Post Mastectomy Pain Syndrome (PMPS)
Comments
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marmak - I am so sorry you are having so much pain. I finally found a pain management specialist who works with cancer survivors and chronic pain management. She is wonderful and was able to prescribe the right medication the first time to help me with my nerve pain. I hope your doctors can find the right combination for you too...
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Marmak: would you say the pain/tightness is just as bad as it was after the reconstruction, or has it lessened, even to a small degree? From all I've read and underestand from this forum and articles, the nerve regeneration may take longer than we expect. Since my March '09 recon, I have less pain, but still have the same degree of tightness, and am still "pushing through" that tightness by doing stretching exercises and yoga every single day. In a way, it's a kind of "in your face" attitude towards these foreign objects sitting on my chest. While riding in the car this week with my DH, my left pectoral muscles contracted severely. I put my left palm up and shoved them medially and held them there, to which my hubby asked what on earth I was doing. "I'm pushing back", I said.
Again, when those nerve endings recognize all new sensations as pain, they really can't help it. Pain in our bodies is almost always an indicator that something is wrong; in this instance, it's more like those nerve endings are just confused.
Don't despair! I truly believe this will continue to decrease as time goes on...get tough with those muscles, though. At least it makes you feel like you've got the upper hand!
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o2bhealthy: Is it inappropriate to ask what medications your pain specialist prescribed for you, maybe I could mention them to my doctor for her to look into? Right now I am just taking vicodin which gives me a splitting headache, doesn't do much for the pain, and I think may be contributing to my sleeping problems (even though I also take a prescribed sleeping pill). I told her nurse about this forum so she could read what others have posted about PMBS, maybe give her a better understanding of what I am experiencing. I see her on Thursday morning.
Deeds: unfortunately the pain is just as bad as after reconstruction. At the time I thought it was just a part of the healing process. No such luck. I have read of so many different options that women have tried and nothing seems to help! Having read all of this in just the past few days, I am still trying to absorb it all and remain positive. .
I have two sisters that also have the BRCA2 gene. The oldest (I am the youngest) was diagnosed with breast cancer three weeks after we lost my father to pancreatic cancer in 2006, which promped the oncologist to recommend that we get tested. She also had a double mastectomy with tram flap reconstruction and is doing great. My other sister had the same procedure as I did and has had no problems. I think even they have a hard time understanding why I complain of pain!!!
I apologize for going and on, this is the first time I have really had a chance to vent!!!
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marmak - I sent you a Private Message...just look at the tabs near the top of the page and click on the Private Message tab, you should see a pink number indicating how many messages are there.
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Marmak - I'm so sorry that you have this pain. Finding this group may be your first step toward recovery. Like you said, at least now you know you're not crazy. That's a big first step. Arm yourself with knowledge.
I'm writing to let you know there is hope. Reading your post reminded me so much of where I was a year out from my exchange surgery. January 2011 will mark the two year anniversary of my exchange and I'm in a different place now. It's not perfect. Yesterday I lifted something heavy without thinking and couldn't sleep because of the pain. At times like that, it all comes back. But this morning I woke up and the pain was gone again. It's an up and down process.
My neurologist recommended nerve drugs as a last resort because of side effects. Soon after that my daughter signed us both up for a water aerobics class. Many times I just floated while the ladies (who were all 70 yrs. and older) did the exercises. Little by little I began to notice an improvement in my pain level. It was a simple thing that ordinarily I never would have considered doing that turned things around.
Also, I found that valium type drugs worked as muscle relaxants and really helped me sleep. My PS prescribed for me - once he read up on PMPS. Pain medication did nothing to stop the pain.
You are not alone. I'll keep you in my prayers and thoughts. Love, Fog
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Happy Thanksgiving everyone. I did all the cooking and I can barly move now, but it was worth it.
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Happy Thanksgiving, Hippy. I hope you're pampering yourself this weekend and eating lots of leftovers. How did your turkey turn out? I tried an oven bag for the first time and it was the best turkey ever. Not sure it's good for you to eat turkey cooked in a bag though? Take good care of yourself and rest, rest, rest. Love, Fog
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Hi Fogg and all my peeps, I bought the bags, but I didn't use it cause I bought the wrong size, so used plan bB,
regular roasting. I did dry brine the bird. All I did was smeer the bird with salt, about 1 tablespoon per 5 lbs. I let it sit in the fridge for 2 days in a baggie,then removed the bag and let it sit in the fridge to dry overnite. Thanksgiving day i rinsed the salt off, put oil on it and roasted it.Easy peasy and it looked like a shiny Martha Stewat bird. Delish!!
i decided I like to cook a big dinner, but don;t like the cleanup, so next time I will do the cooking and bring it to my daughters so she and her husband can do the cleanup.
I am recovered from Thanksgiving, so went to the pool as usual. I try to go every day. The weather is sssssooooo nice. it must be cold up north. Did anyone have snow yet.? Love Hipp
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Hi all, I went to the pain dr today. He gave me 2 trial tubes of voltaren.Its used for fibro myalgia. I have fibro a well as PMP. I told him my skin was very sensitive(redhead), but he said to try a little of it. Im going to try it on my elbow tonite. I have no hope for it, but im giving it a try. I don;t know if I would put it on my chest. I used lidocane once on my chest. I had to rip the patch off after a few minutes. The product I am trying is a gel. Has anyone ever heard of his stuff???????????
I would love to hear form some of the newer ladies and how they are doing. I would like to hear of anyone who had some success with PT. The only thing PT did for me was helping my range of motion. It did nada for any pain.
Foggie have u thought a bout sending your artice to another newspaper or maybe a magazine??
Hoping to hear from u guys, Luv Hipp
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Foggie, I came accross something that said there was going to be a breast cancer symposium in San Antonio next week. If u google san antonio breast cancer symposium u will see what it is . I read thru what some of the topics are going to be. One of the topics is "Long term management of pain due to,and after,primary treaatment of b/c". This is somewhat confusing to what this actually means, but maybe u can figure it out. . The doctor who is leading this topic is
Michael W.Rabow md @ the university of cal san francisco. I hope u can think of a way u can get the dr to read your article., or give him some info about us..
I would like to have your email addy if u don't mind. Mine is
Barbara_mcmanus@hotmail.com......I actually have a real name lol!
Luv Hipp
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Hi Hippy! I'm just running out to an appointment but wanted to tell you I'll look into this. Thanks!!! Hey, your name is the same as my beloved MIL. She is an amazing person and so are you!
Okay, more later. OH and does anyone know why the first page of this thread is blank where Deeds put all those links??? Love, Fog
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Hi ladies-
Hearing from a PS now that my pain might be "nerve trauma" that occured during surgery as it was pretty much immediate. It's the iron bra thing. Was wondering what meds you have found helpful. Read through all the posts and still a bit confused. PM me if you can please..Going for a revision but would like to make a decision based on odds of finding relief. No tingling or sensitivity...just like to canon balls on my chest and extreme soreness at pec muscles.
Especially would like to know what "nerve trauma" feels like?
Love,
Jessica
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Hello,
I had a left mx on 9/30 with SLND as well. I have tissue expanders. I have what feels like bruising on my left side behind my armpit, the place between my shoulder blades, my left side (by the expander). I wonder if this is pain from the expander and will go away or if its part of the post mastectomy pain?
One thing I know that's not related to it is that on the underside of my left arm is an area that tingles/burns/is numb and its constant 24/7. It is there all the time and it rubs on my clothes, even rubs on myself. Has anyone had this and it went away? Weeks after my surgery I called my BS office and they pretty much said yeah that can happen from the surgery and they don't really know if it'll go away. End of story. For a while I tried lightly wrapping the area with a bandage so it wouldn't rub on anything. It helped a bit but was not the solution.Dang it, the mastectomy site is completely numb, you don't feel anything yet you wish you did. I closed my eyes and asked my hubby to touch all over and of course there was silence as I'm waiting and waiting. I was in tears, of course I didn't feel anything, I walked into surgery knowing this but now my left arm just "feels" everything??? There is no happy medium. I am 31 and I cannot begin to fathom how to have sex again when it involves a lot of touching, stroking and my left arm constantly feels like its on fire when it touches something!!! Sorry now I'm just plain angry.
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Oh Letlet,
I am so sorry. I don't think that anything can prepare you for what it actually is like to have the total numbness. It is a shock even though you expect it. I had tingling pain, that sounds as if it was similar to what you experience in your left arm, for a long time after my axillary surgery but it did get better. So hang in there and know that you are not alone.
Hugs
Mandy
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I want u all to know I have felt pretty good lately. So does this mean I'm really feeling better or just getting use to the pain after 3 years. Yes it will be 3 years on dec 11th. Anyway, we all have to enjoy our lives no matter how crappy we feel, others have it worse. Its not so much the pain that bothers me now, its the stress from my doppy doctor. I just want her to simply say she is sorry she did not tell me all the things she should have about what might happen after my bilat, ya know, stuff like I could be in pain for the rest of my life. Just warn everyone of your future patients that they may not come out of the operating room the same as they went in, besides the obvious. Luv u guys, Hipp
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Jessica and LetLet,
I had "nerve trauma" after my bilateral DIEP surgery 9/1 of this year, and I thought I'd go crazy. I, too, bound my breasts and tried to avoid moving because any touching on the inside of my breasts right up to the scar was agonizing. Really bad. Both my breast surgeon and the plastic surgeon said this can happen (wish they'd told me that going in!), and that it will go away. In fact, the plastic surgeon said it was a good sign because it meant that the tissue had a nerve response, so feeling would indeed come back there. Luckily, all that is true, and I have a good outcome. The pain is gone. I don't have any feeling on the flap, of course, but the inside of my breasts where the nerve pain was is almost as sensitive as it was before surgery.
They didn't have any suggestions except medication to handle the pain, but I did acupuncture and I believe it helped a lot. It took about 8 weeks for the pain to resolve, but it's nice to have sensation in my cleavage - for whenever my husband or 6 month old grandson touch me!
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Happy Holidays, dear sisters. I think about you every day and wish you healing and joy in 2011.
With love, Fog
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Hi everyone, Have a wonderful New Year Hugs to all my sista's. Hipp
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I don't now if anyone has mentioned the clinical trials going on for post breast surgery pain, but in case anyone is interested, here's the link:
http://clinicaltrials.gov/ct2/results?term=post+breast+surgery+pain
Anne
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Thanks for the info Anne, I'll send my pain dr an email tomorrow so he can see this site.
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Hi everyone,just checking in to say hi and I miss talking to u all, so lets keep chatting ok!!
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Hi Ladies, I haven't read through all twenty one pages yet, but plan to. I am contemplating a possible double mx. I have been dx for the third time with bc. This time it is in the good breast. I don't know much about this cancer except that it does have an invasive component and is a small tumor. Will know more when I see the surgeon on Wednesday.
My concern with getting a lumpectomy, and for sure a mx is the pain issue. I already have intense burning pain in the former lumpectomies scar tissue. I also have RSD in my right hand and wrist. For those who don't know, RSD is Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS). It sounds similar to the PMPS.
I've have had about 4 or 5 frozen shoulders. I was told by my doctors (ortho, therapist, and pain specialist doctors) that if possible to avoid all surgery and or falls. One went onto say I should live in a rubber room and I was to stay away from needles. I have a sympathetic nerve problem. For example, once when getting a frozen shoulder in one shoulder, it then went for no reason to the other shoulder.
For this reason, I'm at high risk for the Post Mastectomy Pain Syndrome. Or, if it's RSD AGAIN, It could cause the RSD to spread to the whole chest area. I'm not sure of the difference between PMPS and RSD. I know that RSD spreads. I think I'm in the third stage of the RSD syndrome.
With RSD, you feel tingling burning, numbness, and at time you feel like your infected area is on fire. It also locks up your joints. I can't imagine my whole chest area being on fire.
I feel like I'm in a real pickle. There is a part of me that would like to just get rid of my breast and move on. I would have a really hard time adjusting without breast. I would like a reconstructed breast. Just don't want to deal with this forever.
I have to make the decision on a lumpectomy or mx in a few days. Any words of encouragement or enlightenment would be very much appreciated. Thanks
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I thought my appointment was Wednesday...mistake it was today. I am really disturbed after talking to my doctor and her associate. The only way the would do a lumpectomy is if I would have rads. They knowing my history of RSD (pain syndrome) realize that rads is out of the question. Also Hashi's thyroid (autoimmune) is another reason they would not give me rads. They highly suggest a double mx. My breast surgeon said that her rsd patients have less of a problem with mx over lumpectomies. She seem to lean toward a mx without reconstruction. I strongly disagreed. She said if I did a nipple sparing mx that I would not keep my nipple. Done! That was it....I don't think I'm going to do anything at all. Right now...I'm not a happy camper.
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barry - how frustrating...can you get a 2nd opinion?
It is your body, if you want a lumpectomy without rads then there is no way anyone can force you to do the rads (unless they are going to come to your house, put you in restraints and drive you to your daily rads appointment).
I cannot remember if your cancer is invasive or not but if it is invasive and ductal most BS will not do nipple sparing procedure as there is a higher chance of recurrence. With your history RSD/CRPS, your BS may be leaning toward no recon as with the recon (dependent on what type you have) there is more trauma to the area and that could lead to a higher chance of RSD/CRPS.
I hope you find a solution that works for you and still removes the cancer.
Best wishes!
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o2healthy...My dx is invasive filtrating carcinoma with a few different types of features. Since it is stage one and a slow moving cancer, I am just temped to leave it be. I don't like any of my options.
My surgeon wants to do a blmx since the other breast was dx twice with high grade como-neu dcis twice.
My doctor knows that radiation would put me at high risk for RSD in my chest area. Plus, my thyroid in that I have Hashi's. She feels that without rads or mx it is a matter of time before I am again dx with breast cancer.
Right now, emotionally I can't handle having no breast. My breast doesn't define me, but it feels like I would be cutting part of my female identity. It's just how I feel.
However, if this cancer was high grade, I would say cut it off now.
In the near future, I will have an appointment with a pain specialist. Hopefully it will help me make the right decision.0 -
Oh barry my heart just hurts for you... I hope your pain management doc will be able to help you with your pain and help you with your decision.
I never paid much attention to my breasts when I had then but I did miss them when they were gone. Emotionally I am not sure if I could handle not having recon done either. Even though these new foobs are a perky but poor substitute to my original girls I do like having cleavage and feeling feminine. Please let us know what your pain doc says.
Best wishes and gentle hugs!
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barry- I have some good news. First, find another surgeon. There is a 'new' type of reconstruction using the Brava system. It was developed by Dr. Khouri at the Miami Breast Center. Google it and read how different it is from what we're being offered.
http://www.miamibreastcenter.com/breast-reconstruction/after-mastectomy-miami.html There is a forum topic here on bc.org. I think it's under micro fat grafting. I haven't had this operation, yet, but I am hoping to.
I had a skin sparring, nipple sparring unilateral mx. I was dx with was invasive lobular carcinoma. My surgeon wanted to take the nipple, but I refused. We comprimised and she did a biopsy of the nipple-no cancer there! If you don't agree with EACH and EVERY thing on the consent form do NOT sign it. Make the doctor change it.
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makingway...thanks so much! I will definitely check out the Brava system. I have no extra fat on my body to spare. I hope the doctor I have now will consider such a compromise. She was my first surgeon, and did a great job. I felt bad because my second dx, I went to another breast surgeon that my naturalpath recommended. The second surgeon did a great job, and partner with me, making me a part of the choices. My second surgeon moved out of state so I went back to the first surgeon. I am not sure how she would feel about me jumping ship again. She maybe old school and not know the Brava system. I hate hurting people's feelings...even doctors
I hear you about the consent form. I do not want to wake up from surgery with two large holes in my chest.0 -
Barry,
I had a BMX with immediate DIEP flap reconstruction at John Hopkins on 9/1/10. There are similar procedures that use your own tissue if you don't have enough tummy fat. With your history of pain and complications I would strongly urge you to look for something using autologous tissue (ie, from your own body) rather than some sort of implant. If you need more info about what Hopkins (and other hospitals have to offer), pm me. Tissue expanders, especially if you need radiation, can be problematic.
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Thanks hester...I seen utube video on DIEP flap reconstruction and read painful testimonies. I like the idea of using your own fat. I'll indulge and develop a tummy
I read that radiation is not good for those who are sympathetic nervous system disorders so that is out of the question.
My bs wants me to see a pain specialist to help me decide on the best treatment...she said that I may need a block before surgery. It stinks that I even need to do this.0
