Fill Out Your Profile to share more about you. Learn more...

Post Mastectomy Pain Syndrome (PMPS)

1235760

Comments

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

     Here is another one listing a few causes of pain related to masectomy.

    http://bja.oxfordjournals.org/cgi/content/full/87/1/88

  • jessicav
    jessicav Member Posts: 59
    edited February 2010
  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Thanks for posting that link, Jessica. It's a really good article. Putting the pieces of the puzzle together!

    I still haven't heard from my BS. I think he has moved on and doesn't want to deal with my problems anymore. My PS is very concerned and has called me a couple of times to talk. It really seems that he wasn't aware of PMPS. Now he's taking steps to educate his staff and says he will update me on more "developments" at my next appointment. As much as I don't want to go down to Boston for another appt. - I think it's worth following up with him in person. 

    I'm thinking about what you said (about not only educating after the fact but before the damage is done). Sometimes I feel very small but then sometimes I believe we can make a huge difference.

    Don't give up. Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Hi everyone,  I went to the PT today....... well I wanted to be hopeful.... The PT said he had 3 other women besides me with the PMPS.  He asked me a ton of questions.  He seemed to know what I was talking about and discribed the pain almost as I told him about it.  He said it was not LE and discribed what symptoms I would have if I had le.  He called what I have as, myofacial guarding and possable nerve inpingement.  He said since surgery I have probably hunched over to guard the pain, which I have.  He talked about nerve cutting and surgeon taking a chunk of my muscle under shoulder.  Maybe he could feel it was gone!!  He pushed on certain muscles below my front shoulders and sternum.  I told him it felt like my sternum was loose from the rib cage and he seemed to understand what I was saying.  He pushed into my upper back muscles too.  I say pushed cuz he said massage was something u get on a cruise ship.  He was with me for 11/2 hours, so I felt he gave me plenty  of time. BUT, now I am in tons of pain.  He said I should feel better immediatly.  Im so bummed out. I wanted this to work.  I usually have the most pain in the pm, but I was thinking I would feel better right away, cuz thats what he said.  He left strick instructions to not lift,push or pull anything.  SIGH!!  This so sux.  I am going to disneyworld tomorrow and I don't know how Im gonna do it!  I have a mini motorized scooter which I loved and have used many times, but I have to stir it and that hurts.  Bummer, bummer, bummmer...Thankks for listening. I might have more to add but can't think right now Hipp

    H

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    Hi Fog & Hip Chic-

    There must be an answer. Going to research mayofacial guarding and nerve impingement. This info is so helpful. Thinking of you and sending best wishes from NY. I feel your pain.

    Jessica

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    Hi ladies-

     http://www.cancersupportivecare.com/pbtpshandout.php

    Here is a hand-out to give your doctors. I would think the doctors who wrote it would be a good resource for care. Note that they thank Susan G Komen SF Bay Area Affilaite for support of project.

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hipp - That is SO frustrating. But I will say that after Physical Therapy (I had myofacial release every week for months) the first 24 hours were much, much worse. Then gradually I felt better, eventually feeling better than before the treatment. I hope that will be the case for you. I hope the next 24 hours you will feel better and better. Keep us posted.

    Jessica - I emailed Dr. Wascher after reading one of his articles. He sent me the link to that handout and said I could email it to any doctor/patient I wanted. He also recommended that I find a fellowship trained pain specialist.  I feel like I'm going around in circles. The neurologist told me my options and none of them address the cause of the pain. Only the symptoms. And I'm not ready to take medicine or have a nerve block. 

    My third acupuncture appointment is tomorrow. I'm going to tell her to go ahead and use needles rather than suction cups. Will let you know if it works. Did I mention that I have started a water aerobics class? It's hard to get into a bathing suit and in the pool by 8:00 am but so far seems to be a wonderful way of moving without hurting too much. Hugs to you. Fog

  • kookiesmom
    kookiesmom Member Posts: 57
    edited February 2010

    Hipp - I also have had myofacial release done and I always hurt more the day after especially when she did a "deep" release.  Then just like Fogandroses said it would get better gradually.  It does suck - so sorry you are hurting.  Got any muscle relaxants? That used to help me when I was guarding like you said.

    I went to the LE therapist and she gave me my first drainage massage this morning as well as taught me exercises to do twice a day.  I go again tomorrow morning.  I went to the medical store to try and get the compression bra but they didn't have my size so now have to wait a few days for it to come in.  I did get the sleeve however.  I will be going 3 times a week for a few weeks and hopefully by then will be under control.  The therapist told me it really takes a year for the surgical pains to subside in her experience.  It won't be a year for me until March for BMX and Aug. for exchange so I guess I should try to be more patient.  However the articles that I have read links from here have mentioned 3 month - 6 months post surgery pain isn't normal. Who knows...

     Fog- Good for you doing water aerobics class at 8:00 a.m!  Sounds great!!!  Let us know how your accupuncture goes.

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    This information has been great.  I have posted before on this and brought up on other forums about the clips that were left in my armpit/side after the mastectomy.  I had my double mastectomy in July 07...since then I have done so much of what all of you are talking about for PMPS and yes I feel like I am going in circles.

      I noted just a few days ago I had an xray for other reasons and it showed that I have approx 27 clips in  my armpit (litterly on top of each other...bunched)  I had an appt yesterday with my surgeon to find out why these clips were left in me and that is where the severe pain is (which they all know this anyway)  He was very short with me and said that it is standard procedure to leave these titaneaum clips in forever...I said " 20plus clips with a 4inch area?"  and that is where I have burning sensations, itching and constant pain.  Why had I not been informed that these were left in  me?  answer "standard procedure"...he litterly had his hand on  the door knob to get out of the room.  It was like I was thrown  out as an outcast.   Also there is no notation in my hospital records that these were in me (first place) or left in me for permenant basis.

    Ok  so here is where I am going with this...If my surgeon is telling me this is standard procedure could anyone of you Please ...please ...please let me know if these titanium clips were left in you for the ancillary dissection and if they were is that where the majority of your pain is.  Why wouldnt that make sense..the clips are three pronged about 1/3 inch long.  

    I feel like I am some crazy woman but if this is the source of my pain I want them out of me.

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Smart - I personally don't have clips on my left side and that's where I suffer from PMPS. I had never heard of someone having lots of clips under their arm but I found this interesting quote from an interview with this surgeon about a new tool that eliminates the need for clips during axillary dissection. She indicates that it is standard procedure to use lots of clips. But definitely, keep pushing for an answer about your pain. It very well could be a neuroma where the clips are located. Hugs, Fog

    ANNE MARIE WALLACE, MD, FACS: Right, right. And the other thing, too, is I
    traditionally would clip my nerve because my husband is a pain specialist and he's
    taught me all these things about neuropathy, and I'm a believer that when you do
    divide sensory nerves, that if you cut off their blood supply and clip them that maybe
    they won't travel to the skin and cause a neuroma. There's no data on that, but
    that's just kind of my belief. And so now I've used the shears to actually kind of
    ligate the nerve and it just seals the nerve off so the blood supply to it is cut off and
    it's not going to grow back towards the skin and cause a neuroma. I haven't had any
    problems so far. We do have a couple new questions from the audience. The first one
    is: have I seen a reduction in OR time since using the FOCUS? And I think definitely.
    You know, certainly in the axillary node dissections, because there isn't that constant
    asking for clips. I think -- the clip appliers that I was using contained, like 10-15
    clips, and I was very aggressive about clipping because I don't like seromas, I don't
    like fluid collections. And so we would go through, you know, many clip appliers and
    in our OR, we keep like one in the OR and then the nurse would have to go running
    for the second one
    , and so we were always waiting and we were waiting for it to be
    passed to us, we were waiting for the scissors to divide in between. 

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    Thank you Fog..did you have your lymph nodes removed from your left side

    I find the interview interesting that she is using shears now and that that eliminates the blood without clips...she is also saying that she was aggressive with 10 to 15..my surgeon was Very aggressive evidently.  I am going to look into the neuroma..thank you again...you are so very nice to look that up for me.! 

    Anyone else with clips would please let me know how many you may have.  I had 13 lymph nodes removed and now have 27 clips left in me...plus one that is left next to my heart (I left that out in my previous notes)

  • awb
    awb Member Posts: 213
    edited February 2010

    kookiemom-----the OTR/L is an occupational therapist; sounds like they are further certified in lymphedema management therapy. (I'm a PT)

    Anne

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Fog, I live in Florida, so I am in the pool all summer everyday.  The water is 90 degrees and so is the air.  I hurt more when I get out out the pool then when I go in.  What a bummer, I do miss going in the pool now though, but its too cold.  I have live in Florida for 41/2 years so I get cold if the weather is below 70 degrees lol.  So in Maine right now at 8:00 am its wayyyyyyyyy cold.  Keep warm love Hipp

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    OK..Hipchik..dont rub it in..I just came back from your freezing weather down there and now in the lovely Ohio 20something degrees.  I am new at this so I thought Fog on her tag was like me...myself and I ..I didnot think of Maine...ME..

    I am trying to be able to follow all of what is going on and hope that I can help someone.  It seems like you all have been tackling the PMPS for some time...I have been struggling alone for the past two years.  I have asked for help from my PC at James and ya know there is not a real positive attitude there.   It seems they are irritated when I am inquiring too much.  Now that I had that xray, I am like a bad case of the swine flu.  I am not trying to say that I am better than anyone and am very very accomadating to anyone if it makes sense..if it doesnt then just tell me why and then I will probably see what they are talking about.(libra in me) and understand. 

    I have done all that you did hipchick...I swear I had the same conversation on  the pushing and maybe they took something out...I also did the Lymhpatic massages for over six months and I swear it made me swell.  Since then over a year I have done nothing but take pain medication and my arm is at normal size and has the exact same pain it did at the beginning two and 1/2 yrs ago.  It has never gone away and had only increased with the massages ..never did the  acupunture thou.  HMMM maybe I should and see if the needle hits one of the clips.

    I need to be positive which if you ever met me I am the sickning positive because everyone thinks that I am the happiest person with this ...why bring them down...Hey dont mean to bring anyone down but now I am hellbent to find out about titanium clips left in  your body without your knowledge or on any records of the surgery.  I will find out and let everyone know...if it is so common I dont understand why I cannont find ANYONE that will show me that.  My surgeon also said when I asked to see that it is confidential...I know that but would you not think there is a way to see an xray that looks like mine??

    IChikt is a bummer to hurt when the water is 90 degrees...and 70 does suck but throw some epsom salts in there and your body will enjoy..seriously..I think I will go take a bath now.

    thank you for listening and I so hope that anyone that has the pain that we have can get it taken care of ..I think it is something that is not individual to all of us..which is how it is being treated because they have not put the research into it.  I feel that once they have scooped me out and been really nice and sympathetic that you are out the door and the symtoms are for you to deal with.  They are just throwing darts at a board that isnt even there...except with a bullseye that says get along little susie handle it yourself....and dont question us...we have our new patients.

    I cant believe I will hit submit on this, but it is what my fingers just typed away. Love to you all

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    Hi Ladies-

    Fog-Thanks for info re Dr. Wascher. Just checking back in after a few days trying to not think about PMPS but not really possible.

    Thinking of you all and hoping we find relief. You are not alone.

     Jessica

    Jessica

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    boy..sorry for the long response and hope it dosent end the PMPS just forgo my blip in this unless you have any response.

    this forum is to vital to just look at what the end person is talking about ....all help onPMPS is needed.

    PLEASE everyone give their situation and any resolution

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hi All, it's still freezing up here. And probably in New York, too...I guess it builds character? The pool was chilly this morning. The class is a dozen ladies in their 70's and 80's, my daughter and myself. We were celebrating because my daughter was accepted to medical school yesterday. The ladies were so thrilled. They are taking us out for muffins and "something" to put in the coffee!!! That should warm us up.

    Smart, I'm glad you hit Submit. You said it like it is! I think you're going to find relief from your pain because there are 20 something clips under your arm. How can that not hurt? I am going to see my PS on Tuesday afternoon and you can bet I'll ask him if it's normal for that many clips to be left. I'm going to get an update on what he's been doing to make sure PMPS is recognized. Think insurance will cover it? Ha.

    I had acupuncture today and so far I feel about the same but I think it's important to have hope. My acupuncturist says she can help me and I believe her. She also said my brain is weak - so she really knows her stuff.:)

    Jessica -  thank you for thinking about us even when you are hurting. It really does help to know we're not alone. Love to you all, Fog

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    Smart23:

    I am a libra too. Your message was very helpful. We get it here. I am glad you pressed send.

    Jessica

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    congrats fog on med school.  Hopefully we will have someone who will find someone to help us.  I don't want to give up!!

  • makingway
    makingway Member Posts: 465
    edited February 2010

    Oh Great! Another thing 'They' negleted to tell me about...clips. That's probably why I feel 2 bumps that haven't gone away since my mx. When I asked my doctor about them, she told me it was my ribs...and she's supposed to know human anatomy....pfff~!

    I am sick of doctors blowing me off when I tell them I am in pain. They look at me as if I have a bad attitude. How dare I, afterall they took away the cancer-I should be greatful. Well I'm NOT grateful! I'm not happy being in constant pain, and I'm not happy that I can no longer use my arm/chest muscles as they once functioned. I don't know if I have LE or PMPS or both. I will have to read the links. I will have to diagnose myself since nobody else seems to give a damn. 

  • Gayleebug
    Gayleebug Member Posts: 12
    edited February 2010

    Hi all

    Thank you so much for all the info on PMPS.  Had my 3-month checkup with my medical onc yesterday & gave him a copy of the article & handout on Post Breast Therapy Pain Syndrome after explaining all the pain I'm still continuing to have.  He did his physical exam and agreed with me that I seem to be "tethered" in the axilla with scar tissue -- looks something like cording but it's not.  I have stage 2 of my DIEP reconstruction scheduled for the end of the month -- he just whipped out his cell phone, called the PS on the spot and asked if she could get into the armpit and see what she could do to remove the scar tissue, and she agreed!  This would save me a separate surgery, fer sure.

    Maybe there some hope for me yet in getting rid of the constant pain, and finally getting my full range of motion back!  (I have a loss of 40 degrees after close to a year of PT off and on.)  He (my med onc) said I'd have to immediately start more PT (intensive stretching) after the surgery to preclude more scar tissue forming.

    I know surgery in the the axilla may aggravate my lymphedema (I have a "mild" case -- but not mild to me)  but I am actually hoping my LE may get better after the surgery if it allows the lymph to flow more freely.

    He said he's not aware of any clips being left behind ... I guess the PS will find out if any when she gets in there.

    makingway--I totally feel your frustration.  Research is the key and putting it in front of their faces and asking "could it be this ... or this ... or this?" and not giving up until you get the answers you need.  I send you a hug.

    Smart -- you are sooooo smart ... is that how you picked your name?  Tongue out 

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    I had my reconstruction Tue.  I did ask the PS about the clips.  He said it was common practice.  If I had know  about the clips I would have be scared to death having a MRI.

    I realized about an hour afer I woke up that I do not have any pain.  I just thought it was the pain meds doing a number on that too.  I am happy to report that I do  not have that pain at all.  I am so thrilled!  I have a flat tummy, two new girls and not pain.  I had three areas that he unbundled the nerves in.  I had one nuromer attached to the leader under my arm.  I don't have words to tell you how happy I am!

    Good luck to all of you.  I will always remember that pain.

    Bettye

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    wow betty, Thats great news!!  I want someone to tell me I have a bundle of nerves or anything to give me my life back.  Im not gonna give up. Hugs Hipp

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Bettye, I am SOOOOO happy for you!!!!  You give us all hope. Take good care of yourself and rest. Don't do too much happy dancing until you've had time to heal. Wow, Wow, Wow!!!!!! And God bless your surgeon.

    I'm off to the pool with a smile on my face for you. Love, Fog

  • Gayleebug
    Gayleebug Member Posts: 12
    edited February 2010

    Great news, Bettye!   Did you have DIEP?

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    Bettye...that is great news!!  I want to go have it done...asap.  Thank you for asking the PS about the clips.  Yesterday I dropped by my radiation oncologist who's team is just fantastic and friendly to show them the xray with all my clips...and they told me the same as what yours did It is common practice to use the titantium clips.  Granted they said that my surgeon  went a little overboard but they said that the more you pull the incision together(more clips) maybe his goal was for it to heal faster.  They also said that this has become so common over the last 5 to 6 years (the same amount of time that PMPS has really taken off)  So I told them I was talking in this forum and that most of us had never ever heard of or thought clips were left in their body.  My  RN said "Kate if someone would have asked you prior to this xray you would have said that you had no clips right?"   Well EXACTLY..of course no one told me I have clips.

    SOOO...my new theory is that maybe we all have these clips and that could be a major part of our pain??? Am I just WAY out there or what.  Does that make any sense??  Unless I had had that xray I would have never known...it is not even notated in my medical records that outline the surgery that clips were left in my body or for that matter even used in  the procedure

      Bettye ...did your PS say you had them too? or just that it is common?.  I am going to see my PS on the 18th...he is not part of  the University and really like him...havent seen him for over a year and 1/2 so I know he will discuss this with me and be up front with me and at least not make me feel like some idiot like my surgeon did this week. Maybe if I proceed with recontruction then these clips will come out.

    Fog congrats on your daughter that is great!! skimmingthelake Smart is my maiden name..always liked it ..should have kept it!!

    Will let you know if I find out more on these titanium clips...please let me know if anyone finds out they have them and didnt know it!

    Rambling again

    Smart 

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    My surgeon did not tell me about the clips.  I saw a note in my CT report or chest Xray.  I just ask this Dr. so that I could report to you.  I had a neuroma attached to the ligament going to my arm and also one where the nodes were taken.  He said he unbundled the nerves and removed the neuroma.  I can tell you I am so grateful to him.  I feel like a new person.  I have had no pain with this reconstruction.  My nurse said it might be because I have had pain 24/7 for three years.  It  makes sense and is such a relief.

    Bettye 

  • jessicav
    jessicav Member Posts: 59
    edited February 2010

    Bettye

    Who is your PS. I dream of being pain free. Who helped you?

    Fantastic. So happy to hear!!

    Jessica

  • smart23
    smart23 Member Posts: 8
    edited February 2010

    BettyEe..thank you for your response.  it is interesting that you found out about your clips in the reading of the CTscan.  I am so happy about your reconstruction...it has given me hope.

    Otherwise I think I put a kaboot to the great thing you gals had going on.  I am sorry I got hung up on clips being the cause of PMPS.

    Please continue

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Smart - I think your question about clips is intersting and important. My theory is that PMPS that is caused by something interfering with a nerve (like clips or scar tissue) is fixable. My PMPS has no obvious cause - just an "unhappy" nerve due to trauma during surgery. I'm beginning to accept that it will take years for me to heal. But I think you'll find relief much sooner. Please don't give up.

    I'm heading to Boston tomorrow to meet with my PS about followup procedures he's working on to make sure other patients with chronic pain don't fall through the cracks. I'm really interested to hear what he has to say. I will update here tomorrow night.

    Also, I'm wondering now if I had been informed of the high rate of PMPS following breast surgery - if I would have chosen to have a unilateral rather than bilateral mx. Does anyone have any thoughts on that? I'm trying to put myself back in that terrified state of mind when I decided on the most aggressive treatment. Honestly, I don't know if education would have changed my mind. But I would have at least made an informed choice. The thing that haunts me is that I remember saying to my husband that I didn't want to create a chronic problem but I wanted to be sure I didn't get BC twice like my grandmother did (10 yrs. apart). And I had this feeling that I might be trading peace of mind for something else. Sorry I'm rambling...

    Water aerobics is really really helping. Just floating around is heavenly. I am finally moving again.

    Love to you all. Fog