THE IRON BRA
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Marcyv, I had TE's put in on June 4th when I had all my other surgery and, yes, it's like carrying around a couple of rocks on my chest. There's been some discomfort with fills, but my ps advised getting on my muscle relaxers again. I've found a couple of days on them helps a lot. She's also holding off on anymore fills until after I'm halfway through chemo. I've stopped wearing bras, too; they're just too uncomfortable now. I've also found pt helps a lot. The practice I go to specializes in care of breast cancer patients and their massages feels wonderful and help relieve a lot of the tightness.
My breast surgeon had told me not to worry about pt, but I've found it's the best thing ever and look forward to my appointments. They've helped a lot with the cording problem I have from the lymphnode removal, which is something that added to that feeling of tightness and lack of mobility.
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Thanks Vilia! I never had muscle relaxers, I'll bet that would have helped! I think the PT helps too.
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hi i just had my diep flap surgery without tissue expanders on july 3rd and my iron lung just seems to be getting worse. when it feels like it starts to get a lil better,i do something and it gets worse. my drs tell me i need to excercise my arms, how can i excercise when i cant move them. im 5 weeks into tecovery and i cant do anything on my own. i thought by this time it would be better, and i could actually sleep and get up from my bed on my own. do you other ladies have the issues of cuting off circulation to your arms from the "pec" area, side breast. i am at the point i want surgery to get the reconstruction out and dont want chemo because im soo sick of the pain. i cant drive, cant take care of my pets, and dress or shower myself.
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Hello all. I had BMX skin sparing with direct-to-implant on Oct 13, 2015, and from day 1, I have had EXTREME IRON BRA. I had panic attack upon waking thinking I was being crushed, squeezed or in a bra 10 sizes too small. After 8 months, I still feel as though my skin is going to rip open...which it has several times and have had to have several wound closures. It feels as though my skin is sewn to my ribs. Laying on my side is just not possible. Lifting arms high over head has a very uncomfortable and weird sensation in chest muscle (like muscle jumps up). Mornings are typically slightly more comfortable, and by the afternoon, all I can think about is getting back into bed on my back with pillow under knees for some relief of the bra. My PS tried Lyrica and Flexeril...Lyrica did nothing and Flexeril (muscle relaxer) helps about 10%...just taking the absolute edge off, however, also makes you extremely tired. PS recommended going to Pain Management doc, and he put me on Cymbalta and muscle relaxer...with no positive results whatsoever. Next stop another breast surgeon who said she had never seen anyone this tight in her career. She recommended a PS with significant Diep Flap experience.
After 6 surgeries (open wound, implant removal, TE insertion, TE removal etc etc), and zero relief of "Iron Bra" even with nothing in my chest now, I have no relief at all. So there goes the "it will feel better without implant/tissue expander" theory.
I am now scheduled for Diep Flap surgery on July 5, 2016. My new PS says there are no guarantees for relief of this discomfort since NO ONE seems to understand exactly what it is. He did say he will remove all scar tissue and look to see if anything doesn't look right. Not too hopeful for relief, since I've felt this since BMX and there was no scar tissue yet, however, I'm hoping to at least be whole again.
I will post again after the Diep (with hopefully!) some good news for everyone.
Has anyone tried Botox shots in chest wall? If Diep gives no relief, I'm going to try that route next.
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Kimba--I had a unilateral mx with lat flap reconstruction May 2015. I have been where you are in the tightness department. It's exactly like what you describe--being crushed to death. It's miserable, and for me, harder to tolerate than pain. I was so tight that my surgery side ribs were literally not moving when breathing.
My PS and pain clinic sent me down the "treating it as nerve damage" route with no avail either. Flexiril didn't work for me either. I had the added fun of my back scar from the lat flap procedure giving me the sensation of a metal rod in my back. Basically I felt like I was in a body cast on one side.
I went through 8 months of PT which did nothing, except for a bit of relief from some rib mobilization. I also got some relief from going to an osteopathic manual medicine dr who got my scapula unstuck (a common side effect of mx. That helped with the back spasms).
I finally figured out that the majority of my issues stemmed from tight fascia, muscle spasms (don't know why the relaxants don't work, though) and scar tissue. I found a chiropractor who has a protocol to address all three. It's listed here:
http://www.sdcenterforhealth.com/topics/163-rehabi...
The Therapeutic Endermologie has helped me the most, along with the Graston method of scar tissue management (which has really helped my back scar). The endermologie machine is basically a vacuum that sucks up your skin and the fascia with it. I got immediate reduction in tightness. Manual myofascial release could help as well, and there a variety of techniques for MFR if you can't find someone with an endermologie machine.
I also go to an oncology massage person who specializes is manual scar release and manual lymphatic drainage. She can feel the tight bands of muscle and works to relax them. It's totally different than the massage the surgeon sent me to.
So, I don't know if your tightness is caused by the same things my tightness is caused by, but I wanted to share what worked for me, b/c I know how absolutely miserable the tightness is. People who haven't experienced it can't imagine what it's like. It's not tightness that can be relieved by stretching, and it's a mind trip.
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I Had a BMX on 3/11 without reconstruction. My chest was very tight for about 2 months. I went to PT for 6 weeks 3 times a week. After the 2 months I felt like a new person, the tightness was just about gone. What a relief it was! Well now its coming back. I slacked off on doing my stretches, I felt so good I was forgetting to do them. I've started doing them again but its not getting better! I want to feel good again!!!
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I had the LD flap and implants... I still get the iron bra feeling at times and my surgery was 2007
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I had a BMX about a year ago. I still have the iron bra feeling but its getting a little better. I still look down to make sure I took off my bra when Im in the shower. It always feels like its still on! Just one more thing to endure with this lovely disease!
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I had BMX with no reconstruction a little over a year ago and the awful crushing tightness continues. I've tried Gabapentin, Lyrica, Desipramine, stretching and nothing works. I've stopped all those meds because I needed to take other meds to get rid of side effects from Lyrica and Desipramine. So now am on nothing and afraid to have the stellate ganglion block that my pain doc recommends plus she wanted me to be on the desipramine when I had the stellate ganglion block (and that could entail multiple blocks over many months). I have researched this topic extensively and find that the success rate with all the varied interventions is not promising.
My heart goes out to all of us suffering from the long term side effects of cancer treatment. My empathy quotient has expanded exponentially since I woke up from surgery in April of 2015.
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Thank you all for your responses. I'm sorry to hear that anyone knows what I'm feeling. It's debilitating. I will definitely look into Therapeutic Endermologie post surgery.
Right now, concentrating on getting through Diep Flap scheduled for tomorrow at 7:30 am. Nervous and excited at the same time. Looking forward to waking up with breasts. Praying they take since implants are no longer an option for me and just want to feel feminine again.
Thanks again and God bless!
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Kimba: You are right to concentrate on your upcoming surgery, healing and feeling good about your body. Gentle hugs your way.
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kimba, best of luck with surgery tomorrow! Please keep us posted on your recovery, and if the DIEP fixes the iron bra/crushing tightness for you. I'm glad you'll look into the therapeutic endermologie down the road, b/c it has helped me a lot and might help you too.
Just a side note--I went for a second opinion appointment with a different surgeon last week to try and get some non-ego driven answers to my woes. He felt that going direct-to-implant with my lat flap reconstruction contributed to my tightness issues. His analogy was that of stretching a tight bungee cord into position without stretching it slowly first (the function of TEs). Now, I know of plenty of women who have had iron bra issues with TEs, but in general it makes sense that things could be worse with direct-to-implant.
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Hello Ladies,
Taking a quick moment to update on bilateral Diep Flap surgery of 7/5/16. Surgery was 12 hours and then emergency surgery next day RT breast to repair small slice of flap that was failing. Besides lots bruising on right side, so far both flaps are doing well (thank God!). On Monday had all 4 drains removed and tape off pelvic (harvest) incision. The surgery is without a doubt a tough one, however, waking up with beautiful mounds from your own body that actually look and feel like breasts will hopefully make all of this discomfort worthwhile. I must stay, at least in my instance, the pelvic incision is an afterthought not causing much discomfort at all. Can't walk upright but that will come in time.
As for the iron bra syndrome, it's still too soon to say one way or another since I'm definitely feeling tightness and discomfort but that is typical for such a major surgery. MY PS said he removed A LOT of scar tissue since this has been surgery #8 and #9, and I did have capsular contracture on RT breast since I still had an implant on that side that had to be removed prior to Diep.
Just wanted to update post surgery and will absolutely let everyone know if there is ANY real relief as the incisions heal. I must say I'm not feeling crushed 100% of the time, however, I'm still taking pain medication so only time will tell. Remaining optimistic!!!
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Thank you so much for the update, kimba. Glad you are through surgery and healing. No crushing feeling 100% of the time is a good start! Please do continue to keep us posted!
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Hello everyone,
I haven't posted on BCO in a very long time. I had someone contact me about my Iron Bra feeling. I hadn't really thought about it in a long time. So I removed my sports bra and focused on how my body felt. I am glad to report that there's no tightness across my chest...just the feeling that something foreign is in my body which is not bothersome. I had a bi-lateral lat flap recon and I can still feel where the muscles were moved around but it's not bad. It's been 8 years since my expanders were replaced with silicone implants. I cannot say when the tightness went away. I just thought I got use to the feeling. Like with everything else that has to do with mastectomies and reconstruction....it just take time...sometimes it takes longer than we expect it to.
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Could others that posted on this topic update their outcomes? I'm 4 years post bmx and have found no solution for this issue. I would add cupping to the other suggestions. It helps some. Thanks for sharing your experiences. Not many seem to have this problem.
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bcs22--I agree regarding cupping.
Along those lines, I've found therapeutic endermologie helps. It's basically like cupping, but with a endermologie machine. Anything that helps pull up the fascia, whether it's MFR or cupping or endermologie, seems to help take the edge off.
Other things with which I'm having some degree of success--
--Thoracic and rib mobilization. The muscles up and down my spine were completely seized up, as were/are my intercostal muscles. Also, my rib joints were frozen, where they intersect with the sternum and the spine.
--Trigger point injections. I just started these, and they are helping my back spasms to calm down. Next round we will focus on my shoulder/rotator cuff.
--Acupuncture. It's very trial and error, as well as practitioner dependent, but the last session I had helped a lot. She also did cupping, as well as some deep tissue massage.
--Lymphatic drainage massage, done by a LE therapist.
--Graston technique (scar reduction/mobilization).
None of these therapies take the iron bra away for me, but they all help to some degree.It seems that the iron bra is either nerve based, muscular/skeletal based, or some combination of the two, depending on the person. I think that's why it's so hard to find a solution.
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I am 19 months post op and the iron bra is still there and that tightness has caused my breathing to become shallower thus causing restrictive lung disease. The tightness wraps around my underarms and into my back causing muscle pain in my back and neck. As with so many diseases, solutions are difficult so maybe we need to find a prevention like having surgeons be much more careful to not cut nerves. On another site, I find that many individuals report that marijuana really helps reduce pain. If you are in a state that allows for medical marijuana use, I highly recommend giving that a try.
Let me add that I think the term Iron Bra does not describe the pain I feel. I did not have reconstruction so the term is not suitable. It is an Vice Grip that feels like I have been told to exhale to really deflate my lungs, then my chest was tapped tightly with masking tape so that I cannot fully inflate my lungs again, and the tape burns, and sears not only on the surface, but goes deep into my chest, back, underarms.
This Post Mastectomy Pain interferes with proprioception ( is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.) Therefore, I loose my balance because the core of my body is severely compromised. Walking on uneven ground is difficult. So I can no longer hike safely on the beautiful trails near my home. Any strength building upper body exercises cause me to tighten muscles I work daily to loosen. So, what I thought was a simple decision to have a mastectomy so I could get on with my life, has caused me to not be able to get on with my life and do not see a change in my future. So much for my story. It is a bad pain day and I'm missing out on yet another year of glorious fall hiking weather.
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I had my BMX 3 1/2 years ago and I still have "Iron Bra" every day, all of the time. I no longer have the pain but I am still quite uncomfortable. It's like I'm walking around with my "breasts" in a vise. I admit I have fallen away from doing my exercises so hearing that they help is encouraging. What is this cupping many of you mention??
Thanks,
Marcy
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Thank you for the replies. Therapeutic endermologie is new information. Its similarity to cupping, which has given me the most relief, makes me hopeful. Did you do this with a PT?
Before I describe cupping, let me say that I have no issues with lymphedema or pain. My issue is exteme tightness from under the armpits and sometimes up into the shoulders if I don't do any stretching, PT or cupping. Slacking off as little as four days will back up progress.
I purchased cupping sets from Amazon (Edge by Lure medical grade silicon). I don't think we can post links.
There is a great deal of information about cupping online. I'll try to tell you the differences I found in using it over implants. I use static (letting the cups stay in place for 5-10 minutes) and dynamic(moving to stretch the fascia) cupping. I do this daily as time allows. Static works under a large t-shirt running around in the mornings. Dynamic is good while watching TV.
Start slow. The skin will discolor at first. I only did dynamic cupping in the beginning. Now, there is no discoloration even if I forget to remove one after 20 min. The muscles will be sore. Do what you can tolerate. I've had the most relief over the muscle. Less success over areas where the alloderm seems stuck. Although, nothing else including Graston has helped that area either.
It's not a permanent fix. As nash said it takes the edge off.
kimba333 would you keep us updated on whether diep relieved the tightness?
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bcs22.. I found this brief description of cupping - Cupping therapy is an ancient form of alternative medicine in which a therapist puts special cups on your skin for a few minutes to create suction. People get it for many purposes, including to help with pain, inflammation, blood flow, relaxation and well-being, and as a type of deep-tissue massage.
Cupping is still used and is becoming popular again after the past Olympics when red round welts/bruises showed up on Michael Phellps back. I had cupping treatments done in the 80's by my chiropractor for back pain and it did work to reduce the pain. As for the suction - it is often created by rubbing alcohol inside the cups then lightening them on fire and placed on the painful area, a suction is created, the flame goes out and the suction created pulls blood to the site, thus reducing inflammation. I'm not sure about other means used to create the suction.
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bcs22--I have the therapeutic endermologie done by a chiropractor. In theory you could go to a cosmetic endermologie place that performs it for cellulite reduction, b/c that's the non-therapeutic use for the machine.
The acupuncturist who did the cupping on me used silicone cups which create their own suction. It's different than the traditional glass/fire method.
As a note--I do not have LE aside from some minor truncal swelling in one spot. My LE therapist, whom I see as a preventative measure, does not approve of the cupping. Or endermologie or acupuncture or trigger point injections. She is very, very cautious about LE risk. However, the endermologie and cupping actually stimulate lymphatic drainage, so I'm not sure why that could possibly trigger LE. But I wanted to mention it as a potential concern for some.
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magiclight-the suction from silicon cups is created by squeezing them. This allows for gentle use in the beginning. Dynamic cupping will cause redness while you are doing it but leave no lasting mark. Static cupping if done incrementally leaves little marking.
nash-my PT too expressed concern about cupping and LE.
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My tightness feels so much better when I am wearing a bra with prosthetics, anyone else
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Sophiee - I, too, felt much better while wearing a tight fitting sports bra (like the lululemon tata-tamer). It minimized my iron bra feeling
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Thank you everyone for posting so I feel that I am not completely off the wall with my "iron bra" feeling. I am two months out from bmx and immediate reconstruction. I have been in pt for 14 sessions now and have no relief. My nerve was hit on one side and I don't have great rom. Anduction constantly have the feeling of having on a really tight bra that I can't wait to take off only this one I can't. It is a t a point where it is affecting mysaily activities because I am always so uncomfortable. So now I am wondering if I should change the type of implants I have, if that would provide me with any relief. Currently I have textured tear drop implants. Has anyone changed there's and felt any relief?
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Jessica and Reneepod, have either of you found relief? I'm two years plus out from BMX and considering removal of implants because nothing has worked for me.
Have either of you heard of pre-pectoral revision surgery?
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Hi everyone, I am relieved to have found others like myself here. I had BMX in May 2010 with recon at Mayo Clinic and have had this extreme tightness and iron bra feeling for at least 6 years! Have you heard of or personally experienced going “flat chested" or “breast free" for IMMEDIATE relief? I am seriously considering it, Need to feel comfortable in my own skin! Please Help! Looking forward to hearing more and thank you for sharing.
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Doyou wear a bra with prosthetics over implants?
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Sorry to hear what you are experiencing. Have you been able to find relief? Sending healing thoughts your way.
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