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'Ironbra' syndrome 15 years after surgery

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Gill1312
Gill1312 Member Posts: 14
edited December 2021 in Pain

Hi all,

I'm experiencing what I have discovered is called 'Ironbra' syndrome. Didn't know it was a thing until I started researching these past few months. I had my mastectomy in 2006 and reconstruction 12 months later. I had lymph nodes removed which showed no spread so no other treatment necessary other than 5 years of Tamoxifen. I recovered well after both surgeries with no complications and have lived a full, active life until a few years ago. I noticed that my back would ache after doing anything remotely physical. I would also have periods when my back muscles would go into spasm causing acute pain. This has got increasingly worse over they years and I am now in varying degrees of discomfort/pain every day. I have a constant tight feeling around my back and chest and feel as if I am wearing some kind of tight bra/corset. It can sometimes be difficult to breath as taking a deep breath really hurts. I sometimes go to adjust my 'bra' and realise I'm not wearing one!! I have bought numerous types of soft bras over the years but just can't tolerate wearing one.

Over the years I have been practising Pilates and Yoga but I am no longer able to do this due to pain. I have had some treatment from a physiotherapist (when back goes into spasms) but I sometimes feel that her massages are irritating the nerves and making my back more reactive to touch.

I am now seeing a pain consultant and have been prescribed Lidocaine patches to wear at night, only 4 days in so not seeing any results yet.

I was wondering if anyone else is having these experiences so long after surgery and if so, have you been able to get any treatment for this condition? I'd really like to hear from anyone else experiencing this problem.


Thanx

Gill

Comments

  • anothernycgirl
    anothernycgirl Member Posts: 821
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    Hi Gill,

    I'm sorry that you are so uncomfortable. :(

    You don't mention what type of reconstruction you had. I had lat done on one side and I find that side has much more discomfort, and occasional spasms, compared to the other side. Soon after the lat was done, I went to a physical therapist who focused on breast cancer/mastectomy patients. It was a big help. I have considered going back, but concerns over covid has that on the back burner for now.

    I hope you find relief!

  • threetree
    threetree Member Posts: 1,429
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    Gill - I did not have reconstruction and am only 2 years out from surgery (mastectomy), but I have pretty much the same problems you've described, that I'm dealing with. Regarding the pain patches, I was given some by an ER doctor when I went there for chest pain that they determined was muscular and not a heart attack, and I found that they only take the edge of off things and not much more. Additionally, that lidocaine does get into your system, even though it is topical, so they are no long term solution. I'm supposed to see my surgeon sometime this month and this is the big issue I am going to bring up with her - this ongoing and worsening tight band of muscle around my chest and back feeling that just won't go away. I too have found myself attempting to adjust a non-existent "too tight" bra. This is very debilitating and keeps me from doing some things around the house and also some work duties. I'm afraid that if it continues, I might have to quit work altogether. I've been hoping for another 2 or 3 years at least (I'm 68). Just taking pain meds is no solution and doesn't address whatever might be the actual cause.

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi,

    Thanks for replying, sounds like we are both experiencing the same problem. I didn't even realise that this was a thing. Iron bra syndrome or Post Mastectomy Pain Syndrome, although my surgeon hasn't mentioned those terms only what I have researched online. My problems started about 4 years ago (11 years after surgery) and have steadily got worse. Unfortunately, I have had to give up work due to the constant pain. Only just seen a pain consultant as my GP just kept saying 'well. you've had major surgery so you are bound to feel different'. So frustrating and had to push for a referral to my original surgeon who has since referred me to the pain consultant.

    Did you gain any relief from the Lidocaine? Have you tried anything else? Do let me know how you get on with your surgeon.

    Gill

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi,

    Thanks for replying. Sorry, should have mentioned it was an LD flap, which was completed 12 months after mastectomy and had no complications. My surgeon can't explain why I am getting these sensations particularly so long after surgery. I am waiting bone scan and MRI (just incase) but feeling terribly frustrated and my life has been completely flipped on its head!! due to chronic pain.

    I have been having massage by the PT but sometimes I feel as if this aggravates my symptoms as it is so sensitive to touch. Have you tried any other treatments or has the pain subsided now?

    Gill


  • anothernycgirl
    anothernycgirl Member Posts: 821
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    Gill,

    My PT was not massage. That sounds painful!! I was given exercises to do there and repeat some at home. Are you seeing someone who specials in BC surgery patients?

    Any chance you are in NY area? This is who I went to

    . https://www.northwell.edu/find-care/find-a-doctor/...

  • threetree
    threetree Member Posts: 1,429
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    Hi Gill - I'm so sorry for your situation; especially after all these years! I understand that some of these things that show up years later, like this is for you, can be late effects of radiation. You might want to consider that too.

    I found that the lidocaine patch is a short temporary fix - it does not really address the problem and only takes the edge off of the pain. I actually quit using them, but keep a few in reserve "just in case". I'm looking for a cause of this problem, so that a solution can be adequately addressed. To me it seems like the pain meds are just band aid, cover up, and temporary solutions to a real and serious ongoing problem. I'm also not sure that all these stretches and massages are the answer, as some of them seem to aggravate the situation.

    I'll let you know after I talk with my surgeon. Right now I'm just having some difficulty scheduling an appointment. She works between two offices, and the two places don't seem to communicate with one another very well.


  • Gill1312
    Gill1312 Member Posts: 14
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    Hi,

    My PT doesn't specialise in BC patients as my cancer was 15 years ago and I thought this was just a 'bad back' so didn't really link it with my original surgery. I have stopped the PT massage a few weeks ago as I found it too painful and it aggravated the symptoms. I did have a specialist PT post surgery and followed all the advice. My current problems only started a few years ago and the pain specialist I am now seeing believes that this could be due to new nerve growth in the area of the original surgery.

    I live in North Wales, UK, so rather a distance to travel to our doctor !0)) although I wouldn't mind a trip to the big apple right now.

    Gill

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi Threetree,

    I didn't have any radiation treatment following my surgery as mine was early stages. I can understand how that might affect underlying soft tissue though. I haven't felt any benefit from the Lidocaine patches as yet. I wear them overnight for 12 hours, started 7 days ago. Pain consultant wants me to do this for a month as he advises that they may stop the nerves sending pain signals??? we'll see. Hope they work. The next step is capsaicin patches, apparently made from chillies.

    I agree that pain meds are just a band aid but I think the main cause of this pain is nerve damage due to the surgery plus additional nerve growth which has become extremely sensitive and I don't think there will be a specific solution, just pain management. !0(( I go for an MRI on Saturday and am also waiting a bone scan so hoping all is OK.

    Good Luck with your consultatin.

    Gill


  • anna4969
    anna4969 Member Posts: 5
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    Hi Gill,

    I am in the same boat with the tightness. for me though it is mainly under the arm and across the chest. I also have lymphedema on that side and have been through mastectomy, radiation, reconstruction, lymph node transfer etc. This all a good 9 years ago and it is still tight and painful day after day,. For the tightness and the spasms, which as you said are quite painful, I am prescribed flexeril and baclofen(muscle relaxers) initially by my plastic surgeon but now by my neurologist that has taken over this nerve issue. I also occasionally do therapy for myofascial release that breaks up the scar tissue and lessens the tightness and spasms. However, it always returns. Unfortunately, it is now just a part of my life and it stinks. This may sound counterintuitive but when I have a real bad flare I will wear this post surgical bra that was given to me after my mastectomies by my plastic surgeon. I have since bought several more throughout the years from Amazon. Amazon.com: Marena Recovery Adjustable Compression Bra for Post-Op and Surgical Support : Clothing, Shoes & Jewelry It is very comforting to have your whole back and chest covered by this bra with a bit of a compression. I know it doesn't sound like this would help because it sounds like you actually are putting an iron bra on but really it helps me tremendously. It seems to just snug everything up equally, thus that the bc side almost feels more normal with it. Hard to describe. I wish you well with this problem and hope you can find some relief. I know it is misery, plain and simple.

  • LivinLife
    LivinLife Member Posts: 301
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    I "only" had surgery - no rads and no reconstruction. I had this iron bra phenomena in an intense way, as well as the "wad of dollar bills" feeling under my armpits. There is some discussion of these kinds of things in the lymphedema forums you could search for even tho these symptoms are not lymphedema. The lymphedema folks recommended I get an L.T. - licensed lymphedema therapist - to do myofascial release. I also continued related stretching at home- you can see some of these mastectomy exercises on YouTube. The L.T. helped immensely though Gill you're talking about soooo long after surgery and the complication of reconstruction so not sure how that length of time impacts being helped by an L.T. I still have some iron bra though much less and manageable. The wad of bills feeling is gone most days - every now and then I think I can feel some of it - more like tightness now. I've heard too if one doesn't continue things like the doorway stretches (a forearm on each side of the door frame, body in the middle, one leg stretched outward with foot resting on the floor, etc.) the tightness can recur at any point.....

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi there and love the user name.

    Sorry to hear about your BC surgery (don't know about the 'only') I remember it as somewhat traumatic and almost didn't bother with the recon. It's just rotten feeling that having come through BC etc. that we are now stuck with these ongoing issues. It's taken me a long time for health professionals to even listen to me. The normal narrative from my GP is 'well you've been through major surgery so it's to be expected'. It's only after almost 4 years that I am getting anywhere with treatment. I will def. have a read of the lymphedema section as it sounds like it could provide some suggestions.

    Take care

    Gill

  • 2002chickadee
    2002chickadee Member Posts: 79
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    Hi, so sorry to hear this terrible pain is affecting you so many years later. Have you looked into a nerve block injection? I believe a pain specialist could discuss this with you, it's not uncommon for post mastectomy pain and is meant to help with irritated nerves, which sounds like may be at least part of your problem.

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi Chickadee,

    Thank you for your reply.

    My pain specialist has started me on Lidocaine patches as the first approach but has mentioned that a nerve block might be necessary. I think he has a whole garrison of ammunition but is starting with the 'small guns'. Just wish he'd blast it to hell and back!

  • blondie45
    blondie45 Member Posts: 82
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    I am certain I have this. Had unilateral mastectomy in 2009, the other side and DIEP reconstruction in 2011. I have pretty much had the iron bra feeling and horrific tight stomach since the surgeries. It just seemed to have gotten worse over the years. I have not found anything so far that has helped at all.

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi Blondie45,

    Thanks for your reply and sorry to hear that you are also experiencing this horrible pain/tightness etc. If you haven't yet approached your GP then I think you should and request a referral to a pain specialist. Don't let them fob you off and tell you that it is to be expected following major surgery. There is a lot of research/evidence to show that women who suffer with post mastectomy pain syndrome just accept it and don't seek help from their GP. I am determined to find a solution to this as it is ruining my life (given up work, no fitness, no hobbies, no dog walking, depression etc. etc.) and my retirement plans have gone completely out of the window.

    I will share my journey and let you all know if I discover anything that truly helps.

    Gill

  • threetree
    threetree Member Posts: 1,429
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    Gill - I had told you I would let you know what my surgeon said. Well, I just saw her this morning, and she really didn't say much. I usually find her real helpful in that she has a "take" and comments that are insightful most of the time. This time she just said things that amounted to "curious", and "how interesting" and then gave me a referral to OT and PT, as I wanted. I'd like to see what they can do first, because I am trying to avoid the "painkillers everyday route". It seems if they could pinpoint an actual cause, a solution would be easier to come up with. This, "well you had major surgery ...." I agree is just off putting and not particularly helpful, and I think the "so just take some Tylenol" is the same thing. They say it's nerves, so then they just think painkillers. I'm hoping that maybe some posture changes, stretching exercises, etc. might help with the muscles, and therefore the nerves. I hope that PT, especially has some answers.


  • abigailj
    abigailj Member Posts: 101
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    Hi All - I initially had really bad pain after my BMX with immediate DIEP recon in June 2020. Lidocaine patches didn’t help. Neither did gabapentin, although some women reported they found it helpful for nerve pain. I went to a pain specialist MD and she prescribed a topical cream with an opioid in it (15% ketamine and also 15% lidocaine) but reassured me it would not get me stoned. I had to get it from a compounding pharmacy and insurance didn’t cover but it was only like $50. I used it for several weeks, maybe 7 or 8 and halfway through started PT. It really helped and although I have very minor twinges if I stretch in certain ways, am almost 100%. I hope one or a combo of these can be helpful to you too.

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi there,

    Can’t believe that I actually went through with this as I was terrified but had the nerve block procedure 2 days ago. Feeling a bit sore at the point of needle entry at the moment. Other than that not noticing anything. Hoping it kicks in soon!! Will post updates

  • mightlybird01
    mightlybird01 Member Posts: 161
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    Gill, I don't know if your reconstruction also includes an implant, but have you heard of "breast implant illness"?

    Apparently, this can happen years later, when your body develops an allergic reaction.

    https://www.breastcancer.org/treatment/surgery/rec...



  • Gill1312
    Gill1312 Member Posts: 14
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    Hi there Mightlybird!

    Thank you for your post and comments. Yes, I had LD flap with implant. I have been doing a bit of reading on this subject but not sure 🤔 I know I have a number of symptoms but as there isn’t a diagnostic test it’s difficult to know. I would hate to undergo further surgery to remove the implant only to discover no improvement. Is this something you have experienced? Or anyone else had this problem ??

    Gil

  • mightlybird01
    mightlybird01 Member Posts: 161
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    Hi Gill, no, I went unilaterally flat, but it was because of stories such as yours and others I have read why I decided to that. So I know they are happening. But I don't know any more than that.

    Good lucking figuring it out!

  • minustwo
    minustwo Member Posts: 13,156
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    Gill - Hopefully you will be able to get to a certified/trained Lymphadema PT. My LE is breast & truncal so it definitely causes some of the symptoms you are describing. We are at risk of developing LE anytime in our lives no matter how long after surgery.]

    Here's a reputable site with more details. http://www.stepup-speakout.org/

  • Gill1312
    Gill1312 Member Posts: 14
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    Thank you MinusTwo for your advice. I will certainly look a bit deeper into this, I really didn’t think that LE could appear so late after surgery and cause some of these symptoms. I am due to see a PT early January so will ask for a referral to specialist LE PT.

    Just wondering about your own LE is it obvious? to look at I mean? Do you have problems with your arm? I don’t. But I have always had a bit of swelling on my chest wall and underarm but had always thought that it was to do with the LD flap recon🤷🏼♀️.

    It’s all very complex isn’t it!!

    Gill

    Happy Holiday to everyone 🧑🎄🎄

    X

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi again,

    I also wanted to ask you if you are having similar symptoms as me?

    Do you get this tight band feeling around your chest? Not worn a bra for nearly two years, so painful!!

    Gill


  • minustwo
    minustwo Member Posts: 13,156
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    Gill - Edited to say - I'm 10 years out from my original mastectomy.

    No, I don't have the same symptoms. I switched Yoga for Chair Yoga and Pilates for more miild stretching - think Silver Sneakers. But I have more pain when I don't continue to stretch regularly.

    Yes, LE can present even 25 years later. My swelling & pain & tightness are generally in the right chest & breast & arm pit area where I had ALND surgery in 2013 for a recurrence. Luckily I was watching for LE and my radiation oncologist diagnosed & immediately sent me for LEPT. No - it's not very obvious to the naked eye.

    But I work very diligently to make sure it doesn't spread down my arm (s) or get worse. I wear sleeves & gauntlets when I fly or do other repetitive exercise that might be a trigger. I wear only this compression bra 24/7. It's really very comfortable. https://www.wearease.com/products/sydney-bra?varia... I do manual de-compression, but probably not as often as I should. I haven't seen a therapist since 2019, but have an appointment in January for an evaluation, re-measurement and refresher on things I should be doing.

    And I do have regular yearly comprehensive blood work & an ultrasound every two years to make sure my implants are intact.

    All that said, I'm not a doctor & this may have nothing to do with what's causing your problems. I hope your docs can figure it out.

  • Gill1312
    Gill1312 Member Posts: 14
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    Hi Minus Two and others,

    Well I've just had a rather difficult 24 hours and just wondering if anyone else has experienced this following the 'ironbra' symptoms. I woke at 3am to find a lot of fluid had pooled on my chest wall and underarm. My husband insisted that I visit A&E (UK equivalent of ER). Due to Covid 19 issues the waiting time was 10 hours so advised to go home and see my GP in the morning. Managed to see her this afternoon and she thinks my implant has ruptured. Now trying to arrange an ultrasound but could take a few weeks.

    I'm beginning to wonder if the 'ironbra' symptoms could have been caused by leakage over a period of time. I know some people have described that feeling of having something wedged under your arm and I am def experiencing that now.

    Any thoughts? or similar experiences?

    Gill

  • mightlybird01
    mightlybird01 Member Posts: 161
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    Oh no, I am so sorry to hear. But maybe you have finally your answer. I hope you can get that Ultrasound much sooner than a few weeks.

    I think the answer to your question is yes, it could be. Here is what I found:

    https://www.caepv.org/what-to-do-when-breast-impla...

    Can You Leave A Ruptured Implant In?

    The silicone can leak and invade breast tissue and the chest wall if left in ruptured implants. You will likely develop scar tissue as a result of the leak, which is your body's natural response. It can be irritating and may also cause the implant to feel tight and rigid.


    Can you contact your breast surgeon? I think this would be the best person to approach.




  • Gill1312
    Gill1312 Member Posts: 14
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    Hi Mightlybird!!

    I’ve been trying to get hold of breast surgeon all day. Also left a voicemail for her secretary but not got back to me yet. Thank you for the link you forwarded. Definitely something has been happening over the past few years. I think this could be the reason for my brain fog and general fatigue, aches and pains. Thought it was the menopause🤷🏼♀️

    I feel like I just want this out!!! Anyone else had implant removed? Just wondering what it will look like. Don’t think I’ll bother with replacement.

    Gil

  • mightlybird01
    mightlybird01 Member Posts: 161
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    I have been reading up on implants a little more and it seems they generally seem to last for 10 years and after that are considered worn out (i.e. 50% of them seem to have failed by that 10 year mark). So your timeline is just about right. Replacing them when they are intact seems a very minor surgery, but if they have ruptured it is probably quite different and so specific for each person I imagine it would be difficult to compare cases. But for now, you don't really know what exactly has happened and so until you have all the information I guess there is nothing you can do but wait.

    Hope you get a hold of a breast surgeon soon.

  • patholady
    patholady Member Posts: 1
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    I had a double mastectomy with an aesthetic flat closure 6 months ago and have had iron bra syndrome since the first day. I thought I would feel free without my breasts, but I feel more constricted than ever. How ironic! The plastic surgeon just keeps telling me to massage it. I see by your comments that it is very difficult to get any answers or any relief. I did find that wearing a bra with prosthetics "tricks" my brain into ignoring the feeling for a time. I thank all of you brave people for sharing your stories and your insights. If I find anything else that works I will share too.