Post Mastectomy Pain Syndrome (PMPS)
Comments
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Souad - thank you for doing that detective work!!! I am doing some of my own through Brigham and Women's pain management ctr (I have a new contact there) and will ask him if he knows anything about the block. Let's keep each other posted.
Bettye - so the spinal block eliminated post-op pain but didn't prevent PMPS for you...It seems like there are two types of PMPS. I woke up from surgery with it but a lot of women (including Deeds who started this thread) developed it months later. I wonder if the delayed onset of PMPS is due to scar tissue forming around nerves? and immediate is trauma during surgery???
((((((Shoshi))))))) If there were a guarantee that removing the implants would stop the pain I would be in the OR tomorrow. But if they can't tell us why we're in pain how can they fix it? Somehow Bettye's surgeon figured it out and fixed it. I'm so sorry you're going through this. Sending you a hug. Stay with us here. I'm hoping to report back with info from this new Dr. today or tomorrow.
Hipp - I had migraines for 12 years and went from doctor to doctor. Always getting new medication but never addressing the cause of the headaches. When doctors don't have the tools to really diagnose and fix a problem they throw drugs at it.
I'm off now to water aerobics..Brrrrr...not looking forward to getting in the pool this morning. Then acupuncture this afternoon. With love to all, Fog
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Yes, my pain came three months after surgery. And the PS told me what I had was a neuroma with bundled nerves and he fixed it!
To the person given elivil: If you are on AI or TAMOXIFEN check this drug out. I was given it also and did not take it because it worked against the TAMOXIFEN.
Bettye
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elivel did help the most of anything pill wise....It acts on nerve endings and did make it easier to sleep .
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Hi to Everyone,
I wish the best to everyone. I have gone through alot that many of you have. I had PT twice, which they worked on my lymphedema and worked on myofacial release. It hurts to have PT. It always hurt twice as bad, when you came home from a session. The first time I had PT, it was right after my radiation. So, she did help me get my strength back. Both therapists were trained to work with PMPS patients. You have to believe they are doing some good. Also, my husband made me go. He is very supportive and is a sweetheart. I also tried lidocaine patches, but it hurt too much to have the patch against my skin, because, like many of you, it hurts to have anything on your chest area. I hope they work for you though Hipchick. Everybody is different.
I was the gal that recently was suppose to have a nerve block on my intercostalbrachial nerve. but the anesthesiologist decided I should have trigger point injections instead. They were going to do the nerve block and if it had worked, then they knew it was the intercostalbrachial nerves that are giving me all my troubles and maybe they could pursue with surgery. The anesthesiologist said she thought I shouldn't go through anymore surgery, because if it didn't go right I could have more pain and more scar tissue to deal with. I wanted the nerve block though, but I didn't argue with the doc. (Maybe in the future I will be able to talk her into it. I think it would work, just like BettyE's surgery worked. I'm not giving up!) I gave the trigger point injections a try, but it didn't help much. They give you 7 or 8 shots that have numbing medicine and steroids in them. The shots were given around my scar (on my chest area and under my arm). Has anybody else had them? Did it work for you?
So for today, I feel blessed to be here with my wonderful family. I have a sweet husband who always stands by me, even when I am a coyote howling with my pain. Really, I try not to complain too much, but he is the one that will always listen. I have 2 children, ages 19 and 21.
And now I have you wonderful ladies to relate with. I am sorry you all have had to go through so much. Much Love to you all.
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Ladies, Are you as frustrated as me that the docs seem to NOT KNOW really how to treat this chronic pain? I, too have been to multiple pain specialists, PTs and struggle with my GP warning me EVERY month that I might be taking too much vicodin (no more than 2/day unless pain is severe like last night). Why don't they know more? Why is there no warning? If the stats are right, anywhere between 20-65% of women undergoing breast cancer related surgery suffer chronic pain!
We deserve to NOT be in pain. We deserve to NOT be called drug addicts. The vicodin work for me. I've been perscribed so m any diff drugs and tried nerve blocks, dreaded trigger point injections and would be willing even to endure another surgery if it could help! But so far, just the vicodin helps. Of course, the pain and the drugs side effects affect me negatively in my daily life. I'm only 39. My pain specialist told me I would probably have this pain for the rest of my life!! Is there NOTHING that can be done?
So frustrated and depressed this week about my GD pain!
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HOW? How did he fix it?
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You are exactly right girlmace. We need to stick together and fix it. Spread the word, maybe write to our congressmen, write to our city, hospitals, to the National Breast Cancer Society, etc. and ask why the women of America are not treated better, why there are not more studies out there being done, why it has taken so long. We should be able to receive the adequate treatment and medication so that our quality of life can somehow be better. We deserve better. There needs to be way more recognition of this chronic pain condition. Doctor's need to warn their patient's about PMPS instead of their patient's asking them what the pain is all about!
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Girlmace - We should have been warned about the risk of PMPS and we shouldn't be made to feel like the pain is somehow our fault. And it would be nice if the doctors admitted they don't know how to make it better. And they didn't sometimes imply we are drug seekers when we need pain medication. And And And...
This must be the day for frustration. I thought I was making some progress at the hospital where I had my surgery. It took a couple of weeks but I finally had a conversation with the woman in charge of patient education. I guess I'm naive but I was hoping she would say something like, "I've looked into this and thank you for bringing it to our attention. Somehow we missed the last 10 years of research. I'll add a couple lines to the pre-op education packet. I'll be sure to tell women if they have pain after three months to contact their doctor. And I'll make sure all our doctors get the handout on PMPS." I was dreaming...
I'm not giving up. We're going to turn this ship. Maybe we need a bill of rights?
1. the right to know the risks before surgery so we can make an informed decision (the woman I talked to said that pre-op "women are overwhelmed" so they don't like to talk about specific types of pain. What? Is it the same for men having prostate surgery or hernia repair?
2. the right to post op care that recognizes that chronic pain will effect around 50% of us. (that means we can't sleep, we can't exercise, it's hard to advocate for ourselves)
3.the right to the latest treatment for this pain. If there isn't any real treatment, tell us.
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Yes, today is a frustration day. My pain has been very bad. I try to have hope, and am going to have the hope. I feel bad there are women in different parts of this world suffering from this. I hear stories of women turning over a new leaf, living a new life, because they have cancer. It is so hard when you are living in such pain, but we need to be the women that help others. It may take all the strength that we have, but if we all can do something, even if it is something little, like making a phone call to someone, then maybe we can make a difference, just like fogandroses. Keep up the good work!
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Hi fogandroses,
Guess what I just did! I wrote a note to Dr. Oz, also! The more the better
. Lots of Luv to you all!
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TuffyBuffy - YAY!!!!!!!!!!! Thank you for writing Dr Oz!!!!!!!! We can make a difference together.
Love, Fog
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hi everyone.....thank u for ur support..has anyone here ever considered having your implants removed? This would be my last resort..just curious...
i think if we all continue here & maybe if there is a way to write to even OPRAH!!! We need to get the word out abt this. I know drs think we shouldnt have to much pain meds b/c of adddiction ..but let them live with this pain!!!!
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I have tears. I have felt so alone with my pain, I forgot how supportive this discussion board is. It was a life saver when I was first diagnosed and longer. Thanks for being here for me and I'm sorry that you all know what I'm talking about (another club we don't want to belong to). Getting the word out there is a great idea. Sign me up.
My worst pain is not in my implant area. It's actually on my right side where my lat dorsi muscle used to be. I have a large nerve bundle (my theory, no one really seems to know) that lives there and causes me most of my vicodin pain. What is it? Why do I have it? Can I get rid of it? Why does no one know?
I sometimes have shotting pains in my armpits and around my chest up to my pectorals. I can't do push-ups or pull ups. I tried and my whole body swelled up and I was laid up for two days. WTH?
Again, so nice to finally "talk" to people who truly understand how I feel. Sometimes the lonliness is the hardest part.
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girlmace-I feel your pain, literally. I was at the park with my grandaughter and she asked me to hang from the monkey bars. I'm a young Grandma of 50
I use to be able to pull myself up 3 times. Now I can't even hang from the bar. The pain is intolerable. Had I known the doctors would be so complacent concerning my pain I would not have had my mx. Now I'm stuck. 0 -
It is so nice to know that I am not alone with this problem. My PS said my arm pain was my shoulders, my age(47), etc. I still am not sure, as I am on Arimidex and Zometa also, but I remember the pain right after my BMX, thinking they wrenched my arms during surgery, but the pain was minimal, eventually getting worse.
I wanted to let everyone know about this book I checked out from the library: it is called "The Breast Cancer Survivor's Fitness Plan" by Carolyn M. Kaelin, MD. In it, they talk about the why's of the pains we are feeling, and suggest the things we can do about them. They have gentle exercises for every type of surgery and reconstruction, including the frozen shoulder that they say is common after surgery. They talk a lot about lymphedema and careful things to do about that. I like it so much I am going to buy it. Wish I'd known about it after my surgery, as I am a fitness freak and may have overdone myself too soon, hurting myself further.
Hope this helps, and thanks again,
Deen
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Thanks, Deen. I'm going to order that book. I've been doing water aerobics which is amazingly helpful but I need to get back to my free weights. I've been afraid to try! Happy Friday night everyone.
Love, Fog
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Thanks, Deen. I'm going to order that book. I've been doing water aerobics which is amazingly helpful but I need to get back to my free weights. I've been afraid to try! Happy Friday night everyone.
Love, Fog
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Hey Fog, I just read Downeast magazine and thought of u. Luv Hip
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Hipp - Life the Way it Should Be!!! (at least during July and August) I love DownEast Magazine. One of my dearest friends from high school days writes for them. Check out all the deals on real estate up here. Maybe time for you to buy a little cottage on the ocean?
Yesterday I had a telephone talk with a pain specialist from Harvard who is doing some studies at Brigham and Women's. He's trying to figure out why some women get it and others don't. I wanted to find out the latest research on PMPS. He spent 45 minutes on the phone - really nice, down to earth and helpful. So...he said I know more than most doctors about PMPS now. Seriously.I told him I was trying to change that and not having much luck.
I asked how we could get the word out to doctors and patients. Well, long story short we are probably going to co-author a paper on PMPS and try to publish it. He liked the idea of a paper that combines the personal experience of PMPS with a clinical perspective.
Really, I hope this helps. There has to be another more global way to get this on the map. Still waiting to hear from Dr. Oz and Oprah.
Love, Fog
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Deeds - how are you doing???? You are the mother of this thread!!!! Hope you're feeling better every day. Love, Fog
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Thanks for asking, Fog. Actually, I'm still free from pain in the armpit and shoulder after 2 acupuncture treatments. The bunjie cord feeling is still there, but I'm doing what my PS suggested and "pushing through" the discomfort to do more intentional stretching than before.
One side effect from the acupuncture, though: the needles placed in that armpit area brought in some of the standard bacteria that exist on our skin, and it got quite inflamed. It was lanced and drained twice (by a dermo) and 2 weeks of antibiotics. It's called an epithelioid cyst and will have to be removed by my PS because it's rather close to my implant. So...for those of you considering acupuncture, I'm not sure I'd allow the needles so close to my lymph nodes again.
I'm just in awe of what you've been able to accomplish though, Fog - you're making history! And nearly everyone on this thread seems to have pain and complications far, far worse than my own. I feel unqualified to respond to some of you who suffer so tremendously, but marvel at how aggressive some have become in their pursuit of options and relief. Brave gals...
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Deeds I bow to you our fearless leader. Hehe!! Good info about the acupuncture.
Fog, I lived in Maine in the summer for 15 years when my kids were small. in Wells. Where r u? All my sweatshirts say Maine on them lol, and everywhere I go ppl ask me if Im from Maine, cuz they are!!!! Im impressed with that phonecall, Fog. I wanna be interviewed. I do know more then that Doctor, actually most doctors lol I know, Iknow, Wells is not "the real Maine".
I wore the lidocaine patch for about..2 hours and ripped that baby off so fast. Hello, I am a redhead who had surgery on that chest and its way too sensitive for a stick on patch with an inch of adhesive. The elivil is a waste too. It just makes me a little dizzy, and does nothing for the pain. I do not see a pill taking this kind of pain away,heck, percocet barely makes a dent. Hipp
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Deeds - Thanks for the warning. No needles near armpits...Who knew? I guess the trade off was worth the problems though. Have you tried swimming for your tightness? With each visit to the pool I can move more freely. I am NOT a swimmer. In fact, you could say I am challenged in that area. I was the kid left behind in swim class. While everyone else flutter kicked their way to the deep end, I was still in the shallow end, kicking madly, going nowhere. My water aerobics class is perfect because it's geared toward senior citizens. I also love hanging out with these ladies who are up and in the pool at 8:00 am.
Hipp - we're near Portland. I grew up further north and you're right - even Portland is not the real Maine. I guess everything is relative! I've traveled a lot but still have family members who are terrified of driving down to Boston. But really who can blame them.
My only sibling, my sister, is a redhead with fair, sensitive skin. She also has some of the personality you have! The year before my diagnosis she was diagnosed with stage 3 melanoma and had 3 levels of lymph nodes removed on her right side. Her determination to get her strength back, her battle with lymphedema plus a mrsa infection - all inspire me. She will be three years out this spring. I am holding my breath but she is living full speed ahead.
Going through her diagnosis and treatment (I was the one doing massive amounts of research and going back to her with one or two lines) did two things for me. First, I was strangely prepared for my diagnosis (esp. PMPS) and second it gave me perspective on the "stage wars" that I sometimes see on this bulletin board. It's so interesting and human nature I suppose...to think that where we are in our journey is impossible for others to understand. I can't help but think of my sister. If she goes to stage 4 she will have a very short time and no chemo, no radiation, no treatment other than trials.
Sorry, I am rambling now.
Have a restful Sunday everyone. Oh! I have an idea of how to organize what I want to write about PMPS. I think I'll start with the Bill of Rights I ranted out a couple days ago and under each "right" I will document what actually happened. I'll pass it by you all as it goes! Love, Fog
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Thanks for the tip on swimming, Fog. Great advice! What your sister has dealt with is sobering; I see some of that same trait - persevering through adversity - in you. Tough cookies, you are!
Those of us on this forum await your "publication", and know that our own stories will be interwoven with your facts. This will be a labor of love!
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You women are all so impressively strong, I can't believe it! Much to admire here.
For the fitness "freaks" out there, it took me 1.5 years post mx to get back to lifting weights. It feels good; but I just cannot lift more than the 3 lb weights or it causes too much pain in my joints. Took Arimidex for 11 doses only. I used to do same exercises with 10 lb weights. I'm so worried about the lymphedema issue that I'm thinking about cutting back to 2 lb weights...
Life goes on.
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Lava -Thanks for the weight advice. I have five, three and one pound weights. I used to do a great 20 minute workout every day. Upper body one day, then lower body the next. Maybe I'll try a modified version (less reps) with one pound weights. Maybe...but first it's off to water aerobics! Can you tell I'm gun shy?
This morning I got an email from Dr. Wascher answering two questions. First, like everyone else has said, there is NO centralized way to communicate with the medical world. Second, there is no definitive way to prevent PMPS other than to use caution with patient tissues during surgery.
So we have a long way to go till women are advised of the risk pre-op. Prevention and good treatment options..seem like the impossible dream but you never know what the universe has in store! Plus, we women are very good at communicating. We will find a way. With love, Fog
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Fog, you are an amazingly strong woman. I admire your tenacity. Regarding the hand weights, I understand being gun shy. I started the exercise movements with NO weights. Can't get much more "chicken" than that!
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Hi everyone
What you girls are describing about this pain syndrome is exactly what my husband is going through after by-pass heart surgery. He woke up after surgery with 'the pain'.Ok we said there are drainage tubes-early days yet etc-2mths later the pain is still there .Its searing and comes on for no reason. The Dr say there is a possibility that a nerve was cut,that it may last 6mths . He is taking pain relievers and Lyrica-there is no real improvment.The next step is a nerve block.So there has to be a connection with the internal mammary vessels and nerves being disrupted in both this op and the mastectomy.
I hope that there is relief out there somewhere for you all
Anna
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Has anyone else who has the unrelenting, bungi-cord tightness associated with a mastectomy had any relief by removing their implants? I've talked with 2 BS, 3 PS, and one pain doctor - and got differing answers. The most recent, devastating news from a pain doctor is that nothing will help, and I'll just have to learn to live with it. I had a BMX about a year ago with reconstruction using form stable (gummi bear) implants. I deeply regret going this route - turns about that I only had a VERY small tubular carcinoma (a very benign form of BC). Had the BS, or my oncologist told me that this was a possibility - I would never have had a BMX. No one bothered to read the pathology report from the biopsy - if they had, and told me about tubular carcinoma - I also would have elected to have a lumpectomy. Radiation isn't indicated with this type of breast cancer. As you can probably tell, I'm still fairly angry with my level (or lack) of care. Anyway - if there's even a chance that removing them will help with this tightness - I'll do it.
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After being off Neurontin for 3 weeks, I went back on because I could not tolerate the intense pain. Yet I have called this drug evil because of the side effects. Cannot read because of the blurry vision, insomnia and hair thinning. Ugh! After 4 days back on neurontin, the hair loss is back.
Saw my oncologist and he has referred me to a palliative care clinic for pain mgmt. I knew about this place but did not want to go because most patients are terminal. Yet he said he has referred two other women who recently had mastecomy and now have PMPS. Yet noone mentioned this before my BMX.
Nballant-I have felt I made a mistake by not having any reconstruction. Was told that implants could cause me muscle pain problems because of my fibromyalgia/costocondritis. Yet here I am, 5 months later and in constant nerve pain and with no breasts! So, not sure if you would get rid of pain by removing implants. So sorry to hear about your situation. What is with the oncologists/surgeons not communicating with patients?
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