediately following surgery was normal. It wasn't until I started reading breast cancer discussion boards, that I realized the amount of pain I had was not normal.

    When I first stated OT in the summer of 2011, I realized that some of the strengthening exericises they had me do, were causing me setbacks in pain. I discussed this with my pain dr. and both of us told the therapists that I needed to back off. The pain dr. said that if I was fine with the amount of strength I had, then why do more that exaggerates the pain? I think nerve damage pain, at least what I have been through with the BMX and node dissection, is different than the pain, say from a broken bone. Strength training is needed and the pain is totally different than nerve damage ( I know cuz i busted my ankle).I don't think all PT and OT therapists are trained and/or understand this.

    I am so sorry you are getting such bad treatment from your surgeon. I totally understand that as I have had lots of doctors that were totally off the mark with me. 

  • MamaTaz
    MamaTaz Member Posts: 6
    edited September 2012

    I have been using a natural supplement used in Spain & Italy, other European countires & made in the Netherlands:  Normast.  PEA, Palmitoylethanolamide, is an anti-inflammatory, anti-pain naturally occuring amino acid used specifically for neuropathic/chronic pain in Europe for diabetic neuropathy, sciatic pain, shingles, chronic pain, etc.  Research in Europe is a bit more focused on the cause of disease rather than a drug to mask the symptoms as is done in the US.  One of the original researchers for this is an Italian physician, Rital Levi-Montalcini, who won 2 Nobel prizes for her work on nerve regeneration.   US medical publications mention PEA but you have to know what it is in order to research it.

    I used Normast for an initial 60 days.  It did not completely take away the allodynia I am having but helped IMMENSELY in decreasing the painful needles & pins, severe sunburn sensations I have.  After the 60 days I stopped it to see what would happen.  Within 2 wks all my allodynia returned so I placed another order and the Normast "kicked in" within 4 days.   

     I do not get a kick-back nor a commission for mentioning this product.  There is no monetary gain or discount for me.  It is marketed as a supplement in the Netherlands and will pass customs.  My insurance will not pay for this but I am willing to pay myself in order to get relief; the price is in Euro dollars.  I can't stand Lyrica or narcotics.  They make my brain foggy like I am a complete drunken sop AND they really do nothing to decrease the painful sensations.  The Normast has not caused any side effects that I can see and all my blood work is completely normal.   My oncologist, surgeon and family physician are supporting me in this and they are following me to see what it does to me and for me.

    If you want to read more about it Google the long name of PEA or Normast and read articles for yourselves.  PubMed, a US medical site, does have info on this; also Wikipedia.  This site would not allow me to post weblinks.

      Google:    Rita Levi-Montalcini.  Rita is an Italian neurophysician, working on nerve-growth factor, twice awarded Nobel Laureate who first started research on nerve damage. 

    If you have questions, you can send me a Private Message (upper left hand corner of this page under Topics). 

  • PinkHeart
    PinkHeart Member Posts: 271
    edited October 2012

    Botty~   I just posted a reply to you on the Implant thread. :)

    I also had much PMPS after my BMX, ALND, immediate reconstruction with direct implant surgery.  Spent 50 sessions with PT therapy following surgery, and took pain meds (oxycodone and valium) for months.

    And, yes, I also had a major hematoma (550cc) which was removed surgically 6 days post surgery!  The hematoma was actually on my non-cancer left breast. 

  • lawana_m
    lawana_m Member Posts: 13
    edited October 2012

    Hey ladies, sorry if this has been answered in this board already, but i tried to browse through but its obviously not an uncommon topic. About 2 months after BMX i developed pain in moth arms. Mostly upper arms but now in forearms. Its a burning pain but sometimes sharp. At the time, i had my expanders in. My PS said it sounded like brachial nerve pain and would probably go away with implants. Implants placed almost 2 weeks ago and pain still here if not worse. Has anyone experienced this? Does it sound like PMPS? What to do?

  • Lburwell
    Lburwell Member Posts: 2
    edited November 2012

    I am going through the same exact thing, I thought I was the only one as everyone I speak with says they never here of pain after the surgeries were done. I went through 15 surgeries in 3 years from infections and things that my body just rejected. I had a breast actually pop due to massive fluid build up. The docs look at me like I am crazy because it should be numb. I feel it all! it has been over a year since my last surgery. I am on Pain meds that my family doctor gives me and I have a feeling that I will be on them the rest of my life. I can walk my dogs as they are well trained but I can not run or lift or even vacuum for any amount of time and this is with the meds I could not imagine my life with out them and I have never used drugs before. I wake up at night due to pain that is just as you describe. My husband is even worn down from my lack of ability to do things that I used to enjoy. If it wasn't for my dog I may have never gotten out of my bed she has truly saved my life as my walk to the park and the amount of training she has needed has given me some pleasure even if sometime it just hurts so much that I don't want to go (she needs it so I go). As for a bra I have tried everything after the recon surgery they pulled the back muscles to the front and the pain is full circle from back to front, so the bra is a huge issue the only one I have been able to tolerate is the geni bra (thank god they are cheap and the sell them at Walmart). I tried all the bra's available for a Mastectomy and in one minute I am ripping them off because they hurt so much. I think the Genie Bra kind of feels like a ace band-aid and it not as tight around the back. I so badly want to show my dogs and when I got them I never dreamed that the small amount of trotting around the ring would send me to bed with a hot pad and meds. As the doctor said in one of the article's we will just have to learn to live with it, well I have adjusted to the fact that this is true but I am sad that my new life after the Cancer has to be so painful. I feel lucky I am alive and I know many who read this would think just that but I do miss my hobbies such as gardening and shopping in real stores verses Internet shopping. I loved window shopping. I guess this is enough of my whining but I am grateful to see people speak up about this as I felt so alone. 

  • Lburwell
    Lburwell Member Posts: 2
    edited November 2012

    I am going through the same exact thing, I thought I was the only one as everyone I speak with says they never here of pain after the surgeries were done. I went through 15 surgeries in 3 years from infections and things that my body just rejected. I had a breast actually pop due to massive fluid build up. The docs look at me like I am crazy because it should be numb. I feel it all! it has been over a year since my last surgery. I am on Pain meds that my family doctor gives me and I have a feeling that I will be on them the rest of my life. I can walk my dogs as they are well trained but I can not run or lift or even vacuum for any amount of time and this is with the meds I could not imagine my life with out them and I have never used drugs before. I wake up at night due to pain that is just as you describe. My husband is even worn down from my lack of ability to do things that I used to enjoy. If it wasn't for my dog I may have never gotten out of my bed she has truly saved my life as my walk to the park and the amount of training she has needed has given me some pleasure even if sometime it just hurts so much that I don't want to go (she needs it so I go). As for a bra I have tried everything after the recon surgery they pulled the back muscles to the front and the pain is full circle from back to front, so the bra is a huge issue the only one I have been able to tolerate is the geni bra (thank god they are cheap and the sell them at Walmart). I tried all the bra's available for a Mastectomy and in one minute I am ripping them off because they hurt so much. I think the Genie Bra kind of feels like a ace band-aid and it not as tight around the back. I so badly want to show my dogs and when I got them I never dreamed that the small amount of trotting around the ring would send me to bed with a hot pad and meds. I also have stiches comming out that are making there way to the top of my skin and pulling the muscles one made it through the skin and it had a big not on the end of it that I had my husband pull out some and cut it god only know what happened to the rest of it. As the doctor said in one of the article's we will just have to learn to live with it, well I have adjusted to the fact that this is true but I am sad that my new life after the Cancer has to be so painful. I feel lucky I am alive and I know many who read this would think just that but I do miss my hobbies such as gardening and shopping in real stores verses Internet shopping. I loved window shopping. I guess this is enough of my whining but I am grateful to see people speak up about this as I felt so alone.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited November 2012

    Lburwell~

    I'm a huge fan of the Genie bra, too. 

    Do you still have your implants?  Have you considered having them removed, or removed and new breast created with natural breast reconstruction (with your own tissue with a free flap?) 

    Every patient is different, but I suffered terribly from implant and radiation problems.  One implant extruded from my chest so it was automatically surgically removed.  There was too much damage to put another implant back in and I didn't want the evil things anyway. 

    I then traveled out of state to a top microsurgeon to have natural breast reconstruction (bilateral SGAP), which uses your own tissue as a "free flap" meaning NOT using/destroying muscle such as in a Latis flap or TRAM.

    I had major relief of pain.  The surgeon repaired a lot of the damage in chest wall, pec damage, rads damage, and removed huge chunks of scar tissue.  After about 2-3 hours of repair work the two surgeons moved on to my new breast reconstruction part of surgery.  So total surgery hours came to about 12 hours.  That was just for Stage 1 of surgery.

    I still have some pec muscle pain in upper right side that I am still working on with a PT.  But at least I am not eating pain meds anymore. 

    There's no guarantees, but it might be worth looking into if you wish.

    I'm sorry that this has been such a nightmare for you, and hope that somehow it can be resolved for you.

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