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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Nash: Tightness extends around sides, under arms, upper back and I can feel my shoulders pulling towards the front. A hot soaking bath and a glass of wine helps a bit to relax the back and neck. I should check out the drinking thread Singing

  • nash
    nash Member Posts: 146
    edited September 2016

    magiclight, thanks for the input. Sometimes I wonder if my PS is right and that my issues are from mx alone, not from the reconstruction. The wine helps for sure.

  • Unknown
    Unknown
    edited September 2016

    hey, ladies...i have been reading posts & catching up. Just want to add that i am most surprised at how much the pain is overall ( breast, underarm,back) when i wear nothing! I can understand bras & such irritating after a time - they used to even before - but why does it hurt so much to wear nothing? I am down to a very small B/A so there's certainly not a lot of droop pressure.

    finally found a pain doc who tried some injections - lidocaine/novacaine & then some steriods. Worked for a whole 5 secs :( she was excited because i could lift my arm - trouble is i could do that before i came in ha! mobility is not my issue...just pain >sigh<

    i fell on my boob just a week after my last recon surgery & have always wondered if my implant was damaged or pushed into bad position - can they tell this with x-ray? or does it have to be the dreaded MRI? Of course my PS said he was sure it was fine..

  • peyton3
    peyton3 Member Posts: 20
    edited September 2016

    Just thought I would post an update and I am not sure if I am doing this right or not but here goes. I have had five sessions with a physical therapist where she does massage therapy and while it is relaxing I am not seeing any improvement. She did give me some exercises to do at home, rope pully and broom exercise and they do help my arms and some stretching to the chest muscles. I truly believe that my problems are because my implants are too big for the pocket they are in. Today I feel like they are swollen if that is even possible. I am trying to wait until I get to Florida to go to the Moffit Breast Cancer Center and get another opinion as to what I should do, but I am not sure I can wait that long. The discomfort and pain seems to get worse with time, not better. I read on line that you should not wait more than four months to do the exchange because of stretching, anyone know anything about this. It will be six months when I get to Florida.

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Peyton: I have not had reconstruction so hope others that have had it post a reply. Having said that, I am sorry you are still in pain while going through what I assume is your first round of PT even though you are six months post op. Hoping for pain free days in your future. Gentle hugs ((( )))))

  • nash
    nash Member Posts: 146
    edited September 2016

    Peyton, I went direct-to-implant in May 2015. A revision and implant exchange were planned for 3-6 months after the initial surgery. I didn't have the revision/exchange in that time window b/c I felt so awful.

    Although I'm better than I was, I still feel awful, 16 months later. But now the PS wants me to have my revision/exchange in hopes that releasing the pocket will help things a bit. So I'm having that done next month, at the 17 month mark. My PS said that waiting this long is actually an advantage surgically, since the foob has dropped/relaxed considerably from a year ago, and in her words, "she has more to work with".

  • peyton3
    peyton3 Member Posts: 20
    edited September 2016

    Thank you Magiclight and Nash. The PS that is going to do your exchange, is this your original PS or a new one? I am trying very hard to hang on because truthfully I don't want to get a PS in this area. They are all pretty much with the same hospital and circle of doctors. I personally feel that most doctors tend to stick together. I want someone that wants what is best for me and will tell me the truth. Call me crazy but you know your own body better than anyone and my gut feeling is that something is just not right. I feel like something is rubbing around the edges, with a burning, chaffing feeling. Like when you have a bra that rubs you, only this is not my bra this is on the inside. The day that I had my exchange my PS was running very late, he rushed me through the marking and then into surgery. He also took my port out while I was there and when I got home I was amazed at how awful the incision looked where he took out the port. When I brought this up he just blew me off and said it was no big deal. The surgeon that put it in never left a mark, you could not even tell where it was and she was not even a plastic surgeon. Then he gives me a card that says I have 500cc implant, Wow was I surprised. Hopefully you can understand why I do not trust him.

  • nash
    nash Member Posts: 146
    edited September 2016

    Peyton, yeah, it sure sounds like you need a new PS! And going out of the area is probably a good idea as well. The burning, chaffing you describe sounds like nerve damage, and that can happen with the best of surgeons, though. But yes, he sounds arrogant and unskilled, and I wouldn't go back either.

    I'm using the same PS b/c I do trust her. I don't think she did anything wrong with my surgery--I just think I had an unfortunate outcome.

  • peyton3
    peyton3 Member Posts: 20
    edited September 2016

    Thanks Nash, I am so glad to hear that you are happy with your PS, but very sorry to hear that you have gone through this for this long. I know that you are right and that perhaps I should not blame my PS for everything. I know that we are going to experience some discomfort and pain, that is to be expected. I just don't think it should be this bad. Keep me posted on your revision and I will keep you in my prayers for a much better outcome.

  • nash
    nash Member Posts: 146
    edited September 2016

    I totally agree it shouldn't be this bad. And I think a lot of the problem is that the PSs and PTs have a hard time understanding how bad the "really bad" end of the spectrum is. How I and you and the other women on this thread feel post-op is completely insane, and if this was the outcome every time, there would be major class action lawsuits to stop these surgeries. That's what frustrates me so much. The first PT place I tried early on suggested I relax my jaw. Really??? If that helped I wouldn't be here seeking help! Doh!

    And thanks for the prayers--I will keep you posted!!

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    I've learned something new about PMPS and it is that the tightness, pulling, iron bra is actually doing damage. I can try to explain this in the terms I know and it is that the iron bra feeling is actually contracting muscles in the chest which pull the shoulders toward the front and thus also cause the back muscles to get sore as they are working 24/7 to prevent that contracture. Even if I would do stretching exercises 2 hours a day (no way can I do that year in and year out), the 22 hours of muscles contracting across my chest wins out and slowly can cause respiratory problems. My pulmonologist just told me I now have significant restrictive lung disease., That PMPS is the cause is possible. Anyway, I'm now on Advair and repeat testing in 3 months. This blankety blank BC treatment just keep on giving.

    Googled restrictive lung disease and PMPS, but not surprisingly found nothing? Has anyone else experience difficulty breathing - expanding chest - along with PMPS?

  • peyton3
    peyton3 Member Posts: 20
    edited September 2016

    Oh Magiclight that is horrible. I can certainly see how this could happen. Sometimes I feel like I can't breath when those muscles clamp down. This is a living nightmare and I just can not believe that someone somewhere has not made this public. Oh what am I thinking, it's all about the money!!!! Cancer is a big business and all these things are just a part of it. It is a vicious circle and unfortunately it is people like us that pay the price. Hang in there!

  • nash
    nash Member Posts: 146
    edited September 2016

    Magiclight, I am so sorry to hear this as well.

    Yes, I have trouble breathing and expanding my chest as well. But I'm a uni, so the other lung is getting inflated. When I told my PS this early on, she actually yelled at me that I could breath fine. Yes, I trust her, but no, don't care for bedside manner a lot of the time!!

    Anyhow, please keep us posted on your lungs, and I hope the Advair helps.


  • Unknown
    Unknown
    edited September 2016

    i was also told at my last visit to deep massage the areas under my breast & arm & roll on a tennis ball ( which is virtually impossible) and just seemed to aggravated it - she had said it would hurt at first but eventually would " smooth out the seran wrap wrinkles" - has anyone had success with this method?

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Notbuyinit: I've laid on a ball I got from my myofascial massage sessions (they did not help) and it is placed between the shoulder blades and is meant to stretch out the chest. I've also used a large ball to lay over with likewise no improvement in pain or ROM, which by the way is excellent. Not sure 'seran wrap wrinkles' is a medical term!

    Nash: Yelling never helps and reminds me of the 'old days' before we learned that pain is what the patient says it is and difficulty breathing is what the patient says it is.

  • Mariangel43
    Mariangel43 Member Posts: 45
    edited September 2016

    OMG. I am having a continuing pain after the PS put the TE in place. There is pain on the lower half of the breast. I had the surgey f the biopsy and of the MX and they never hurt like this. I am getting used to it and sometimes it is softer than usual. I will be aware now of any complication of the final phase of reconstruction. My skin is hypersensitive and using a bra 24/7 is uncomfortable.

    I have been reading your posts and I remembered that my PS told me would use LD flap in case my skin was so damaged by radiation. I won't let him even if he is very good. Your comments are eye-opening. Besides I don't have much excess skin in my back. Anyway, I have enough skin from my tummy or he can use the excess part he is taking from my other breast. I didn't let him expand the TE more than 200 cc. More than 300 is too big for me and I want to get back to normal (I don't need a Las Vegas big boob).

  • minustwo
    minustwo Member Posts: 13,339
    edited September 2016

    Mariangel - Am I understanding correctly that you are still in the expansion phase with a TE in place? There are a couple of threads devoted to the exchange process that you might check out. I don't think any of us found the TE's comfortable. Mine hurt like he!! the entire time. There are some tricks, like filling just a little more, that you can read about at the exchange threads.

  • whippetmom
    whippetmom Member Posts: 6,028
    edited October 2016

    peyton.....It should absolutely be a covered revision. It is all a matter of proper "coding" and this is a surgery which would address a medical complication, namely, PMPS. However, research has shown that PMPS typically results from damage done during the initial mastectomy. I will post again something to discuss with your PS....rather than surgery....

    From my post, April of this year:

    ASCO News re: Treatment for PMPS

    I have not been to this thread for awhile, so I apologize if this is "old" news. In the event it is not, it is worth pursuing as a solution to chronic PMPS pain. A non-surgical, non-invasive treatment and so simple if it works.

    Deborah

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    If only treatment for PMPS were simple and straightforward then there sure would not be a need for this thread as well as for the far more extensive Facebook thread. So many women are looking for an effective treatment that does not include barely useful medications and injections that require sedation, pages of disclaimers, effectiveness that may be only a matter of minutes, etc, etc.

  • Mariangel43
    Mariangel43 Member Posts: 45
    edited October 2016

    Minustwo, Of the three surgeries I had undergone, the TE placement was the worst. He didn't tell me that it was going to hurt and I was not prepared. When I had to move away from bed or to the bathroom, I felt such stabbing pain and I had to bend myself. I didn't take the pain medications he gave me. Tylenol w/ codeine only gives me stomach ache and tramadol's side effect is hypotension. The night I was released from hospital I took half tramadol pill and in the morning I fainted. Since I didn't let him expand more than 200 cc and he filled a 100 cc on the time of the surgery, I had only one filling. I had two days of pain after that, and now if I don't make any undesirable motion, I don't have pain unless it is cloudy or rainy. The pain of the pectoral muscle subsided in intensity and in frequency for which I am really glad.

    I am noticing that I have a red line along the scar. It doesn't hurt because the area is numb, it is not hot but it is something new. Is that normal?

    You understood correctly. I still have my TE expanded but it doesn't hurt. I feel pressure but not pain. I am still in the evaluation phase for RT because when I read that in 40% of the cases implants get damaged with radiation, I decided to keep the TE and not having another surgery to change the implant. The problem is that I don't have the money to start radiation on the first place I was evaluated and I am looking for a second opinion (she will see me in Nov). This thing is delaying too much.

    Anyway, depending on what the new RO tells me, and if she considers all my petitions( no tattoos, no axillary irradiation, and shortening the number of sessions), I may have RT. If not, I am going back to the PS and finish the reconstruction. Good night, time to sleep cause I have to work tomorrow.

  • peyton3
    peyton3 Member Posts: 20
    edited October 2016

    Thank you so much for this information, I printed this out and plan to look into this more. The doctor that did my mastectomy is so well respected and so well thought of in this area I find it hard to believe she messed up. It is possible, but did you ever just have a gut feeling about something. Perhaps my distrust for my PS has clouded my judgement but I don't think so. My breasts are so heavy that when I sit down or drive they feel like they are pressing on my ribs and stomach, which in turn causes pain and nausea. I also feel like I have rods on both sides of each breast, like when you have a bra with lots of underwire. My physical therapist does not seem to think I have nerve damage because I am able to do all the arm stretches and movements. Thank again for your help.

  • Leslie13
    Leslie13 Member Posts: 30
    edited October 2016

    I had chronic pain before the double mastectomy from back and hip surgeries, but this has been one tough pain. Anytime you have surgery, nerves and muscles are damaged -- for good. When you take any muscles, like your pecs and stretch them to cover implants, it's going to hurt. But incisional pain alone is real too.

    I had one reconstruction harmed by too soon of PT. The implant needs gentle movement along the incision so you don't scar down. You can do self-massage or have someone help, but I'd wait 3 months for weight and strength based PT. Going to the pool and doing gentle arm circles and stretching can help avoid frozen shoulder.

    But the nerves are still angry. I've been on a lot of painkillers and they do help, but if they cause nausea, ask for meds that control it. You may need less with time, you may not. Start on low doses. I'm all for non-med things too, like lidocaine creams or patches or whatever else works for you

    But I just started Lyrica and have had amazing pain relief. Cymbalta's something I'd stay away from. Horrible side effects and an even more horrible withdrawal. Been on Gabapentin for years and never had this good of relief as with Lyrica. Don't be afraid of going to a Pain Management dr. You've had one of the most extensive surgeries out there, and trying to hold 2 heavy sacks of silicone on your chest hurts! Having large implants will cause more pain (duh), I selected medium girls. And I have days I think about going flat, but not since Lyrica.

    Another thing I recommend is going to a mastectomy speciality shop and getting fitted for long-lined high support bras. Some insurances will pay. Medicare pays for 3 speciality bras a year. No going braless. My plastic surgeon didn't stress using support, but it really helped. I went braless quite a bit in the beginning, and caused myself more pain. Bali has one wireless style that's really nice. It has a small pad that nicely covers imperfections, and doesn't dig into the incision, and goes about an inch below the incision line.

    Don't let others puritanical beliefs about meds guide your decisions. I don't know how long I have, but I'm not suffering more than necessary. The naysayers may change their tune if it was them, and you're in charge of you. It took Cancer for me to really be a good self advocate, but I'm finally to the point where other's uninformed opinions don't matter

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Peyton: I've become aware that when someone reports that a health professional 'thinks' something is or is not going on it means they do not know for sure. Time and again women on this site are admonished for 'thinking' they have cancer and told need to wait until there is a reliable 'know' that they have cancer. If your PT or doctor just thinks something it is not a diagnosis it is a guess. I have full range of motion and if my pain doc says what she thinks rather than what she knows then I'm in big trouble unless she is willing to do what it takes to move from thinking to knowing. Do get a second opinion, but again it is an opinion that you need to evaluate.

  • peyton3
    peyton3 Member Posts: 20
    edited October 2016

    I have not been on the site for awhile so I am just now seeing your post magiclight. I know you are right, and I am working on getting into a new plastic surgeon and hopefully getting some help. I had called the PS that my friend had used but I was not able to get in to her until December 12th. I took the appointment, but we are going to Florida for the winter and that means I have to come back to Ky to keep this appointment. I am seeing my oncologist on November 4th and I am hoping that he can get me into a PS at the Moffitt Breast Cancer Center in Florida. He was planning on referring me to an oncologist there while I am in Florida. I just know I have to do something because this just keeps getting worse. I don't know what implants are supposed to feel like but I know it can't be this. I hate to complain because I read so many terrible stories on this site that are much worse. This thing has consumed me and I hate it.

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Peyton3...I can sense your frustration with all of the new and painful feeling. I hope you are able to get into the cancer center in FL as it would be so much more convenient. Fingers crossed for pain free days in your future.

  • peyton3
    peyton3 Member Posts: 20
    edited October 2016

    How are you doing magiclight. I did not realize that it has been so long for you going through this. Did you ever do reconstruction? My heart goes out to you and I really appreciate all of your contributions to this site. This is the real world of breast cancer not the one that doctors try to paint. I guess part of my frustration is that two of my cancer buddies have passed away and another has just had more bad news. It just seems so unfair and I feel so helpless. Have you heard anything about breast cancer that spreads to the spine?

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017

    Peyton3: Thanks for your kind words. I did not have reconstruction so cannot blame it on implants. As for cancer spreading to the spine, it is possible. I searched for the word 'spine' in the topics list and there are numerous mentions that can be sorted through particularly the thread on stage IV breast cancer. So sorry to hear about your buddies. If you list your diagnosis and treatments it would be more helpful to all responding to your posts. For example, mine lists Mastectomy L and R, but does not indicate that I had reconstruction or am any medication treatment.

  • peyton3
    peyton3 Member Posts: 20
    edited October 2016

    Thanks magiclight. I think I have put this info in my profile. When I first got on this site I was a little nervous about sharing my info.

  • Unknown
    Unknown
    edited November 2016

    what upsets me most is that the PMPS has just gotten worse 3 years out. On top of which the end result "breast" looks nothing like one. Did anyone have good results from a TE reconstruction? Let's take a plastic disc & place in on a newly severed breast - close it up - fill it up to expand pec muscles that were never meant to be expanded - how did we ever believe this wouldn't create lasting pain?

    If i had known, i can honestly say i would not have done it. I ended up wearing a gel insert anyway to try & ease the pain.

    Sorry - in pain & venting :(

  • lisey
    lisey Member Posts: 300
    edited November 2016

    I agree Notbuyingit. I took out the TEs realizing I made a huge mistake in ripping apart my pec muscles for these plastic bags. Here is a new article from the New York Times that discusses the issues with implants and actually showcases being flat and fabulous. I was very happy to see word spreading.. http://www.nytimes.com/2016/11/01/well/live/going-flat-after-breast-cancer.html?_r=0

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