Topic: Post Mastectomy Pain Syndrome (PMPS)

Nov 23, 2012 12:25 PM LindaKR wrote:

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.

Nov 23, 2012 10:40 PM LindaKR wrote:

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

Mar 14, 2013 01:28 PM PinkHeart wrote:

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.

Mar 14, 2013 05:22 PM PinkHeart wrote:

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.

www.naturalbreastreconstructio...

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.

Mar 14, 2013 05:32 PM MaggiPgh wrote:

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

Mar 15, 2013 11:34 AM kriserts wrote:

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.

Mar 16, 2013 10:07 AM fredntan wrote:

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.

Mar 16, 2013 11:50 AM PinkHeart wrote:

Kriserts,

Which insurance company covered your BRAVA?

Mar 16, 2013 09:19 PM, edited Mar 16, 2013 09:30 PM by kriserts

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."

Mar 17, 2013 08:45 AM kriserts wrote:

as I remember, about $900

Mar 17, 2013 09:18 PM Chocolaterocks wrote:

Kriserts!

Thanks!!!

Mar 18, 2013 07:02 PM fredntan wrote:

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

Mar 18, 2013 07:14 PM Linda-n3 wrote:

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.

Mar 18, 2013 07:46 PM Beatmon wrote:

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.

Mar 20, 2013 11:37 PM, edited Mar 20, 2013 11:41 PM by kriserts

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.