Post Mastectomy Pain Syndrome (PMPS)
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Lburwell, much of what you're describing sounds like truncal lymphedema. It can affect breasts, chest, back--even the side and axilla. It can be extremely painful, and over-the-counter pain meds don't touch it. Without treatment, bras are intolerable and it's very limiting to activities that involve the arms in any way. The pain may even move around from spot to spot and be hard to pinpoint, making the entire breast (or even the whole trunk) miserable. The infections you mention are also indicative of possible lymphedema, both because infection can trigger or make lymphedema worse, and because the presence of untreated (or undiagnosed) lymphedema makes infection more likely and harder to treat effectively.
The medical professionals who evaluate and treat lymphedema are well-trained lymphedema therapists. You can get a referral to one from any doctor on your team. Treating truncal lymphedema with Complete Decongestive Therapy reduces or eliminates pain and greatly reduces your risk of further infection. It's also non-invasive and actually quite comfortable. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAnd here's more information about truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmPlease stay in touch and let us know what you discover. Gentle hugs,
Binney0 -
and to add to Binney's - my LE therapist recommended a compression bra for day time and a JoviPak w/sports bra for night time, along with the MLD for my truncal LE. It worked very well.
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I have been having a lot of pain on the top of my hand. I am not sure if the ligament or tendons are too tight but it hurts when I curl my wrist. Does anyone have the same pain? I felt it when I had my mastectomy but it has been better until now.
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Mine do, but I'm taking and AI too, so it's hard to figure out which pain is a side effect of which treatment
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Hi, I am new to this discussion board. I have had PMPS since my bilateral mastectomy surgery in 2008. I have silicone implants. They have always been tight and hard. I have been everywhere and tried every treatment known to man over the past 5 years. I am now on Neurontin 300 mg. three times a day and Celebrex 200 mg. two times a day. These meds seem to help. I have recently found a pain Dr. who does injections of Phenal into my back to to block the nerves. It has helped. It is supposed to last for 6 months. Also botox injections are supposed to help. I now have capsular contractions in both breasts, which got worse when I had a car accident. A new PS gave me several options that may help my pain. I am not sure what to do?? Have to go, but will give more info later. Maggi
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Maggi,
Im sorry to hear your terrible troubles and that you have been dealing with them for so long.
I can relate on a certain level. Thought when I was diagnosed it would be rough, but would get right through it and move on. The severe side effects that some of us unfortunate patients ended up make ugly aftermath of BC surgeries painful and frustrating because so many PSs dont get it and even some family and friends think since you are alive then you are fine.
Have any of your doctors suggested removing the implants?
Or doing a revision to remove painful scar tissue and contracture?
Or removing the failed implants and having natural breast reconstruction using your own fat and tissue (DIEP or SGAP) by a highly skilled microsurgeon who can repair some issues that may be causing your pain. Of course there are no guarantees with those options.
The revision i had at one institution was worthless and surgeon made it worse and didnt bother to clean out chunks of scar tissue. Four weeks layer implant extruded through radiated breast skin and had to be removed.
Then I researched and found a microsurgeon that Im totally comfortable with who did repairs and created my new breasts with natural breast reconstruction. He and his partner only work with breast cancer patients which i think makes a huge difference in high skill level but also understanding breast cancer patients.
I wish you the best in your personal decisions and hope you get major improvement to your quality of life.0 -
Hi Pinkheart,
Thanks for responding to my recent discussion. I am really stuck right now and need some input from as many of you as possible. My PMPS has been with me since 2008. I have learned over the years to just cope with it. However< I now have capsular contractures as well in both breasts, which seems to have been exccerbated by a recent car accident, where it was high impact. I don't have much trust in the PS's in Pgh. I need a PS in the Pennsyvania area that is highly skilled in breast revisions, more specifically in breast explantation. I have seen a Dr. Gedge Rossen at John's Hopkins, but my insurance will not cover surgery if done outside of PA.
I'm told I can have what's called a capsulotomy (removal of implants, then cutting up of the capsule to relieve the pressure, then new implants back in). Or I can have both capsules removed and new implants put in. My worry is further nerve damage. I already have so much nerve pain in my chest, should I risk more sugery and subsequent nerve damage?
I am seriously thinking of having everything taken off for good. I am 58 and know of the emotional impact it may have, but my family is just plain worn out. I have to think of them.
Anyone know of some highly skilled PS's in state of PA? Or anywhere for that matter?
"Natural" breast reconstruction is not for me. I need my muscles and cannot go through the pain and suffering of the recovery.
Regards,
Maggi
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Maggie,
Natural breast reconstruction (DIEP, SGAP) DOES NOT affect the muscles.
Do NOT do TRAM or Lat Flap options as those are the surgeries where you DO lose muscle.
Have you tried U of Penn? Also go to the implant issues threads because most of those patients have PMPS and problem implants.
Implant explantation is easy if that is all you are having done. Still would want a doctor to smooth things out. Some women have them removed, wait a year or two, and then rethink about natural breast recon. Try to get as many opinions as you can.
That's too bad you have to stay in Pennsylvania. I travel out of state to Charleston, SC to Dr. Richard Kline. He takes ALL insurance. There may be a waiver in your insurance that if you can't find surgeon with skills to take care of your problems, that you can go out of state.
http://www.naturalbreastreconstruction.com/kline.aspx
Dr. Kline is a well known microsurgeon in the U.S. He also is working on some nerve damage issues for me. You really need to find microsurgeons/plastic surgeons who only work on breast cancer patients if you are a patient with a high degree of complications -- like me.
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Hi Lisa,
I have been taking neurontin for many years. Very few side effects, except tiredness in the beginning, but leveled off. I have not been able to tolerate a bra. it seems to hurt more. Your intercostal brachial nerves were damaged during your surgery, as you know. There are new treatments in the form of injections that help to block the nerves. Unfortunately, there is no way to heal the nerves. I was also told that the pain would subside. The injections helped very much, but my pain has not subsided 5 years later. I hope your case is different.
Maggi
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Dear Fog,
I am replying to an old post because I had my mastectomies around the same time as you did and had some of the same experiences you had. The reason why breast surgeons and PS don't tell you about PMPS or don't validate your symptoms is because PMPS is caused by surgical error. It would open up them or their colleagues to a lawsuit. They will lie as much as they need to. Neurologists, on the other hand, are not surgeons, and will usually tell it like it is.
Maggi
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Hi Maggi,
I had a bmx in Oct 2009 with immediate reconstruction. I've had pain since day one and continue to have pain. It has improved but it's been a long bumpy road. I did have a capsulotomy shortly after my exchange and it truly did nothing. It was a waste for me. I deconstructed 6 months later because I just couldn't take it anymore. I had not been able to wear a bra from day one. I developed an infection which I was hospitalized for. This was prior to the exchange. As a matter of fact, my PS chose to move the exchange up in order to salvage the reconstruction. After my deconstruction, my pain continued and I was getting absolutely nowhere with either my PS or BS because I was the only patient that ever experienced PMPS
Right!!! How do we ever prove it's surgical error like we know it is??? I now go to U of Penn to the pain clinic there. I've been going there for a year and although I'm not where I want to be, there is definitely an improvement. I now take 300 mg on Lyrica, 30 mg of morphine 3 times per day. I was originally seen by a PS at Penn, Dr. Joseph Serletti, who came highly recommended to me but when I had my consult with him, he didn't want to suggest anything until my pain issue was better. He recommended I see the pain clinic at U of Penn. I got the impression that he really didn't want to touch another surgeon's problem. So that is where I'm at, still going to Phila (2 hrs from me) every 2 months. It's worth it to me because for the very very first time, I've found a dr. who believes me, tells the truth and has said that he sees this all the time!! How can 2 major hospitals less than 100 miles apart have such different stories???Mary Lou
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Maggi, I had this problem, too. My implants were replaced several times, but always the pain and contractions came back. The problem was a neroma (cut nerve), the implant with radiated skin (which is not a good combo, but no one told me that) and a lot of scarring.
I went to see a lot of docs about free flap surgery, including Dr. Serletti, down at U Penn. He's really good, perhaps you should see him. I really wanted a DIEP, but I have a clotting disorder, so no one wanted to do a true free flap on me. And I'm athletic and was dead set against doing ANYTHING that would move a muscle, such as a TRAM, which is what everyone tried to sell me.
I ended up doing fat grafting with the Brava system. Google fatgraftpatients.com and you'll find a community board about it where you can see pics. It's a fairly new procedure. They lipo your own fat and inject it into your breast area to make a mound. The downside is it takes several operations--they can't transfer too much fat at a time, or it won't survive--and you have to wear a large suction cup on your chest at night for months. I was pretty aghast when I found out about the protocol and didn't think I could go through with it, but I got used to it quickly.
On my first procedure, my doc put in a smaller implant with some fat, then in the second procedure, she took that implant out completely and now I'm implant free. She also covered the neuroma with fat.
It's made such a huge difference. I HATED those implants. Now the pain is gone.
A lot of the ladies here are big boosters for the free flaps, and I wish I could have gone that route, too. But if for some reason you don't want to do a flap, you should research the fat grafting, it's a good option.
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kriserts,
I, too, wish I could have gone the BRAVA route from the get go. (I've got lots of scars from so many surgeries from BMX, failed implants, etc..) Does insurance pay for it? If not, do you have a ball park figure?
I have a neuroma that my microsurgeon is going to "fix" at next surgery. Are there different types of neuromas?
Do you think a patient with major skin rashes/reactions and radiation damaged breast would do okay with the BRAVA cup, or can it cause rash?
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maybe I have neuroma? am going to ask my doc. I just have this lingering small amount of tightness to breast area. I really thought it would go away after diep last oct. its gotten better. just little bit of tightness. have to stretch it out daily. I fought with cording twice. see my PS at PRMA in 18 days for nipples!
I originally had consults with Dr Rossen at Johns Hopkins. I chickened out at last minute. He gave me estimates of sx being from 12 + hrs for bilateral diep. they have intrerns there and I dont want them working on my breasts. I know they have to learn somewhere. not on me though. My sister asked him how many dieps he had done, he never would answer that question. I went with PRMA and was treated wonderful. wish I could say the same for MSK.
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As I understand it (but this may not be 100% accurate) a neuroma is the end of a cut nerve, where it's formed into a little ball. I could put my finger on it, it was like a little bump with a burst of pain under my arm pit. So my plastic surgeon put fat over it, twice, and the pain went away. It was a different pain than the implant pain, which was more of a burning on my chest.
I don't know if there are different types, I think it's sort of a general term. Ask your doc how he's going to fix it. My pain doc said they can't cut the end off, it will only reform. Because the nerve isn't feeling the pain, the site in your brain or spine that the nerve connects to is feeling the pain.
Yes, insurance paid for the Brava reconstruction. I don't know about the rash issue, you'd have to ask the right doctor. However, my doctor insists that the Brava is the best solution for radiated skin, which is what I have, because the whole idea is it brings new blood flow into the area and helps restore the skin.
If you have more questions, check out fatgraftpatients.com. there's a lot of women there with a lot more knowledge than I have. There's also a list of doctors who do the procedure. If you're near NYC, you could go see Dr. Christina Ahn, she's my doc.
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Kriserts,
Which insurance company covered your BRAVA?0 -
Hi Kriserts,
I hope you don't mind some of more questions.
any idea how many surgeries to achieve a "A" cup?
does she take insurance like blue cross?
how is the appearance?
any feel?
thanks so much,
CR
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I have Oxford, it paid for the surgery. Dr. Ahn isn't under a specific plan, but of course the insurance company pays for the surgery, if that makes sense. The only thing I had to pay for, besides the hospital deductible, is the Brava itself.
I can't answer # of surgeries, cup size because I'm not a doctor.
There's threads on this board that are better for asking specific questions about fat grafting .... look up "Has anyone had micro fat grafting?" and "Follow my Brava and Fat Grafting Day by Day." 0 -
Kriserts,
Do you mind disclosing how much the BRAVA costs?
Thanks!
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as I remember, about $900
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Thanks! Whew! Glad you didnt say $5,000.
If Dr A isnt under a specific plan does that mean insurance paid only as out of network?0 -
Kriserts!
Thanks!!!
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I am surprised at the lack of current posts on this site. It is my understanding that 40% of women who have mastectomies have some form of PMPS. that is from the 2009 JAMA article. There are so many of us suffering out there. Where are you? I am going through some tought times right now, with PMPS burning pain and also capsular contractures that feel like my chest is in a vice. I have been to several PS. they all say something different. I am 58 and have suffered for 5 years. I have many very good days, learning to cope with PMPS and contactures by exercising (swimming, weights, treadmill, and stretching), taking meds (neurontin and celebrex), therapy (not physical), and prayer.
Am now facing what to do about my capsular contractures, which were exaccerbated by a car accident. Perhaps I wil start a new thread. I cannot suffer in silence. Is anyone out there?
Maggi from Pgh.
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Yes i am here. I did some stretching last week and the boob/arm is sore. I really havnt pursued this pain. Ben so busy fighting and keeping this bc away. Suffering in silence
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I am so glad to hear from someone. Please don't suffer in silence. I am here. My pain gets worse as the day progresses. I know we have 2 battles.. the cancer and the pain. but we can do this, just try not to drive your family crazy like I have... reach out to other women in your area with PMPS. Does anyone know how to do that? I have contacted Susan Komen foundation and Avon Foundation,and Gilda's Club. Local hospitals have breast cancer support groups. maybe I will start there.
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MaggiePgh, we are here, just a little tired. Today has been a particularly bad day for me personally regarding pain, so I usually withdraw, try to "breathe" with the pain as I have learned to do with mindfulness-based pain management. I don't have the capsular contraction, but have multiple types of pain going on. One gets better, another flairs up. This is a 24-hour/day, 7-day/week issue, something that our providers do not really understand because they only see us for such a short visit every few months or so. It is because of the chronic pain issues that I have declined much additional treatment to "save my life" as I am often close to hoping for a shorter life rather than longer survival with more pain. No one can avoid death, but through death we can avoid pain.
I lived in Pgh until 2000, have very fond memories of that city, but don't have any idea about who you would see for pain management or other help.
Sometimes you need to just vent about the pain, but in case you are wanting to DO something, you may want to consider having implants removed, although that may not relieve the pain. You may want to see a palliative care specialist or pain management specialist. I am seeing both. I am seeing an interventional pain management specialist who has been able to give me some relief from the pain in the back of my ALND arm with an ultrasound-guided injection of the intercostobrachial nerve which was cut during surgery and now causes a lot of pain. I don't have good management of the searing burning pain across my chest from the BMX; I think it may have been triggered by post-op infected seromas; I have not been pain-free since surgery in Oct. 2011. There is also a tightness from adhesions, which are helped by myofascial release, which was originally done by a physical therapist and now I have a massage therapist who can do the same procedure since I am no longer eligible for PT and have to pay out of pocket for this.
And I still have the pain in my fingers and arms from the chemo, which started in Oct. 2010. This is worse with fatigue, sometimes better with pain meds, sometimes not. Pain just sucks.
I have been reading a lot of theology, specifically process theology, and am trying to find my personal "transformation" through this experience. I don't believe I have been given this pain and suffering for any reason or sin, but I do know that how I respond to it can be helpful or harmful to me and others. So I am trying to find some element of beauty and joy each day, trying to find a way to help others so that I do not become bitter and angry (have already been down that road, made me even more unhappy than I am now).
So, MaggiePgh, yes, we are here. You are not alone. If you start another thread, let me know, I will participate, or continue posting here and I will "walk" this path with you as I have this as one of my "Favorite Topics." I have also tried lots of other things to deal with the pain, can share with you as needed. Peace.
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Magi,
Have you been through physical therapy? Im fortunate to have a PT-CLT who only works with cancer patients many of which are BC patients. She describes other BC patient's problems to me so there definitely is much pain or comcations going on with mastectomies and implant recon.
She gets so frustrated when she tries to meet with breast and plastic surgeons to inform them of the benefits of her therapy and many of them give her the cold shoulder instead of referring patients
Like having to tell their patients they will probably need PT may make it look like they messed up in surgery?? Doesnt make sense. She is in same hospital system so she is all about the patient quality of life and not promoting herself as a business.
I had several consults with PS that said "you look fine, why are you here? Thats with rads implant two inches higher than other and then getting a blank look from them when I would describe the pain.
Received no advise on next steps to correct problems or pain management.
So glad my implants went to biohazard dump!0 -
I am here with all of you also. I thought at first it was just me.....not very many people know about it associated with breast surgery. My surgeon did, thank God. I have now started with a pain specialist and making some progress with the cymbalta and neurontin. My iron band is 90% better, but pain continues under both arms 4 inches from any surgery. Added to that I have truncal edema so everyday it is something.
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Crap...I just typed up a whole scenario of my pain treatments and clicked myself out of it. I will come back later and write more about it. Or you can look up my previous posts here in the PMPS section.
I will finsish this again later. I should just write a document on my laptop and keep it and just copy and paste it.
till then...you are not alone...i have had PMPS and LE for over two years now...
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Well, I'm here to tell you, I took the implant out, and I'm now pain free. It's crazy that so many women complain about this, and yet we're all looked at like it's some unheard of problem. I went through three or four implants trying to fix the problem, the pain always came back after a month or two. I used to feel a lot of pain sitting at my computer all day, that burning, burning on my chest, and I had to take vicodin to cope. For a few years. Sometimes now I sit there and think, wow, that's all a bad dream, the pain is really gone!
I had 3 issues--a neuroma under my arm (like a cut nerve), the burning pain of the implant on my chest, and how tight my arm was when I raised it because of the implant under my pec. I chose the new fat grafting procedure--doc covered the neuroma with fat, and the process of wearing the brava suction cup has really helped the quality of my radiated skin. I was adamant that my final goal was no implant. Reconstruction is still in process, but the implant's out, range of motion is restored, and all that pain is a thing of the past. I'm really grateful I found the right doctor finally.
Maybe doctors say you could take the implant out and still feel pain because radiated skin could still scar down on the chest wall if you didn't go with another type of reconstruction? Just speculating.
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