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Post Mastectomy Pain Syndrome (PMPS)

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Comments

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

    2nd time, that remind me to ask,  are your implants cold? My implants are always cold ice cold and it's annoying. I always wonder if it is going to be always that way. Is anybody here using silicone implants or anyone has saline, are saline implants cold too. I hear someone say something regarding this but I can't remember who or what exactly they said lol. I also wonder if that contributes to the burning nerve feeling I have. Anyway just wondering. I can't help to think about all the little details and like you say things maybe I did that I should have not done. I like you took care of my mother,  she had dementia and was very hard cuz i got sick and she also got very sick I spend weeks at a hospital with her and she past away right after I finish rad. Last year. Yes there were times I didn't care for me I only focus on mom and I could do it all over again losing her affected me way more than having bc. But you are right I bet I also lifted weigh I was not supposed to wile I was supposed to be resting after mx. Who knows why this bc had to happen.  The other day a lady said people who get c, is most times cuz of the way they are or feel inside. She does not know I had bc,  I just kept walking and ignore her comment. When I got to my car I started to cry. People can hurt me so easy now. I honestly never been a bad person,  I always gave and gave and gave to others never expected anything from the world and then this bc came. Out of no where. Now one of my sister has it too. My point is that we must be very strong and just remember we are not alone and we are not responsible for this. It's just something that happens to some and not real reason or person to blame. Specifically not us. 

  • honeybair
    honeybair Member Posts: 234
    edited July 2014

    Don'tDo, I am so sorry that you are suffering so.  Like you, I do not understand why your clear nodes were removed.  Has the doctor explained the reason for doing so to you?  My nodes were clear also and were all removed.  Fortunately for me I have not had any problems with lymphedema, but I have enough misery with just the extensive surgery that was done. 

  • meow13
    meow13 Member Posts: 1,363
    edited July 2014

    Dontdo,

    I know, my onco was so sure I should do chemo, but my mind was dead set against it.

    Sometimes you need to listen to yourself, they are going after the cancer with everything they have not worried about the consequences. I am sorry you had all your nodes removed for nothing but pain. Do you wear a sleeve for swelling?

  • debbieg2010
    debbieg2010 Member Posts: 12
    edited July 2014

    Enerva, I have silicone implants and they are always cold too. This chronic pain is horrible and we can't get answers from the doctors and I think they should have been more up front about the possibility that we could have this problem. I also lost my precious mother on the same day of my mastectomy, she was in the waiting room and was told by my BS that he had gotten all the cancer and she was happy and then 45 minutes later she had a stroke and blood clot in her brain, so I feel the same way you do that losing my mother affected me more than the breast cancer. That was in 2010 and and I am still struggling and having problems. I also wanted to tell you that if you go on Facebook, there is a support group for this topic as well and it is called Post Breast Therapy Pain Syndrome, I think we need to get all the support we can because no one else understands. This BCO  is a great site and I have gotten so much from it and I wished I would have know about it before I had my mastectomy. I am sorry that you lost your mother and also sorry about your sister. I do think things happen for a reason and so yes we have to stay strong and be there for others when we can.

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

    Thanks debie, I am also sorry about your mom :( I have no words, I feel only time will help us withvthe lost of our moms. Yes I will look for that support group. Thanks for the info. 

    I do wish we all get better regarding this pain and nerves burning. 

    Maybe time will also help us with that. 

  • melmcbee
    melmcbee Member Posts: 371
    edited July 2014


    Ladies, I also wanted to tell you to try and rub the skin on the area that hurts. Sometimes it helps with the burning if you do it several times a day. Even if it hurts bad to do it. The nerve endings are trying to regenerate and if you get a cloth and rub it then it kind of desensitizes it. This was a trick that I used after surgery for the first year and it did help.

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

    wow thanks I ll try.

  • honeybair
    honeybair Member Posts: 234
    edited July 2014

    Debbig, thanks for the FB info.

    Know there are no words to describe how you felt losing your beloved mom on the same day as your MX.  Life can certainly hand us some serious pain.  I am so sorry for your loss. 

    melmcbee, thanks for the rubbing suggestion.  What do we have to lose by trying any suggestions offered to mitigate our pain?

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

    hi there is something extrange happening this week to me, I switched to a different bra this week and in 3 days I felt some what better. I still burn but not as much and if I take it off it goes backbone hurting. Now I am thinking maybe I should have wear this other bra from the beginning I jistvthought I tell you cuz in case you have different bras try different one.  I found that there is not way for me not to wear a bra it seams I need to have some kind of support 24/7 :( so far I only have two of these bras I will try to buy more. I spend so much on bras that do not give me any confort but these one are doing an amazing job. I bought them cuz a lady on another tread mentioned and now it's really giving me some relief 😌 

  • honeybair
    honeybair Member Posts: 234
    edited July 2014

    Enerva, happy that you are getting some relief from your bra change.  I do feel better when I wear my bra and my prosthesis.  Fortunately since I am Medicare age, I get 12 free bras per year and a new prosthesis every other year.

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

    yes, I don't know what it is but this bra seam to help, the only thing is that I still wish I could wear no bra lol it gives me marks in my sides it helps with the chest area though. Wondering if it ll be over with time I mean all the pain n burning. Anyway for all of u out there try changing bras maybe it ll help a bit.

  • debbieg2010
    debbieg2010 Member Posts: 12
    edited July 2014

    Honeybair, thanks so much for your kind words. The FB Support Group also has good information. I joined about 6 months ago and there were only about 30 members and now there are 229, ladies from other countries also. 

    Enerva, I have also battled back and forth with bras. It seemed in early stages that a compression bra help. After going to a physical therapist I was able to stop wearing one I wear the coobie bra similar to the ahhahh bra but the band on the coobie is not as wide and the straps are thinner. I guess it depends on how much support you need. I am now going through a stage where I almost can't stand for anything to touch my chest or my upper back. I had first therapeutic massage Thursday so I am hoping this will help with some of my pain. It has been so frustrating having to deal with this horrible pain and trying to find the best treatment. 

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

    debbie I heard you I ended up with many different bras and nothing seam to be good but now it seams I found some comfort with this one called wacoal85276 its allowing me to sleep better I was not too crazy about buying it on line but I am glad it fits ok I ll keep using it till my exchange. Then I will see what happens. 

  • DontdoALND
    DontdoALND Member Posts: 8
    edited July 2014

    @honeybair - the doctor just told me it was the standard of care and there could be microscopic cells in the lymph nodes.  I asked her if she would do the surgery and she said, "yes I would do it!   I have three kids!"  That statement scared me.

    @meow13 -  I don't wear a sleeve.  I haven't been diagnosed with Lymphodema I just have extreme pain in my arm, underarm, chest and shoulder.  It's a burning stinging pain from the unnecessary lymph nod removal.  

    I'm glad you stuck to your guns. I agree that the doctors will do anything to our bodies to go after the cancer even if the risks far outweigh the benefits.  I just wish I had done more research.   

  • DontdoALND
    DontdoALND Member Posts: 8
    edited July 2014

    Debbieg. I can't imagine the pain you have had to endure losing your mother the same day as your MX. So sorry for your loss.  HUGS to you.

  • debbieg2010
    debbieg2010 Member Posts: 12
    edited July 2014

    DontdoALND, Thanks so much for your kind words and hugs. It has really been hard we were so close. I just have to take one day at a time. I never would have thought I would be going through all this physical pain  along with all the emotional pain. Thanks again and hugs to you. 

  • Bexter3
    Bexter3 Member Posts: 15
    edited July 2014

    hello sisters. I posted a while back about finally finding a pain specialist willing to take on my post mastectomy pain syndrome. Four years of excruciating pain, four years of never sleeping longer than 2 hours straight, 42 total doctors, and 12 pain specialists later my post mastectomy pain has gone from an unbearable, considered suicide daily as a solution to 5 days out of 7 very tolerable pain - still hurts, especially when weather changes or an active day BUT I am sleeping, and even dreaming again. Anyway, I had so many private messages wanting more specifics, I thought I'd share some reading articles, research and the lingo, or terminology, used for the procedure I had. First, it was not a nerve block and the diagnostic test (and actual procedure) to see if the nerves were responsible for the pain involves laying on a table, getting doped up while the doctor uses so high profile X-ray type machine (chemo ate the name of the machine) to see where the responsible nerves come out of the spine, s/he then manipulates the area with a thin pointy instrument. If touching the nerve replicates your pain, then you can have the procedure.... So here we go... Please don't think I am talking down to any of you, but to be truly educated about this miracle option, it's important to know the terminology and definitions.

    My 12th pain specialist said there was nothing that could be done, I started crying, thanked him for his time and started to leave. He said... Of course we could try a "RADIO FREQUENCY ABLATION OF THE INTERCOSTAL BRACHIAL NERVES."  The nerves that often get damaged in a mastectomy and/or lymphendectomy are called the intercostal and/or intercostal brachial nerves. These come out of the spinal column at the vertebrae, specifically (in my case the rib cage and armpit area) the THORACIC VERTEBRAE. They wrap around, up and/or over to the front --- and yes, one travels the shoulder blade. They cannot simply be seen at the spine because they travel out of the FACET JOINT AT THE SPINE.

    Radio frequency ablation means they use high UHF, or VHF, (darn chemo brain) radio frequency waves to cauterize (burn) the nerves where they come out of the spinal facet joint. (Don't worry you won't need antennae or rabbit ears, LOL).

    For me Thoracic nerve joints at T-1 through T-8. A total of 8 different vertebrae and nerves, were the ones that were damaged and caused the feelings of a butcher knife being stabbed in my arm pit, or 20 ice picks being slammed in my chest, phantom pains, ice cold bb's streaming, etc.

    Once the diagnostic test was done and he replicated the exact pains I had been experiencing, he knew the ablation would work. From then on, he used the term RHIZOTOMY to describe the procedure.

    Here is some stuff from the web that can help explain anything I missed. As I've told the numerous private messaging ladies, I'm not a doctor, I tried every possible treatment and drug out there. I still take pain medications - OxyContin low base dose and Percocet for breakthrough pain for the soft tissue damage. If you have PMPS, you already know you can take as much narcotics or opioids allowed and it doesn't even touch the nerve pain! I also take an antidepressants known to help nerve pain (Lyrica, Gabapentin, Noratryptaline are all examples - I am currently on a drug holiday from mine noratryptaline because it makes me fat and sleepy and helped speed up bladder cancer caused by Carboplatin). 

    I only had my right side T2-T8 cauterized, but need T-1 and at least 4 on the left side done because I still have a lot of pain in my right armpit and also pain on the left side.

    Here's the reading. Google "post mastectomy pain intercostal radio frequency ablation" or "mastectomy pain ablation" or "post mastectomy pain rhizotomy" or any combination, for more info. Good luck and don't stop talking to docs until you get some relief!

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC299044...

    http://nci.cu.edu.eg/lectures/Book%20Breast%20Canc...

    Start reading at page 232

    http://medind.nic.in/iad/t06/i5/iadt06i5p375.pdf

    Read radio frequency ablation on page 387

    If some of the links don't work, again just google the terms, you'll find lots to read. Good luck and please message me if you need more info. Bexter

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

    Bexter, I have not words to thank you for sharing this info. It opens a window of hope to think there are possible ways to minimize our painful journey. 

    Hope you continue to feel better 

  • Bexter3
    Bexter3 Member Posts: 15
    edited July 2014

    Enerva, there is hope, there is so much hope. I had given up. That PMPS interferes with every aspect of your life. I hope you can use the info to find your "almost cure." Very promising clinical trials show that over time almost all patients can become 100% pain free. The nerves sometimes grow back, but ya just get them burned off again. 

    This IS our hope and answer to millions of prayers. I encourage anyone with PMPS to become so well versed on the procedure that you can whip out the yellow pages and start going down the list of pain doctors near you. I live out where Jesus lost his sandals and have been to 5 cities and 3 states to get some help... I think time also helped. The fact that clinical trials are starting based on anecdotal information from patients like me is so promising that I don't think there is any reason for any of us to suffer... and I had over 14 infections in my mastectomy site, 21 surgeries and even 5 transplants of stem cells to help relieve the pain. None of those brought the relief the rhizotomy did. 

    We must take charge of our own health care and advocate for ourselves. My prayers and best wishes to everyone suffering PMPS. I'm on vacation in a hot humid city and oh my hell, the pain is crazy. I'll be glad to get back to the mountains and have my pain cut in half.

    Hugs and so much love to y all. I feel you, I've been there and am living proof there is help.

    Bexter

  • Chris_G
    Chris_G Member Posts: 6
    edited October 2014


    Hello, new member here and one month out from surgery and the pain is the same as it was the first day. Thanks for this suggestion to rub the area MelMcBee.. I'll try it but will wait a couple of weeks out since I'm a very slow healer. Wish I'd been prepared for this.. my doc gave me some very unrealistic expectations. I see some of us here have trouble with bras. I find I cannot wear one at all....even a sleep bra without discomfort.  Rather isolating as, if you go out and don't wear one, you get stared at.

  • honeybair
    honeybair Member Posts: 234
    edited October 2014

    Chris, so sorry to hear you are suffering.  We are all so different in how this surgery affects us.  I am fine where my breast was, for the most part, but have to rely on a little pillow a friend made for me whenever I lie down to sleep.  I also sleep a lot in a recliner.  Massaging your chest wall should help.  There are many references on the internet about getting relief from this surgery.  I have shoulder pain quite a bit and use heat and also exercise.  Wearing a heavy prosthesis helps as well.  I did not get reconstruction.  Experiencing breast cancer and all the treatments that it entails changes how we physically feel forever, I feel certain.  I will not even delve into the emotional aspect. 

    I do hope you can get the relief that you so desperately need.  

  • Chris_G
    Chris_G Member Posts: 6
    edited October 2014


    Thanks so much honeybair. I was not prepared for this.. he stated I'd be back to normal by now and able to do yoga..I can see that is probably months off. I am looking around on the internet as you say for various techniques for relief. I don't think they'll consider me for chronic pain treatment for another month..they told me this pain was 'normal' (really??) and to wait another 2 weeks. He'd told me I'd only experience 'numbness' in the area.  I think I'll skip the surgeon this time and go straight to a pain specialist. Ha! reconstruction is SO out of the question now!

    Honestly I haven't had as bad a time as most on here...didn't go through chemo or radiation and thought I'd 'skated' but chronic pain is still disappointing..especially since I've fought chronic illness for so many years before this.

    thanks for sharing your experience too honeybair...  no, things aren't the same but somehow we manage.

     

  • mlp730
    mlp730 Member Posts: 27
    edited October 2014

    Hi Chris,

    This blog has been so quiet lately, it has been forever since I've posted on here. I really think your thoughts of getting a pain doctor is your best bet!! I will be five years out this Tuesday and unfortunately still have pain. I don't know what I would do without my pain mgt dr because he is the only one who gets it!!  Both my plastic and breast surgeon have really done nothing for me but make me feel like I am an idiot who is the only one who has experienced this discomfort!! 

    Right now, I am having a "flare up" of pain which I honestly think it has something to do with the change in weather. My pain dr has put me on an anti-seizure med. I just started it so I can't really say whether it has helped or not. I cannot wear my prosthetics at all right now.  Well, enough about me but I think you would be headed in the right direction with a pain management dr.

    Feel better!!!

    Mary Lou

  • Chris_G
    Chris_G Member Posts: 6
    edited October 2014


    Hey Mary Lou

    Thanks so much for the encouragement. i'm having trouble wearing prosthetics too so I'm putting up with the pain...wearing sleep bras and pinning an old bra inset to the outside of it.... it still hurts but I just put up with it....I live alone and cannot be a shut in. Too depressing. Trying lanacaine but it doesn't touch it...ibuprofen etc. ...doesn't touch it either. Can't do the antiseizure or too many pain meds because of my compromised liver.

    Wow...we all have a time with this...5 years is a lot to put up with that...glad your doc is a good one. I'm sure he's doing the best he can.

    I'm thinking about looking into an intercostal nerve block or

    this: "Injection of a combination of bupivacaine and dexamethasone at well-defined sites of maximum pain and tenderness resolved pain at 93% of treated sites in patients with chronic neuropathic postmastectomy pain."  http://www.oncologypractice.com/the-oncology-report/single-view/novel-treatment-promising-for-chronic-neuropathic-postmastectomy-pain/717556ad8ca1684ae0e738c048aa604e.html

    BTW, how do you cope with not being able to wear prosthetics. I went out without it one day and got stares....very demoralizing.

  • whatnow
    whatnow Member Posts: 20
    edited October 2014

    I can remember this happening to me as well.  The pain was not awful, but it just never ended.  I didn't heal the same way I healed with my cesarean section, for example. It was a different, annoying pain.  I was working, but "self-medicating" (cocktails every night so I could sleep) - NOT a good answer. I am also very slow to heal (I had a root canal 3 months ago and I'm still in some pain). I think, all we really want is to know that we WILL get better.  We can deal with the pain, as long as we know we're on the right track. If that's how you're feeling - then know that I realized I was MUCH better with a legitimate prosthesis than a soft one.  The soft one is not heavy, of course. But it moves and rubs and - blech!  But the real one sits tight and feels SO much more real.  I second the opinion of whoever said to massage it. I know it's counter-intuitive ("don't touch it , it hurts!").  Because I could not even allow myself to brush my fingers across it, but I noticed I could allow a doc to examine it without any problem. The first time I had to permit that I was petrified.  Afterward, I thought...hmmm...that wasn't bad a all. So I forced myself to touch it more, from the edges, softly over all of it, etc.  It took a long time, (more than months...I'd say years) and I will have the numbness forever, but the pain is gone.  But, then, we all experience different things.  No one can know what you feel, and if you need pain relief then you just do.

    Good luck to you.

  • Chris_G
    Chris_G Member Posts: 6
    edited October 2014

    Hello Whatnow. Thank you SO much for that testimonial. I'm finding that each day I can 'take' a bit more. I'm wearing bras that hurt (and pinned my makeshift prosthesis to the outside of them..inside hurt too much) and I put up with the pain from the pressure but I notice now and then I get some relief. I  can fully believe the 'years not months' you mention here with the way it feels. My doc did not prepare me for this at all...in fact I asked and he said 'no..usually the pain is experienced with chemo...you'll just feel numb'. NOPE! Not so!  
    I'll start the rubbing process once all the surgical glue is off (its still peeling). I'm skipping the 'mastectomy' bras and finding more comfortable ones (Hanes stretchy). Even the sleep bras hurt sometimes. I dumped the temporary prosthesis and made my own. Boy, reconstruction surgery is SO not on the table.

    I don't mind the numbness...just want to get back to my yoga. And pain meds out of the question... if it's stronger than willow bark or boswellia (neither have worked and ibuprofen hasn't either) can't do it...liver is compromised. And not a candidate for anti-seizure meds (I think that's actually a really bad idea unless the suffering is unbearable).

    Thanks again whatnow...     a realistic answer is exactly what I needed. You've paid it forward!!

  • LOCommish
    LOCommish Member Posts: 3
    edited October 2014

    First - I just want to say how wonderful it is to have a place to exchange experiences.  So many of you have been through so much - and your strength and spirit is inspiring.   My story ... 

    Had double mastectomy 11/2013 - TE exchange 2/2014.  Starting around January, any exertion causes excruciating pain down both arms - leading to chest tightness and breathing difficulty.  Figured it would have ended with the exchange but no such luck.  I was beginning to think I was crazy (well, I am crazy but that's a story for another day) as all of the doctors & nurses told me they had never heard of anyone having that side effect from surgery.  Gee - I'm special.  Running through all types of doctors - neurologist believes it's a pinched nerve in the neck but I'm beginning to doubt that.  As I've read others have done - did the drugs (gabapentin, lyrica) with no improvement.  Gotten to where it now wakes me up at night.  My latest stop is the chiropractor.  Have had a long term relationship with him and I'm hoping that he's the one that helps.  He believes that it's the brachial plexus - and the more I read, the more I think he may be right.  Seems as though the fact that my pain is bi-lateral throws everyone off.  

    Sound familiar to anyone?

    Oh - and my implants are constantly cold.  

  • honeybair
    honeybair Member Posts: 234
    edited October 2014

    Hi LOC, so sorry to hear you are suffering so.  You are right.  The surgeons do not prepare us for the fact that many of us will have ongoing pain.  My pain is aching of my left shoulder, burning at the site of my mastectomy and aching in my back no doubt caused by the nerves that were damaged and the removal of my 22 lymph nodes.  I was prescribed a seizure drug also, but refused to take it.  My neighbor, who has lung cancer, was prescribed a lidocaine patch which stays on for 12 hours.  I wonder if that might be an option for us. I ache all the time but not enough to chase me to the relief drugs.  I just cannot sleep lying down in my bed, which makes it worse.  I am just grateful for my really comfortable lazy  boy recliner which I sleep in most of time now.

    I do hope you find relief in managing your pain.

  • mlp730
    mlp730 Member Posts: 27
    edited October 2014

    I've tried just about everything including the pain patches with no relief but what doesn't work for one doesn't mean that it may not be an option for you. I was most recently prescribed an anti-seizure medicine (Trileptol) which gave me terrible headaches as well as sleepless nights and very depressed. Needless to say I am off of this medication. I currently take Lyrica and OxyContin for breakthrough pain. 

    It's just a shame that the doctors don't recognize this very real pain! I am the only one at the Hershey Medical Center who ever had this!

    Prayers that we find an answer!!

    Mary Lou

  • LOCommish
    LOCommish Member Posts: 3
    edited October 2014

    Honeybair - Sorry to hear of your ongoing pain issues as well.  22 lymph nodes.  Yikes!  I am most fortunate that wasn't necessary for me.  My good friend had (I believe) 6-8 lymph nodes removed and has been battling lymphadema ever since.  The anti-seizure meds have done nothing for me except make me wonky.  It's all so very frustrating - but I don't have to tell you that!  I found the wedge pillow helped me sleep.  Unfortunately, I don't sleep still and whatever moving I do somehow makes the pain flare.  I have to say, when they said that the nerves would be damaged, I took that to mean they'd be deadened ... 

    Hopefully, this will all be nothing more than a bad memory for all of us soon.

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