Post Mastectomy Pain Syndrome (PMPS)
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Fog: it seems that you have made some pretty strong connections in the medical world, and this woman at Dana Farber might be one to add to your list.
What would a steering committee do? I'm not too well-versed in committee jargon:)
The Times has lost out, if your article isn't published. Again...isn't there a compassionate radio DJ that can give you 2 minutes?
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after phone calls & e- mails 2 my BS, i saw her today. She has ordered a MRI ..i go on Thursday & see her Monday...so the wait begins again..she thinks its fluid..not sure why..is it from the allorderm, the implant, lymph nodes..so even though i didnt have any lmph nodes removed..i guess my question is any thoughts why i have swelling & only on rt side? it gets warm when it swells, but not red...its not always either..but frequently....thx ladies
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Tink - you've probably already covered the possibility of lymphedema with your doctor but that's the first thing that came to my mind. Sorry you're in pain. Hug to you.
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My article wasn't published by the Times (the bad news) but now I can share it with you all (that's the good news!). I hope you'll see some of your own stories in my words. I still can't read it without tears. Instead of trying another newspaper maybe it would do the most good if we all emailed it to 5 people (especially doctors and women friends) and asked our friends to do the same? Let me know what you think. Love, Fog
Follow up Care Ignores Physical Trauma of Breast Surgery
Two days after my bilateral mastectomy, I knew something was wrong. I knew the pain on my left side was not normal because by comparison my right side was pain free. Since the cancer was on my right side no lymph nodes were removed from the left. I expected to have less pain there, not more.
I contacted my surgeon and described my symptoms: electric shocks originating in my chest, radiating down my left arm, numbness in my hand and arm, burning pain and numbness extending to my shoulder blade, tightness around my chest. I told him my right side was symptom free. His response: "This is a normal part of healing. Symptoms should resolve with time." After several similar exchanges with my surgeon I gave up. His message was clear. Time to get back to normal. For my surgeon my health crisis was over. But for me it had just begun.
Dr. Robert R. Edwards, Ph.D., of Harvard University, is currently studying chronic pain after breast surgery. According to Dr. Edwards, research has revealed that persistent pain is strikingly common among women undergoing invasive surgical procedures for breast cancer treatment, with estimated rates of long-term pain approaching 50%. "A recent Danish study of over 3,000 breast cancer survivors revealed that nearly half of these women continued to have pain two to three years after breast surgery, he says. "The majority rated their pain as moderate to severe in intensity. In general, chronic pain after breast surgery is an under-recognized problem, and in this study, only about one quarter of the women sought pain treatment."
My pain was relentless. Before surgery I was happy, healthy and physically fit. Now I couldn't sleep. I couldn't exercise. I was still taking pain medication, half a pill at a time, trying to make the prescription last. At night I asked God to give me a new body, just for a few hours. My husband rocked me like a baby until I slept. I took slow walks through the neighborhood every morning with our old yellow lab. After a while, when people asked, I told them I was fine.
Pain became a member of our household. It sat with us at the dinner table and woke up every morning in bed with us. It kept me at home when my family went out. We couldn't travel. My gardens sat untended through spring, summer and fall.
Dr. Edwards admits not enough is known about the causes of persisting pain after breast surgery. "Post surgical pain can stem from nerve damage during the operation, from inflammation and swelling, from sensitization of the incision area, or a variety of other causes," he says. "It is noteworthy that in most research so far, surgery-related factors don't seem to predict very well who will develop long-lasting pain. We are working to determine whether this sort of sensory testing is predictive of pain symptoms following breast cancer treatment. Identifying women at high risk for persistent pain would help us provide targeted, individualized pain treatment to at-risk individuals, and help women to make more informed treatment choices." He says a multi-modal approach to pain management, starting during the acute post-surgical period, is strongly recommended by pain specialists. "Ideally, a practitioner with expertise in chronic pain should coordinate these interventions. It is certainly unreasonable for a patient to bear the burden of investigating, selecting, and evaluating these varied treatment approaches."
I saw a physical therapist, a massage therapist, a neurologist, a shoulder specialist, an acupuncturist, a Reiki practitioner, and another breast surgeon. I read medical textbooks. I was grateful for my right side, not because it didn't hurt, but because the unilateral pain was proof that my brain was capable of processing pain correctly. There wasn't something wrong with me, as some of these care givers implied. There was something wrong with my left side.
My research led me to an article in the November 2009 Journal of the American Medical Association: Prevalence of and Factors Associated With Persistent Pain Following Breast Cancer Surgery. After eighteen months of desperately searching for answers I had a diagnosis: Post Mastectomy Pain Syndrome. There were thousands of women suffering from these same symptoms. I was not alone.
I am now a member of an on-line community of breast cancer patients who suffer from this pain. We come together to share research and treatment suggestions. My story is, unfortunately, their story. But perhaps there is power in numbers.
Now that we know chronic pain following breast surgery is common we want to know why we were not advised of the risk before surgery so we could make informed decisions about our medical care? Why our doctors ignored our complaints of on-going pain? And why, despite the fact that this research has been around for over fifteen years, there are women going into surgery at this very moment who will suffer as we do, without recognition or treatment of their pain.0 -
Oh Foggy, that was beautiful. I will be happy to send this to my BS. Is getting published in a medical publication as hard as getting published in the NYT?? Or Foggy perhaps in a magazine like Oprah or Womens Day . Thanks for all your hard work. Im sure you will find a home for this article. Love Hipp
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Thanks, Hipp. That means a lot to me. Hope you're having a good weekend.
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Hi Ladies,
Well what a fun time I had @ my MRI..NOT!!! The MRI was supposed to be a ½ hr, but instead it was an 1hr on that table & even though they have cushions, it hurts laying like that. After the MRI, they wanted to do an Ultrasound & I gotta tell you, the radiologist was a real jerk!!! I think he has a fetish w/ implants...he wanted to know why I was having this done. I said it was b/c I have been having swelling for several months now & it's not getting any better, if anything, it swells more & gets hard. If my implants were like this all the time, it wouldn't be so bad, b/c the right side fills a bra cup better & looks better...lol..it just feels weird & hurts @ times...so this radiologist kept moving my implants & he asked why they were not even...he said my left one that I just had fixed is still to the side & basically b/c it looks "lopsided" (not the word he used, but it meant that) I am getting the feeling its swollen...UM.....NO!!!!!! I know the difference when something is swollen..he said my skin is NOT thickened so its not swollen....he kept moving both implants towards the middle...I came so close to saying something to him ....there was a woman in the room with us. I don't think he was doing it b/c he really has a fetish, but still..a little more sensitivity would have been nice. So he suggested I go back to my PS & my BS of course goes by what they say. So thank goodness there is no leak or any fluid..now just to figure out what is going on & what to do abt it...oh what fun more dr's!! Just what I need now @ wk..my boss said to me that if I have any more surgeries or have to keep going to the DR I wouldn't be able to work there..its so nice to have support. Think I like having these surgeries? Think I like being in pain & going to DR's? NO!! thx for listening..more to come !!! Tink xoxoxo
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Hi Again,
Ok, I have been reading on both boards (1 step & pain) abt tingling & pain in arm(s) after MX. Well after my BMX I didn't have that, I had major pain, but I just had my left implant fixed & since I woke up from that surgery I have had pain/tingling, numbness & weakness down my left arm. I also have had major pain in my neck & back (upper). I have been thinking & figuring it's my herniated disks w/ new symptoms & just even went for an MRI. (I get the results on Wed when I c the Neurologist) but have been wondering maybe its related to the surgery since several of you have complained abt similar pain...can anyone help me out if u have had it & what u did. I am in agony & basically have been taking so much pain pills...I don't know what else to do. I have done 2 doses of steroids already & wow has my face blown up....now I am done w/ the steroids again & am in agony. I read that some of u saw a neurologist.What did they do for u? Any pointers, tips anything would be great. Also, has anyone been on disability after u had a MX (w/out chemo or radiation)..if u have, wld u plez PM me if u don't mind me asking u a few questions...I do not plan on having to that, but after my bosses comment, I want to b prepared for anything!! Thx & stay cool!! Fog, keep on trying w/ those articles..sooner or later they have to be published..thx for doing this Fog!!! Hugs to all Tink!!
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Tink - I'll be thinking of you tomorrow when you get your MRI results. Hoping for some real answers for you and some treatment that will target your pain. I'm so sorry about the way that x-ray tech treated you. I'm sure he meant well but please...
I never told anyone this because I was too humiliated but a young doctor came into my hospital room followed by a group of even younger doctors, the first morning after my bmx. He unbandaged me while bantering with the group (not how I imagined my husband's and my first look at my chest). Then he put some clean gauze on and some more tape. Before he turned to leave he said "And this is how we check for symmetry" and he pressed pretty hard on both sides. Then he said, "oops, no nipples!" and left with the group laughing. Several times I've almost told my plastic surgeon but the words just won't come out. I dont' even know his name. But I'll never forget how he treated me. I'd say some sensitivity training is in order.
Love, Fog
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Typical doctors in training ggrrrr!
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Fog- Great article. I hope it gets published and read by every woman before breast surgery. Those docs sure do minimize things, whether it be side effects or complications such as pain. What a jerk that doctor was who came to your room after your BMX! I swear some people are just so....so.......stupid! He should have to wear a rubber penis on his forehead while making rounds. Let him see how it feels to be the subject of a freakshow...0
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Hi Ladies,
I was researching Post Mastectomy Pain Syndrome and came across this thread. Earlier there was discussion about acupuncture for the use of pain relief. I can say that as an acupuncturist who works in a breast health clinic, I see a lot of breast cancer patients for chronic chest and breast pain, whether it is post mastectomy, post radiation and/or chemotherapy, or a combination of all of these. Female patients often describe kinds of pain like stabbing in the breast, general achiness, pain in the sternum, burning around an area, a "pulling" sensation during movement, or numbness under the arm and in the armpit. I know there are currently not many research studies published about the efficacy of acupuncture and post mastectomy pain, but I can say from my own clinical experience that it is definitely something to try. I have seen a lot of women experience a reduction in pain, some almost completely. Of course, results vary by patient, and multiple factors influence the outcome, including individual cancer treatment history, length of time the patient has been experiencing pain, and preexisting health conditions. But overall, I have seen very positive results, and I think it is an extremely good option for women who experience this type of pain. Acupuncture is an effective, safe, non-invasive way to help with a myriad of health problems, and I wish that every breast cancer patient had access to acupuncture in combination with their conventional cancer treatments. When doctors say the only other options are narcotic pain relievers or additional surgery, it seems like it would be worth trying first.
In good health,
AcuApproach
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MakingWay - thanks for your support and the laugh!
AcuApproach - Thanks for your post. I agree acupuncture can really help. It's too bad most insurance (including mine) doesn't cover it. I've decided to go every other week and pay out of pocket. Our daughter started medical school yesterday. Very exciting - we are bursting with pride. She swears by acupuncture, diet, exercise...I'm hopeful she represents the mindset of the amazing young people who will be practicing medicine in the coming years.
To all lovely women reading this, you are in my thoughts today and always. Love, Fog
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Hi Fogg, my pain Dr is Asian and he has not suggested acupunture. What pain are u having now Foggy? I thought you were pain free now. Keep us posted. Hip
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Hi Hipp - I go to acupuncture for "maintenance" now. I'm not in pain - just have those darn nerve/muscle spasms. But not if I wear a bra 24/7. The neurologist said either that or medicaiton so I chose the bra. It feels like acupuncture balances me and I do tend to get out of balance hormonally - ever since I was 12 years old. Acupuncture just stopped my hot flashes with one treatment! I also think it really helped when I was in pain. Something to think about anyway...
How is your pain level these days???? Love, Fog
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Its the same bad. I will ask my pain dr what he thinks of acupuncture. Im gonna see him at the end of the month. I have had hotflashes for years. I really have had it bad lately. I was in Macys last week end and the sweat was dripping off me. This was inside, and in Florida the stores are kept freezing so customers stay along time rather than going back outside. he has not mentioned acupuncture, I wonder why?? Keep in touch everyone , Love Hipp
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Hippy, acupuncture is definitely worth a try. It's important to find a good one. Ask around for someone with good results. I drive half an hour to see this young woman who is amazing (her parents came to Maine from China, her mother is an acupuncturist and her father an MD, as is her sister) People raved about her and they were right.
Where is everyone? It's so quiet here. Hopefully everyone is off on vacation, enjoying this incredible summer. Stay cool, Hipp. xoxo
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Hi ladies: Just to throw in my two cents on acupuncture: yes, it has worked for me. I've gone on and off over the years for migraines and plantar fascitis. Most recently for PMPS pain. It has helped me; specifically for the sharp, shooting pain that was from the elbow to the armpit. It has not helped with the bungee cord tightness; water aerobics and yoga have lessened that to a large degree. However, I would not allow the needles to be placed in the armpit area again because of the lymph nodes. I did develop a cyst under that arm probably related to the needle placement (it had to be drained and excised).
And yes, I was on vacation, Fog. And a funny thing occurred with my implants: we were at nearly 7,000 feet in elevation for a week, and I noticed that the implants squeaked and burped, just like they did after my exchange surgery. It was loud enough for my husband to hear them when I did my stretches. The bungee cord tightness was also exaggerated during that time. Very weird. Has anyone else experienced that, or anyone living at higher altitudes have "squeaky" implants?
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Deeds, that sounds so funny to hear that. I thought u were going to say they exploded!! That would not be funny. We have a sleep number bed in our motorhome. When we go up in elavation we have to let some air out so it doesn't get rock hard . The elavation apparenty expands the air in the matress. Who knew...I live in Florida where is flat.
Where did u go Deeds???
I have an appointment with my pain Dr at the end of the month. Ill ask him about acupuncture. I have gone several times and he has never mentioned acupuncture. He is from China so I would think if it was an option he would have said something about it. He did say the type of pain I have can not be relieved. So I take minimal pain meds and carry on!
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Hip: we were up in Northern New Mexico at my in-laws...and my sister verified that she has heard that same complaint from another blogger who traveled to a place of "altitude". Evidently we don't experience that in airplanes because the cabins are pressurized. The implant pressure resolved as soon as we climbed back down the mountain, but I'm wondering what would have happened if we'd driven up to 9,000 feet in elevation? Yikes! So these implants are more like your sleep number bed than we'd like to admit...
Ask about acupuncture: if your guy is from China he surely would give an honest answer. It's not the cure-all, and doesn't help everyone. This whole PMPS business seems to have a "custom fit" look about it: what works for you works for 20 others, but not the rest of us. Keep on trying until one thing makes a difference.
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Was that Santa Fe my faorite place??
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Nope, Hippy. It was Chama - which is 2 hours west of Santa Fe. I agree that Santa Fe is a "magical" place.
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Bump
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Deborah, Deeds and Hipp, I love you for keeping this thread bumped! And I love you for lots of other reasons, too!!!
I sent my article to my doctor friend who sent me the JAMA pdf - the very first person to recognize why I was in pain.. He is influential in public health issues and now he's carrying our banner. When God closes a door he opens a window. I know exciting things are just down the road a bit. Stay tuned...We've just been revving our engines a little.
Love you all. Fog
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Hey Foggy, glad to read we are not dead in the water yet. Have a beautiful Maine day. Hipp
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Fog........
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Hi Daisy, I have had this pain for almost 3 years. I don't think its getting worse. I am just getting use to being in pain 24/7. I have had every kind of PT there is. It did not help, it was just very painful. I think PT's just want to keep u coming back. I don't think its the scar tissue thats the issue, its the nerve endings. I am going to a pain doctor who flat out told me this kind of nerve pain cannot be cured. I was glad he said that because now I don't have to search any more for the answer, there is no answer. I have pain meds for the pain when it gets really bad. Some women get better with time, it just is not me.
I do not have implants or use falsies. Good thing I never did the implants because I would have ripped them out by now. Hang in there!! Barbara
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Daisy - I agree with Hipp. PT made my pain worse (definitely helped restore my range of motion though).Breaking down scar tissue is what they know how to do. Just like surgeons know how to operate so their solutions will involve surgery. If your pain appeared immediately following surgery you most likely have nerve trauma. That's what I have.... (vs a nerve trapped in scar tissue. that develops over time).
I haven't met anyone yet who really knows how to fix nerve trauma. Except for your own body and the passing of time. Dr. Edwards (Harvard pain specialist) told me they could try nerve blocks and medication. This doesn't fix the problem - just blocks the pain. My neurologist told me to stay off meds as long as possible because of side effects. So I tried water aerobics, acupuncture, exercise. Everything in moderation, testing my limits. I'm two years from my bilateral mx and I don't really have pain anymore. I used to feel like a bone was trying to rip through my chest ALL the time, even on pain medication. And that was just one symptom. Now all I have is muscle cramping and nerve zinging if I take off my bra.
So I also wear a bra 24/7. I only wear soft stretchy bras without cups. I'm a B as well. Macy's has a good selection. I found a bandeau bra there that I wear to sleep in...Just keep trying different bras till you find what's comfortable for you.
Daisy, I'm so sorry you're still in pain. There is hope. I started getting better at about 18 months out. I hope I continue to improve. Hipp, it just stinks and I'm sorry you're not getting better. You are amazing and strong. Love, Fog
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Ok so I went to the pain doc today. I asked about acupuncture. She said she knows an acupuncture Dr who was trained in China. My pain dr is also asian. This is an interresting tidbit u might want to know.. I have told her about our blog. I told her about ppl soliciting acupuncture on our blog. She said anyone can hang a shingle stating they are actupuncturists if they have only had 2 years of training in the USA. I would only want to go to someone who highly trained in China.
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Hipp - you are correct! It's important to find someone who is not only highly trained, but who you feel comfortable with. I get a huge dose of endorphins during my treatments. Almost feel drugged!
Everyone, we can climb out of this place, tiny step by tiny step. According to a follow up study (I think Deeds posted the link) half of PMPS sufferers were pain free after 7 years!!!! Every day stretch a little more, exercise a little more (I couldn't even make the arm movements for my free weight routine without terrible pain 8 months ago and now I do the entire routine with 3 pound weights every day) There is hope. Love you all. Fog
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