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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • LOCommish
    LOCommish Member Posts: 3
    edited October 2014

    Mary Lou - nice to know I'm not the only one that's the "only one."  As I've told my friends and family, if one more doctor or nurse looks at me, tilts their head and says, "I've never heard of that before" I will explode.  I get that most of the effort and energy goes into eliminating the cancer but the void on the other side just seems so huge.   

  • Enerva
    Enerva Member Posts: 2,985
    edited October 2014

    hi, I haven't been here for a wile, I wanted to tell you that after my revision surgery in august 27,2014 I got a lot of improvement yet not a 100%. The fact is that I just integrated myself to work full time and the soreness came back. My implants are also cold again and my pain is back, I am so frustrated with it I wonder will it ever be close to no pain? It's so bad cuz i feel people see me in the out side and they say oh you look so healthy butter have no idea of the deling with the nevers pain I am not sure what it's exactly, I am also having scars issues. Redness and itchiness it does not get better :( I truly believe maybe fat graftino can improved but I just don't want another surgery, I am pushing myself to work and get by. I send u all hugs.my sister started chemo today and I worry I don't know what will happen. 

    GooGoodnight 

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited April 2015

    Hello Ladies!

    I am one of the people like you who suffers from the Post Mastectomy Pain Syndrome.

    We have a group of ladies from all of the world who have this pain followed the surgery and the post mastectomy radiation and chemotherapy.

    I would like to invite you, who have this pain to our wonderful group, where each of us tells about the treatments, their outcome and a place where we can vent

    The FB address is

    https://www.facebook.com/groups/759940397434876/

    I am in Richmond Hill, Canada and I had my mastectomy on Febr 2010, but the pain started one year after the surgery!

    The level of the pain was 6-7/10 and sometimes ( rainy days) jumped to 8-9/10

    Currently I am under medication with 1200 mg/day Gabapentine (Neurontin) Cesamet=nabilone pharmaceutical marijuana, and slow release Oxycodone ( one a day, 5mg/2.5 mg naloxone for bowel motion improvement)

    Also I have a compounding cream with a mix of Lidocaine/Ketamine/amytriptilline/ketoprofen and clonidine.

    The cream I apply when the burning of the skin (allodinia) is unbearable. It helps until the next medication. For ex. I apply it at 5 pm and the medicine I take at 7.30 pm

    If you have questions, please write me at soniatoronto2010@gmail.com

    Gentle hug

    Sonia

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited November 2014

    That is exactly what all of us have heard: "It will pass" or "It is just a small skin sensitivity" or as my surgeon said: " in my 44 years of breast surgery I have never heard about it"

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited November 2014

    Bexter, I also did the radiofrequency ablation (after "diagnostic facet injection" where it responded to the injections I became a good candidate for ablation. After the treatment I felt some improvement. Also I had Lidocaine/Ketamine infusions, for 2 years. On the net I have seen an article of  medical doctor  Dr Cathy Tang. I had it also, but I don't think that helped, or I think that everything helped a little so today I am mostly pain free, only the burning skin is still there, also not that much.  The artice you can read it here:http://www.acssurgerynews.com/single-view/novel-treatment-promising-for-chronic-neuropathic-postmastectomy-pain/717556ad8ca1684ae0e738c048aa604e.html

    Hugs

    Sonia

  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Sonia - thanks for your posts.  I don't do Facebook but am glad to hear your thoughts & have your contact info.

    I am currently in PT to break up radiation scar tissue and deal w/truncal lymphadema that is riding on top of that scar tissue - both causing constant pain.  I thought I was handling the pain pretty well until she started pulling today.  Then I realized I could no longer touch my toes, which I have always been able to do.  Sigh.  Not to mention the neuropathy.  A long road ahead

  • honeybair
    honeybair Member Posts: 234
    edited November 2014

    Sonia, so sorry that you have been and are still experiencing such pain.  Mine is so minor compared to the level that you have.  I am one year our from surgery and around Christmas will be one year out from radiation.  Because I had such a large tumor under my arm, my BS removed 22 nodes and that is the source of my pain according to her.  Mine is at its worst when I lie down to sleep.  Breast surgery never lets you forget that you have had it for so many of us.

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited November 2014

    Thank you, Honeybair! :-)

    What do you take for pain breakthrough?! The pain is under armpit? Do you feel it like a porcupine? I felt it as if I had a huge book under my armpit with sharp edges. But that was before! Now I feel this burning pain but not the knife or the iron bras which now I am free of them! It takes long time to return to ourselves, or we gave to accept as our "new me. Forgot to mention :

    1) ice bag at night, before I fall asleep.

    2) swimming in a pool, even though with a very large T-shirt with 95% cotton and 5% spandex ( for the skin sensitivity is the best material and CasaDona type of silky stuff)

    3) the medication I talked on a previous post

    4) Compunding cream which was prepared Lidocaine 10% Ketamine 5%Amytriptilline 5% Ketoprofen 5%. That numbes the pain along the scar tissue! ( I am in Canada, but in US is very common and can be foundeasier! If you need I can help finding a laboratory. In Toronto, we have the IDA pharmacies and a Pain Clinic who prescribes it!

    At home I wear only half tops, since I cannot touch the area

    Have a very nice day, gentle hug to all of you!

    Sonia


  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited November 2014

    Minus two, Does it help the PT ?

    Did the PT mentioned the TENS machine? I have heard that it helps,but only when is attached!

    What about acupuncture? Did you do it? Did it help?

    Hugs for you

    Sonia


  • honeybair
    honeybair Member Posts: 234
    edited November 2014

    Sonia, I take nothing for pain. Since it is not intolerable, I have just learned to live with it and sleep in certain positions. Each night I do have to get out of bed and sleep in my recliner. Based on what you are suffering, guess I can count myself as fortunate. I burn on my chest where my breast was removed and have found that massage helps. I also sleep with a little mastectomy pillow that a friend made for me and brought to me the day of my surgery. It has been a godsend for me. Life is definitely not the same and I actually dread going to bed each night.


  • minustwo
    minustwo Member Posts: 13,389
    edited November 2014

    Sonia - the PT is certainly stretching the scared tissue from the ALND. Right now there's considerably more pain, but I hope that will resolve down the road. If I'm to believe what the RO said, I will have to be diligent & exercise every day so the muscles don't retract. Of course in addition to the LE issues.

    Like honeybair, I currently take no medications either except an occasional aspirin.

    I haven't tried TENS or acupuncture. I'm hoping to get this chest & arm area under control first and start to work on the neuropathy next year when I'm 2 years PFC if there is no more improvement.

  • Concernef1
    Concernef1 Member Posts: 2
    edited January 2015

    michigan mom

    There is a treatment for chronic regional pain syndromes using radio frequency non destructive pulsed energy. This can be found at American pain relief institute 605-665-5225. This technique is widely available in the Netherlands. I used it when I had multiple rib fractures from stage 4 MBC

    Concernef1

  • shabby6485
    shabby6485 Member Posts: 48
    edited January 2015

    Hi,

    Has anyone tried Singular for this issue? I am also experiencing extreme tightness, i can feel implants, cannot tolerate anything touching my chest. Just miserable for 2.5 years now. ( PBMX silicone)

    I have tried myofacial release, Vit E, stretching to no avail.

    Thanks for any input

  • LoriWNY
    LoriWNY Member Posts: 178
    edited January 2015

    Shabby--I had been on Singulair for years prior to my BMX to control my asthma. I am sorry to tell you that I still experience tightness despite the daily Singulair (however, my asthma [and chronic hives] are wonderfully controlled because of this drug!). I am having a revision from rounds to anatomicals and also having a lateral capsulorrhaphy on both sides in February. I am hoping this will resolve my tightness as I too have done all sorts of therapy (PT, chiro, breast massage including manual lymphatic drainage and myofascial release by a LMT, graston massage by my chiro, swiimming, and yoga) and although it is considerable less than immediately after the exchange, the tightness persists and is more noticeable when I am tired/stressed.

  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    I took Gabapentin for burning pain post BMX with no reconstruction. My surgeon's nurse prescribed it for me. I gradually increased (starting soon after surgery) up to 200mg 3X/day and then tapered down. It took away the extreme sensitivity. I would say intense pain lasted for maybe 3 months post surgery. At 2 months after surgery, I started physical therapy. This helped mostly with shoulder stiffness, but not chest discomfort. Wearing compression tops seemed to decrease my sensitivity. In the past 2 months, MLD massage has significantly improved my chest sensation and eased tightness and hyper-sensitivity. Since starting MLD with my new physical therapist, I have started to feel more natural - like my pre-surgery self.

  • bluepearl
    bluepearl Member Posts: 133
    edited January 2015

    I am so sorry for all the women suffering this pain as I had it for 1.5 years and then has another breast cancer diagnosed and went with a sentinel node biopsy which made a huge difference. Fortunately, most of my pain is small, sometimes increasing with exercise but not anywhere near what it used to be. I have had burning mouth syndrome for almost ten years and you learn to live with it. I always hold out hope for new pain treatments and/or meds to help us all have a good q.o.l.

  • shabby6485
    shabby6485 Member Posts: 48
    edited January 2015

    Thank you for your replies~ LoriWNY, bluepearl, daisylover

    Has anyone who suffers from extreme tightness had relief of any kind? If so, how!? My next move is Neurontin in the belief that it is not the implants causes my symptoms but nerve damage.

    I really empathize with all experiencing this!


  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    Shabby, Gabapentin and Neurontin are the same drug. Worked for me! Coupled with physical therapy. My current PT does scar tissue massage that has helped immensely.

  • shabby6485
    shabby6485 Member Posts: 48
    edited January 2015

    One other question, ladies...

    Lately, I noticed that I can actually "feel" the implant on the right. When i bend down or move in certain positions. Was wondering why that might be or if anyone has experienced that....

    Thanks!

  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    no reconstruction for me... hope you get some answers!

  • Enerva
    Enerva Member Posts: 2,985
    edited January 2015

    shabby, hi yes unfortunately I also feel the implants if I bend or go on one side to sleep. No way around that. I think maybe if I get a ps to agree to do some fat grafting that may help since the reason for us to feel the plastic implants is due to not having any tisue or fat, we only have the skin at least in my case only skin covering the implants. :(

    Hope others give their opinion too.

    Regarding the tightness. It's just horrible I had it bad on the rad breast so bad I had a revision surgery to free the implant. Now it is way less but still way tight compared to the non rad breast.

    Good luck

  • honeybair
    honeybair Member Posts: 234
    edited January 2015

    I agree that our pain must be caused by nerve damage. I had no implants, but still have considerable discomfort lying down in my bed and many nights have to sleep in a recliner. My BS insisted it was caused by radiation, but I think it is a combination of all of the surgery combined with it. My pain always wakens me from my sleep when in bed. I just thankful for Lazy Boy recliners. I just accept the fact that nothing will ever feel the same before surgery.

  • ginger48
    ginger48 Member Posts: 1,437
    edited January 2015

    shabby-gabapentin(neurontin) has helped me along with manual lymph drainage therapy from a licensed provider and PT to release tight muscles as well as swimming. I have minor truncal lymphedema and these things help.

    Good luck!

  • shabby6485
    shabby6485 Member Posts: 48
    edited February 2015

    Thank you ladies for your replies!

    I started Singular last week and dare I say I feel less tight. Not getting my hopes up but I am praying for some relief. If this doesn't work, I'll start Neurontin. Just happy that there are some possible treatments. I am truly resigned to the fact that I might need to have the implants removed eventually. I'd rather not but cannot live in constant discomfort. I really hope that you all find some relief and peace.

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2015

    Shabby, I'm scheduled for fat grafting in April in hopes of getting pain relief. I'm slowly coming around to the fact that removal of my implants may not relieve my pain, so I'm taking steps to hopefully help. Maybe this would work for you too?

  • DontdoALND
    DontdoALND Member Posts: 8
    edited March 2015

    Ladies. I'm in desperate need of help. I have an extreme amount of pain and tightness under my arm and in both chest muscles. I have had to leave my job of 27 years and this has taken me out of life.

    I had tissue expanders placed at the time of my mastectomy and a sentinel node biopsy. I had 16 rounds of chemo.

    Eight months after my mastectomy, I went to Vanderbilt to talk about clinical trials and prevention. The doctor there told me I should have had all my lymph nodes removed because one of them was positive. I had a clear PET/CT scan. I questioned her about this surgery and she said she would definitely do it because she has 3 kids. There could be microscopic cells. She scared me terribly. They didn't tell me the risks when I asked. She acted like it was easy as having a tooth pulled.

    I messed up and let Vanderbilt do a lymph node dissection. At the same time one of their plastic surgeons placed implants. I have been in extreme pain ever since. I had the implants removed but I still have extreme pain and edema on my trunk. This has been a horrific experience. I was already back at work after fighting breast cancer and the doctors at Vanderbilt took me out of life. I need pain relief. My arms are getting weak and my chest is extremely tight and painful. Its been a year and a half and I don't know how much more I can stand.

    What can I do to get relief? I do PT but everything stays so tight and hurts so bad. I've been told it's scar tissue and nerves. Will anything help? Fat grafting, VLNT, anything? Please help me. I need ideas and a good surgeon.

    Thank you.

  • Enerva
    Enerva Member Posts: 2,985
    edited March 2015

    hi, dontdoalnd I am so sorry you are here. I hope they post suggestions for you I must admit after my last surgery my pain improved but now is back. I tell you for me exercising streach exercises Have helped me but the pain is never gone 100% it gets better and I keep living some days better than others. I had rad and the rad side is the one most painful for me. Honestly I don't know what to suggest but stay here. I am sure lots of people ll respond. Go back in this tread and read some people have great ideas before.

    Sending you hugs.


  • ginger48
    ginger48 Member Posts: 1,437
    edited March 2015

    dontdoalnd- have you been seen by a certified lymphedema specialist?

  • daisylover
    daisylover Member Posts: 173
    edited March 2015

    Dontdoalnd, I took Gabapentin 3X a day for several months until my nerves calmed down. I also found a second PT who specializes in MLD massage, scar tissue massage, and breast cancer patients in general. The PT and Gabapentin helped me feel like myself again. (I did not have reconstruction, though) Best Wishes

  • DontdoALND
    DontdoALND Member Posts: 8
    edited April 2015

    yes. I get PT but I still have lots of pain.

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