Post Mastectomy Pain Syndrome (PMPS)
Comments
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Hello everyone, Just popped in to say hi. Hugs , Hipp
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Daisy: yes, you can wear clothing during an MRI, as long as there is no metal (as the technicican said). Why can't you take some kind of pain meds, or perhaps something for anxiety, just for the MRI procedure? The bras I wear are almost binding in their tightness (no wire, though) and I'd think that immobilization would mean less discomfort for you. The possible rotator cuff problem makes sense; when my left arm had the pain and numbness I overused my right side too.
Let us know what you find out, though Daisy - hope you're pleasantly surprised, instead!
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Hi Daisy, I think MRI's are all open now, but if not get some drugs b4 hand. Don't be affraid to ask cuz lots of ppl have MRI fears. Its funny how PT's can be different. Hope this one works out for u. What is the exercise for the nerve pain? Hipp
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Hello all,
I have been looking for you for years!
BRCA1+, diagnosed in 2002 at age 45, Cancer found in clinical trial, T2, NO.
Bil mastectomy, w/TRAM reconstruction, sentinel node biopsies: 2002/3, Salpingo oophorectomy 2002. ACT x 14 mos.
PMPS since nipple reconstruction, which included lift, in 2003. Shooting, stabbing, searing breast pain bilaterally. I have not slept through the night in 7 years. I can no longer work full time--a real issue for a single mom with a 12 yo son.
Also neuropathy: fingertips & feet & stomach (gastroparesis). Permanent hot flashes.
Have tried absolutely everything, including PT, massage, yoga, acupuncture, rolfing, exercise, meditation... Neurotin, cymbalta, lyrica, all kinds of opiods, ultram, NSAIDS, sleeping pills... Nerve blocks, epidurals, lidoderm, capsaicum, topical ketamine... (The only thing that I haven't tried is botox. Haven't found anyone willing to treat.) Have consulted with three major pain centers, including Sloan-Kettering.
This year, I decided to try everything again, in the hopes that my body would respond differently. So far, no changes.
I'm an advanced practice nurse, and teach undergraduate nursing, so I stay current on the research. There's nothing out there for us. I work hard to stay positive, but really--what a crappy life.
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Well djh, That was a mouthful for your first post. I think there comes a time that we just give up. I know I did after my 3rd pain doc said nothing was gonna help me. I was grateful he said that cuz I did not want to continue my search for pain relief. Stick a fork in me im done. Some days I can handle it some days I can't. If something earthshattering comes up in the research world let us know. Hipp
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I just would like to clarify something about the etiology of PMPS. I have been reading some posts around bc.org, blaming PMPS on implants and/or breast reconstruction procedures in general. There is no documented evidence that post-mastectomy pain syndrome is caused by the placement of implants. Mastectomy [breast surgery] is the primary risk factor, coupled with and/or exacerbated by node dissection and then exacerbated or complicated by irradiation. Women who have had lumpectomies or mastectomies without reconstruction of any kind develop PMPS symptoms. Also, the issue of the chest muscle" being "severed" is entirely inappropriate. The method of placement is the partial subpectoral placement of implants. The partial subpectoral placement of implants - pectoral dissection - has been performed hundreds of thousands of times for cosmetic purposes - for breast augmentations - for decades. No one in Hollywood seems to be complaining about their chest muscles being severed. I honestly have never read one case of someone having undergone breast augmentation developing post-mastectomy pain syndrome. The key word is "post-mastectomy"....
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whippetmom-What is your purpose for joining this topic? Do you suffer from PMPS? You write as if you have knowlege in the medical industry. Have you worked in the medical industry? If so, in what capacity? Using words like etilogy (a branch of medical science concerned with the causes and origins of diseases) and inserting medical verbage...You can pretty it up with medical terminology, as much as you can, but to sever is just that!
Sever: to remove (as a part) by or as if by cutting
While the terminology may be 'inappropriate' for you, it is an accurate account of what occurs to 'form a pocket' during reconstruction (my pectoralis muscle tells me so, and so did the PS). The muscle has been cut and no longer functions in the previous manner. I could use the term 'dissection' because it implies to take or cut apart, but I don't think that is an accurate one because I had an axillary lymphnode dissection and all was removed, after severing.
Latin dissectus, past participle of dissecare to cut apart, from dis- + secare to cut
Just because we aren't aware of anyone in Hollywood who has undegone 'pectoralis dissection' and suffered from PMPS it does not validate your argument.
Not too many years ago, both Lupus and Fibromayalgia weren't considered actual conditions. We are at that stage now with PMPS. There is not much research on the subject. There is a study I read which did report women undergoing breast augmentation alone who are suffering from PMPS.
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Yes, Daisy - I was evaluated with the shoulder pain and the arm pain as being part of the PMPS. My first few visits to an acupuncturist eradicated the shoulder/arm pain. However, the tight, tight feeling is still there (like wearing an uber tight bra), as well as some intermittent "jabs" in the left breast...as if someone has poked me. Always makes me gasp...embarrassing at times!
I don't know that there's any rule of thumb as to how long you stay with a particular treatment. My acupuncturist explained that the length of treatment needed was usually in correlation with how long the person has suffered from that pain. Mine had been within 2 months, and responded quickly. A longer duration (say 2 years) would, reasonably, take longer to heal.
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((((((Deeds, Whippetmom, Hipp and Daisy))))))) and everyone here. I've been away, traveling and writing. I came back to catch up and share this thought. Pain makes people say and feel things they normally wouldn't. I won't tell you the adjectives I used to describe the resident who I (assume) caused my PMPS. Now that I am feeling better I realize he was probably just a scared kid who is now as scarred as I am from the experience.
We have all endured trauma - some of it mental and some physical. Some of us are still so wounded we can barely make it through the day. I remember holding on by my finger nails. Just making it day to day. Those who are stronger now and come to this thread to share their knowlege and experience - God bless you. We need you. You helped me along the way. I'll never forget that.
With Love, Fog
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djh, your post touched my heart. 7 years is a long time. you have worked so hard to get better. i just wanted you to know i am thinking of you and, yes, it is crappy. i tried everything you tried except for the nerve drugs. i finally joined a water aerobics class for senior ladies (only because my daughter made me) and it helped. i never thought being in a cold pool at 8:00 am with 80 year old ladies would be the beginning of healing. you just never know when your miracle is right around the corner. love, fog
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How is everyone doing today? It's hot and humid here, very strange for this time of year in Maine. I've been gardening. I'm creating a meditation garden. Very peaceful. I love taking my coffee out there in the early morning. Just have to be careful not to over do it with the pulling and chopping. I hope you're having a restful weekend. Big Hugs to you all, Fog
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Fog: nice of you to update us. Is your meditation garden somewhere near where the white dog in your picture is?
It's hot and dry here in San Diego...fire weather unfortunately, for us. So water aerobics is a great option: and it does seem to help the tight bands across my chest. Sometimes feels a bit uncomfortable, but my posture is better (no more hunching!)from the water exercise, plus yoga stretches.
Blessings to you on your weekend, gals!
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Hi all, nice to "see" you. I started a roadtrip with my hubby today. We don't know exactly where we will go, but tomorrow we will be in Alabama. Its been sooooooo hot in Florida we need to find some cool weather!!
I still find it a struggle to manage my pain. I have percocet, but they really don't help. I was going to the pool every day, but I still hurt everywhere. I am moving forward with this roadtrip, but its sooo hard. As u all know I have tried everything possible to help myself. So, Im off again to find the worlds largest ball of twine.............i'll keep in touch Hipp
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Hello to all,
This is the first time I am hearing about PMPS and I am afraid I am developing it. I feel like I have hard cones stuck onto the front of my chest -- someone described it as "iron bra syndrome." I also have stabbing pains in my chest at times. When I start to feel these things I massage my implants and it lessens the feeling of the iron bra, but I am wondering if PMPS is a progressive condition. Once you start to have symptoms do they usually get worse or can it go away as fast as it came?
There are so many things the surgeons never speak about when we are counting on them to help us make choices that will affect the rest of our lives.
Thank you everyone.
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Hello Gran: glad to have your input and concerns expressed here. I'll do my best to answer you, but there are others on this forum who have learned/experienced far more than I.
As you read from my initial post, mine developed approximately 6 months after surgery (surgery March 09). Previous to that they were still extremely tight, but no pain. The left arm/left shoulder symptoms I described have since disappeared; the tightness remains. My implants also were placed sub-pectorally, but without the alloderm sling (I read your bio), thus have a bit of "bottoming out" on the left side. I have considerable puckering and movement from doing things as simple as opening a jar, and yet have opted to NOT redo the reconstruction, since most articles that I've read indicate that the tight symptoms may not be remedied by that. Water aerobics, yoga, purposeful and intentional stretching have helped and perhaps, also, a mental acceptance of the "iron bra" sensations.
Because of your extreme sports, your choice for reconstruction makes sense. My question is: does your new surgeon fully understand the implications of PMPS, and is he well- read on possible remedies? There are several schools of thought regarding prevention of PMPS prior to surgery.
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Deeds: Your implants are sub-pectoral AND under the rectus abdominus and serratus muscles - a complete submuscular.....so I just wonder if that adds even more to the "iron bra" sensation?
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It absolutely could...but I surely don't jiggle when I walk!
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Ladies I would like to chime in for some input if I may...
I had my BMX w/TE in June 09', exchange in NOV 09' was dx'd with truncal and bilat arm LE in Feb 10', I have ALWAYS had some form of discomfort but lately my discomfort has really been draining me. I have to be supported 24/7 and can only handle a bra for about 4-5 hours at which point I have to change into a compression bra, vest or binder. Even with the compression, I usually have to change out from vest to binder or vice versa as the discomfort only increases if I am in one garment too long.
My discomfort varies from; burning prickly heat rash feeling in the chest axilla or under the arm, a feeling of engorgement, phantom nipple pain, pin's and needles in the trunc, back and upper arms, heavy pressure like someone is sitting on my chest, hypersensitivity, tender to the touch (especially on the underside of my breast where the tissue is the thinnest and I can feel the implant the most) and sometimes it feels like there is a centipede in stilettos running across my back.
Of course I don't feel all of these sensations all the time and the level of discomfort varies from mildly annoying to I just want to crawl in bed, pull the covers over my head and cry. The discomfort increases as the day progresses or if I over do it.
I have put on 35lbs, hate feeling so fat and frumpy but I have NOTHING left at the end of the day for exercise. I am working full-time and we are raising two great teenages with after school activities, sports and church functions almost every day of the week.
I have just seen both my BS and PS and they are referring me to a pain management specialist, I really am scared about pain meds. I don't want to become addicted to them and am worried that I might be blowing this whole thing out of proportion. Could these sensations just be a part of having LE??? Is there something else I should be trying before seeking pain meds? I really am hoping if I can just be pain free for a period of time my body would remember how to function without pain or am I only dreaming?
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Hi Deeds,
Thanks for your reply. I am sorry to hear you are having some bottoming out problems as well as the PMPS. I am so glad my surgeon decided to use the AlloDerm because it gives much stronger skin inferior to (below) the implant.
I will ask the plastic surgeon about PMPS and also a physical therapist that I have seen a few times post-mastectomy. The reconstruction of my reconstruction is making me nervous now after reading about so many people having problems. Maybe I should just count my blessings and not strive for perfection. I am really confused now and I don't want to cause new problems for myself. I need to talk to the PS again about the whole thing. Thanks for your thougts and the examples of ways you have been dealing with this. Good luck to you!
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Deeds, our yellow lab is standing on our front walk - not near my new garden. That picture was taken two summers ago. Last summer we had to put him to sleep because he had nasal cancer. He was 13 and I still miss him every day. When I went through my diagnosis and surgeries and then the chronic pain - he began following me everywhere. He was so worried about me. Our neighbors called him my shadow. He kept me walking with him when I just wanted to lie down. When he developed nasal cancer I researched the heck out of it. I told him I wouldn't let him suffer like that. Up until the moment he took his last breath I was praying that he wouldn't suffer from the shots, that he would go peacefully. And then he was gone and it wasn't until that moment that I realized that I had lost him forever. Oh way too much information, sorry. I'll come back later.
Love, Fog
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Hi again. Is there something in the air? Full moon? I have been so emotional lately. Ate a crab roll and drank some chardonnay. Now I feel better!
Gran - Since you're so athletic and they're getting in the way - not to mention making your pectorals unhappy - I think it's reasonable to trade your implants for a smaller size. I have 286 cc silicone implants. I'm a B and it's just right for me (5'7" and 125 pounds). I was small before and wanted to stay small. But I would add that your exchange was not that long ago and your body has some adjusting to do. Bottom line, you know your body and your lifestyle best.
Hipp - I hope you are not in the path of the rain and wind coming up the east coast. Are you somewhere cool? It's so adventurous of you and your husband to pack up and go without knowing where you're headed. We are such planners I think our collective blood pressure would be sky high without a detailed plan!
Michelle - it's so important to give your body/brain a break from the pain. I do believe that's a big part of why my pain went away. Find something (for me it wasn't drugs but therapeutic massage and acupuncture) that transports you, fills you with endorphins, makes you happy and totally short circuits your pain.
Happy almost Friday everyone. Fog
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Hi Fog,
Thanks for your comments. Since reading all of the various posts on this site, I am reconsidering whether or not I should have my implants downsized -- for a number of reasons. One is that the new PS was going to give me new Mentor 300cc moderate profile implants and take out my 400cc Mentor Moderate Plus'. After hearing about 'pancake breast' from several women, I am wondering if the new implants will just look silly since the projection will be 1cm less and the diameter will be larger. Sounds like a possible pancake to me. Also, hearing about PMPS and all of the other complications other women have had, I don't want to tempt fate.
You smart women told me to wait and give it some more time and, guess what? I am able to do athletic things I was unable to do 2.5 weeks ago. So, if in that short a period of time I am coming back to at least a shadow of my former self, then if I wait another month to decide about the surgery I will have lots more info and be more sure.
I initially wanted the downsize because I couldn't get my wetsuit on to go spearfishing/freediving and I was having trouble with all of the activities associated with that sport which I love. My implants were freaking out and painful whenever I did anything that required the pec muscle. Now I can do most everything without pain, and have gotten used to the feeling and appearance of distortion of the implants. My strength is coming along, although it will probably never be the same since the PS cut about 3 inches of pec on each side under the breast to place the implants. That is cut forever, but I think I can try to strengthen the part that is not cut and will have to learn to adapt.
The only kicker at this point is that my boyfriend thinks I look too big and fake now (I am a C cup now and used to be a
. He says I don't look sleek and athletic anymore in a sexy dress -- that I now look top-heavy and he wants me to downsize. But to me, function was always my main concern. I can't really get my head around going through yet another surgery merely for cosmetic reasons. Granted, I do wish the PS had used smaller implants, but is it worth the risks of anesthesia, surgery, possible infection and the lost time while I heal? I don't think so. On the other hand, I don't want to feel unattractive to my boyfriend every time we dress up and go out. I know that sounds petty and I can hear people cringing at that last sentence about the BF, but it does matter to me what he thinks. Ugh. Do you ever have the feeling that you just can't win?! 0 -
Gran, Im cringing....................
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Gran- Well, I'm not cringing. After all we've been through we do want to know that our S.O.'s do still find us attractive. I think for a lot of us our self esteem has taken a bigger beating than our breasts have. I, too, have considered having a revision and going smaller. The thought of going through another surgery, though, is what makes me cringe.
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Gran, I'm not cringing, I'm horrified. Not that you want to look good, of course you do and you should do whatever makes you feel that way.
I am horrified at the BF's lack of sensitivity to your having to endure another surgery, etc., and that he'd be that petty, that a woman he cares about needs to do that (for him, I might add) to "look sleek and athletic"....this seems at best, insensitive, at worst, WTF could he be thinking of to actually voice that to a recovering bc lady that he cares about?
Geez, hope he doesn't sport a beer belly. You could have lots of fun with that.
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Gran, I was pretty po'd at the bf...seemed very insensitive to say the least. But me getting po'd does not serve you! I deleted the previous post as it also seemed more than insensitive to you to voice that.
It's your body,,,you have to live in it. If you lke the buxom look, well, so do most men. If you want them to get downsized, do it. If it is important to you to go smaller, well, OK, if and when you are good and ready.
It sounds to me like maybe you are a bit ambivalent about doing anything right now....I can truly understand that. You might need a break from it all. Most of us do.
Maybe let BF know that you may reconsider when you heal up, but in the meantime, could he kindly keep his unhelpful suggestions to himself, as they can easily be construed as quite hurtful.
I'm sure you are lovely. Just as you are.
annie
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Hi Kate33,
I cracked up at the quote next to your dx! Hilarious!
I think you're right about self esteem playing a role here. For me it's been hard enough to deal with the physical challenges post-mastectomy. But when you add the whole self-image/sexuality/self esteem piece it is much more challenging. I do care what the BF thinks, but above all I have to be comfortable in my own skin. I am still trying to figure that part out -- I was never 'buxom' before (I was a B cup) and even though all of my guy friends love my new, bigger 'breasts', I am not sure how I feel about them. I don't want to feel like a walking set of boobs. Hopefully in the next month I will come to some decision. Downsizing surgery is scheduled for November 3 -- but I can always cancel if I change my mind.
Hi Annie,
No offense taken to either of your posts. I think part of the problem is that I have had successes with my new bigger boobs. I can spearfish, paddle the kayak, get in and out of it while in the ocean, load my speargun, get my wetsuit on over the new girls, and lift a 55 pound kayak and carry it to the ocean.
I have told my BF about the successes and he is happy, but I don't think he realized that it was making me unsure of the decision we had made together for me to downsize. I started to think it was unnecessary given all of the things I can now do. He also has not been reading the posts on this site and learning all the potential down-sides of another surgery. So, I think that I need to work with him to help him understand where I am coming from and I also need to listen to him.
It is completely my decision in the end, but sometimes these kinds of road blocks can make couples stronger -- if they talk heart-to-heart. We have faced difficulties before and used them to cement our relationship. I hope that this will just be another opportunity for us to grow. That is the most constructive way I can look at it right now. I do have some time. I appreciate your candid comments and I thank you for your support.
Gran
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Gran-Check out what Dr. Khouri at the Miami Breast Center is doing. It's amazing. He can repair the cut pectoralis muscle and remove the implants and replace it with your own fat. I want this operation myself, but I don't have insurance that will cover it. It's not much money-it's a fraction of the cost when compared to regular implant surgery.0
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Hi Makingway,
I will check him out. I would love to get rid of the implants, but since I am thin and athletic I don't think I have enough fat to make boobs. My PS ruled out a number of reconstruction procedures because of this. : ( I will check Dr. Khouri out, though. Thanks for the lead!
Gran
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Hello everyone. My name is Allison. I am 34 and had a BMX w/ TE's in May. I developed an infection and had to have one of the TE's removed in August. I have been having the worst pain. My chest hurts everytime I cough...both where the muscles were cut and on my sternum. It is a burning pain and pretty constant. I am having trouble sleeping at night, even on the side where they kept the TE in. My neck hurts and my shouulder blades get shooitng pains as well. I am so scared that I have mets or something. I keep freaking out and crying. I am going thru chemo right now too, so I am hoping some of this pain is from SE's and not something else. Does any of this sound familiar to any of you? I thought it could be PMPS....but I don't really know what it feels like. It is definitely nerve related or at least it seems like it is. It is shooting pains, not a dull ache or anything. I am sorry for rambling on. I am just worried and hoping I can find a reason why my whole upper body is hurting. Any thoughts? Thanks for your time. Take Care. Allison
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