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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • makingway
    makingway Member Posts: 465
    edited October 2010

    Gran-I am thin, and was athletic before my surgery. I sent Dr. Khouri phots and I had enough fat for the procedure. My PS said the only flap surgery(because I was so thin) I qualified for was a lat-flap. There was no way I was gonna mutilate another part of my body, so I opted for an implant. I absolutely hate it!

    hopeful-I would have the shooting pains in my shoulder blade. I wondered why that was, they didn't operate on my back.... I also had a mild pain under my boob, where the bra line would be. My friend who had BC surgery had the same pain, but worse. She found out from her PS that this pain is caused from cutting blood vessels. My doctor never told me this. My doctor also didn't tell me that she cut and removed my scapular artery-I read it in the operation report. The shooting pain is infrequent now-it's been a year since surgery. I still have some pain in the shoulder, but it's not bad compared to my arm pain. It starts at the elbow under my arm and runs up my arm and down my side. I also have pain in the chest which feels like the implant is causing.

    TE pain can be very uncomfortable, to even unbearable. My TE was too big for my small frame. I had it removed after 2 months. I couldn't stand it anymore. But, because you're in chemo your doctor wont recommend you remove it until you've completed treatment and had some recovery time. I don't know if your pain is from PMPS. I don't know if mine is either, but I suspect it is. There isn't much research on PMPS. Maybe, if there was a profit to be made by researchers, more would be done.

  • hester
    hester Member Posts: 7
    edited October 2010

    Any current thinking about acupuncture and massage?  I had bilateral mastectomy with immediate DIEP flap reconstruction on Sept 1, and that hip-to-hip abdominal incision feels 100% better than my breast tissue.  Is it too early to call it PMPS?  If not, it's still an acute burning sensation, particularly in the midline and bottom parts of my breasts. My PS and BS say it's normal and will go away in time - keep managing it with medication.  I hate to continue taking narcotics so am on ibuprophen (a lot).  I've been to acupuncture twice now, with moxa and heat in the breast area.  They also recommended castor oil compresses with massage and heat.  It seems to be providing some relief.  Have others had good results with this or is it wishful thinking?  I can't WAIT to be able to swim again - every bit of my body wants to stretch the way I can only in the water. But that's at least 2 weeks away.  Meanwhile, the bike and elliptical at least get my blood moving.

  • makingway
    makingway Member Posts: 465
    edited October 2010

    I would be reluctant to get accupuncture for fear of developing cellulitis and lymphedema. But that's just me. If it works for you that's great. The docs told me my pain would go away too... It's been a year and it is less severe than it was the first couple of months, but I still have pain on a daily basis. You sound like you're recovering very well-riding a bike and exercising. I had to sleep in a recliner for 3 weeks because I couldn't lay horizontal let alone ride a bike LOL

  • hipchik47
    hipchik47 Member Posts: 113
    edited October 2010

    Hi all, Just checking in.  I am still traveling across the country in my motorhome.  I feel so fortunate I  can do this, but, the pain is a struggle I willl not complain about.  Right now I am in Okalhoma. I'll check in again.  I always keep in mind some ppl are worse off then I am.. Hugs Hipchik

  • fogandroses
    fogandroses Member Posts: 130
    edited October 2010

    Hugs back to you, Hippy! I wonder where you are now?

    I'm reading two great books, thought you might like to check them out. Actually three. I forgot about The Passage which is just fun reading. The other two are Magnificient Mind at Any Age by Dr. Amen and Anti-Cancer: A New Way of Life by Dr. David Serfan-Schreiber.

    My mom has Alzheimer's so I'm interested in keeping my brain healthy, as well as doing what I can to keep my body strong. I've learned a lot. Now i just have to actually do what the books say. Mainly exercise and diet. Only problem is french fries. No matter where I run, they are there.

    Oh, also google Sunrise Tai Chi. I ordered the DVD and find the breathing exercises done with stretching to be really healing. Have a good day everyone.  Love you, Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited October 2010

    I wiil be in San Antonio tomorrow.

    I need to get my mind and body in shape.....so when I get home.........Love Hipp

  • brazos58
    brazos58 Member Posts: 109
    edited August 2013

    Hi Everyone

    Need to toss this out to you all and any feedback would be great.

    I had a BMX/ 6/10. I am almost 4months out. Had 6 weeks of LE/PT, myofascial realease for cording from Axillary Web Syndrome on Right. PT is done and wanted me to increase my activity like vacuuming, driving my lawn tractor, weed wacking....I am finding that any of these are leaving me with such a tight wire like feeling in my incisions and across my pec muscles...and a ripping feeling in the incisions down towards my armpits.... streching helps little, scar release massage help alittle. BUT I still have this on a day to day basis.... just worsens with more activity.

    I also feel as my pecs and incisons almost pucker or think about going into a charley horse....if i sweep, or lift....or random movements.

    PT tells me I should go see my BS and that I should not have this pain at almost 4 months post op. My incisions are ~ 8 inches each side.

    I see the fitter this week to see if they can do something with chest hypersensitivity. I am gaurding my chest... and please don't anything/ anyone bump me.

    I just started reading in here and am barely caught up.

    Thanks for listening...

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

    Bump

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010

    Brazos - I had my BMX June 2009 and I cannot even imagine vacuuming for more then a few minutes at a time let alone weed whacking.   You are only four months out...In my new world I have learned that if I am doing an activity that causes me pain - STOP - pain does not equal gain.  I realize that are times where you may not have a choice in the matter,but when you do, listen to you body.  It may look like you are healing well on the outside, but internal healing can take so much longer then the external healing.  For the hypersensitivity, I have found that the lightest touch an send me reeling, but if I wear a compression vest or breast binder, I can manage pretty well.  

    I hope you can find a solution that works for you soon, just remember you have had major surgery and 4 months is not a very long time in the grand scheme of things no matter what your PT says.

  • sofiajane
    sofiajane Member Posts: 2
    edited August 2013

    I have read this thread with interest and I think of all the amazing women who have to deal with cancer and then continued pain -

    I had my mastectomies and reconstruction from TE in 2007. It has been almost 4 years and my pain bio is identical to you. Only difference is that I cannot stand clothes on me. I cannot wear a bra and really suffer in the Ohio winter when I need heavier clothing. Maybe that difference is why I was diagnosed with RSD.

    Of course my breast surgeon thought I should go to an orthopedic doctor since I may have a disc problem! I drove home and thought, "Wait, I didn't have neck surgery!"

    Had PT, reiki, Lyrica, percocet, etc.

    Primary sent me to Cleveland Clinic for Pain Management. Had several blocs, none worked.

    Then sent to Pain Rehabilitation since I was addicted to percocet. Never did understand why that was such a problem when compared to the pain I was in. I offered to stop the percocet cold turkey when the pain went away, no deal. So now I am on lots of meds, none for pain and I am in trouble.

    I made an appt. with my PS. on Thurs. I am going to insist that he remove my implants (which are beautiful). I just feel he could look in there and help me. Maybe the implants are causing discomfort.

    I guess I am desperate for help. Tell me, don't you think there is a chance he can help me? Didn't some of you receive help from your PS? I don't know what else I can possibly do.

    Before surgery I exercised every day - walked 7 miles and took 3 yoga classes a week, sometimes swimming. Now I am returning to exercise, but why did this have to happen to us? I find it hard to believe these surgeons didn't know. I'll stop now.

  • BettyeE
    BettyeE Member Posts: 136
    edited October 2010

    I had pain for three years.  I could not wear a bra at all.  I had reconstruction in New Orleans and the surgeon unbundled nerves and when I woke up the pain was gone.  Go to the NOLA in Sept thread and read about these surgeons. 

  • sofiajane
    sofiajane Member Posts: 2
    edited October 2010

    My PS would not do surgery because he said with RSD the surgery could make the problem worse. I also consulted with a PS in Chicago who would not do surgery. I know of the reputation of the NOLA surgeons but I never considered I would have nerves they could "unbundle". I will give them a call. Did your insurance give you any problem? Sofia

  • brazos58
    brazos58 Member Posts: 109
    edited October 2010

    Michelle thank you for sharing your experience. It makes sense....Just hearing it from someone who has lived it puts a new perspective on this for me.... I am thinking my LE/PT does not know the extent of the recoup/ healing time for BMX's...I go to the fitter tamara and I am going to ask about the binder/ compression vest for the hypersensitivity send me to the moon ISSUES. Thanks again.

    Bettye, strength to see you thru the answers you seek, hang on to your hope.

    Blessings to All

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010

    Brazos - Just wanted to let you know I met with a pain management specialist yesterday about my on going pain issues - she thinks that the hypersensitivity and pain issues stem from my intercostobrachial nerve being nicked/cut during BMX/SNB and has started me on a medication that helps with the nerve pain...it is not an opiate but an anti depressant that has a secondary benefit for chronic pain/nerve pain (nortriptyline).   She is also having me do gentle stretches against the wall along with manual manipulation of the pectorallis major and minor muscles. 

    At first I was a bit put off that the medication was primarily an anti-depressant but then again it makes sense because I have noticed when the pain increases, my emotions get out of whack, which seems to make me less tolerant of the pain and makes the pain seem more intense (a vicious cycle)  It also made me feel better that my pharm said it was an oldie but goodie, tried and true medication that has been around for 40+ yrs so the side effects are well know and there should not be any surprises (I am a little worried about the weight gain SE though).

    I would ask your BS about pain management and let her/him know about the hypersensitivity because it can stem from nerve damage and you can get help with the pain/sensitivity.  My pain doc advised that the sooner you address the pain it is easier to get it under control, I am going on 15 months and she was suprised I was in such good shape emtionally and physcially considering the chronic pain issues I have been having  Laughing  

  • brazos58
    brazos58 Member Posts: 109
    edited August 2013

    Michelle thank you... I will do that. My LE/PT was able to get me down from the ceiling with the hypersensitivity with having me tap on my chest, rub it with different textured material, shower massager.... and very light touch. It is much better but still has me on gaurd. I have been doing the chest massages as well with the pectoralis muscles and you should notice that helps alot esp after gentle streching first, warm shower..... I sometimes wonder if we need to retrain these nerve endings while they heal by de-sensitizing ourselves?

    Hoping you find some relief and can move thru this. I have had 4 months of it.... but I have to remind myself that I have made some progress... would like more tho

    Strength and Light to you

  • eileen1955
    eileen1955 Member Posts: 31
    edited October 2010

    o2bhealthy; good luck with the pamelor (nortryptiline) it is an oldie and goodie.  In addition to what you described I wanted to  mention that it will cause natural peain-relieving opiates. similar to exercise (when you are able to do it)     but it is not  an opiate drug that would cause tolerance or addiction. good luck to you.      I just had a BMx a week ago and sincerely hope I will be feeling MUCH better in a few weeks.    sorry to hear you have had such a difficult time, eileen

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010

    Thanks Eileen!  Good to know it is an odie but goodie Laughing

    Brazos -  Some of the muscle manipulation and exercises my pain doc is having me do are geared towards de-sensitizing the over stimulated nerve endings.  You are on the right track!  

    I find it amazing that when dx'd with BC we are not immediately referred to a mental health therapist to help us through this journey emotionally and scheduled for physical therapy and rehab by a QUALIFIED professional who is trained in post cancer surgery care.  It is provided for heart patients, amputees, stroke patients, ect... why not cancer patients? 

    Ok,  I am off my soap box...

    Have a good night all!

  • BettyeE
    BettyeE Member Posts: 136
    edited October 2010

    I had no problems with my insurance.  It was all done during reconstruction.  Good luck .  That was actually the best part of the whole journey.  I love my girls, but to not have the pain is wonderful.

  • brazos58
    brazos58 Member Posts: 109
    edited October 2010

    Michelle I was thinking about you and your sitchy. As we have similar issues. I went to the fitter this past week and am in my post surgical camisol with FLUFFS. I kid you not, I am not feeling the chest tight, wire torture... my incisions are softer... and the hypersensitivity is down.

    I can hug, wear a necklace, seatbelt, PLAY MY GUITAR....awsome stuff.

    I was thinking that every breast cancer pt needs an Advocate to help them navigate this whole experience. Im an RN...maybee this is my next calling?

    Hope you are all feeling some relief from your Suffering

    Peace

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010

    Thanks Brazos!  I have 'swell spots' that I wear under my binder or compression vests that really help with lymphatic drainage and desensitizing.

    So happy to hear you have found some relief!!!

  • fogandroses
    fogandroses Member Posts: 130
    edited October 2010

    bump

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2010

    Bumping in response to csbridger's post in the DCIS forum.

  • hipchik47
    hipchik47 Member Posts: 113
    edited November 2010

      Hi everyone,  I just want to check in and see how everyone is.  I finished my roadtrip last week.  It was hard, but I did it.  My choice is to whine about the pain and stay home or get my arse off the couch and into my rv.  Next week we r going to to the beach, and on to disney for a few days.  Disney is soooo hard.  The pain is bad, but I'll do it.  I find I am taking less pain meds.  The pain is the same, but I relize the meds really don't work.  I wake up everyday  thinking its gonna be a great day.  Some days are some arn't.

      What is everyone doing for thanksgiving??  Im cooking for the crowd.  Just a turkey and the trimmings.  I can make a turkey dinner in my sleep lol.  In fact, I have made one in my rv.  Love Hipp

  • fogandroses
    fogandroses Member Posts: 130
    edited November 2010

    Hi! Hip, welcome back. I love the image of you cooking a turkey in your RV. I'm cooking for everyone this year. I love to do it and we have an open kitchen/family room so it's perfect for a crowd. We asked my brother-in-law to set up a Bloody Mary bar so I'm not worried about anything now :)

    I'm feeling optimistic tonight. I received an email from my contact at the hospital where I had my surgery. Women are now being seen by a PT before being discharged after surgery!!! I don't know how much my "badgering" had to do with this change but I am over the moon happy. It's a baby step but an important one. Making changes in the medical world was beginning to feel impossibly difficult. Now I have renewed hope that one day women will automatically be enrolled in a rehab program, even before their surgery. I can dream,can't I?

    Love, Fog

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited November 2010

    Way to go Fog!!!! How exciting is that! Hopefully the next generation of women to be treated at that hospital will not have to endure the discomfort and pain that is so often ignored or misdx'd after breast cancer surgery.   Now if we could make it a standard for all hospitals...

  • hipchik47
    hipchik47 Member Posts: 113
    edited November 2010

      Awsome Foggy, Baby steps are good!!

  • hipchik47
    hipchik47 Member Posts: 113
    edited November 2010

    I was just looking at the board threads.  There is a thread on the lymphedema after surgery thread..........there was an article written to the Washington post that has been published about lymphedema, after breast cancer.  so there is hope out there.   Foggy did u hear me......... maybe another newspaper will publish your article..

  • binney4
    binney4 Member Posts: 1,466
    edited November 2010

    Hipchik,

    Check out the "comments" on the Washington Post site -- PMPS is specifically mentioned there by at least two commenters.

    Here's the article:
    http://www.washingtonpost.com/wp-dyn/content/article/2010/11/08/AR2010110803739.html?hpid=sec-health

    And here's the comment page:
    http://www.washingtonpost.com/wp-dyn/content/article/2010/11/08/AR2010110803739_Comments.html

    There's hope!Wink
    Binney

  • hester
    hester Member Posts: 7
    edited November 2010
    Here's a great article from Sunday's New York Times Magazine.  I'm so happy October is over. http://www.nytimes.com/2010/11/14/magazine/14FOB-wwln-t.html?ref=magazine
  • marmak
    marmak Member Posts: 2
    edited November 2010

    I am happy to have found all of you, at least now I know I am not crazy!!  I had a prophylactic mastectomy in August, 2009 with tissue expanders, and replacement surgery in November, 2009.  I have been miserable ever since.  Being a BRCA2 carrier I thought I was making the right decision, now I am not so sure.  The constant pain and tightness has been awful.  My PS passed me off to the surgeon, who flat out accused me of being in his office with the intention of getting an Rx for painkillers, which at the time I had not been on any medication for more than four months.  After doing my own research I believe that I am suffering from PMBS.    I am now under the care of a physician that is wonderful, however, she has never dealt with PMBS either.  We have tried neurontin and pain meds but nothing is really helping.  Dr. H is currently in contact with a breast specialist and plastic surgeon in Madison, and it sounds like they think reducing the size of the implants might be the answer.  Based on what others have posted here it doesn't sound like that is the case.  I am so confused as to what to do and where to go from here.  I have not been myself for so long, I feel terrible for my husband as I haven't been the easiest to live with.  I also have two girls (5 and 9).  I was so positive during this whole thing, but now feel as if each day gets harder and harder to get through, both emotionally & physically.

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