Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

THE IRON BRA

Options
jessicav
jessicav Member Posts: 59
edited April 2020 in Breast Reconstruction

Hi Ladies-

 I had a bilateral masectomy with tissue expanders and saline implants in 2003 and have just absolutely decided I cannot take the IRON BRA anymore! I have tried and tried to make it ok but it is not OK.

I felt like this from day one and I must get them out. Just dont know what the cause is of the never ending IRON BRA. Have been discussing the possibility of nerve damage in the Post Masectomy Pain Syndrome thread but this is plain tightness...like duct tape tightly wrapping around my chest. I do not have tingling, cording or numbness in arms.

Was hoping that by switching out  saline implants for smaller  silcone would find relief but no PS can say for sure. Possibly considering DIEP but don't have much body fat..only a little in tummy. Very concerned that if I do DIEP (even though the muscles are spared) my stomach core will still be affected and I already have bad lower back problems.

Really need relief and so concerned about enduring another surgery only to still be in THE IRON BRA.

One DIEP PS says he could take some fat from below AND above the belly button, lift up the belly button and re-place it. Would prefer I think to do implant exchange but not if it does not offer relief.

Any one locked in an IRON BRA years later like me?? Anyone find relief? 

«13

Comments

  • Linda54
    Linda54 Member Posts: 509
    edited February 2010
    Options

    Jessica

    I am so sorry that you have endured the "iron bra" for so many years.  I had bi-lat MX in April '08 with immediate lat dorsi flaps and expanders...later exchanged to silicone implants.  I have also experienced the tightness thinking it was the expanders but after exchange the tightness continued.  After I healed from my Aug 09 nipples/areolas surgery I went to a PT and after several weeks of stretching I still had no relief.  I slacked off my stretching during the busy holiday season and am trying to get back into the routine stretching.  All this time I thought the tightness was from the muscle being brought around from my back to my chest.  Now I am confused because you have this tightness and you did not have LD recon.  So this tightness is from the implants and has nothing to do with the LD muscle....LOL....I have been trying to stretch these muscles to loosen them up.....Have you been to a PT or have you been doing any stretching?  What has your PS told you? 

    Like the duct tape description...

    I keep telling myself that I am thankful that it is not "pain" only tightness...I can live with tightness but I really do not want too if something can be done about it...I do not want anymore surgery though.  I have even thought that maybe smaller implants would give me some relief but that would be surgery...argggg....

    I have even stepped into the shower and look down to make sure my bra is off because it felt like I still had it on.  You story has really disheartened me because I thought with time it would get better.  I have mentioned this subject quite a bit on the boards and have yet to find a solution other than people recommending stretching that has helped them. 

    Keep in touch and maybe we can find a solution soon....

  • crusader1
    crusader1 Member Posts: 114
    edited February 2010
    Options

    I had lat flap surgery in July. I had my TE put  in after my other one failed in November . I have a very bad case of iron bra. I also hope that after my exchange on March 17th the tightness will go away. It is not painful but annoying. I don't wear a bra that often as my good breast has been lifted and my chemo breast filled to the brim . I always feel like I am wearing a bra. The PS said it will feel better when I get the real implants. I do hope he is right.

    Jessica that is scuh a long time to have the iron bra. Wish I had an answer for you. Did you have lat flap surgery?

    Linda- I love what you say about checking if you are wearing a bra before going intot the shower.That is how I feel as to whether I have my bra on or not. It is always there.

    Do we think it is the lat flap surgery?

     Hugs,

    Francine

  • Linda54
    Linda54 Member Posts: 509
    edited February 2010
    Options

    Francine

    I too thought the tightness would go away with the exchange surgery but it did not for me.  Maybe Jessica will come back and tell us if she had the LD flap surgery.  2 ladies in my town had the same LD flaps as I had and we have the same PS and they do not have the tightness.  I have been to a PT which did not help me.  Maybe with months of stretching it will get better....

  • kcshreve
    kcshreve Member Posts: 349
    edited February 2010
    Options

    Jessica,  I'm new to this board, and new to reconstruction.  I have few comments to make except that I recently had a DIEP.  I met with a local PS who was willing to do the DIEP as long as I consented to his changing his plan mid-surgery to go from a DIEP to a TRAM.  It is the TRAMS which use abdominal muscle.   A true DIEP does not use abdominal muscle, so your core would not be damaged.  The recuperation from this procedure is about 4-6 weeks.  I'm 3 weeks post-op and doing pretty well.  If you are to consider a DIEP at some point, it is worth the time to find a PS who is sufficiently experienced in the procedure so as not to require you give him permission to do otherwise in the middle of surgery.  I chose to travel in order to use a more experienced PS, and I'm quite glad I did.  - Christine

  • terrij152
    terrij152 Member Posts: 63
    edited February 2010
    Options

    Jessica, I initially had tightness after my BMX with lat flap reconstruction, but did a lot of stretching of my chest muscles during the expansion process and had a lot of relief of the tightness.  I had my exchange to silicone implants and that tight bra feeling is gone thank goodness.  Last night was the first time I slept without a bra since my exchange and for the first time it actually felt like they were my own breasts and not some hard plastic rocks in my chest. 

    Good luck!

  • jessicav
    jessicav Member Posts: 59
    edited February 2010
    Options

    Hi Ladies-

    So great to hear from you! No LD flap surgery. I had TE right after masectomy in 2003 and was expanded over several weeks. With each expansion, my PS kept saying it will feel better after permanent implants were in. So I endured the expansions but I went back after the last expansion and told him to deflate them down one because the stretching was just tooo painful.

     The perm implants were put in and it felt a little better but not much. I told him about the IRON BRA and he said it would get better with time. He also said it was a nerve issue and that the nerves were confused and had no where to go. He likened it to when an amputee still feels a limb that has been removed or as he put it.."the limb is in the bucket" in the operating room but person can still feel it afterwards.

    I went back a few times and said over and over that it hurt and he said I did not have any capsular contracture (which has been confirmed) and that everything was just fine and that I was probably "oversensitive."

    I thought that the problem was that they were saline 530 cc and that they were way too big and heavy for my frame. But then some ladies here told me that they too were small framed and had the same amt of cc's with no IRON BRA.

    Another PS told me that my brain had just not "compartmentalized" the implants well.

    I had physical therapy immediately after surgery but it did not seem to help much so I just thought I had to live this way. I know now that I can't live this way and feel like sometimes I am sleepwalking through my life waiting for the discomfort to stop.I have not done anyting over all this time because no could or would tell me what was wrong and I lost trust in docs.

    I see  here that many women feel just fine after reconstruction with no tightness, some here have said they find relief over time and then there's the category I am in..One PS told me that some women find relief only when they are out. She said that she thought I would find relief with an exchange but no guarantee. She also said that women with fibromalgyia have difficulty with implants but I do not think I have that..can't say though.. My implants are very heavy to me and look like cantaloupes on my chest and in no way resemble breasts. I so miss the feeling of well being that comes with physical comfort.

    It's as if the pec muscles are mad. It feels raw like a wound that just can't heal. I had an MRI and it said that the implants were covered by less than 1/3 of the pec muscle. So my skin is holding up most of these bowling balls on my chest. I had never felt discomfort or pain in my life before...studied ballet for a lot of years and know my own body..which this no longer feels like...I know things will not be the same like before but just wishing to be comfortable in my own skin..in this case literally. Welcome your thoughts..

    Best,

    Jessica

  • Delilahbear
    Delilahbear Member Posts: 206
    edited February 2010
    Options

    I have the "Iron Bra" feeling only on my right side. I did not notice so much with the TE's, but never did have much discomfort with them. When I had exchange to saline implants (750cc) The  right side felt tight and spasmed under the lower pole and around to under my arms where the drains had been. I next had an exchange to 960 cc saline and the feeling persists. PS says it takes time for the nerves to sort themselves out and that this is the area where he lowered inframammary fold. I hope it starts to subside and with stretching it does feel better. You are not alone with this feeling and I hope mine resolves some more soon. A bra does not even make a difference. Left side feels just like a part of me. Bottom line is that exchanging implants does not always bring relief.

  • rubytuesday
    rubytuesday Member Posts: 19
    edited February 2010
    Options

    Nerve damage can present as tightness.  I have it down my side and in my armpit.  Women who choose not to have reconstruction can have tightness.  I guess what I'm saying is that there may nolt be an easy fix for it.  IMO, it could also be the size and type of implant.  It could even be a combination of things.  I wish you the best at finding a solution.  Best wishes

  • jessicav
    jessicav Member Posts: 59
    edited February 2010
    Options

    Hi ladies-

    This is all great info! It's true..could be one thing or a number of things as Ruby Tuesday said. Thanks all....feel better..

    Best,

    Jessica

  • Annabella58
    Annabella58 Member Posts: 916
    edited February 2010
    Options

    Hello dears:

    (Hi Linda!!  Hope you are doing great and enoying the new 'cherries on top".)

    I had such issues with this iron bra, I got a big old exercise ball from Walmart,  Plastic, 10.00, Pilates ball.  I used it to do stretches my PT taught me, religiously, 3x a day for months.  That broke it finally.

    Also: before i did these stretches, i took a 1/2 of a clonazepam to help with muscle tightness.

    For me, I also had very thin skin and I notice that when I sit for along time, and don't stretch, this comes back.  But most of time it has left me.

    See if you can find an RX for clonazepam from your PS or general dr. to help with this.  Then try the pilates ball.  Finally, another trick: I would take a hot shower to loosen everything up before the stretches.

    I would also agree with the PS who said that it's nerve regeneration.  I am two years out and only now, suddenly, patches of previously numb and iron bra skin wiill itch like crazy...then feeling comes back to that area and the iron bra leaves that area as well.  Initially my PS had told me it could take up to 2 or more years to regenerate, and I have only now realized how true that was.

    But 2003?  I'd look into it again.....way too long to suffer with this!  Maybe going smaller would help?

    Good luck all

    xoxo

    annie

    (another proud "Ta Ta" sister)

  • precioustime
    precioustime Member Posts: 26
    edited February 2010
    Options

    I am one of those who had BMX without Reconstruction and have too felt the IRON BRA effect.  It's been 3 months post surgery and it was the worst probably the 1st month-- almost finding it hard to take a deep breath. 

    After a visit with PT and mentioning this to them while being fitted for a lymphedema sleeve-- She said the best thing was to gently massage the opposite way across the scar- that this would loosen the tightness and that it was basically the scar tissue trying to ahere to the muscle? 

    I know we are all different-- but this has worked well for me. 

    Loretta

  • bev54
    bev54 Member Posts: 1
    edited February 2010
    Options

    After almost two years of "Iron Bra" and misery just had smaller implants in to replace others this past Dec. First set wasn't very large but just miserable. So far this has worked really well and have been pain free once surgery soreness left. I was so miserable before I felt like ripping them out myself. Good luck!

  • crusader1
    crusader1 Member Posts: 114
    edited February 2010
    Options

    Ladies,

    Great info. We are have similar yet different problems.

    My exchange will be on the 17th of March. Hopefully after that it will feel better.

    Hugs,

    Francine

  • julowl
    julowl Member Posts: 2
    edited February 2010
    Options

    Jessica,  It is wonderful to know that others have the Same Iron Bra Feelings!  Not that it is a good thing! I had reconstruction done at same time as Bi-Lateral Masect.  Had the tissue expanders put in this all occurred 12/08. Had the saline added until end of May 08, then permanents implants put in. I did PT for a little while when the temporary implants were in but it did hurt so I stopped. For the first time  just 2 weeks ago I made the comment I would give anything to sleep a whole night thru without feeling like I am sleeping on bricks.  Too bad I did not do more research on this prior to surgery. I was more concerned with the cancer of course. Just wanted to say I  will keep reading all these articles to see if anyone finds a solution without having to get another surgery.  Live Happy! Julie

  • jessicav
    jessicav Member Posts: 59
    edited February 2010
    Options

    Bev54 - Would love to hear about your implant switch success and really wondering who your PS was...because getting relief would be absolutely life-changing.

    Also, going to try PT again but it has been so long..

    Thanks so much ladies..knowledge is power!!! Such great info!! So hopeful!

    Blessings,

    Jessica

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
    Options

    Hi Jessica - I've been thinking about you since you posted on the Post Mastectomy Pain thread. Hoping to hear from you with some good news about the "Iron Bra". How are you feeling? Did you go to NOLA for a consultation?  Are you going to have another surgery? Hope you're feeling optimistic about being comfortable again some day.  with love, Fog

  • jessicav
    jessicav Member Posts: 59
    edited March 2010
    Options

     

     Hi Fog!

     

    I have not been on the thread for a little while and was soo happy to read your post. Made me feel so good..bless you..

     

    Iwent to NOLA last week and this is what Dr. D. says about the IRON BRA:

     

    My understanding is that my mastectomy was more than likely a “partial” skin sparring mastectomy rather than a complete skin sparing mastectomy. As such, the remaining skin was stretched a great deal and like a rubber band, the skin wants to recoil.  The reasons for extreme tightness and the feeling of being locked in an “iron bra” are that the remaining skin left after the mastectomy was stretched over a large implant for my frame.

    Also, the pec muscles are raised very high due to the size of the implant underneath and the fact that the implants are high profile adding to the pressure.  Later, capsular contracture happened adding to the discomfort. So the skin is too stretched and they took to much skin..

    Dr. D. says that I could do smaller implants with pocket revision and maybe I would not get capsular contracture again. No way to know for sure. Says I could do DIEP but probably not the best candidate since not enough skin.

    Would love to hear your thoughts..

    Jessica

  • Kristinka
    Kristinka Member Posts: 223
    edited March 2010
    Options

    Sorry to hear so many of us have this same feeling.  I'm three weeks out from my exchange, and I definitely have the  iron bra feeling.  It is better than with the TEs, but it is still there.  I have started to do lots of arm stretches, which give temporary relief.  And tomorrow, I'm calling to schedule a massage b/c I notice my back tensing up.  No skin was removed during the mastectomy, so I think it is my muscles that are pissed off!

    Hoping we all get some relief soon,

    Kristen

  • Linda54
    Linda54 Member Posts: 509
    edited March 2010
    Options

    Jessica

    I think I stated this before but if my doctor told me 100% that smaller implants would rid me of the tightness I would change them out in a heartbeat. I would not do that just to try and see if it helps.  I am not convienced that is the problem.  If it were, then a lot of women would have this tightness.  Lots of women who originally had A or B cups go to a C or even a D when they have recon.  I wore B bras (barely)  and now I am in a C.  I know a lady who wore A cup bra and now is a C, she had the same surgery I had and even the same PS, she does strength training like I do...so we are a lot alike...she does not have this tightness.  I do wish we could find out for sure why this happens to some of us and could fix it.  I guess we will eventually just accept it.  Somedays it bothers me worse than other days.  I did go to a PT and it did not help.  I still do my stretches but not religiously. 

    Kristen, I hope you find relief.  Let us know if the massage helps your back.

  • Delilahbear
    Delilahbear Member Posts: 206
    edited March 2010
    Options

    I too have the iron bra feeling only on the right side after my first implants. I never had it with the TEs and they were approximately the same size as my first implants. TEs were 700 HP fill and the implants HP 750 Saline. Was told probably muscle spasms or costochnodritis from the lowering of IMF. Went to 960 Moderate Profile Plus implants and still have iron bra feeling on the right. It is getting better with stretching and some feeling returning. Point of this is it doesn't make any difference in implant size. I think it is how the muscles and skin are stretched and the nerve damage due to the incisions. 

  • jessicav
    jessicav Member Posts: 59
    edited March 2010
    Options

    Hi Ladies-

     So I am wondering if the "iron bra" is due to how the muscles and skin are stretched and not due to the implant size....how is the problem fixed??

    Jessica

  • cs34
    cs34 Member Posts: 12
    edited March 2010
    Options

    Hi everyone,

    I did the DMX & latt flap March 2009 and I'm still waiting for my exchange.

    The only thing I can contribute to this is that I had to have my right TE reduced because it was in the way of the radiation beam to my left side.

    When they reduced my boob I felt a world of difference. Maybe reducing a size of the implants would help if the iron bra/vice grip is too much to take?

  • jessicav
    jessicav Member Posts: 59
    edited March 2010
    Options

    Linda54-

    I see what you are saying about the tightness not being related to the size of implant. I am hearing that in my case too much skin was taken to accomodate  a 530cc implant and that is the reason for the extreme tightness. The skin is very taught and the implants feel like they are crammed in there and seem to bulge out from the sides...its like whose on first, what's on second..really want these implants out but would feel bad if I did exchange and still had the iron bra.

    Fog-What do u say? 

  • jessicav
    jessicav Member Posts: 59
    edited March 2010
    Options

    Kristen-

    You are right..I think the muscle is pissed off...but why are some women ok with implants under the pec muscles and others are not...I have to do something.....its midnight and all I think about now is relief..

    Its so nice to come here and share.....friends in my life are sympathetic but really don't understand the language...how could they....some things you just have to live to know.. 

    rest well tonight ladies.. 

    Jessica 

  • TXBadboob
    TXBadboob Member Posts: 109
    edited March 2010
    Options

    I, too, have the Iron Bra feeling.  I call it my Rings of Fire!  I am always aware of them being there, especially when I try to sleep.  I am getting some other Dr opinions, and so far they say my skin is too thin and the implants too heavy.  I want to get smaller ones, but I hate to have another surgery.  I work out and stretch, but I always feel them there, even just sitting here.

    Hope everyone feels better soon,

    Deen

  • Linda54
    Linda54 Member Posts: 509
    edited March 2010
    Options

    Deen

    Me too!!  just sitting...rolling over in bed...all the time really.  I do not have think skin...I have LD flaps (the football shaped flaps) with the Lat Dorsi muscles tunneled to the breast.

    Keep us updated on what you plan to do

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
    Options

    Hi Jessica, Deen, Linda and all sisters here. This is purely a guess based only on my personal experience but I think the tightness is due to nerve damage. I'll tell you why - my left side (where I suffer from post mastectomy pain syndrome) also feels tighter than my right side. My right side has no symptoms at all. No tightness, no pain or tingling. My left side has it all. Not really iron bra but when I raise my arm or make certain movements my left side feels tight and "pulls". I am always aware of my left side. My right is "invisible" to my brain. I have come to believe (and my neurologist thinks) that a nerve was traumatized on the left side. 

    Size of implants - same on both sides. Skin taken - same on both sides. Pectoral muscle - same on both sides. So why all the problems with the left side? I'm thinking nerves. 

    I truly do feel your pain and pray you find answers. With Love, Fog

  • jessicav
    jessicav Member Posts: 59
    edited March 2010
    Options

    Hi Ladies

    Ok so if it is "nerve damage" can "nerve damage" be fixed? 

  • Deborah2013
    Deborah2013 Member Posts: 1
    edited March 2013
    Options

    Jessica how are you feeling now?

  • Marcyv
    Marcyv Member Posts: 9
    edited July 2013
    Options

    I had my BMX in April and completed my TE fills about a month ago.  I go in for my exchange on September 4th.  I have an extreme case of Iron Bra!  I thought this was normal.  It seems it's pretty common but not everyone has it.  Mine are solid as a rock and do NOT move.  Not one bit.  They are very tight and the pressure is always there.  At this point I have pretty much gotten past the pain (the fill ups were horrible) and am now just uncomfortable all the time.  When I do my stretches, I do feel sometimes like somethings going to rip.  My PT says no though.  :-) There is no way I could lay on my side.  I hope this goes away when I get the exchange. 

    Is it normal for them to be completely solid feeling and absolutely don't move?  I've heard some people post about wearing bras for support with the TEs in but I don't know how that could possibly work for me.  My whole chest is like cement!!