Post Mastectomy Pain Syndrome (PMPS)
Comments
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Binney: You are a peach! Thank you for posting this info!0
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Yes be careful of therapists. I have a small (size of quarter) raised area under my 1 armpit (same arm with numbness and tingling). PT said it was tendon. I said to myself-no too big for tendon. Saw PS today who said it could either be enlarged lymph node (since 9 were removed) or scar tissue. He will do biopsy when nips are being done in 3 weeks if it is still there (has been there for 2 months). I bet this thing is not helping the arm numbness and tingling.
In other words be careful of people who claim they know something and they don't!!
Janet
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Hipp - the drug the neurologist mentioned was Neurontin. I believe Estepp (Laura) tried that drug and recently went off it. You could ask about her experience.
Really good question: is there a cure? I still don't know the answer. Everything I've read says we should get help from a pain management specialist. But that sounds more like managing the symptoms, not fixing the problem. Is there anyone out there who had chronic pain and is actually better now? I know people have found ways of living with the pain like taking medications and wearing a bra 24/7 (personally, that makes me feel better but I still have the pain and tingling when I take it off).
I'm 18 months out from surgery now. I am still seeing very small improvements. I have faith that I will be pain free some day. I don't like the alternative. Warmly, Fog
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Binney- Thank you so much for taking the time and posting the links. They are very helpful as I was wondering what to expect. Good idea to take a guideline paper so we can discuss what to expect. I faxed over my script & insurance card this afternoon to the rehab dept. and they faxed me back a bunch of paperwork to fill out & bring. They also attached a copy of the business card of the therapist I am seeing which has the initials MOTR/L, CLT-LANA, VODDER CERTIFIED LYMPHATIC DRAINAGE THERAPY. I figured out the CLT is certified lymphatic therapist but the rest I am not sure about. Just wondering if anybody knew what it all meant. I go Monday morning at 8 a.m.
I know what you mean about being our own health care managers. If I hadn't read about lymphodema & PMPS on here I would still be wondering why I was in pain every day! I am so grateful to you!
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Fog, I have been taking neruontin for a few months now. The problem for me is i do not take enough right now to help. I take 300mgs and my dr said 1800 and over can be the norm. It makes me dizzy if I take more than 300 right now, but I have a script for 100mgs so she told me to gradually increase it. I don't really know if it will help with the pmps, but maybe it will work on the fibro.
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Neurontin can be used for nerve pain. But according to my neurologist it contains a salt compound so be careful of swelling. I am on Neurontin for the brachial plexopathy and when it gets bad I also take an old antidepressant called Pamelor. Together they work. Only thing now is that neurologist doesn't want to increase Neurontin due to more swelling possibly and wants me to increase Pamelor. But I hate the SE from Pamelor. So dr is going to try a mild diruetic to see if any swelling is causing the increase in arm numbness and tingling.
Janet
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Happy Friday Everyone. It's pizza, salad and red wine night. Yahoo! Especially since we're in an arctic freeze up here.
I've been poking around the internet and found an interesting article. I recommend reading it for perspective. http://www.crcfl.net/content/view/history-of-breast-cancer-advocacy.html
Deed's thread, all of your postings and my personal experience led me to write to the author about the third wave of breast cancer advocacy. Here's my letter (btw, I have never been a letter writer in my life but I guess things change!)
Hi Bob - I just read your article "A Very Brief History of the Breast Cancer Advocacy Movement".
I found your article enlightening and your last sentence especially caught my attention.<<The third wave of the breast cancer movement is just over the horizon. Let's watch for it.>>
I was researching Post Mastectomy Pain Syndrome (which I suffer from after a bi-lateral MX in July of 2008) when I read your article. I think part of the third wave of breast cancer advocacy will involve the education of patients and doctors to the long term side effects of breast surgery.
Though I communicated often with my surgeons at a top cancer center in Boston, complaining of all the typical symptoms of PMPS for 18 months, I only learned about PMPS through a friend who sent me the JAMA article showing 40% of women in Denmark reported chronic pain after breast surgery. I've since found many other studies that support this statistic. Anecdotal evidence from fellow breast cancer patients also supports a lack of recognition of this syndrome by their doctors.
What I don't understand and would like your perspective on is why doctors at leading treatment centers around the country don't seem to be aware of PMPS and what can be done to change this. I am determined that other women know about these side effects so they can seek treatment and make informed decisions. Thank you for any thought or advice you are willing to share.
Warm regards,
LisaHe wrote back. I'll share his note in a separate posting since this is already so long.
Your's - Fog
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Fog, thanks for sharing. Can't wait to read his response.
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kookiesmom, lymphedema therapists are specialists who have training beyond their original certification as occupational, physical or massage therapists. The MOTC/L I believe means this is an Occupational Therapist with a masters degree (rather than a physical therapist or therapeutic massage therapist) -- my lymphedema therapist is also an occupational therapist, which I appreciate because her training gives her the tools to help me adapt activities to prevent further problems.
CLT-LANA means s/he's been certified by an organization called the Lymphology Association of North America (LANA). It's a voluntary membership that requires a fee and a written test and has as a prerequisite that the therapist has taken at least 135 hours of specifically lymphedema training and has at least a year's experience treating it. So it's a very good thing. The LANA site is here:
VODDER is the name of one of the reliable lymphedema therapist training schools, so all good.
LYMPHATIC DRAINAGE THERAPY is definitely the treatment you'll want if it turns out that you have lymphedema. It's also called Complete Decongestive Therapy, or CDT (or in the UK and Canada, it's usually CDP for Complex Decongestive Physiotherapy.) Wouldn't want to make this too easy for us, would they?!
Just a note here about certification of lymphedema therapists. There is no state in the U.S. that has state-mandated laws about who can practice lymphedema therapy, so anyone with PT, OT, or MT certification can legally treat lymphedema, even with no training in it. Aaaaaaaugh!!! There are "schools" that offer short courses in lymphedema treatment (a weekend, for instance) and then "certify" their grads. So anyone with a weekend of lymphedema training can call themselves a "certified lymphedema therapist." That's a very sad state of affairs and makes finding good therapists very difficult. So LANA certification at least guarantees you that this therapist has been adequately trained to treat lymphedema. The other tricky thing to note is that LANA certification is voluntary, so many fully-trained and experienced lymphedema therapists are not LANA certified (mine is not, because she's so busy she's back-logged and doesn't want her name on the LANA site and end up with even more patients.)
All I can say is, getting every state to enact certification standards for lymphedema therapists would certainly make our lives easier.
Hope I haven't made this all more confusing.
Hugs all around,
Binney0 -
This Scotland study is worth reading. It depicts a follow-up of women originally assessed in 1996 in Scotland with symptoms of PMPS. Forward to 2002, and these women were again assessed at a mean average of 9.0 years after their symptoms originated. You need to read the entire article....it's not too long:
http://www.nature.com/bjc/journal/v92/n2/full/6602304a.html
Apparently being old and thin is a good thing.
EDITED: To correct dating issues
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Hi Ladies! I just found this thread! Thanks for speaking out! I had bilateral mastectomies, with a implant on my right. my left side had 22 nodes removed! Since I finished rads in sept I too have been plagued with muscle spasms in my chest that would wake me up at night. I started wearing a bra with prosthesis 24/7 and it helped. I am an RN whose BF is a PT. I talked to her about my pain and she suggested myofascial release. It is wonderful. I started in Nov, and now sleep thru the night and I am much more flexible than I was before Pt my flexion in my left arm is almost perfect, I gained 15 degrees!! I have taken no muscle relaxants or pain pills, I do my stretching and will continue Pt weekly. Ask your MD's about this. It helped me! good Luck, Dawn
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Whippetmom - that is a great article. Thank you for finding and posting the link. It's the only study I've seen that did a follow up years later. So we have a chance at being pain free after all! I'm thin AND old. Wait, does 51 qualify as old in the study?!
Dawn - thank you for sharing your experience. PT helped me regain full range of motion. It didn't help my nerve pain though. Did you have tingling, pins and needles etc. that improved as well as muscle spasms?
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fogandroses! No I just had a too tight bra feeling that would wake me up esp if I was on my side position change eased the spasm! It really wasn't a pain but a muscle spasm. My docs think it is from assymetry! I have one side reconstructed only and probably will have that implant removed in the spring so I will be symmetrical!!! The myofacial release is just a laying on of the hands that releases the fascia between the muscles that were damaged during surgery and rads. Very soothing and effective!!! Dawn
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I'm only three weeks out (bilateral with no reconstruction) and it scares me (and saddens me) to read that so many of you ladies are still experiencing what I'm going through now. I had hoped this pain was temporary - everything I mentioned to my BS, he said was due to nerve damage, from the burning sensation on the backs of my arms, the extremely, overly, too tight feeling in my chest, to the itching that I couldn't get to because it was under numb skin, etc...
sigh....
I'm anxoius to check out some of your links....
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Robinlbe, you are so early out from surgery....I'm sure you will get better. I believe the starting point for a PMPS diagnosis is at 3 months post op. If you are still in pain at that point, it's time to find out why. At least you will be well informed and know what to watch out for. Here's hoping that your healing is complete in the coming few months!
For myself, this thread has been a real help (I'm 8 months post BLMX with reconstruction). A few days ago, the aching, tightness and pins and needles I was experiencing were getting so pervasive and constant that I finally called my BS again. She will do an ultrasound on Monday afternoon. Let's hope she can give me some information. After reading advice about LE, I had started watching what I ate (low sodium, low fat, low calorie) and then unexpectedly started my period. A few days later, I suddenly felt a lot better. I think I had been retaining water which had added to and increased the swelling and ongoing mysterious pins and needles I have been experiencing for the last 6 months. I've been keeping a log of my pain and the different issues that seem to affect it. So far, upper body exertion, surgery (nipple reconstruction) and now fluid retention/hormones seem to be involved. I don't know if I'll end up with a diagnosis of LE, but I'm beginning to think things are trending in that direction.
Whippetmom, I read the PMPS article and fall into the "need to lose weight" group, but am I young or old at 50?!? I so want 50 to be the new 30...
! Edited: Or maybe the Neurontin is kicking in?
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Boy howdy do I agree! But I want 60 to be the new 40!!!
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Ya,60 new 40 lol!!
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You just reminded me of something my husband said to our dog, a senior yellow lab, last summer. "Hey, 12 is the new 8." I still laugh when I think about it.
Thanks to all I've learned about PMPS and of course being in pain for the last 18 months -I'm trying to get the word out that we need to make progress on improving quality of life during and after treatment for BC. Here is the reply I got from Bob who wrote the article about Waves of Breast Cancer Advocacy (I posted the link above).
Hi Lisa -
Thanks for writing - I'm happy you liked the article.
Your comments on PMPS are quite interesting. It reminds me of the controversy around chemobrain which was largely dismissed by the medical community until recently. The same was true for lymphedema. I think physicians used to think of two possible end-points - the patient lived or the patient died. The potential after-effects of treatment weren't often considered. I think this is beginning to change and there has been increasing awareness of survivorship issues, but there's still a long way to go.
Thinking of this as the "third wave" of breast cancer treatment makes a lot of sense. I never thought about it until you wrote.
Thank you!
Bob
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Angel - how are you feeling today? You're still in my prayers. Hugs to you.
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Fog, Thank you for your prayers and thinking about me. I took muscle relaxant for a week and it did not help. Today I don't want to get up because of leg pain and arms too and just the chronic fatigue. But I need to be up for my kids. I want to cry because I want to do a lot of things like laundry and paying bills but I think I will go back to bed.
My coworker said to see again a rheumatologist and see if this is a start of fibro. I'm so afraid to go to doctors appt. and to hear another issue besides BC. This cold weather is making my pain all worse.
Thanks again
Edith
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Hi Ladies-
Regarding educating doctors avout PMPS. We should work to do it. But what is just as important for future generations of women is teching docotors hoe to actually perform a masectomy WITHOUT damaging the INTERCOSTOBRACHIAL Nerve in the first place.
Are they learning this and really really making it a priorority? This would save so much pain.
Jessica
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Jessica,
EXCELLENT EXCELLENT EXCELLENT point. Do you have any ideas on how to make this happen?
I just emailed both my surgeons and asked if, generally speaking, the intercostobrachial nerve was identified and protected during surgury and asked if they had any theories on how mine was damaged since I didn't have any lymph nodes removed. I'm sure when they see my name in their email inbox they groan.
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Binney - Thanks for deciphering the initials on the lymph. therapist's card! I don't know how you know you all this stuff but I am sure glad that you do and that I have "met" you here! I will let you know how I make out after my appt. on Monday. I am anticipating that I will probably just be evaluated but am hoping to get some relief soon.
Fogandroses- I read you letter to "Bob" and also his response. I hope that it will start the ball rolling as to opening the medical profession's eyes and hearts to PMPS. Its not just in our heads! Bob sure gets right to the point doesn't he when he said "physicians used to think of two possible end-points - the patient lived or the patient died"? How horrible to hear but I think he is correct in some cases. Let us know what your surgeons have to say about the nerve. I am still wondering if they can actually see a nerve or if they just know the area that a nerve is in. I will have to google it. LOL about them groaning when they see your name - too bad for them - they picked the wrong owner of a intercostobrachial nerve to mess with!!!
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Kookiesmom - I found that part of Bob's response hard to read. It's shocking but probably true in some cases. I suppose it's educational because we may be up against that attitude - though I'm sure it's changing.
I already heard back from my PS (still waiting to hear from my BS). He said the nerve is identified and preserved but isn't always "happy". Sounds like they are trying? I'd be interested in what other surgeons say... if anyone else gets information on preserving the intercostobrachial nerve please post. Thanks!
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I read the surgical notes on my surgery and it stated that the nerve was identified and preserved! NOT! I am in pain and have been since about 2 months after surgery. My BS said it would probably go away in a year or two! It has been three years!
I am praying the PS will help when I have my surgery next Tues. He identified a neurmona in the underarm area. He thinks he can unbundle the nerves and stop the pain. I will post when I know the outcome.
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An older article....an axillary hematoma possibly being culprit for PMPS....looking for more current data:
http://www.painjournalonline.com/article/S0304-3959(03)00492-5/abstract
For those who have yet to undergo mastectomy....worth mentioning to your breast surgeon:
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fogandroses-
Not sure how to work toward seeing that docs learn how to NOT damage the nerve and not merely make an "attempt" at it. That is just not acceptable. WAY to casual. Quality of life...why is that so hard to grasp....I am thinking about it though. It has to be part of thier conferences and initial training really. An open letter in the New York Times is how they would get a message out if they wanted to..but that is fleeting..
Unbundling the nerves, that's interesting. I wonder if a sonogram or something can see damage to a nerve. If they could more accurately identify the root of the problem before reconstruction revisions that would be key...Again, i would lead to educated decisions which is all we are asking to be able to do...
By the way, I called Washington University to inquire about treatment of PMPS. The site has a entire page on it. A woman claiming to be a nurse called me back and did not seem to know a thing about it and kept insisting I was thinking of something else..She was patronizing.
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Jessica - I am really disappointed to hear about your experience with the clinic in DC. I actually thought about taking a flight down after I read Whippetmom's link. I thought finally someone was offering a comprehensive evaluation and treatment plan. I'm so sorry you had to deal with a patronizing nurse on top of everything else.
Bettye - I'll be thinking about you on Tuesday. Please do let us know if your surgery helps. Since your pain started 2 months after surgery I bet you will find relief. It sounds like something happened over time as your body was healing. Scar tissue? I'm not sure exactly what a neuroma is and how it forms.
My pain was there from the moment I opened my eyes in recovery which makes me think my neurologist is right and my nerve was injured during surgery.So more surgery wouldn't help, if that makes sense.
Angel - my heart breaks thinking of you needing to go back to bed when all you want to do is get up and have a normal day. I did a little research on Fibromyalgia and found this article. I was wondering if your symptoms were triggered by surgery. This guy thinks FM is caused by trauma to the spinal chord caused by positioning during surgery.
http://www.naturalnews.com/008247.html
Hugs to everyone. Fog
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Fog thank you for your research.
Yesterday I was so afraid because my right leg was cramping/tight, and painful and I was just thinking how will I drive my kids to school and go to work. But today I was all good except kneeling at church was quite painful.
Thanks
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Hi ladies-
Here's great link on the inercostobrachial nerve and damage during masectomy.
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