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Post Mastectomy Pain Syndrome (PMPS)

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  • 9redheadaz
    9redheadaz Member Posts: 5
    edited July 2017
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    magiclight thank you much. I need to find a different way to wrap myself as I still have my C breast on the right. It gets in the way and the ace rolls up. However I did have a few hours of it working doing kitchen cleaning after lugging in groceries. Today I pay. The weirdest thing happened about 30 minutes ago. I mention how it feels like my skin is pulling away when bending. I bent over and felt that happen almost up to my collarbone, then the little guy with the grill brush started stabbing me where he usually does and way up to my collarbone. This was a first. I'm not sure what kind of physician to see about this.I had a terrible time breathing because of the pain. It's hard for me to post things like this, I feel like I'm complaining. But I know sharing such things is important. Like you I have a dislike of taking meds, I take tramadol and levoxin for pain, and a few other required meds. I have a hard time taking gabepentin because I had a bad experience with it when my at that time idiot oncologist prescribed it to offset the affects of the third oral estrogen blocking drug. But lets try, both of us to get past that resistance.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    9redheaded...the name of the brand of binder that I use is Breast binder with dri release that I purchase online. I have several and use them almost daily. There are MD pain specialists and one I saw in Phoenix, even though I did not get relief that does not mean that everyone has the same experience. If you want to PM me, I'll give you her name.

  • klgnyc
    klgnyc Member Posts: 26
    edited July 2017
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    Barbara, I feel like I'm living your life. BMX with TE two years ago in March and I hated the expanders. Took all sorts of muscle relaxants and even wore a Butrans patch for months, but those only took the edge off. Everyone told me the implants would be better, but they're not at all. Yes, I had radiation, but the iron bra feeling is completely uniform across both breasts...one poster said it was as if someone had wrapped duct table around her as tight as possible and that's a pretty good description. I liken it to someone squeezing my breasts super hard every minute of every day. I used to wear inexpensive bras without underwires, but as the pain continues I can't even wear those and typically go braless or wear a tank top under shirts.

    My PS had no ideas and sent me to a physical rehab doc who prescribed  PT (my 4th therapist in 1.5 years), a topical lidocaine/gabapentin ointment, two rounds of botox injections, a nerve block, four weeks of acupuncture, and finally Lyrica. Nothing has worked except the Lyrica, but at 300 mg per day it makes me foggy, off balance and just loopy overall. If I took more, I'd be a mess, and I wound up discontinuing it. My head is more clear, but my chest hurts worse.

    I've found a surgeon who thinks a pre-pectoral reconstruction in which new implants are placed above the muscle would alleviate much of the pain, but it's a fairly new procedure and he's only done about 30. I've spoke to one of his patients who says he's changed her life, but she didn't have radiation and doesn't have my other surgical risk factors. I have a family member in medicine who thinks surgery should be the last option given my risk factors for a third surgery, especially in a radiated breast that may not heal well, but no doctor has suggested any other sort of new procedure or a medication that won't make me a zombie.

    Has anyone else had this version of reconstruction, or might you have other suggestions?

  • peyton3
    peyton3 Member Posts: 20
    edited July 2017
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    Hi Kignyc, I know where you are coming from. I had a double mastectomy followed by reconstruction on May 24, 2016. The tissue expanders was horrible and I complained constantly. My PS thought I was a wimp, but I usually have a high tolerance for pain and I am very strong willed so I just ignored him. When he was finished he put implants in that were way bigger than I wanted and I have been miserable ever since. I finally found a new PS that is going to remove these implants and put smaller ones in over the muscles instead of under. I think this will make a difference, since that seems to be what is happening with my implants, the muscles keep clamping down on these implants and I feel like I am being crushed. Several of the ladies on this site have had there implants removed and then placed over the muscle and had good results. Hope this helps.

  • nash
    nash Member Posts: 146
    edited July 2017
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    I'm contemplating moving my implant to pre-pectoral. I had direct-to-implant lat flap reconstruction on a previously radiated lumpectomy breast in 2015. I've felt like I'm in an iron corset ever since. After 2+ years of MFR, PT, acupuncture, cupping, MLD, TPIs, scar release, compounded topical creams, trips to a physiatrist, etc, I feel like the issues that stem from the back incision from the flap (spasms, etc) are probably the best they will get, and what I am left with is probably the pec clamping down on the implant. The flap doesn't help the situation either, since it's muscle.

    I'm sure some of my issues are nerve related, but I refuse to take Gabapentin. I tried it for a week and felt so loopy it was ridiculous. I tried Percocet, and that did nothing. Muscle relaxants were useless. However, I just had a colonoscopy done today and the IV Fentanyl actually helped quite a bit. But one can obviously not live one's life on IV Fentanyl.

    Anyhow, I'm hopeful that moving the implant might help. I've heard of women removing their implants and not getting any relief, so who knows. I guess it will be one of those things that is impossible to gauge until it's done.


  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited July 2017
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    Klgnyc and Nash, I encourage you to look into consulting with the doctors at the Center for Restorative Breast Surgery in NOLA. They only use body tissue to reconstruct breasts.They also only work with women who have the BRCA gene or cancer, so they specialize in this kind of surgery. Many women who have iron bra or difficulty with implants go to them.

    I heavily researched implants since I have a radiated breasts and realized they were going to be an issue for me. I found a discussion group here about NOLA and contacted the doctors for a free consult. Www.breastcenter.org

    I am 6 weeks out from SGAP reconstruction and bmx. I'm so glad I did this. I'm happy to give more information if you want. FYI, traveling for surgery was not as intimidating as it may seem.

  • nash
    nash Member Posts: 146
    edited July 2017
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    Thx for the info. I'm glad you had good results.

    I'm too thin for DIEP and I'm a competitive figure skater, so TUG and SGAP are out. That's how I ended up with a lat dorsi flap, and my body didn't take kindly to it.My only option really is moving the implant above the pec.

  • klgnyc
    klgnyc Member Posts: 26
    edited August 2017
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    Good to know I'm not the only one considering another surgery to fix this; thanks peyton3 and nash.

    I'm actually not really nervous about the surgery, but I'm surrounded by medical professionals telling me I'm making a mistake given my risk factors. I woke up this morning wondering how many more days of pain I'm willing to put up with as I continue to search for a non-surgical intervention. And I'm astounded at how many of us there are.

  • 9redheadaz
    9redheadaz Member Posts: 5
    edited August 2017
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    I've found that wrapping my left non-breast with an ace bandage is very comforting. I can breath and bend without pain. What I have here is about 4 inches wide, I need something wider and also that's not scratchy against my skin. I watched a video early today but dang it I was in incognito mode in Chrome and can't find it. It was a special wide wrap that was soft and non-irritating on one side. Anyone know the name or maker of such bandages? I don't want a mastectomy garment as I still have my right breast. I've googled forever. Marianne

  • Lumpie
    Lumpie Member Posts: 1,553
    edited August 2017
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    Hope you all don't mind an interloper here... I didn't have a Mastectomy, had Lumpectomy x2 and I have had chronic pain since the 2nd surgery. The surgeons totally dismiss it still. I am convinced that something happened in that second surgery but I am sure I will never find out what. The operative report was standard template. I asked the surgeon. She denied anything unusual. The incision dehised and I bled like crazy. The lump was very superficial but the patho report stated that there was chest wall in the specimen. I went to my second opinion doc to have her check it out and she told me not to come to her for a problem someone else created. (She was not covered by my insurance plan so it is not like I just chose not to go to her.) Not an altogether successful or happy experience. And it's a shame, because the first surgery went just perfectly. I don't have much hope that there is any sort of "repair" that will make it better. I have not run across anyone else who had such a bad experience with lumpectomy. Feels kinda lonely. If you have suggestions or know of anyone who has had a similar experience, kindly point me in the right direction. Thanks.

  • nash
    nash Member Posts: 146
    edited August 2017
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    Lumpie, here's a link to an old thread about lumpectomy pain. I haven't read through all of it, so I'm not sure if it will be helpful, but at least it's something to check out.

    https://community.breastcancer.org/forum/136/topic...

    I had a lumpectomy eight years prior to my mastectomy. I had nerve pain that manifested as a dull ache at the tumor bed site, and itching on my scapula. I didn't realize how much everything hurt until I got a nerve block right before the mastectomy, and all the pain went away.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited August 2017
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    Nash - sorry about ur pain but thank you so much for the link and for sharing your story.

  • Jackiebro
    Jackiebro Member Posts: 28
    edited September 2017
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    Hi....


    All this time I thought I had lymphadema with no swelling. My upper right arm and armpit are always bad. Feels tight, full, fat. Like a blood pressure cuff on high. I have numbness of the upper arm. I had a sentinel node biopsy... and I find now that my arm gets achy and fatigued. I get itchiness but not much. Achiness, tightness, to the point where I don't want to use my arm and hand.


    So frustrated.


    Jackie

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Jackie, I hear your frustration. Sadly, I think everyone with PMPS is frustrated with inability to find significant if any relief. I'm over 2 years post BLX and no relief. I'm drained of desire to do most all of my previous fun activities. Fortunately, I do make myself walk every day with my dog - or should I say he makes me. Cancer treatments sure do suck!

  • Jackiebro
    Jackiebro Member Posts: 28
    edited September 2017
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    That is how I feel. Drained from this arm issue, low motivation to be out and about, and it is now causing me to not want to be around others and be social. I like to just be at home. I'm not in a pity party... I just am more comfortable being home

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Jackie, I sure do understand the need to find comfort and your home seems like the place you find that. Although I rarely post on "The hermit club" site here, I do read the posts. You are not alone and finding that others share your feelings about being more comfortable at home, may be helpful.

    Have you talked with your doctor re: your arm numbness, etc or sought help from a lymphedema specialist to determine possible treatments?

  • OG56
    OG56 Member Posts: 377
    edited September 2017
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    Anne, even though medicinal marijuana has not been approved in Nebraska I have read up on it and there is a strain called Blackberry hash that is supposed to be awesome for muscle pain and nerve pain and also enhances your sleep thought I'd throw that out there to you. I personally have not tried it I was a nurse all of my life until recently so could not smoke pot but I think I would give it a shot if it was available :)

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    OG56 - I see that medical marijuana is not legal in Nebraska. Even if legal, the professional licensing regs and institutional drug testing poses serious problems for users even if for medical reasons in states where medical use is approved. Wish there were more options for pain relief.

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    hi magiclight

    I have talked to my surgeon... sadly she just wants to hear that I look great. So when I wear the sleeve, she asks “ why are u wearing that?” I don’t think u have lymphadema....

    I have been receiving OT since February. They are now saying nerve inflammation.

    I am trying A.R.T treatment on Monday. I hope it helps...

    My arm & hand just ache & throb. I’m right handed too :( Just typing this is hard.

    Thank you for being here for me

    Jackie



  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Jackie...dealing with cancer and surgery is never easy and now you found out that your PS is unsympathetic to your pain. I'm sorry you have had to deal with all of this since the beginning of this year. I have been on Gabapentin for well over a year for my nerve pain and some days are more tolerable than others. Do you find that your aching and throbbing fluctuate with activities other than typing and or with weather changes. Raining weather really exacerbates mine and luckily today is sunny and mild so much less discomfort. BTW what is A.R.T. therapy?

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    ART...Active Release Therapy...

    https://youtu.be/ivgScB0pcxA

    Anyway, Medicine was going to be my last resort. Do you feel the nerve meds help? Is it worthwhile? I will be contacting my doc next week to discuss options because this is exhausting to live in a constant ache, heaviness and fullness along with the numbness. I knew about the numbness being expected. All this other stuff is just... well u know Weather like humidity and heat definitely make me worse.

    Cardio and movement help. But I would say my arm throbbing is always between a 4-7 on a pain scale... :-/

    Jackie

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Jackie - living with a 4-7 on the pain scale is, as you say, exhausting. I've found that Gabapentin/Neurontin does help and it is less expensive and with many fewer side effects for me that Lyrica. I take my biggest dose (600mg) at night and thus usually able to get a good nights sleep, which really helps. Let me know what you learn from your doc next week. My surgeon was minimally helpful, but my PC doc prescribed the Gabapentin. I think surgeons are done shortly after the wound heals and it looks 'good.' Hoping you get some relief.

  • minustwo
    minustwo Member Posts: 13,154
    edited October 2017
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    Jackie - I don't believe Gabapentin will help with LE, and that's what your heavy, achy, throbbing arm sounds like. Have you learned to do MLD yet? Several times a day. Is your OT - LE certified? Have you discussed wrapping and a pump and etc? If the LE treatment is being done correctly and you are being careful about your exercise, you should have some relief by now.

    I have neuropathy in my feet that occasionally moves up my calves. Also sometimes in my fingers. My feet are basically dead & feel like big blocks of ice. But fortunately I don't have the debilitating pain so I don't take meds. I also have breast & truncal LE - but that is a totally different issue. I agree about docs not understanding LE. My BS and my PS were resistant to the idea of LE. Oh "that rarely happens". Urgh. We know it does. http://stepup-speakout.org/

    I looked at your ART thread. Looks like good stretching, but not related to moving the lymph fluid. If you have had radiation, I was advised that you must continually stretch the muscles every day. Apparently radiation causes them to contract like a rubber band for ever.

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    hi Minus 2...

    No rad or chemo for me. Sentinel node biopsy with 3 nodes removed and tested. So I am not your typical risk factor for LE.

    The BS says she doesn’t think I have LE, the OT’s (2 diff ones ) don’t think I have LE, and yes I made sure the last OT WAS Lana certified.

    I’m so frustrated because the achiness, tightness, throbbing, fullness is real. Today it is a 6 pain level. I did spin class, stretched, fist pumped, nerve flossed, deep breathing too.

    I wish someone would just diagnose me. :( I run marathons... I endure pain! This is exhausting. :(

    Jacki

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    P.S. MY OT thinks it is nerve irritation.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Moderators -I was going to refer Jackie...to the links at the start of this thread, but most are not functional and even then are 8 years old and need updating. The only useful one had this personal post: it reads as follows.

    I am so glad to read these posts. Every one of them describes my experience. I had a double mastectomy with reconstruction in 2011 and did not know what to expect. Knowing what I know now I WOULD NEVER HAVE HAD IT! My cancer was trivial (in one breast) and non-existent in the other (but they didn't tell me that at the time. I complained of TERRIBLE pain from the moment I woke up from the anesthetic but my concerns were dismissed, by the surgeon and then by the plastic surgeon. For the year and a half it took to accomplish the reconstruction (implants) the pain got worse and worse. I had changed plastic surgeons by then and the second plastic surgeon ALSO told me, "Oh the pain is only your body getting used to the implants." By the time I was ready to rip them out of my body with my bare hands, I called the second plastic surgeon for an appointment to remove them. He was on a vacation. I wanted them out right away so I found YET ANOTHER plastic surgeon. He examined me, told me he could remove them but unfortunately it would not eliminate all the pain (I had some pain from swelling). He told me that most of the pain was nerve pain caused by post mastectomy pain syndrome and should have been treated right away. Just to make sure of his diagnosis, after he removed the implants and I had healed, he sent me to a pain management doctor who numbed the nerve that controls that section of the chest. The pain stopped immediately and came right back when the drug wore off. I hate to tell you but the pain has gotten worse over time. My pain feels like constant electric shock across my chest plus a sensation like a metal band cutting into my chest from armpit to armpit. This never stops - all day and all night. Nothing touches it - not pain pills, nothing. I take a beta blocker, a calcium channel blocker and an anti-seizure drug for other health problems and they do nothing for this - it is monster pain. Add to that the fact that I cannot wear any kind of breast prosthesis - I can barely stand for a shirt to touch my chest. Sympathies to every woman on this forum. PMPS is the secret in breast cancer treatment - I have NEVER heard anyone speak of it

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    I specifically chose this thread because I AM 6 months post op, have chronic pain after mastectomy, have reached out to BS, Ot's, and have been told this is NOT LE given my minimal measurement difference. MY RECENT OT is stating it is nerve.

    NOT sure why a review of PMPS was reposted. i know what it is. I'm trying to figure out my pain, discomfort & lifechanging side effect of BC.



  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited October 2017
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    Jacki - I have really mild lymphedema and nerve tightness in my left arm. It was better for a while, but they've come back since I've started to work full time and been less vigilant with exercise, nerve flossing, and lymphatic massage. It's slowly improving again.

    If your pain comes from nerve irritation, please consider medication to calm the nerve. I had severe sciatica. It is almost nonexistent now after months of Lyrica, nerve flossing, and postural alignment exercises. I needed the Lyrica to lessen the pain, but as I did the exercises and nerve flossing, I gradually reduced the Lyrica dosage. Now I no longer take any pain medication, but I need to keep up the daily nerve flossing. You can ask your OT to show you some techniques.

    Hope you find something that works for you.

  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    THANK YOU SERENITY.... I DO THE NERVE FLOSSING AND NERVE EXERCISES. I AM ENCOURAGED THAT YOURS HAS DECREASED WITH LYRICA & exercises. I WILL KEEP ON WITH MY FLOSSING & stretches and make an appt with my doc about medication.... 💕stay tune

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited October 2017
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    Good luck, Jacki! Make sure you do the flossing and exercises very gently. Stop if your pain increases. Pain = No Gain! At the beginning, I would do the nerve flossing a few times a day.