Post Mastectomy Pain Syndrome (PMPS)
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I find it hard to believe that with all the medical technology out there that Reconstructive Surgery and Plastic Surgeons seem to be living in
the dark ages. I had a bilateral mastectomy on Feb. 12th followed by tissue expanders. I thought I was going to loose my mind with all the pain
that I went through and every time I told my PS, he just looked at me like I was crazy. He finally admitted that most women did go through a lot of
pain but when he would replace these with the implants that would all go away. I did not feel any better after the implants were put in and I politely
told him that if this was how it was going to be he could just take them right back out. He finally decided to give me some muscle relaxers and this did
help, so I stopped taking them, only to have the pain come back. When I went back for my follow up I told him this and asked that he refill the muscle
relaxers to give me a little more time to heal. He informed me that no he could not do this because he wasn't into just handing out drugs and that this was really all
in my head because I could not accept that these were not real breasts. Keep in mind he only gave me one prescription and let me suffer for two months with no
drugs while dealing with the tissue expanders. I know this is not all in my head, I am not that type of person. I think most PS don't want to admit they just don't know
the answer or the truth of the matter they don't want to deal with it. Hopefully with time this will get better because I sure can't count on my doctor.
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I am sorry some are not being heard by their doctors. I took pain meds for about 4-5 weeks after my mastectomies and I took muscle relaxers throughout the entire tissue expansion process. I was in pain I slept in a recliner for 6 months, got massages and PT regularly. No one should have to live in pain; pain makes it harder for your body to heal. Try to find a doctor who will listen to you, get them to order some PT with someone who specializes in breast cancer patients. Mine did myofascial release and treated my lymphedema.
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I am sorry. Muscle relaxers and percocet did nothing for my pain. I am actually on cymbalta now and topamax. Some people find gabapentin to be helpful. That didn't help me either. My PS sounded a lot like yours thinking the implants would do the trick but admitted PMPS when they did not and suggested I find a Pain Med Dr. I am on 3 and 4 right now. A physiatrist who treats my frozen shoulders and a another who treats the pain in my breasts. This is an unexpected sucky side effect. I have done a lot of PT. I think stretching the pecs is very important but definitely consult a PT.
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i definitely had pain with the expander! And didn't keep it in for as long as they thought i should - my right side was reduced twice to try & match it which will never be the case because they are made up of completely different tissue. The implant to this day still feels like a rock in my chest
sorry to rant - but i too was made to feel like the only woman who had ever complained.0 -
Ladies, I just had the MOST AMAZING therapy session ever. My Oncologist recommended I use a private company called Oncological Rehab.. and pay on my own. I did and 2 women worked on my chest and arms and the tightness is gone! it's so much better after 1 hour of them touching tight points and relaxing muscles. Plus they gave me suggestions because they specialize in cancer / LE healing that my plastics nurse didn't. They told me NOT to do the exercises the nurse told me to do, as they will upset my muscles. I'm going back to them on Monday and will probably have a couple more sessions. I'm very very impressed with these specialists... they didnt' 'rub' or do any of the typical massage.. they basically pushed in and held... and had me put my hand on my forehead while lying down and they worked all the scar tissue with very gentle pressure. Wow...
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Lisey, what good news and must feel great to be pain free or nearly so. The treatment sounds like Myofascial release therapy in that it is not massage but more like you describe.
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Magic, yes, I bet that was what it is.. they didn't call it that, but it was like no massage I've ever had. Lots of gentle point and hand pushing / pressure. NO fast rubbing or kneading. I HIGHLY recommend this therapy over normal PT exercises for IRON BRA issues.
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Lisey, keep us posted as you return for other treatments and enjoy life at the moment without that darn ole iron bra.
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The head of the facility - who was working on me, told me the whole point is NOT to cause me any pain at all... and to let her know when the pressure was too much. They then walked it back and moved along to revisit that spot again later. They also did some pressure pushing under my ribs... I was in shock, but my iron bra extended down that far. I feel much better. She told me the tightness will return and to expect it to return... but with each session the window of not having the tightness will grow and muscles will slowly heal and get used to being untight. She also mentioned that iron bra can lead to LE type symptoms, even if it's not LE because the movement restrictions makes lymph fluid build up. So I'm excited to go back on Monday and keep working on this. Here is the office I use, perhaps it could help someone:
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I paid out of pocket, since I have an HMO that is self contained. It cost me $105 for 1 hr of working on me... I figure I'll need between 6-10 sessions to get rid of the Iron Bra.
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Lisey, could you be specific as to which post-mx exercises this new PT group told you NOT to do, please?
And if you don't mind, could you ask them if they are doing MFR or are they doing acupressure on you? Not all MFR is aggressive--there are certain techniques that are, but other techniques are more subtle and gentle. If it is acupressure, I'd be interested in adding that into my rehab regimen.
Thanks in advance.
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My therapist does both MFR and acupressure. The MFR is always gentle but releasing one area can make issues in another area, let your therapist know about more pain. It can cause more soreness for a couple of days after, too.
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Nash, I go in tomorrow and I will ask them what exactly they call their massage. I'm STILL feeling so much better... so I really think this is the trick for me to get rid of the iron bra. It's amazing how much less tight I feel and the metal cookie sheet stuck to my chest is GONE.
Also the main exercise she said not to do was wall leaning. Where you lean with your hand out 90 degrees on a wall. She said if your hand is in an incorrect position it could harm your muscles. She said to stick with spider wall climbing, but no leaning weight into it. One exercise she told me to do is to lay down and hold a dowel with both hands and raise it over my head, but allow gravity to help with doing this lying down. 3 times a day, 3 reps, 3 seconds each time.
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Lisey
I go to Onocology Rehab too. They do amazing work. Fortunately, my insurance covers and I have appts weekly (I've been going since 2 weeks after my 06-24 BMX with TE) and will continue until my DIEP FLAP on 09-21. I am able to do bicep curls (only 3 lbs) with 5 reps 2x day a couple of times a week, rows with an elastic band 10 reps 2x a couple of weeks and yoga once a week. My therapist says that once my DIEP is done, she really wants me to do some pilates (they offer this 2x week and yoga 2x week but these are not covered by insurance). I feel so much better after my session. BTW, my therapist noticed that I was getting a little fluid build up and recommended that I get another fill, which I did (now at 500). The PS decided to drain my non cancer side and extracted 90 cc's (or whatever the measurement is). I also asked the therapist about several MO's (my BS provided a list with 8 names). She recommended one that she thought I would really like. He is great and it is a wonderful fit for me.
Blessings to all
barb
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They are fantastic Barbski!... I'm glad you like them too. it's been 5 days and the iron bra is still gone. I"m going back in today and will ask a bunch of questions from the owner to get details for our non-local ladies. I'll return and report.
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Thanks so much for the exercise info, Lisey, and I'll look forward to your next report. I'm so happy that you have relief from the iron bra.
I looked at their website, and it looks like an amazing place. We don't have any sort of resource even close to that here. I have a close friend who lives in the Denver area and it might just be worth flying in for a visit and some PT sessions!
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Ok Ladies, back from my session.. I love those women. I asked about what it is they do and mainly they focus on Lymphatic Drainage Massage, Trigger Point Release, MFR... They said most PTs should know everything but the LDM, and the LDM is an important feature in helping our muscles heal properly.
They push in to all these points on my body that are tight and then release them. The odd thing is, they spent a lot of time on my diaphram muscle right under my ribs. It was a little discomfortable , but man... it really helped release my tension in my chest area. they also focused on my scapula and neck areas. I'm so much looser than I was last week - there's just a couple of stuck points now.. that they will focus in on. I can almost raise my arms straight up over my head on my own now.
The lead therapist also explained that sometimes lymphatic fluid gets blocked due to not being as mobile and while it's not technically LE, it DOES cause pain and makes the muscle not be able to heal. They work the muscles but also my arms and such to really get the lymphatic fluids moving again. When you've not really done a ton of normal motions with your arms for a few months like I have, the fluids stagnate and cause problems.
I"m really a believer in what they do.
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Thanks so much for the info, Lisey. I am doing LDM and MFR already, so will look into the TPR. So glad you're feeling better!
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MLD: Manual Lymphatic Drainage, is an art practiced by CERTIFIED lymphedema therapists, and must be trained and certified to do it, as harm can be caused by trying to push lymphatic fluid in the wrong directions. For more information, http://www.stepup-speakout.org/ is an organization and a movement to help understand and educate about lymphedema, exercises, practices, and how to find a CERTIFIED therapist in the U.S. It's actually very interesting! People and practitioners of massage are great, and I am not saying that yours are not qualified, but I have also found that there are therapists that are not certified, and who kinda change around the letters, paraphrasing an imitation sort of massage that is not really MLD, at all. Best of luck with this bizarre condition.
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Great point, Tomboy, about the need for a qualified practitioner to do MLD/LDM. I am very fortunate to not have lymphedema to begin with (the MLD is preventative), but also access to two outstanding CLT practitioners in my area.
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Tomboy, the ones I go to are linked with Swedish Hospital and ONLY treat cancer patients. They have Doctorates and have a special oncology certification. As I mentioned, they told me most PTs can do everything but Lymphatic Drainage... that's something that is specialized for cancer patients
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Great!
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Great!
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so glad when i read posts of people finding something that brings relief! & thank you for sharing the info! Wish we all had access to the right treatment - hopefully, when they really acknowledge the chronic pain many of us are left with, help won't be so hard to find
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I looked at the website you provided, and they look fantastic. They have all gone to great schools, and sound passionate about what they do. I also have a wonderful therapist, he would fit right in there, he went to many of the same schools. I just wish there were ten of him, because some of the others at the place I go, are just not that into it, it seems. A shame. I wish there was a place like that here.
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Tomboy: You bring up such a good point about not having certain health care options in your area. I totally agree and see the ramifications for my own health care with limited availability of services. I traveled the 250 mile round trip to Phoenix for my BLM but then follow up for the kind of specialty services discussed is not feasible. The National Rural Health Association provides some great rural health care statistics. http://www.ruralhealthweb.org/go/left/about-rural-health/what-s-different-about-rural-health-care. Link below
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Yeah, but this is Los Angeles!
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Tomboy: I am quite surprised and now must revisit my own take on life away from the big city. I do hope you find a provider who can help - the wish I have for all of us.
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Tomboy, I'm in the San Diego area, and am continually astounded at the lack of resources in Southern CA. It's frustrating that an area this size with this many people can't come up with something like what Lisey has in Denver.
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I used to live in San Diego and am again surprised that UCSD or Scripps do not have extensive breast cancer centers. If I remember correctly, the Scripps breast center up by UCSD had a gorgeous breast cancer screening center, but maybe that was mostly façade without many services when one actually got diagnosed with BC. When one gets PMPS then I agree, the services and science of care anyone provides are slim pickings.
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