Post Mastectomy Pain Syndrome (PMPS)
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MichiganMom -
Your post really hit home. Thank you! I've also found that to relieve my symptoms I have to wear a bra 24/7.I really didn't understand why so I started experimenting and found that just a bandeau bra worked. So it's not the upward lift of the straps it's the compression... I assumed this somehow quieted the nerves.
I was thinking we should create a PDF file with BCO Sisters' top 25 (or more!) bits of experience. A tear sheet to be handed out or emailed to people facing breast surgery.It would have helped me so much to know about cording, PMPS, Implant Sizing...the list goes on. If I made such a thing and emailed to my doctors at Dana Farber maybe they would use the information themselves as well as hand it out to patients.
Maybe something like this already exists? I don't want to reinvent the wheel. It just seems there is SO MUCH knowledge here that should be in the hands of breast doctors and their patients.
What do you all think?
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fog: Amazing that you mentioned this! My sister and I were talking this afternoon and she said that she would like to compile certain information and data and post it here for others to utilize. Additionally, my sister's PS emailed her yesterday and asked her to come up with a "hand-out" or flyer of some sort to give to patients after mastectomy, informing them of the potential for PMPS. This PS is with UCSD Medical Center in San Diego....a huge cancer center. Let's get the information out there!!! So glad you are on the bandwagon!!!0
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I do not see any doctor I have ever had do a handout. They want u to know as little as possible so u won't come back with any ideas. I am so dissapointed in my breast surgeon. She never said a word negative. I think a few "you should be aware" discussions should have been in order. I feel duped by doctors. I have suffered because of them. I had a dr who said my heavy bleeding would go away after meno. well, 10 years later, I switched doctors (cuz I moved) and she said the bleeding was no period and did a hyst' I had huge fibroids, and a belly full of adhesions, which is a whole other story,stomach pain ffor years, drs said I was nuts. Lucky I had no cancer in my cha cha. my primary care phsician many years ago said I had anxiety, Hello, I found out I had MVP, mitro valve prolapse, which has same symptoms as anxiety. Am I nuts here. This is such a cleansing post 4 me. I have this haneous chest pain all the time and my breast sergeon said she did not know why I had pain.omg!!! Anyway, I try to ignore the pain. I have taken a lot of different drugs, lyrica,nsaids, nerontin and nothing really works. i have been to a pain specialist who thought I was a druggy cuz I asked 4 pain meds. And the physical therapy, omg, it was torture. It did help my range of motion though. I do know I do push myself to do a lot for a person in bad constant pain. My hubby and I have an rv. Since my surgery in dec '07, we have taken many roadtrips. Every time we start on the road I think" I can't do this". Being in a sitting postion on the road is torture, but, I do it. Right now its torture to sit up and type this. We have been to Maine and back, I live in Florida, for a month, cross country road trip to Las Vegas, for 5 weeks, and numerous side trips to Key West, Savannah, and beaches of the panhandle of Florida. This thread has assured me I can do it. Thank u deeds for this thread. Gentle hugs to all my sistas.
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Hi Deeds-
Thank you for posting the links on PMPS from MD Anderson. Here's a link further discussing the cause of pain as intercostobrachial nerve damage which occurs when surgeon cuts through certain nerves during masectomy which leads to lingering pain.
So, after reading this my question is..I guess if the nerves are cut, what's done is done? Once nerves are cut then can't be repaired?
Or perhaps, pain is from scar tissue but my pain was pretty immediate after surgery so scars had not formed I presume.
General treatment I am hearing for PMPS pain includes Myofascial Release.
Spoke with PT who said that acupuncture is fine for those who already have lymphedema. But for those with PMPS and not lymphedema placing acupuncture needles near the sugical area is not a good idea. I pointed out that the two are likely inter-related as per the MD Anderson findings..She just said that she would be hestiant to put needles around the area...
The nerve damage during surgery..that's the question...because I am hoping that a switch to the smaller silicone implants with alloderm vs. 530 cc saline I have now will alleviate pain but may be not if the nerves are just damaged...
See link below. What do you hear?
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Jessica - thanks for that very helpful link. I've added it to the original thread. Although lengthy, it's quite comprehensive and the surgeon seems to be very sympathetic towards our plight. The care he takes to educate his patients pre-op is impressive.
The comment about acupuncture placed near the surgical area might be valid. Although I'm still relieved of the arm-to-elbow pain, as well as armpit pain, I did develop a swelling and type of nodule that could be related to that. It has slightly reduced in size, and I'm so much more comfortable that I've considered it a trade, but will seek my doctor's opinion if it doesn't resolve.
I'm hoping that there are some out there who might have more information for you regarding the switch to silicone from saline. Smaller sounds better to me, merely from the standpoint of less movement (thus less potential pain)!
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Whippetmom and Deeds - Yes, I'm on the bandwagon!!!
Let's create a document here on BCO that all of us could email to our doctors, breast care centers and women we know who are having surgery...
Don't we have the responsibility to light the way for our sisters behind us on this road?
With love, Lisa (though fog is a very appropriate name for me right now!)
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Jessica - I'm seeing a neurologist tomorrow afternoon and will ask your question about cut nerves. I think it's possible the nerves are "only" traumatized and can repair themselves. I'll post tomorrow evening with his thoughts.
I read the article you posted a link to when I googled PMPS and have actually corresponded with Dr. Wascher via email. He's in CA now. I was hoping he was on the east coast still. He recommended that I find a fellowship trained pain specialist. Not sure if I'll do that - depends how it goes with the neurologist. Dr. Wascher is amazing. It's reassuring to know there are doctors out there who know about PMPS and are trying to get the word out. Hugs, Lisa
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I think your idea is fabulous, whippetmom & deeds! Call it the BCO Project. I'd love to help out, having been here for 7 years--I've seen a lot, and experienced a lot.
Re the PMPS--it is so very "for real" but the surgeons don't really acknowledge it because it implies a less than perfect outcome on their part. And I know so many doctors who believe that educating you about potential bad outcomes means that with every little twinge we'll be calling them in panic mode. When really, it's the exact opposite!
One reason to aggressively treat neuropathic pain like PMPS is because the body/brain will start to recognize pain as the norm. By then, it's too late. Like a computer, you need to "reboot" the system. Lyrica or Neurontin with Clonazepam or Cymbalta help do that.
I had severe nerve pain after my implant exhange--down my side initially, then into my armpit and shoulder blade when I stretched and rotated my body. Horrific! My PS just seemed befuddled. I got to a pain specialist immediately and got on treatment. (I used to work for the pain clinic, so I knew what to do!) The meds helped relieve the pain, but my "cure" was when I got the implants out and had flap surgery. My new PS untethered that nerve from the scar tissue that had built up, and I was able to get off meds.
Scar tissue was the result, but I agree it didn't START that way! It was interoperative trauma.
I suppose that even if I had been advised of this potential, but rare, issue, I would have gone ahead with the surgery. And if I had been given a big list of everything that could possibly go wrong, I wouldn't remember half of it. But it would have been nice to have some resources to refer to when it DID occur, so I wouldn't have felt all alone in my pain.
So, how do we limit it to 25?? There are so many potential issues, depending on what the category is. Some of us may focus on reconstruction. Others may want to take up chemo, rads, LE...there are many women here with lots to say, things that can help so many others. I see more than a PDF or tear sheet. We've got ourselves a book!
Anne
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Hi Ladies-
I have to say there has been a new spring in my step on the prospect of being able to live without pain. Deeds-It would be great to find out from other ladies about switching from saline to smaller silicone and if this would provide relief. I wonder how to get this info.
The PS's I have seen on this issue have said there is no way to know but they never mentioned the intercostbrachial nerve possibly being traumatized. If I just do the switch out and the nerve problem is not addressed than the pain might just persist.
Anne W. who was your PS that understood how to "untether the nerve from the tissue"? Again, the first time I heard of it was here. I dont think I have enough skin for a DIEP so was going to do an implant exchange but it is very interesting that you found relief only when the implant was removed. I wonder if I were to have the nerve "untethered, get scar tissue removed and then do exchange from saline to silicone if that would do it?
FogandRoses- Very interested to know what your neuro has to say about nerve issue can be reversed after surgical trauma. I would have addressed this long ago if I knew that this was a possiblity.
I think sharing this info on PMPS is very important and agree we have a karmic responsibilty to help thos sisters who have yet to be diagnosed. We have so benefited from all the wonderful women who have gone before us.
What I have learned about all of this is that you have a life plan and then life has other ideas and takes you on a different course. No matter how much you want to go with your old plan you have to bend with the wind but also stay firm. Like a tree. It reminds me of those scenes in Forrest Gump when the feather dances around him..in the wind. I think that it was they were trying to say. Life is like a box of choclates..
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Jessica - your last paragraph gave me chills.Beautiful and true.
Anne - you're right. There's way more information than a tear sheet could hold. Maybe the "book" resides here on BCO and the tear sheet lists key topics and one or two pearls of wisdom for each?
My original thought was to get the word out about PMPS so other women wouldn't go through this frustration and lack of early treatment.
But how amazing would it be to have a living document on the website that holds a condensed form of wisdom from everyone here? Sounds like two projects - one short term for immediate distribution and the other a work in progress.
Whippetmom and Deeds - want to do a strawman proposal for a post-op handout about PMPS with a reference back to BCO for information on LE, Cording, Rads, Chemo, Recon...and more? What do you think? I'll help!
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Hi Jessicav,
I tried lots of myofascial release for my PMPS and it only made the pain worse. I went to a PT, then went to a doctor for a different type of myofascial release, and then to another PT trained in the Barnes method of myofascial release. Although the idea makes sense, I found that it only aggravated the pain. Maybe some of us are helped by it, while others are not. Please let us know how it turns out for you.
I'm very interested in the surgical untethering question. My PS said it wouldn't help because even if he untethers the scar tissue from the mastectomy, a fix-it surgery would just create more scar tissue that could exacerbate the PMPS. Don't know, but I'm interested to learn more from any of you who have tried it/will try it. Thanks for all these knowledgeable posts.
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Hi Michigan Mom-
Yes, the question about untethering the nerves from scar tissue with a 'fix it" masectomy causing more scar tissue is a big one because making it worse would be really terrible.
Deeds & Deborah-
I printed out and read Dr. Burton's report as well what Dr. Wallace has to say about it. I wonder if they know who is leading PMPS in New York. I have done some googling and there doesn't sem to be any one leading the way here. There are Pain Centers but none that specifically mention PMPS. I see that Washington State has recognized this big time..not finding anything comprable in NY.
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jessicav: Memorial Sloan-Kettering has a great Anesthesiology/Pain Mgt. department. Richard Payne, M.D. who wrote about PMPS ten years ago was the chief of the APM Dept at SK until several years ago. I would call there and find out the names of the physicians who worked under him who are still there. With a little research I know you will find someone.0
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After reading through all of these these posts I am wondering if I have PMPS. I had my exchange sugery in Aug. 09 and I still am having pain. I thought that once I got the TEs out I would no longer have pain especially in my left side of breast, arm pit, arm and also "cleavage" pain. I have asked the BS and PS why it still hurts and they both tell me its "just" the nerves. I am even contemplating switching implants because I have myself convinced there is something wrong with the left one as it can be quite painful. I have daydreamed that the Dr. would open up the left one and see something wrong - anything- and say oh so that's why she is having pain - here let me fix that - and then I could heal and not have pain every day anymore. The pain doesn't keep me from doing anything but it does get annoying and tiresome. I don't know if I just haven't found the right bra (altho I have tried at least 20 different ones). Wearing a bra is so uncomfortable but then when I take it off that is a different type of discomfort. I know I want to have a revision done as my right implant is a little smaller and higher than the left & is noticable in clothes. I was toying with the idea of going bigger but it does make sense that it could cause more scar tissue and more pain. I don't know what to do at this point. I guess I will mention PMPS to my PS and see what he says next time I go. Like someone else said drs. don't like to admit to anything but a perfect outcome and can make ya feel like you are crazy or a hypochondriac! This is all very interesting and a great idea about a hand out!
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About PMPS specialist at Memorial Sloan Kettering:
One person to try is Dr. Kathleen Foley. She has quite a lot of experience with PMPS... And she was the guest speaker on a Cancer Care educational call a year or so ago. Much of the call was devoted to PMPS.
There is also another person at Sloan Kettering... I can't think of her name right now, but I believe she is a nurse practitioner. She's very compassionate about PMPS. I will post her name when I remember it.
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Thanks Deborah and MichiganMom!
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Does anyone else have pain in their back behind armpit.\?? My armpits reaaly hurt and my chest. When I had my check up in December my bs checked to see if I my skin was loose and it was. So does the pain form under the muscle, because thats where my pain feels.
Anne I have tried Lyrica and I am on clonazapan and nerontin now. It does not help. I go to an arthritis specialist and she poo pooed the chest pain never mentioning pmps but did diagnose fibromyalgia in the rest of my body. I take a very low dose of nerontin,300 mg because more makes me dizzy. I have an appointment with her next week and will mention pmps.
I was at abreast cancer luncheon last fall and I sat next to a plastic surgeons nurse. She said he probably would not do recon on me because I have so much pain. I had no recon. I can not imagin e having an implant in front of my chest. Is it heavy?
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I have burning pain like you said behind my armpit on my back. Especially when I get in the shower and the water hits it - it feels like its on fire so I have learned to get in at the other end and turn that part away from the water. After a while its ok and its only on one side. Weird I know.
My implants feel heavy but it could be because I have silicone gels and some other women have said they feel heavy to them too. As I have never had any other kind I am not sure if that is why.
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I'm having coffee and thinking of you all. I'm sorry so many of us are still in pain long after our surgeries. I also have burning pain in my back up to my shoulder blade. Used to be constant, now it comes and goes.
I did more research yesterday and noticed that many of the articles on PMPS are dated late 1990's. Why didn't this information make it to our surgeons? And if it did, why didn't they inform us before surguery or at least use it to diagnose our pain? I'm trying to understand.
I emailed Dr. Wascher who wrote this article: http://www.cancersupportivecare.com/surgerypain.html and asked him if he knows of any printed material already available on PMPS.
Maybe some hospitals/breast centers are already informing women. Maybe NOLA? I've read so many positive things about those doctors. If someone is already doing a good job I'd like to know so I can get Dana Farber to copy them!
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I don't know that I would have had an elective surgery to try to "fix" the nerve pain I had. But since I had a very skilled microvascular surgeon doing my new recon, I figured it didn't hurt to ask her to examine that area closely. (My surgeon is Dr. Marga Massey. I had to travel to Charleston, SC to have the surgery. I live in CO.) Anyway, she marked my skin in the area of the nerve and was able to find it and fix it.
Some of the discomfort has returned as the nerve regrew over these past 8 months. But it's very superficial and I rarely feel it when I wear a bra.
I can't stress enough finding some sort of pain management that works. Chronic pain is hard to treat. It's best to get aggressive with PMPS from the outset so the body doesn't think this pain is the "norm." A nerve block may be effective, too, if done by a skilled, board certified pain specialist.
Deep tissue massage always made my pain worse. My PT (who is also an LE specialist) did very light massage to reduce scar tissue, but I can't say it helped much. The meds were all that helped me. The thing with Neurontin is that sometimes you have to take really high doses to achieve the goal.
And, in CO now, there's medical marijuana!! Not that's anything I'd ever want (I don't think!) but it's an interesting proposition. (Here in Boulder, there's a pot shop on every corner!)
Take care, all,
Anne
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Hi ladies-
Having my coffee here in NY and thinking over all of this info. I have saline 530 cc implants and I can say they are extremely heavy and feel like cantelopes. I was hoping the silicone in a smaller size would feel lighter.??
Anne- I wonder how Dr. Massey targeted and fixed the nerve pain. I have to stop this pain and am wondering if I need to go to a microsurgeon even thought I am doing an implant switch rather a more complex surgery. Again, wondering about the fix and if PS can untether the nerves and if so, does it just lead to more internal scarring down the road..
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fogandroses Lisa - I sent you a PM regarding your suggestion for a "strawman proposal".
You're an inspiration to all of us since you "took the bull by the horns" and wrote a letter. We tend to have lots of conversations in our heads of what we'd say to the doctor, but then never do either.
The response to this thread has amazed me; the similarity and yet the range of symptoms are astonishing.
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Thanks, Deeds. I PM'd you.
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Jessica, I had pretty much figured out that my pain was an injury to a lateral cutaneous nerve. She marked the spot and looked for it while she was prepping me for the flap tranfer. I wouldn't expect a plastic surgeon to have you open enough (during an implant swap) for exploration, and I doubt you could get another surgeon to operate on an exploratory basis. But it never hurts to ask your PS what can be done for you during surgery...Good luck. I know you're miserable.
Anne
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Deeds and Whippetmom -
Dr. Wascher answered my email with two suggestions for PMPS handouts. I'll PM you with details.
Sleep well all!
Lisa
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Fog can u pm me the info too!! thanks
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Hip - I PM'd you.
Also, I don't know if I already mentioned this but my PMPS symptoms are only on one side. My right (cancer) side is absolutely pain free with no numbness or pain on my back/shoulder blade.
So I know what it's like to have a "normal" result and a PMPS result. It's night and day. If not for my right side I might have believed the doctors when they told me my symptoms were normal.
No - my right side is normal, my left side is not!!!!
In case others are interested in reading the handout Dr. Wascher sent here it is:
http://www.cancersupportivecare.com/pbtpshandout.php
Lisa
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Trying to google more info. this is what I got
http://breastfree.org/viewer.php?num=7
http://web.mac.com/bdurkindo/Acute_Pain/Articles_files/PredictorsPostMastPain.pdf
I was wondering if all your pains comes and goes or the pain just stays?
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Just wanted to respond to Typhoon/Janet in particular, but this applies to post bc-treatment breast/chest pain in general. Doctors are so unfamiliar with truncal lymphedema that they don't readily recognize it, and even in the presence of some swelling it doesn't pop into their minds, so I'm bringing it up again here. Early stage lymphedema does NOT show visible swelling, but tingling, new numbness, stabbing pains and intense nerve pain are all likely symptoms.
Delayed resolution of swelling post-surgery is very likely to be lymphedema. Trying a very short course of diuretics may be okay, but if it's lymphedema a diuretic is contraindicated, as it leeches out the fluid and leaves behind the larger protein molecules present in lymph fluid. Protein is irritating to the tissues and will lead to fibrosis formation or outright inflammation that is often mistaken for infection, so treatment of the real underlying cause is delayed and overuse of antibiotics can go on for months. Meanwhile the lymphedema progresses, making later treatment longer and on-going control more difficult. A prompt referral to a well-trained lymphedema therapist experienced in treating truncal lymphedema can solve the swelling and the pain with non-invasive and non-drug treatment. It can also contain possible spread of the lymphedema to the arm.
Like all of you here, I spent months looking for relief from the life-altering pain, and a good therapist had me feeling better in a matter of days. I'm not saying this is the solution for all of us, just that lymphedema can cause these symptoms, and our doctors are not going to call this one correctly. If you'd like to pursue that possibility, here are pages on truncal lymphedema, on cording (Axillary Web Syndrome) and on finding a well-trained lymphedema therapist near you. Hope it helps, and we all find a way back to a pain-free life!
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Gentle hugs,
BinneyEdited to add: my lymphedema started on my prophylactic mastectomy side, with no nodes purposely removed, so ALND is not a prerequisite for either long-term pain or lymphedema.
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So, I started my quest to find an le therapist. I have already done this before after my surgery in December '07. It was an impossible task then cuz I only found quacks or ppl I did not like. I had regular physical therapy and it helped my range of motion, but I was so sore after. I did it for 3 months, what was I thinking......I went to the site that binny suggested to find a list of le speciaists. There r only 4 near my zip code here in Ocala Florida. I will start calling them tomorrow and grill them to see if They have any knowledge on PMPS. Im cautiously optimistic so it can't hurt to try. None of the names were on my original list I don't think.
Fog, thanks for the pm's. I hope with "sista power" we can get to the bottom of this problem.
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