Post Mastectomy Pain Syndrome (PMPS)
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How do the lidocaine patches help the chest tightness? I too, although less than 3 months out from BMX, suffer terribly from this although it comes and goes but it is present, it is terrible. Thanks.
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Magic--I want to thank you for articulating exactly my thoughts on this board about PMPS. I agree that most breast surgeons and plastic surgeons do not want to address this side effect because it is kind of like the "necessary evil" side effect of breast cancer surgery. The nurse practitioner at my breast surgeon's office seemed surprised when I mentioned that I still suffered from numbness and heaviness in my right arm almost three years after my BMX and ALND--she even said that most of her patients do not have this numbness this long after surgery. She was totally unaware that massage therapy, chiropractic treatment, and Graston massage could be helpful for these types of side effects (I utilize all of these treatments regularly and they are extremely helpful)!
From being part of this discussion, however, I know that I am not alone suffering from PMPS so it does make me feel better to know that I am not an oddity or that even something was done wrong during my surgery. It was also never disclosed to me that 25-60% of women undergoing breast cancer surgery suffer from PMPS and if that had been disclosed, I think I would have done more research before deciding to proceed with the ALND; I may have opted for a sentinal node biopsy instead. Hindsight is 20/20.
I am not a Facebook member nor do I wish to become one.
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I spent almost 10 years suffering from PMPS after a Left Mastectomy. Nowhere did I hear about PMPS until a few years ago! No one seemed to know what the problem was until one of my docs mentioned it. I had been going in to find out why I had so much back pain. It took 5 different docs to finally diagnosis bone mets. Anyway, what helped the most was physical therapy. I went in for the back pain and as they evaluated, discovered the scar tissue and numbness. Well, they used mostly massage to break up the scar tissue and guided stretching to ease the tightness in the chest and underarm area. After 2 months those areas were so much better! (The pain turned out to be bone mets after 13 years from 1st diagnosis!)
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Lori, I didn't have any nodes removed and still have PMPS. As I understand it, it can happen with a lumpectomy. I understand what you say about hindsight. I am not sure, even if I really knew about PMPS, I would believe it could happen to me. My husband and I did come across one article before I had my surgery but I just never would have believed this could happen. I did this prophylactically--so my doctors told me this would be easy. I was even told I could go back to work 2 days after the BMX. I went back 9 days after. But I was miserable. Still kind of am.
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Balthus: Theoretically the Lidocaine patches are to diminish if not eliminate the chest tightness. I say theoretically, because they have not yet been approved by my insurance co. since my dr. visit 4/6/16. I am also now on Desipramine and took first dose last night and today very groggy. I think these meds are not a cure all as I was given 11 refills (that says something). So sorry you are having such pain and hope you and each of us suffering from PMPS find some relief. By the way, the pain doc called my condition Complex Regional Pain Syndrome and I did not ask if that was just for insurance purposes or if there is some other reason not calling it PMPS, such as PMPS might be a subcategory of CRPS.
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Forever49: The dx of bone mets must have been a surprise to you when you were in PT. May I ask what your status is now 3 years post diagnosis?
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Does anyone know when scar tissue breaks up in the chest from a mastectomy what happens to it?
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Perhaps unrelated in this thread but does anyone have any suggestions for something topical to use on my scars to make them fade? Thanks.
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Boyzbeebs: Great question and I could pose a not too scientific answer but will wait for a more knowledgeable source to answer.
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Balthus: I used Scaraway but did not work probably because I gave up after a couple of weeks.
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After a visit to a pain specialist and an assessment that I have Myofascial Pain Syndrome (MPS), I've been researching that topic. Interestingly I have always searched for new info under the topic of PMPS but now I find this additional source of information about causes, symptoms, and related potential treatments of MPS. This new search helps me understand the cause of trigger point pain which my doc found on physical exam. As there are many resources for MPS found with a Google search, I am not going to post them all here, but rather suggest that this might be an alternate source of information and an impetus for me to continue with my stretching exercises along with possible trigger point injections in the future. One study I will post looks at the causes and prevalence of MPS in women who have undergone treatment for breast cancer. Additionally, the work of Dr. Laura Esserman at UCSF does point to MPS as she uses/studies trigger point injections for women with PMPS although I do not think she uses the term MPS. Overall, I found this new area of research being done to be promising.
Has anyone else been diagnosed with Myofascial Pain Syndrome? Successfully treated for it?
http://www3.uah.es/…/publ…/documentos/Incidence_MPS_2010.pdf
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scar cream: I used biocorneum. Not sure on spelling. insanely expensive. but it was recommended. I don't think my scars look super amazing. I have 4 and one looks redder than the other 3 and I think they were all treated the same. I did do a lot of scar massage in the very beginning. or my husband did. He liked that.
myofascial: I don't have pain syndrome but I do have restrictions and I see a MFR PT. I love her. She is amazing. She has expert level training. I don't think all MFR PTs are created equal as I had seen another expert level PT in October and this one blows the other away. My new one had cancer herself. Maybe that is the difference. My insurance has run out and I still see her once a week. I wish I could go twice a week, she makes me feel better. Physically and mentally.
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HI, I am new to this forum so I am sorry if people have already given information. I have two things I wanted to ask about. I had a bilateral mastectomy 5 years ago for high grade DCIS. I was in a lot of pain for about two weeks. After that, I noticed I had very bad burning pain under my left arm and across my chest. I attempted to just deal with it for 6 months until I couldn't deal with it anymore. I went to my doctor who diagnosed me with fibromyalgia which I didn't believe I had. So, I went to a pain doctor and he diagnosed me with post mastectomy pain syndrome and said my intercostal brachial nerve was damaged. We tried many nerve blocks that did not work and I was finally put on a high dose of Neurontin. Neurontin does work well, but it is cause me to have short term memory loss. However, when I try to reduce the dose I am in severe pain. Does anyone no of anyone who specializes in PMPS in the Chicagoland area? I am kind of at a loss.
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Whether we describe our pain in the terms of PMPS, MPS – Myofascial Pain Syndrome or some other descriptive label we are all trying to communicate the story of our pain to a person (physician) who often speaks the language of science and not of human experience. Andrew Solomon writes a rather long, but extremely excellent review of physician authors and their books' about bridging the language gap between medicine and human experience. In one section he quotes Siddhartha Mukherjee (Emperor of all maladies: A biography of cancer) "Medicine … begins with storytelling," he concludes. "Patients tell stories to describe illness; doctors tell stories to understand it. Science tells its own story to explain diseases." In other words, explaining what is going on is part of the treatment itself"
Lastly, for me, this is so important for me to remember " If we expect to be understood fully, he adds, we will be constantly disappointed – and then, "how could we ever be anything other than permanently enraged?" If Phillips's message of accommodating incomprehension is pertinent to Eros, family and friends, it is likewise central to our interaction with the doctors who heal our bodies, or fail to do so. We want our doctors to understand us, and, in many ways, they never will, and accepting that frustration requires the literary language at which all the physicians mentioned in this article succeed."
I would add that the space provided here in BC.org is perhaps where the communication between one human experiencing suffering, joy or sorrow and another human being is where we seek and often find understanding that may or may not be available in our communication with doctors.
http://www.theguardian.com/books/2016/apr/22/literature-about-medicine-may-be-all-that-can-save-us
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laurajean, I too am desperate to find someone in Chicagoland area or Milwaukee, even Madison to go to for help with PMPS! I read about procedures that could possibly help- injections, nerve blocks, nueroma surgeries, but want to go to someone with experience with women like us! Left in such pain by doctors and surgeons who seemed so knowledgeable and caring has left me afraid to choose the wrong doctor for my pain...but it is taking my life away & i need to get relief ! Not just drugs...
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no response since April 25th
this is why FB is more affective...went to see Pain doc recommended by my BS, wants to bump up my Gaba (next step Effexor) prescribed some lymph therapy...said costal nerve block only 50% chance of improvement in pain...prescribed compound cream but said it would probably be "pricey" - not too encouraging so i am sad tonite...0 -
Notbuyingit: I had a somewhat similar response from my pain doc about costal nerve block. She wanted me to stay on Gaba 900-1200 mg day, but added desipramine 75mg day and lidocaine patches. The addition of desipramine has not changed the pain level and my insurance just approved the lidocaine patches but I do not have them yet, so can't say if they will help. I think she wants to see if the lidocaine patches work when applied to the sensitive intercostal spaces before going with the nerve block. She also said the nerve blocks are temporary and it could be something I might need indefinitely. I see her again next week, so hope I have at least a few days on the Lidocaine patches before my revisit.
Is a 50% chance of pain relief enough of a chance to try it? I'm thinking for me it would be.
Like you, I wonder is there is anyone out there who has had nerve block? Results?
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My SIL has nerve block shots for migranes. She says they work for a couple of weeks & then have to be re-done.
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Notbuyingit: Is it possible to ask your surgeon for a referral to a pain doc? Also, maybe Chicago has a yearly magazine that publishes Top Doctors by specialty. You can check pain doc websites for some info on treating cancer treatment pain and mention of mastectomy specifically. I do hope you work on finding a doctor soon so you can begin to heal.
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thanks for responses! I will try the Gaba bump up & the lymph therapy first...maybe the therapist can recommend a more local pain doc ( it is a lymphedema therapy clinic at the cancer center) i need to get back in the pool! There was a woman on FB that had success with a spinal stimulator - she claims 24/7 relief! Just makes me nervous messing with the spine - plus, just like the meds, i'd rather fix the pain than mask it !
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Notbuyingit: Pain management docs often work from the least invasive interventions and use your response to each treatment in determining what to do next. I have not read of anyone getting the spinal stimulator as first line of treatment for PMPS. It sounds like you are already connected to a good lymphedema specialist at a cancer center. I hear you about exercise, it is easy to put off when in pain even knowing that when I do it I can feel better or at least have better range of motion in shoulders.
I do want to hear what your cancer center recommends.
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Hi, I go to see a pain doctor in Arlington HTs Illinois but personally, I don't think she knows how to handle PMPS. The only doctor that I have read about that does is in Australia for pete's sake. If this is so common, why aren't there any doctors who specialize in it in the United States. It is ridiculous.
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There are docs in the U. S treating PMPS. You might look at the following link to an article about Dr. Laura Esserman's work on PMPS at Univ of San Francisco.
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Hi...this is my first time to involve in any blog,I'm hoping I can get some good ideas to help my older sister who's now malignant breast cancer. We been had 5chemo done but her cancer is already spread. Hurt to say her liver is not functioning anymore couses of hard to breath. She is in my country in Philippines so I can barely help her except try to cover financial needed... Her doctor was supposed to do last chemo last month April 20 but coz of her situation they cancel and the doctor not sure if he still gonna do a chemo on her until she will not able to stand and can handle the chemo. Now my 2sister taking care of her at home but they are not traine to taking care of cancer patient like my sister. We don't know how to help her, encadrage her to also try to be more strong which is we know she is. She feel the most terrible pain the whole time. She boomit water and she don't wanna eat not even take her medicine. She is 45years old she have a lot of things she wanna do and fix to have a better life for her kids... What should we do to help her and reduce the pain and she can atlest function daily.
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I posted first about the nagging pain on 11/6/15. My pain level then never exceeded a 5. By 11/21/15, my pain level had reached a 10. I have never felt pain that excruciating in my life. It felt like someone stuck a knife through my upper arm and left it sticking in the bone. It was searing, constant and completely debilitating. I was on pain medicine for another condition and doubled up on that which did absolutely nothing. I then tried extra strength aspirin guessing that since my nerve pain meds didn't help, maybe nerve damage wasn't the cause, maybe it was inflammation. So, I took an extra strength aspirin which surprisingly reduced the pain from a 10 to about an 8, not much but very significant when the pain is that intense. Since that helped a bit, I figured a stronger antinflammatory would help so I took an Aleve and got better relief. I continued taking the Aleve every 6 hours around the clock for the next 3 weeks just out of sheer fear that if I stopped, the pain would resume although I was able to move it again after about 5 days on the Aleve. I skipped a dose and noticed that the pain was pretty much gone so I don't know if what I experienced qualified as PMPS since that's caused by nerve damage. Whatever the culprit, the Aleve helped. After a couple of days on the Aleve, I had to take nausea meds because it killed my stomach but I got through it and as of today, I haven't had a recurrence. I'm more careful now to use that arm less and no longer keep it bent for long periods of time like when holding a phone to my ear. I use a head phone now when I need to use the phone. Keeping it straight as much as possible helps keep the pain at bay.
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I read about Dr. Esserman's work but I can't afford to fly to California. Does anyone have any suggestions on doctors that take care of PMPS pain in the Chicagoland area? I appreciate any suggestions. Thank you very much
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2 Questions:
First: My pain doc (anesthesiologist) suggests a possible stellate ganglion block treatment for my PMPS if Desipramine and Lidocaine 5% patches do not work. Has anyone had this treatment recently? I see a few posting from 2007-08, but would like to get more current insights. I have Googled the information, but it all looks complicated and with complications.
Second: an alternative might be for me to be enrolled in a clinical trial for some type of spinal med. Although I do not have the specifics re: the procedure, I am hesitant because it is 1) a pilot study and 2) is being funded by a drug company. To me both of these conditions are red flags for my non-life threatening PMPS condition. Any thoughts?
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I'm replying to my own post because for some unknown reason no one has addressed the question of clinical pilot studies. In my own search for an answer, I've found many articles that indicate the advantage of clinical pilot studies is that they "are defined as those clinical trials used to acquire specific essential information about a drug or device before beginning the pivotal trial (ie, the trial that will be used to make specific claims about efficacy and safety). "
On the other hand, "A major problem, then, with clinical pilot trials is that their results are often overinterpreted, misleading and misguiding investigators and interested readers to consider potential benefit or potential harm when the statistical power to do so is woefully inadequate….For the readers of Circulation, it is important to know that pilot studies are defined as such owing to the uncertainty about the generalizability of the results they report. These studies are interesting and quite often novel, but assessment of their therapeutic implications must await adequately sized definitive pivotal trials."
Due to the nature of my PMPS problem and the risk/benefit ratio, I've decided that a pilot study is not the direction I want to take.
Circulation. 2009; 119: 1694-1696 doi: 10.1161/CIRCULATIONAHA.109.861625
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magiclight - thanks for checking back & sharing your research. I knew nothing about pilot studies so am glad for the information.
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I trying a Quell nerve stimulator - totally non-invasive, it costs $250, and then about $30 monthly for the electrodes and comes with 100% money back 60 day guarantee, if bought directly from the company. I figured it was worth a try, as they only thing that I've found that works for my pain is topical marijuana cream and oxycodone, and even that only takes the edge off - so what the heck, right?
I decided that a Quell was worth a try, I've been using it for 10 days now, and let me tell you - IT"S WORKING!!!!!! It's helping all of my pain issues, the post mastectomy, neuropathy, the arthralgias that are caused by the aromatase inhibitor, the osteoarthritis pain, the fibro pain - all of it. https://www.quellrelief.com/ The clinician tab has more of the technical info on the machine. I was initially wearing it 24/7, but the last couple of days I've taken some 3-ish hour breaks from it, and the pain relief continues, I've been able to cut my pain pill usage almost in 1/2 in a week.
This is what I posted this on a FB forum, it tells a little about it.
I'd like to talk a little about the Quell unit - it's very new on the market. It's actually quite different than a tens unit (the similarity being that they both use electrical current to stimulate nerves) Tens units work similarly, but if you go to the Quell website, under the clinicians tab, you'll see that the Quell unit works differently, implanted simulators work on only the dermatomes that nerves go to. The Quell unit works on the Gate Theory of pain management (check out on Google). I've had my Quell unit for a week now, I've been able to drop my pain pill usage almost in half, I think that I could drop it faster, but worry about withdrawal symptoms, my pain level has dropped by more than 50%, even with the lower dosage of pain meds. I'm able to accomplish a lot more, with a lot less pain. I can tell you over the last 6 years I've tried every pain med on the market, antidepressants, anti spasmodics, anti convulsants , all the neurontin type drugs, trigger point injections, neuroplastic brain techniques (which interestingly are sort of based on the gate theory too), several different types of PT (myofascial release is really the only one that helped at all). I've never managed to get the placebo effect with any of them. But by the end of the 1st day with the Quell unit on, my pain had already dropped, and now a week later it's still dropping. My physical therapists both said that they believe that the technology makes sense to them and are very interested in more info (they are researching it more for them selves). Hope my rant is ok.....but this is the first thing in 6 years that I actually think might work for me. I have chemo induced fibro, aromatase inhibitor induced arthralgias in all of my joints, severe neuropathy in my feet and legs, PMPS, osteoarthritis in all of my joints (thanks to the AI), and I'm sure a few that I missed, and this device is helping with all of my pains. I feel like I may be able to get my life back. OH, and I have tried TENS units and they only made it worse. And now I've seen my PCP and chatted about it with my old PCP, and they are both super interested, both knew alot about the Pain Gate theory.
So for now, I'm going to keep wearing it, and hope that it continues to work for me. You're welcome to ask me any questions about it.
Linda
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