Post Mastectomy Pain Syndrome (PMPS)
Comments
-
Michele, it probably is a little lymphedema. I'm pretty thin (113 pounds) and the doctors usually just assume I'm healthy. None of them seems to even know what trunk lymphedema is so when I present them with that possibility they measure my arm. I'm going to ask my case manager about getting a referral to a lymphedema speialist. She works for the insurance company but has been a good advocate re: pain management. I'm pretty frustrated as you can see from this post! Will check out the LE forum.
Thanks!
Lynda
0 -
Dragonfly also check out this link: http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm you can print this information out and give to your doctors to help them understand where you are coming from. There is also a link to help you find a qualified therapist: http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
I totally understand your frustration...
0 -
I did not have the fat grafting for that purpose but did have some auxillary web syndrome pain. I really worked with massage and stretching that helped.
I had the fat transfers a week ago and they look so good, she also filled in the tight spot between the implant and where he took out the lymph nodes where there was a huge dent. Now it looks like the other side.
Good luck
0 -
Thank you for posting this thread and for all of those who have shared. I feel badly for all of you! I'll be having a BMX next month and am nervous about PMPS. The information shared on here gives me some hope. Best wishes to you all.
0 -
Hi alliesmom~
I'm curious why your surgeon removed your 21 lymph nodes if none were positive?
Thanks!
0 -
PinkHeart I am not sure, I know him on a personal level so maybe he was being cautious? I guess he wanted to make sure they were all clear
0 -
Wow, that is unheard of since I have been on bc boards for a year now that someone with DCIS has that many lymph nodes checked. My bs during my mastectomy, sent the first few to the lab to be checked before she sewed me up. Since none lighted up for cancer, there was no need to take anymore out. I seriously wonder about your surgeon, regardless of whethere you knew him on a personal level. It is just my opinion, but he put you at greater risk for lymphedema by doing that, rather than test a few and stop. Being DCIS, it was not invasive, so I personally don't see the need for that many, even if your DCIS was more aggressive.
0 -
I did have some micro invasion and was HER +++ Since I have not had any issues with Lymphedema I guess I am ok with him doing it
0 -
I just saw my PS on Wed. and he is now recommending fat grafting. He said it could (could) help with the pain I've been experiencing for over 2 yrs now. I had my implants removed thinking this would eliminate this discomfort but I only feel worse. Most recently, I've had a nerve block which did not help and on Jan 5th, I had injections of Botox in the pec muscles. So far, no relief but I've read that it can take a few weeks. I have to remain hopeful! I am definitely not doing the fat grafting. The thought of more surgery, more scar tissue, etc scares me to death!
0 -
Mlp- I found that a lidcaine IV infusion works better and longer than the nerve block shot in my neck for my PMPS.It takes them about 30 minutes to run the lidocaine thru the IV. I am loopy for the rest of the day, and partially into the next one or two days but much much less then the day I got it.
0 -
mlp730 I just had the fat grafting and my cancer side is less tight feeling and I have less tendon tightness issues. Not much down time just more sore where I had the fat taken out of. I am so glad I did it. I have no new scars either.
I hope you get some relief
0 -
I guess my biggest concern is that my PS said it probably won't help with the tightness but possibly with the burning feeling that I get on my right side. I honestly don't know what I'd do if this gets worse! I am seeing a female breast surgeon for another opinion on the 23rd. Hoping for some direction. I've had to be very proactive with everything I've tried and if it wasn't for my primary care doc, I don't know where I'd be! My BS is an insensitive idiot who told me at my last visit that I can look at the bright side of all of this - no more mammograms! Needless to say, I've divorced him!! I see the pain clinic doc on Feb 6th so I will mention the lidocaine infusion. Thanks for the info! Mary Lou
0 -
I have read that fat grafting can help. I recently saw an internal medicine doctor who is also practices integrative medicine. She told me of something called protocel therapy, or something that sounds like that. She said this is what Kobe bryant from the lakers had done to repair his leg.
0 -
hi, I met with a doctor that recommended fat grafting, too. He wants to do it around the implant, and loosen my scar. Doesn't sound like a big deal to me, but I'm coming from the position that it's been over 2 years since I had any surgery, and I'd try this instead of a DIEP (which sounded really depressing to me, as far as being laid up again). Then I read online a paper about fat grafting helping PMPS. Maybe it's worth a try.
0 -
Do you know where you read this about fat grafting helping PMPS? I would be interested in reading more about it. I definitely want to research more this time around. Are you still having pain and this is why this was recommended?
0 -
I was worried about pmps due to RSD dx. I know that I'm at high risk for any type of nerve pain disorder so the idea of reconstruction and even a mastectomy concerned me. I wanted to do the fat graftng hoping it would be the easiest and less painful type of reconstruction, but no one in my area does a full fg...at least no one that I know of. I then heard of a plastic surgeon who uses botox on the pec muscles making the implant, TE's less painful. He also prescribes muscles relaxants and pain meds. While in the hospital for almost 3 days, I was on constant IV for pain meds and of course antibiotics.
Even with all that and two weeks of living on strong pain meds, I felt nerve pain. I am sure it would had been a lot worse if I didn't have the plastic surgeon I had. Right now, I'm weaning myself off all pain meds. Last night was the first night I didn't need pain meds.
I will have a second surgery for the implants. I am sure if I need pain meds, the ps will make sure I have what I need. And finally, the last surgery is fat grafting over the small implant. This is suppose to give me a natural look and normal breast feeling. I'm so glad to have found a surgeon who is very aware of RSD and PMPS. He also sends all his mastectomy patients to a physical therapist.
0 -
Starting to have some hope again with regard to my post mastectomy pain.
Went to a new physical therapist today who works within a burn/trauma center. I went to 50 physical therapy sessions at another center after my big surgery last July and I came a long way there but still not pain free or full range of motion.
This new PT focused a lot on nerve pain and nerve mobilization exercises for my arm, shoulder, axillary, and pec muscle pain, but will also address lymphedema and my axillary cording issue.
I'm also starting a Mindfulness Based Stress Reduction program that is specifically for pain patients in the Complementary Medicine department. It is facilitated by an MD who had to give up her practice because of illness. It meets weekly for 8 weeks for 2 1/2 hours and has a full day session on one weekend. I wish my insurance paid for this like it did for my psychologist who incorporated a little of mindfulness training into my couch session.
Meanwhile, I still take oxycodone daily although no longer take the Valium. Someday, I hope I can get relief from this pain, so I can try to take the tamoxifen again (which had added debilitating SE pain to the PMPS pain). Otherwise, I will just forego the tamoxifen for quality of life.
0 -
mlp730: The data you request is posted on Page 27 - one page back on this thread - half way down the page.
kriserts: Would you mind PM'ing me the name of your doctor? I would like to add him to my referral list. I am very encouraged that he is doing this in his practice.
Deborah
0 -
Here is the link to the article I found:
http://www.ncbi.nlm.nih.gov/pubmed/21788826
I want to make clear: I found this article after talking to my doc, and I ASSUME, but am not definite, that this is why he's recommending we try this. He's a DIEP doc, but I have a clotting disorder, so I think he wants to be conservative.
We did not specifically talk about PMPS, but I think that's the undertext, it's been a few years out from my implant reconstruction and I'm still complaining.
MLP, I still have the pain but it seems to be regressing. It used to be all over my chest and arm. Now I think it has a lot to do with the tight pec, but also the radiation. The PS thought he could loosen my scar, which runs into my arm pit. That and FG to even out the top of the implant, he thought all that would help with the pain.
I used to take vicodaine every day, now I just take it occasionally, and I stretch my arms above my head a lot. Join my hands at the top and bend right and left from the hips. Stretches the skin along my rib cage, which may be helping. or maybe the timing's just co-incidental.
0 -
Here is the link for clicking...[hint: when you want to insert a highlighted link, go to the end of the link and hit your "enter" key and it will highlight...
0 -
Thanks for the link! Very interesting article. My discomfort is mostly with the extreme tightness. It's like a theraband wrapped tight around my chest all the time. I have not been able to wear a bra since my mastectomy in Oct 09. It is unbearable!! Mentally, it has beat me up pretty good - not only do I have the discomfort, but I have a caved in chest and can't wear prostetics. When I made the decision to have the implants removed, I really didn't think this would bother me because I thought the pain and discomfort would be gone and that was what was most important. Now I still have the pain and dressing is a big challenge. I can only wear camis under my clothes. My concern with the fat grafting is what my PS said - it probably won't help the tightness.
I now take Lyrica as well as Cymbalta. I think the Cymbalta has helped me mentally cope a bit better. As for the Lyrica, I've seen no difference in how I feel and I've been on it since early November. I take tramadol for pain which does nothing - unfortunately, percocet is the only thing that takes the edge off.
0 -
have you seen this thread? Possibly an idea?
http://community.breastcancer.org/forum/64/topic/779993?page=1#idx_25
(Whippetmom, I hit the enter key and it still didn't link.)
0 -
http://www.nature.com/bjc/journal/v92/n2/full/6602304a.html
Just to give you all a little hope. This study showed that half of women with chronic neuropathic pain post-mastectomy had it disappear with time/treatment. So pain now does not necessarily mean you will have pain forever.
It also describes 3 distinct categories of chronic post-mastectomy nerve pain, which I think may be helpful to read if you are trying to figure out how to talk to doctors about it.
If your doctors are telling you you are nuts, I think you should offer to fire them. A doctor shouldn't treat a patient he doesn't trust. Honestly, it's embarrassing to have them for colleagues. Please keep looking for an MD who understands nerve pain and accepts your description of symptoms as real. You will find one. Ask your oncologist, your primary doc, your gynecologist who their patients have liked. Surgeons are not often knowledgeable about long-term problems.
My PS is going to a conference this spring to learn about a new surgical technique for treating lymphedema. Will post about it here if it sounds worth pursuing.
I hope those of you reading who had surgery in the past few months are paying attention to how much physical therapy has helped those who posted here. If your PS hasn't at least shown you exercises, you should yell at him and then ask for a PT referrral. You are helping scar tissue to form if you are not stretching.
How fat grafting works: I think it probably helps break up adhesions/fibrosis/scar tissue and keep it broken up. It may also give lymphedema relief by creating a space for fluid to accumulate without causing trouble. I was told, with mastectomy, even without much axillary node removal, you are removing lymphatics along with all that fat, and so your risk of LE is increased. It makes sense that if you put some fat back into that space, even if no lymphatics are added, the fluid can spread out there instead of someplace where it causes pain.
0 -
This article does give some hope. My favorite line is the conclusion -
All women undergoing breast cancer surgery should be fully informed of the possibility of developing chronic neuropathic pain syndromes.
As I've mentioned before, I've been so disappointed in the lack of post cancer care. Neither my BS or PS recommended PT to me. It was through my primary doc that I obtained a referral and in the past 2 yrs, have gone to 3 different physical therapists, one being a lymphedema therapist. I totally agree that surgeons don't get the pain thing. After being reminded by my surgeons how I fall in such a small percentage - the first in 35 yrs for my breast surgeon, I've divorced both and have moved on to a pain clinic. It was doing nothing for me mentally to here their stats. My pain dr. is trying different things and talks with hope. I do upper body stretches (combo of everything from all my PT sessions). It does feel good to do this and totally agree it's a must.
0 -
Has anyone here tried natural or holistic medicine for pain relief? I don't know much about it, but I'm currently on 1200MG of GABAPENTIN with it increasing weekly and I spend most of the day with tremors and dizzy spells....with very little pain relief. I've tried many meds with no results and it seems like I'm starting to run out of options...thanks!
0 -
Believe me I understand the pain thing having been dx with rsd several years back. My hand and arm literally was on fire. The air hurt it. No one could get near me without being on severe nerve pain meds. I felt it spreading to my other arm and hand and into my right leg. I was scared out of my wits. I had nerve blocks, and physical therapy that did help a lot. My right hand, I'm right handed, was swollen shiny purple, and I couldn't bend a few fingers. My hand was locked. I'm a artist. So, I was told by the doctors and therapist treating me at that time to avoid anything that would cause nerve problems, surgery, or falls. I am at high risk for PMPS. Even right now a three wks post surgery I feel my right arm burning, burning under my arm pit and pain around the chest area...not that severe due to botox and taking pain meds.
I don't want to go there again. It is horrible and for me when going through the acute part of the pain, you aren't sure if you want to live.
What helped me more than anything was swimming. For the first few years after dx I swam almost everyday. I would go into the hot tub to the pool cooler water, although our pool was somewhat heated. I put my hand under the warm jets for a few minutes every five minutes. I walked. I kept my mind busy with other things. After awhile I didn't need pain meds. I've learned to live with a mild burning pain in my right hand, and keep my fingers moving so they don't lock. It took me about two years before I got back to somewhat of a normal life. I also learned that stress aggreviates the pain problem. I am learning to just let things go or walk away from stressful situations. It's not worth it. I'm no longer on pain meds...except for the recent mx.
One of the main reasons for deciding on a uni other than a blmx was due to being high risk for PMPS. The less surgery the better for me. The rsd dx has a huge impact on my decision making in my cancer treatment. I have seen people who are curled up in pain, lose limbs, and etc due to this pain problem. For me this is worse than another cancer dx. It is hell having your body feel likes it on fire.
0 -
MaritimeMom: My sister, Deeds, who started this thread, had acupuncture treatment for her PMPS symptoms, and her radiating arm pain completely resolved. I would really research and ask around to find the most reputable acupuncturist - someone who you can fully trust.
0 -
I did try holistic medicine prior to and following a capsulectomy I had in April 2010. I tried this in hopes to avoid this surgery. I was taking evening primrose, vitimin d, magnesium glyconate, and fish oil. I know there were some others but can't remember all of them. I ended up having the surgery because I was still in so much discomfort. Post surgery, I was taking 21 pills a day for 60 days! I also tried a electro stimulation around the scars prior to the surgery.
0 -
WHIPPETMOM: thanks for your post. I must say that I've always been a skeptic when people spoke about acupuncture and alternative medicines and treatments. Now that my options seem to be becoming increasingly limited, I find myself researching it more and more. So here's a completely ignorant statement for ya :-) ......the pain is so intense, that the thought of sticking needles in there makes me QUEEZY. Or maybe I'm just crazy....that's always a possibility too...lol
0 -
MaritimeMOM - although acupuncture was beneficial in my case, it's not for everyone. Enduring needles was not difficult for me, because I have used acupuncture over the years. Finding relief for the radiating pain up my arm was a great motivator, and mine was kind of a "how much more could it hurt" approach.
I would caution, however, to avoid needles in the axillary (armpit) area, due to potential lymph node complications. I chose an acupuncturist who has been in the business for 15 years, and also teaches at the local acupuncture college. As it was, I was the first patient with PMPS that she had seen.
0
