Post Mastectomy Pain Syndrome (PMPS)
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Yes I was just talking in terms of rehab. As far as screening, diagnosis, treatment etc there are several very nice breast centers in San Diego. It's the surgical aftermath that they don't have resources for.
UCSD has started referring women to my rehab people after I gave them all the info. Prior to that they only offered Pain Clinic, which was useless, and a very overworked lymphadema OT who is very good but only really deals with acute lymphadema. I had to learn about MFR and scar release methods from this site, and then seek that out on my own
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Nash: It sure takes a lot of people outside the health care system to provide input needed for determining the services BC patients really need post diagnosis and initial treatment. There is a great MFR center in Sedona that I have used quite a few times and may again, but cost of $224 per visit not covered by insurance is a bit steep.
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Yikes, $224 per visit is a bit hard to swallow! My chiro and CLT person aren't covered by insurance, either. I find it ironic that my insurance was willing to pay for endless visits to the PT place that was utterly clueless and had no idea how to help me, but won't cover the things that do help.
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OUCH Magic... that is high. I paid out of pocket for Oncology Rehab and it was $95 per session. I only had to do 3 sessions total because they were so effective on me. I feel 100% better - like my old self again. I forget I don't have boobs all the time and the iron bra is gone. She did say the sooner she can get to a Mastectomy patient (ideal is 3 weeks after surgery) the better.
I'm sorry there isn't a simliar clinic out there... for the price of a ticket you could have some amazing sessions here I suppose.0 -
Lisy: I had 4 sessions a few months after my BLM without any relief but am willing to try again. I think it is so expensive here because John Barnes is a leader in MFR therapy. As I've said in the past, I'm so glad to hear that someone has success in getting their life back. Stay well and happy.
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I have been reading all these posts and I think I am in shock. Why doesn't anyone ever tell you these things before you have the mastectomy and the reconstructive surgery? What an injustice to women. I had a bilateral skin sparing double mastectomy followed by reconstructive surgery on Feb.12th of this year. I had the silicone implants (Mentor Memory gels) put in on May 24th and it has been all down hill from there. I have the iron bra feeling, and the wet sticky feeling. At night the muscles clamp down so hard sometimes I think I am going to pass out. I have complained to my PS and he thinks it is all in my head, needless to say I am done with him. I don't know what to do next, try to find a massage therapist, pain management person or a new Plastic Surgeon. Any suggestions. I live in Northern Kentucky.
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Peyton, if you want to look into your options, there is a marvelous facebook group called Flat and Fabulous. You can see how women rock the flat. While I had the cookie sheet stuck to my front after getting the TEs removed and going flat... I didn't have pain and contractions. When I had those damn TEs in, I literally felt my muscles were pushing out the foreign bodies..my body simply refused to accept them. I'm so much better with them just out.
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Peyton: If you read the posting of people on this site asking for information preop, I believe it is rare that anyone mention PMPS or that iron bra you talk about. I know I am hesitant to do so and I think partially because those with PMPS are referred to the Facebook site as this topic is too real for women to have knowledge about preop. Doc's say lets not cross that bridge until we have to and then deny that they have ever had a patient with these symptoms or like your example, blame you as something 'in your head'. It is not in your head, it is a well documented consequence of breast cancer surgery.
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and the sad thing about that, as has been mentioned, the sooner you get the massage treatment to unball all the nerves + that were damaged, the less likely you will have lasting problems! I am 3 yrs out & have finally found someone who is helping with massage therapy & injections but it will be harder now that everything has had time to harden & tighten.
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Thanks ladies for your input. I am going to check around to see if there are any massage therapists in my area. Also considering seeking a new PS. I have finally figured out how to get back in here to see replies. I am trying to stay positive, I feel part of my problem is that my PS but too big of an implant in for the pocket he had to work with. Could be wrong but I think we know our bodies better than anyone.
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I had a R mastectomy in 2011, no reconstruction. I am a physical therapist and Feldenkrais practitioner who also has neuropathic pain from the surgery. Pain is a complex process, but there are many things that I've found can help. Feldenkrais Awareness Through Movement lessons and classes, if they are available in your area can really help with the pain that comes from muscular tightness, and changes in your movement pattern that happen in response to scars, healing, surgery. The movement lessons are easy to do and also affect your mood and attitude in a positive way. I have found that an experienced massage therapist is good for the skin and fascia tightness that continues long term. The pain that I have is daily, more in the morning and at night. I feel stabbing, itching and aching. I've used cannabis cream, anucreme (which has lidocaine in it), and am currently experimenting with Amazing Painless Cream. All of them help for a short while, so I change it up. The itching is the most annoying sensation as there's no way way to relieve this with simple scratching. I don't expect this will every go away, but I do think I can do something to reduce the discomfort. It is very soothing to place my hand on my skin and just hold and support the area. I do this a lot during the day...discretely of course. I also meditate and enjoy movement and walk a lot. When nerves are cut during surgery, they act out as they regrow. I do wish there was something topical to use that would calm the nerves down. I put a heating pad on my chest for 20 minutes and that sometimes helps.
This pain issue is something I wasn't told about before surgery, and my surgeon was surprised when I told her about the itching. Really?
For me, it's important to remember that I'm still here and that I can thrive even with this daily annoyance, but I have to do some personal work every day to keep it in perspective.
Professionally, in working with many women post mastectomy, It doesn't matter how long ago your surgery was, improvement is always possible. However, you can reduce the negative side effects of surgery by starting movement and therapy sooner. It's scary to go through all the treatment and fear is one of the emotions that increases pain. Maybe you can find some practice or class or movement or support that will also help you with that
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Thanks for your post Royaltea. Your sensation sounds very similar to mine. I have the unreachable deep itching and I have to hold my reconstructed breasts to stop it - itching doesn't help. It's the holding - sometimes pressing my arms into my chest, like you say, discretely, if I'm out in public. The worst is when I'm trying to go off to sleep at night but I am managing. Relaxation, massage and meditation help me. Also, biofeedback, I think it's called. The feeling is almost always there but I've taught myself not to focus on it.
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Hi lifelover,
I'm sorry you have this itching sensation, and thanks for sharing about it. It does help me to know that there is someone else learning to deal with it. I'm curious about any technique you might have used to teach yourself not to focus on it. I wish I could not focus on it but it seems the more I try not to focus, the more my attention is drawn to it. So I've been using the meditation technique of observing the sensation, how it is, how it may change.
If I can't hold my breast area, I incorporate the itching sensation into my experience, and say to myself something like, 'that's just what my chest feels like now'.. For sleeping, I find that if I lie on the mastectomy side on my front, the pressure of my body inhibits the sensation.
Maybe there is something that you do that will help me and others, too.
royaltea
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How do you differentiate between truncated le and PMPS?
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Royaltea, well, I use different but similar techniques. I'll try to explain what I do.
I do a meditation that involves scanning through my body parts from head to toe to notice tension and I try to relax that tension. Sometimes it takes a few minutes on body parts such as my breasts or my jaw. It gets easier with practice.
I also use self-hypnosis tapes. I've tried many different tapes - the important thing is to find someone you enjoy listening to. I find a man's voice more relaxing. I usually listen to tapes that are for relaxation, anxiety releasing or chronic pain. There are free tapes on youtube to listen to. However, I belong to an audiobook club called Audible, which is owned by Amazon. I pay a monthly fee to buy an audiobook a month. My favourite author to listen to right now is Glenn Harrold.
Mindfullness helps a lot of people. I do mindfulness meditation also. The author who really knows his stuff is Jon Kabat-Zinn. He works with patients with chronic pain and he's written quite a lot. His most well known book is Full Catastrophe Living. There are free meditations available from Andy Puddicombe on his website www.headspace.com - I really enjoy these.
The other technique that I use is pinching a bit of my hand (which I can do discreetly when I'm out and about) when I am in pain or very stressed and panicky. It's a technique I learned from neurolinguistic programming (NLP) and some meditation tapes. It helps me focus, or, take the focus away from my pain.
Debian, I don't know the difference between le and PMPS - I hope someone else can contribute to that conversation.
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Lifeover, Jon Kabat Zinn has been around for so long and his meditation training work with people in pain is extraordinary.
I was given Lidocaine patches for my PMPS but they did not work, so like many other women with chronic pain try many different things. I've tried a different approach...I got a puppy that keeps me in the present moment and active. I saw this video The present in another thread I wanted to share.
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Thanks, lifelover. I also like Jon Kabat-Zinn's recordings. I am a daily meditator and have observed how the itching and pain change during meditation. I like the distraction technique of pinching your hand. I'll give that a try to change the focus from itching to something else.
There's another great free resource for guided imagery for pain, healing, cancer, sleep and lots more at <www.kp.org/audio> and go to the podcasts by Belleruth Naprostek. This is offered by Kaiser Permanente which is a big health care system in California. I'll check out your suggestion of www.headspace.com, too.
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Magiclight - awwww . . . that is so cute - so adorable! My 3 cats help me a lot - they occupy a lot of my attention and they help me keep my cool.
Royaltea - thank's for that link. I had a quick listen and I like the speaker's voice so I will try the anxiety one later today
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Yesterday I went to my obgyn for my check up. This was my first time with this doctor since I had been going to my family doctor for my pap smears and exams. After being diagnosed with breast cancer, chemo, mastectomy followed by reconstruction surgery my oncologist felt I should have a gyn and I agree. I really liked her and we went over the problems that I am having with my implants, the iron bra feeling and the muscle contractures. The first thing she said was that she thought my implants were too big for the pocket they were in. I couldn't believe it because this is what I have been saying all along and no one would listen to me. I was already scheduled for PT and she told me that this was a good idea, and that I should give it at least six months to a year, but if I am still having these problems then I should consider having the implants removed and replaced with smaller ones. While I am happy to hear this I am also concerned with the cost. I asked her if my insurance would cover this and she said that could be a problem. Has anyone else been through this and what did you do. At this point I am so miserable most of the time I am ready to do most anything to get relief. However I must be realistic and consider all things.
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Peyton--I also had discomfort/iron bra after my implant surgery post bilateral mastectomy with tissue expanders. In addition, my implants migrated into my armpits when I reclined causing discomfort and a pulling sensation. I switched to a different plastic surgeon and had a revision with smaller/different shaped implants along with lateral capsulorrhaphies ("pocket work") to keep the implants where they belonged 19 months after the first implants were placed. I have BlueCross/BlueShield and the revision surgery was covered.
I was also encouraged to wait at least one year from the initial implant surgery before pursing a revision surgery. In that time, I saw a chiropractor and massage therapist, swam, did physical therapy exercises that were given to me post-mastectomy, and did lots of yoga. All of these things helped but in the end, nothing changed the fact that the implants migrated into my armpits when I reclined which made sleeping without pain non-existent. I pursued the revision and am much happier. I still suffer from discomfort on the side where lymph nodes were taken so I continue to practice yoga, swim, and see the chiropractor and massage therapist, however, my discomfort level has gone from a 8 to a 3 on most days.
My first plastic surgeon insisted on giving me larger tissue expanders/implants than I wanted and expressly discussed prior to my mastectomy. Hence, the switch to the second plastic surgeon was in my best interest. If your original plastic surgeon does not understand your desires, get a second (or third and fourth) opinion if necessary to find a plastic surgeon who you feel comfortable with.
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Thank you LoriWNY. It is so nice to be able to talk to other women that are going through similar situations. I do not know why my PS decided to go bigger because I was adamant about staying the same size and I could never understand why I was going through so much stretching if I did not want to go bigger. I even asked what size and shape was he going to use and he said he preferred the round smooth and something in the 400's. Three weeks after I was given a card saying I had 500cc put in. After doing some research I find that this is really big for a small person like myself. I am barely five foot and weigh about 125. I have complained about the pain which is only getting worse and he just ignores me, he is only interested in doing the nipple reconstruction and that is all he talks about. I finally told him that as long as I felt like this I was not going to do nipples when I am considering taking these out. He just doesn't get it and I am done with him. On a scale from 1-10 my pain level is about an 8, some nights a 10. I think as these boobs drop I feel the skin pulling and stretching and yes they feel like they have spread out under the arms. Thanks for your imput.
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Royal...I just listened to one of the podcasts from Kaiser and it was so relaxing. I've added it to my favorites list, so thanks for sharing. We really need to rely on moments of self healing because there is no easy fix out there for PMPS and all the other pains that come along with cancer treatment. Sorry you have to be on this thread but also glad you found it as a source of sharing and knowing you are not alone.
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magiclight, you are so right...'moments of self healing.' I like that. The moments do add up to help, it's a process for me of paying attention to what kind of self healing is called for, and then actually doing it.
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Peyton--I do not know where you are located but if you are in my area, you could be describing my first plastic surgeon. I had a difficult time "leaving him" for some strange sense of loyalty until someone finally said to me that he works for ME and I could "fire" him at any time! I'm so glad I "fired" him. I encourage you to seek a second opinion from a different plastic surgeon handling breast reconstruction. Be strong and remember that you are the "manager" of your own medical care. Keep us posted.
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Hi LoriWNY, You are so right. I think sometimes we feel like it must be us because after all they are the professionals. I finally realized that my PS only had his best interests at heart not mine. When my gyn confirmed what I had been thinking all along that my implants were too big that was the real turning point. I have started Physical therapy which consists of massage and some exercises that I can do at home. She asked me to give it al least 6 months so at the end of November if I am not doing any better then I am going to find another PS and get a second opinion on how to proceed. Perhaps I am just dreaming but I feel that if a PS is going to take on breast cancer patients he or she should have some type of protocol that addresses all these issues, instead of treating us all like we all fit into one box. What bothers me is that my General surgeon refers all her breast cancer patients to this doctor.
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Lori and Peyton, Looks like there is a name for the pain you are experiencing - post mastectomy reconstruction syndrome. When I searched for this syndrome title I only came up with PMPS, so do not know if the reconstruction syndrome is widely used/recognized. However, from the many posting on this and Facebook it does seem that so many women with reconstruction do experience the pain synonymous with PMPS.
I would like to see surgeons list this as a potential side effect of surgery and talk about it specifically prior to surgery and what they do throughout the surgery to minimize or prevent its occurrence. If they deny it is happening then they can continue to be sloppy during surgery and damage nerves unnecessarily.
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magiclight, I had actually showed this very same article on Post Mastectomy Reconstruction Syndrome to the drs at pain clinic, and they wouldn't even look at it. Despite the fact that my PS keeps insisting I have PMPS, I know I have PMRS, b/c my issues are muscle/fascia/soft tissue related (edema, spasms, restricted fascia), not nerve related. It's an important distinction, b/c the issues need to be handled differently.
I had lat flap reconstruction with an implant. In the beginning, it felt like my torso was being crushed in a vice. I couldn't breathe. Now, 16 months and a lot of rehab later, it feels like I have a rock duct taped to my chest, with the duct tape running around my side and across my upper back. If I lay on my non-surgery side, I feel perfectly fine. As soon as I get up and gravity kicks in, then I feel everything. There is no way that can be nerve damage IMO. I had my opinion confirmed by a 2nd opinion surgeon.
I was supposed to have a pocket revision 3 months post-op, but wasn't about to let anyone with a scalpel near me at that point. Now I'm willing to have the revision done in hopes it will loosen things up a bit. I'll be having that done next month at the 17 month mark.
peyton--I am also astounded that the surgeons don't have protocol in place to address post-reconstruction issues. My PS keeps insisting my problems are from the mx, not the reconstruction, and that it's all nerve damage. I knew she was wrong from the start, and had to seek out my own rehab protocol. While I don't feel terrific, at least I can breathe now, and my movement isn't as restricted as it was. I shared my rehab protocol with the PS's office, and now they are actually referring patients to my rehab people.
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Nash, my pain is likewise mostly absent when I am in bed, but the second I get up the tightness, tingling, pulling begins. I did not have reconstruction and yet our pain descriptions are similar. Guess that all in all whatever we have is poorly understood by surgeons.
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Most definitely poorly understood by surgeons, that's for sure!
I think I've asked you this before, magiclight, but refresh my memory. Does your tightness etc extend around your side and upper back? Or is it confined to your chest?
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I am having those same problems, at times feels like you are in a vice grip and that your chest is being crushed. Also the pulling stinging feeling around your back and sides. I also know what Lori is talking about when she says she feels like her implants have spread under her arm pits. These are all too real to just dismiss. My PS refuses to acknowledge any of these and this totally surprises me since he actually taught reconstructive surgery. SCARY!!!!! I think they do their thing and hope you are one of the lucky ones that all ends well, if not sorry nothing we can do for you. Perhaps if enough women came forward and spoke out maybe they would do something. To Lori, you asked if I was close to you, I am in Florence Kentucky. Anyone heard of a really good PS in this area?
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