Post Mastectomy Pain Syndrome (PMPS)
The purpose for this forum is to discuss the concerns of women experiencing pain several months following their mastectomy. A portion of an abstract from Pain Management Nursing, 2009, describes it this way:
Chronic neuropathic pain affects between 20% and 50% of women after their breast cancer treatment.
Breast cancer treatments are not without side effects; chronic neuropathic pain post-breast treatment (PPBT), also known as chronic post-mastectomy pain syndrome (PMPS), is one such
complication. This pain syndrome was first reported by (Wood (1978)) in the late 1970s; Foley and colleagues described the discrete set of symptoms in the 1980s. (Foley, 1987, Granek et al., 1984) In the last several decades, there has been a wide discrepancy in the reported prevalence of chronic neuropathic pain. Depending on the definition of chronic pain used by researchers,
incidence rates as low as 20% (Carpenter et al., 1998, Stevens et al., 1995) and as high as 50%or more (Fassoulaki et al., 2000, Maunsell et al., 1993, Tasmuth et al., 1995, Wallace et al., 1996) have been reported. Specific to the breast cancer population, (Selim et al., (2002)) estimate that between 200,000 to 400,000 women suffer from the symptoms of PPBT.
Thus, for women who are already devastated by the diagnosis of breast cancer and attempting to cope with the various treatment regimes, the additional suffering from chronic neuropathic pain can be physically and psychologically overwhelming.
Additional information regarding this condition can also be found on another community forum:
http://www.healingwell.com/community/default.aspx?f=14&m=1649831
We welcome your comments!
Edited by Mods to add additional information as the text link above is no longer available. For more information from Breastcancer.org, see our Podcast on Post-Mastectomy Pain Syndrome: What It Is and How Its Treated.
Comments
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I also have thiw pain. It has been three years since my surgery.
The pain got worse with chemo and then even worse with radiation. Now two years after radiation I am still in pain every day. I am scheduled to have reconstruction Feb 2. The PS thinks he can help with the pain. If not, I plan to look into acupuncture. I live in an area that I will have to travel quite a distance for this service.How often did you see the Dr. for acupuncture? I am so happy you have found relief. I tried Lyrica and neurotin. Neither helped at all.
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Betty - I saw the acupuncturist only twice. I asked her why some respond more quickly to acupuncture than others, and she that how LONG someone had endured that particular ailment made a difference, as well as whether they were relatively healthy, or had other physical issues that the immune system was working to maintain. I'll go back two more times this week, and see if we can address the "tight girdle" sensations.
I'm sorry that you've not found relief with any other remedies. Perhaps recon will make a difference. Physical therapy seems to at least relieve some of the tightness, and can feel "comforting" if a good back massage can be included! (IF you can lie on your stomach!)
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Hi Deeds-
Thank you for posting on PMPS. I definitely have this!. It feels like I am wrapped in duct tape really really tight. Does acupuncture really work? I am switiching out saline for silicone with alloderm and hoping this helps because I am in so much pain.
Best,
Jessica
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I'm usually somewhat of a skeptic with chiropractic or other alternative treatments, but found acupuncture successful years ago for a hand ailment (from cleaning teeth too many years), and more recently (3 years ago) with severe sinus headaches. So yes, Jessica - it has worked for me, but I'm hesitant to push it on others.We all respond so differently...
Very curious to hear if any other gals have done what you have coming up: switching out saline for silicone/alloderm.
And...the duct tape analogy is a great one! (I'm rather fond of duct tape, just not "there")
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hi all, I have this pain as well 2 years out. It feels like a brick is perched on my chest and barbed wire is wraped around my chest. My underarms are involved as well and my sternum almost feels like its detach.l. Its not too bad during the day but by after dinner im in a ton of pain. I have tried many pills like Lyrica and Nerontin and they do nothing. Noone wants to give me narcotic pain meds but I really need them. I have had months of physical therapy, gone to a pain dr, and now I seeing an arthritis and fibromyalgia specialist. The ifbro dr, said I have fibro, and I will agree with that as my whole body hurts. I am so glad I did not do implants cuz im sure I would have had them removed. Where did u get the information, Deeds, that 25% of us will get this pain syndrome. I would love to actually read an article on it. Thanks for this thread. Hipchik
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The 25% figure came from my cancer doc. My sister called and spoke with an anesthesiologist in the Pain Medicine Dept. at MD Anderson and this was her synopsis of that call:
He is one of the doctors in the US who has done considerable study and work on the cancer pain issue and in particular, PMPS. He told me that it probably impacts more than 20% of women - possibly up to around 30% of women after mastectomy, lumpectomy and seemingly more so after radiation therapy. He said that it is not widely appreciated or understood by a number of care providers, who have been dismissive about the symptoms. Many care providers have the premise that it is something the patient just has to live with or deal with. He said that oftimes, symptoms do not occur until months or even a year after surgery or radiation and by then, the relationship with the surgeon or radiologist is over and the patient is left to ferret out what is going on and how to get relief on their own. His own wife is 44, has bc, had lymph node involvement, had rads and has PMPS. He said that there is no particular therapy or treatment that works for everyone, but he states that "physical therapy is widely underused" in helping with the syndrome. So PT seems key, but he says that it is important that the PT have a keen awareness of what is involved with PMPS. He mentioned seeking treatment through a lymphedema PT specialist as they are more uniquely acquainted with the pain distribution issues and also, even though there is no swelling or symptoms of lymphedema, he feels that patients with PMPS probably all have some lymphedema going on, along with the pain and discomfort they are experiencing. He said that a Scandinavian study was published in JAMA - I read it and so knew about it. However, all of the women tested had mastectomies but no reconstruction. He said that it appears that fewer women in Scandinavian countries have breast reconstruction after mastectomy. And in this study, it was closer to 30% in terms of women who developed PMPS at some point after mastectomy and/or rads. He said it is unknown whether breast reconstruction changes the percentages - whether breast recon might actually be of benefit and reduce the likelihood of PMPS.
Hipchik - you can Google "Post Mastectomy Pain Syndrome" and find several sites to browse.
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Ok, thanks deeds, Ill google right now.
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Thanks Deeds!
That is terrific info. you just sent to hipchick. I feel so hopeful about the idea of relief because I want my mojo back. Just want to feel human again...
Going to check into all of it. And yes my PS very nonchalantly told me 1. There was nothing that could be done. 2. That it could be nerve pain but there is no reason for it. 3. I am probably processing the pain in my head different than other women.???
I Never not once was told about Post Masectomy Pain Syndrome.
How does one find an acupuncturist that understands this...?
Thank you for sharing!
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Deeds: The physician I spoke with at MD Anderson is Allen Burton, M.D., who heads the Anesthesiology Pain Management department at that medical facility.
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Hi again. My breast surgeon really pisses me off. She made it seem like surgery was a piece of cake. I knew it wasn't, but I was never told of any after effects. I had a seroma, fluid build up, and she sorta pooh poohed it saying it would go away. Well 2 drainings of tons of fluid later it did go away............5 weeks later. And, as far as pain goes, not a word. They should give u a list of things that could happen after surgery so u can be on top of it. Deeds I did a google. Now I feel like I am screwed. There is no cure, and I have had enough physica therapy to choke a horsel. Well I do the best I can. I just want to be able to enjoy my 3 year old grandaughter.
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Deeds, Thank you for starting this and sharing.
I did not search about PMPS yet but I read that most pain is around the chest and arms.
I had bilateral mastectomy Oct-08 with recon. Dec. 08 I felt a terrible pain around my right shoulder. The pain progress to my neck and upper back. Last week of Dec.08 I went for 6 weeks radiation for right breast only. The pain was worse around my neck, shoulder, back but on top of this is chronic fatigue. I'm so tired that I feel like my whole body ache, joints, muscle, thinking even my bones hurt because of too tired and just ALL aches. After radiation I have a bad burn right on my chest. I went from doctor to doctor to asked about the whole body ache. I went to rheumatologist last April-09 and all my blood work are normal excecpt low on vit D. The doctor gave me prescription. Then went for physical therapy for 4 weeks then it did help for my neck, shoulder and arm.
My exchange surgery for permanet implant was Nov.-09 then after 3 weeks had another surgery for right hematoma. After a month I felt all the body aches again, now especially with my legs. I do not see any connection with legs and breast? So I have some good days and some bad days. I'm not even sure what kind of doctor to go to anymore about these body pain. My co worker said maybe I have another sickness like fibromyalgia.
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Hi Deeds (and all women who responded) - I am so grateful for your post. Sorry this is so long but I wanted you to see the letter I wrote to my surgeons at DFCI in Boston last week regarding post mastectomy pain syndrome.
I have stayed in touch with both surgeons via telephone and email, asking them about my symptoms and NOT once did they suggest anything other than "your body is adjusting to the surgery, symptoms should resolve with time." As Deeds mentioned, early treatment is key to recovery. I am surprised that at a top cancer center/hospital they didn't catch this. Here's the letter - I'll keep you posted on the outcome! If any of you have ideas on the best way to make recognition of PMPS part of the "standard of care" for breast surgery I'd love to hear from you.
Dear Dr.'s XXX and XXX,
I am addressing this letter to you since you performed my surgery and I believe you are in a position to effect a change in protocol at Dana Farber/Brigham and Women's. If you feel I should have included other recipients - please feel free to forward my message.
I hope we can work together to ensure that other women don't experience the pain and frustration I've dealt with since my bi-lateral mastectomies. I want my experience with Post Mastectomy Pain Syndrome to serve a purpose.
After 18 months of seeing doctors, researching and asking questions - I found this article that describes my symptoms: http://www.cancersupportivecare.com/surgerypain.html
as well as the JAMA article noted at the bottom of this letter.I can't over emphasize what a relief it is to find this information and to know that doctors are now recognizing that many women experience on-going nerve and pain issues long after their surgeries.
A simple addition to the pre-op appointment would have saved me months of feeling adrift and might have offered earlier relief from my symptoms. As simple as stating: "Some women experience pain and nerve issues after breast surgery that become chronic. If after 4 weeks (or whatever time frame) you have the following symptoms (list symptoms) please call the Dana Farber Pain Specialist (specific information of who to contact to address symptoms).
Dana Farber/Brigham and Women's are world renowned; I know how lucky I am to have such outstanding doctors and facilities involved with my care. In the interest of continuous improvement, I hope we can make the road a little easier for women who endure chronic pain as a result of breast surgery. If I can help in any way bring this to fruition please don't hesitate to contact me.
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Thanks for starting this thread. I had nerve pain in my right arm for the past 6 year. It was under control with Neurontin low daily dose. After the BMX (9/22/09) but during the TE expansion the pain was BAD!! I knew it was my nerve pain back. Neurontin didn't help, Pamelor my antidepressant did not help. Burning, tingling, numbness down right arm (had 9 lymph nodes removed). I thought after the exchange to implants the pain would go away. Not quite. It has gotten better but still there. Numbness and tingling dropping things. I saw neruologist today who said I'm still swollen from the exchange (12/11/09) and is giving me a diuretic to try first. Neurontin won't be increased due to salt component. Maybe increase Pamelor but I hate the side effects. Will try the diuretic and see neurologist in 3 weeks. Maybe will try acupuncture. I even have trouble typing. BTW neurologist said NO capsaiscin (sp) cream as it will initially cause more pain before it helps if it helps. So be careful of that cream!!!
Good luck to all of us with this!!!
Janet
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RE: Shoulder pain: Dr. Burton told me during our conversation that many women with PMPS develop "frozen shoulder" syndrome after mastectomy and that this is one of the complications of PMPS to watch for....
fogandroses...Good for you sending that letter! We need to bring this topic and syndrome out of the closet!!!
Interestingly, Washington Hospital RECOGNIZES this as a valid syndrome and calls it a "newly recognized pain syndrome".....amazing...and it was written about and well-documented in 1998....perhaps earlier.....
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Fog, where is the JAMA article I woild love to read it.
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I had my bilat last Fri. See surgeon tomorrow.
Thanks for the info.
There is a whole 'little' thread on frozen shoulder here on BCO or people's various experiences and the PT that have resolved most issues.
It is in the section for Women 40 to 60ish.
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Thank you Faith....let those gals know about this thread....it is all "connected"...
Another article.....
http://www.rsdfoundation.org/en/Preventing_RSD_Mastectomy.html
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Note: after reading one of the JAMA abstracts (not the full article) it seems I was incorrect in stating that the percentage of women affected is roughly 25%....it's closer to 47%. Several other articles have indicated that it is far more common than we think. Note that in the JAMA abstract, it tends to occur in women who are in the age range of 18 to 39. I'm 58. The JAMA website is below; perhaps fogandroses has access to the full article.
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The article was emailed to me by a doctor who subscribes to JAMA. He's a friend who visited during the summer. I talked to him about my symptoms and when he read the article he remembered and sent me the PDF. It looks like you have to subscribe to get the whole 9 pages. Maybe someone else can get the whole article:
Prevalence of and Factors Associated With Persistent Pain Following Breast Cancer Surgery
By the way, my friend said he was surprised at the high numbers and PMPS must be "under appreciated". Yup!
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Thank you for the thread... I suffer greatly from this. I have stopped all meds now... and BOY did the pain resume. I start massage next week and HOPEFUL acupuncture as well... day like today.. I would have KILLED for main meds....
I have also taken with MD about this.. also... Virgina.... this is a HUGE problem... I am just taking matters into my own hands...
I will read news on this thread . If I hear anymore I will post.
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Fogand Roses:
Your letter is wonderful and the protocol should change! I was not prepared and spent years trying to figure out PMPS. My PS did not mention the possibility of it beforehand and left me feeling I was imagining it when I asked why I might have pain from masectomy. I could have really used the information and the benefit of this medical knowledge they must certainly possess.
I think they don't want to tell you because they somehow imagine that you will not go forward with the procedure or that you will just "think' you have the pain. Also, I think its part of the medical machinery to keep things moving and it is really difficult for a male doctor to grasp the impact to the body and soul of having breasts removed.
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FogandRoses-
How are you treating your PMPS?
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Jessica - soon after my surgery I did weekly physical therapy with a post-mast. specialist.She was wonderful and I got full range of motion back. But the treatments did nothing for nerve pain, pins and needles, electric shocks, numb hand. Since then I've seen a few different doctors looking for explanation and possible treatment. But they all passed me to someone else (plastic surgeon here in Maine referred me to a neurologist, shoulder doctor said I should see a neck doctor for possible compressed disk etc.). I became frustrated and went into a holding pattern, waiting for my body to figure this out and heal. Hasn't happened yet...
I started seeing an acupuncturist last week (have had two visits). I was nervous about needles so she used suction cups. My hand did stop tingling after the first session but started up again after the second. She placed the cups in a different spot - first appointment she treated my left chest below clavicle. Second appt. she treated under my left arm and left back. Next appt. I think I'm going to ask her to use needles! Sounds like Deeds saw great improvement from that treatment.
I am now scheduled to see a neurologist next week.
I agree with your theory about why this information isn't given to patients - a combination of factors is combining so that long term post op care is really lacking. On that note - I have an idea. I'll post separately.Are you getting treatment? Have you improved?
edited to add that my left side was prophy, no nodes taken, no chemo, no radiation
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As stated before, I suffer from this same pain. I was told first that it would proably go away in a year or two! Well thanks,,,,that is a long time. It has been three years and the pain is worse. I have been told it was nerve damage, pain left from shingles,etc. I had one nerve block when they thought it was from shingles. The nerve block in itself was very painful and I actually think the pain was worse after the block. I did not go back for the other two blocks.
Bettye
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Hi Deeds, thanks for your post. I had my bi-lat mast with recon 9 days ago and am experiencing what feels like a tight band around my chest and the skin covering both breasts is numb to the touch. I am hoping that the occasional sharp little twinges are only associated with the healing process and not part of PMPS. A lymph node was taken on my right side, but the numbness/tightness under my arm is minimal - nothing like what it feels like on my chest. My plastic surgeon says it doesn't get too much better and that women just learn to live with it. (not very comforting!) My surgeon says that some of it will go away with time. (a little more optimistic..)
Read the string and am very enlightened and also glad to know I am not alone with this. No one tells you this up front. It wouldn't have changed my decision, but it would have been nice to be prepared. So far along my journey I've been very optimistic, educated myself about everything, have remained strong, and look forward to healing, but this makes me want to cry. I am reading the links that were posted on the string and will be searching for more answers along with you all. The doctors that dismiss this as 'nothing' are nuts! We have to stick together and help each other through this. Does anyone else have numbness of the breast skin?
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Deeds, another "thanks" for starting this thread!
A mastectomy is major surgery that permanently changes your body. I find it very frustrating that so many people - doctors and many of the women here - don't want to think that there may be long-term implications to this. There seems to be a belief that you have the surgery, you go through a recovery period (which for most is easier than they expect) and then it's all done. For some, that is the experience, but for many of us, this is not the case. Whether one has reconstruction or not, there often are longer term side effects from having had a mastectomy, both physical and emotional.
I'm lucky - I don't suffer from PMPS, except for the occasional feeling of tightness across my chest. For the first 6 months after surgery, I had no problems at all. But then the tightness started, and that's also about the time I started to have phantom itching. After 4+ years, it's not as bad as it used to be but I still get itching occasionally and there's nothing I can do to stop the itch - it's drives me nuts.
I often see posts from those who just had their mastectomy and who rave about how much easier the whole process was than what they expected. What they are saying is absolutely true, from where they are at that point in the process; I remember feeling exactly the same way shortly after my surgery. Unfortunately the posts that discuss the longer-term implications are few and far between on this board. And because of that, I worry that some women may be influenced to choose to have a mastectomy or a bilateral because they think it is a easy solution to quell their fears, with few if any implications and side effects. So I applaud whenever there is a discussion about the side effects, as this thread is doing. For those who have no choice but to have a mastectomy, it's good to know what to expect and to understand what may happen after surgery and over time. For those who have a choice, it's important information to incorporate into their pro/con list as they make their decision.
limegreen, since you had your surgery so recently and had a node removed, chances are that your pain is related to that. Chest tightness after surgery is normal. It's also normal to have numbness down the arm and pain in the underarm area after nodes are removed. And as the nerves regenerate, you may feel very sharp pains down your arm. That's normal, and that's not PMPS. As for breast skin numbness, yes this too is normal. For some women, it goes away over time (days, months or years) but for others the numbness remains long-term.
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Deeds, thank you so much for starting this thread!
I am almost 8 months post BLMX with SNB. My PS was very good about pain control and provided Hydrocodone (Percocet) and a muscle relaxer (Soma) for the first 12 weeks. The Soma really helped get me through the tightness period. I weaned myself from the Percocet at about 7 weeks and began to experience pins and needles in almost every area of my body! From the top of my head, to the ends of my toes, I have had random tingling of some sort almost ever since. It feels like mosquito bites. They had subsided, but when I had my nipple reconstruction, they flared back up.
I have good ROM, but upper body exertion, like vaccuuming, shoveling snow or easy "girlie" push ups bring them back. My left armpit is a little swollen at the end of each day. Neither my BS, my PS or the Internist I saw have an answer. The PS conjectured that it was lymphedema, the BS said "No, way, maybe it's 'rejection of the implant'". PS said that would have happened within 15 minutes of surgery. My internist ran a bunch of blood tests and no one seems to have a clue. I'm finally scheduled to see a pain management doctor on March 1.
I spoke to an anestheseologist who explained that with "chronic pain syndromes" the spinal cord gets confused and senses pain even when there isn't a pain stimulus. The stimulant could be muscle movement, but the confused spinal cord feels it as pain. I'm currently taking Neurontin, but haven't been on it for very long, so I can't report if it is helping.
I also understand that scar tissue can be painful, whether it's superficial or deeper. I wonder if that is causing some problems too?
I needed to have a BLM, but I agree with the previous post, we need to be better informed of the side effects to watch out for and there needs to be a better way for us to pursue treatment.
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Hi Ladies,
Thank you so much for bringing attention to this problem. Like all of you, I stumbled around for a couple of years before I heard about PMPS. I went to multiple doctors and had multiple types of therapy. Like fogandroses, I go to a leading cancer center and almost all of the doctors there told me they'd never seen PMPS, never heard of it. That is so demoralizing when you ask the experts to help you and they deny your problem! Even more demoralizing that the problem is caused by cancer treatment, and you have no idea that it can happen!
I am now 4 years out and FINALLY have found a regimen that works for me. I am over-the-moon happy! I finally have my life back. It sounds like everyone needs to do a lot of trial-and-error to find out what works for them. It seems that treatments work for some of us, but not for others. Here's what works for me.
#1. I wear the Bellise compression bra, which is designed to treat women with truncal lymphedema following mastectomy. I do not have any visible swelling or other signs of lymphedema, but the Belisse bra has changed my life! I think the doc at MD Anderson is right on -- he suspects that there is some amount of lymphedema involved with PMPS. You can go to belisse.com to learn about the bra. It needs to be prescribed by a doc.
#2. I see a PT who specializes in lymphedema, as suggested above. I've had several treatments with low-level laser. The treatments have been incredibly helpful. I got my life back after several years of screaming pain! Again, I don't have any swelling or other clinical signs of lymphedema, but my PT suggested that we try the low-level laser anyway. Bingo!! It's made in Australia and is approved by the FDA for lymphedema after breast cancer surgery. Just google low-level laser and Australia, and you'll find more info.
#3. I take very low dose of methadone, very low dose of amitriptyllin, low dose of lyrica and low dose of ativan. I went to the Pain Clinic several times and also to a Physical Med & Rehab specialist. Both were bad experiences for me and not helpful. I finally got hooked up with a fantastic oncologist and a fantastic palliative care doc, as well as an excellent psychiatrist who specializes in cancer issues. Together, they helped me find a combination of meds that really work for me. Very low doses, so I never feel zoned out.
#4. Tried acupuncture for six months and it didn't help. Tried energy healing and even became certified in Reiki. Didn't help. My oncologist finally told me to read "Full Catastrophe Living" by John Kabat Zinn. It offers wonderful meditation and relaxation exercises specifically for people in severe chronic pain. (The book on CD version was great for me; I don't think I'd have gotten the same benefit from reading the printed book.)
#5. Sitting too long still causes pain. Moving and standing is much better. Try NIA movement... it's free-form dance exercise. Worked wonders for me.
#6. I consulted a plastic surgeon twice and both times he told me that further surgery would not relieve the pain and could make it worse. You gotta respect a surgeon who declines to operate and gives you a straight answer. So I never had reconstruction. OK with me because I didn't want to take any chance of making the pain worse.
Hope this helps some of you out there. May you find pain relief strategies that work for you.
By the way, what's the name of the pain doc at MD Anderson. I'd like to write him a note and thank him for taking an interest in this hidden issue.
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michiganmom: Here is the contact info for Dr. Burton at MD Anderson. How kind of you to write to him to acknowledge him in this regard. I am also going to PM you...
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Michiganmom, THANK YOU for your post! I visited the Bellise website and began reading some of the articles....I'm becoming more convinced that I have LE. Eventhough I complained about swelling under my arm to my BS and PS, no one really had much to offer. I don't appear to have any swelling other than that, but one of the descriptions really caught my attention, it reads:
QUESTION CORNER: FOCUS ON BREAST AND CHEST WALL LE
by Nicole L. Gergich MPT, CLT-LANA and Lesli Bell PT, CLT-LANA
Q. Are the symptoms of trunk edema different than arm edema?
A. Although lymphedema is usually identified by swelling, there are typically other symptoms that are present before the onset of visible edema. Altered sensations in the breast and trunk can occur prior to the onset of swelling. These may include, but are not limited to, pins and needles, numbness, aching, and diffuse fullness.(1) The location of pain or discomfort may be ambiguous, as well, and may be outside of the immediate surgical site. It is not uncommon to experience edema in the armpit, around the scapular region, along the lateral chest wall, or around and including a reconstructed breast or implant.There's more information and more questions that are answered at the website. The above citation can be found at: http://www.bellisse.com/resources/articles/ques_corner.shtml
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