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Latissimus dorsi flap reconstruction can be DEVASTATING !!!

Chesterton
Chesterton Member Posts: 1

I CURSE the day that I decided to have breast reconstruction using the latissimus dorsi flap technique.  I am three months out from the surgery, and have not been able to breath, eat, sleep properly, make love to my husband (we just had our first wedding anniversary, sans any physical intimacy), etc. due to extreme constriction caused by the flaps (as well as body pain, explained below).  The constiction is akin to a boa constrictor squeezing the breath out of me 24/7...  and, despite intense, regular physical therapy, the flaps continue to tighten.  I am scheduled for emergency surgery next week.  The flaps will be "snipped into" at several locations above and below in an attempt to help relieve the constriction, and the motor nerves in each flap will be cut (resulting in a permanent alteration -- just as the flaps are a permanent alteration).  NO ONE warned me of the possibility of any constiction at all, or the persistent and increasing pain at all of the incision sites, the sites where the six drainage bulbs were placed, the entire "band" of constriction, and the deformed "masses" of tissue/implants that bear no resemblance at all to female breasts.  Also, no one warned me that it would feel like I had a pork tenderloin implanted below each armpit that would displace my arms from their normal place at my respective sides; I walk around with arms bowed outward like a gorilla.  The constriction is so bad that I walk hunched over like a very old lady with severe osteoporosis.  I am only in my forties.  The only clothing that fits are XL and XXL dresses (no pants/jeans/shorts, etc.) from maternity stores and men's XXL sweatpants and T-shirts.  I was a perfect size 6 for decades.  I should also mention that the constriction causes my stomach to bubble out in front of me -- not because I gained any significant weight...  in fact, it is difficult to eat and I have constant heartburn.

Two months following my emergency double mastectomy in February of this year I felt GREAT!!!  My cancer has been (hopefully) removed, my outlook on life was refreshed and renewed, and my new husband and I were looking forward to a wonderful future together.  We even bought our dream home.  I was wearing prostheses, but it was no big deal -- my husband loves me, not my boobs, and nobody could tell that my "boobs" weren't my own unless I chose to tell them.

Now I cannot even pack for the move into our new home, which we must complete by October 31st of this year.

I wish I could travel back in time and have my latissimus dorsi muscles back in place where God means them to be.  NO DEGREE OF COSMETIC IMPROVEMENT IS WORTH THIS KIND OF SUFFERING.  THE MOST IMPORTANT PART OF YOU IS WHAT'S ON THE INSIDE, NOT THE OUTSIDE.


Note:  I had/am having my surgeries (both the double mastectomy and reconstructive) performed at Chicago-land's and Illinois' number one-rated hospital for breast cancer (2012/2013 US News & World Report), not to mention one of this nations top six breast cancer hospitals.  --As I have found out, reputation means NOTHING -- only results count.

Comments

  • rowan47
    rowan47 Member Posts: 64
    edited September 2013

    Dear Chesterton, I am so very very sorry that you are going through this :( I can only imagine the pain, frustration and despair that you must be feeling...are you able to deconstruct?? I, too, had BMX but chose not to reconstruct. I did not want further surgeries or the risk of complications. I really hope that things start to get better for you soon. You are so much more than a pair of boobs. Wishing you all the very best x

  • Ariom
    Ariom Member Posts: 4,027
    edited September 2013

    Chesterton, I am so terribly sorrry to hear what you have been through, and indeed still to go though, to hopefully, relieve the pain you describe.

    I have no idea why all the possibil outcomes aren't discussed before these surgeries are undertaken.

    There are so many others, just like you joining these boards after similar negative outcomes.

    There are also women deconstructing, and others deciding to go flat and fabulous like Rowan.

    I had a UMX, and didn't feel reconstruction was for me. I have several different prosthesis, and even go half flat at times.

    You are so right about what's on the inside being what's important. I know I was never defined by my breasts.

    I wish you and your new husband all the very best for the future, and hope you get relief, and a good result from your next procedure.

    Take care and let us know how you are doing!

  • BellaFriday
    BellaFriday Member Posts: 5
    edited October 2013

    Chesterton,

    OMG!  I am so sorry...I was thinking @ using that hospital too but went with the Rush Copley in Aurora since it was close to home and easy for my husband to get to from our house (he had to go back/forth to let the dog out).

    I hope your emergency surgery went well and you have some relief.  Post when you can about how you are doing and if the surgery has helped you!  My thoughts are with you!

  • Gracers55
    Gracers55 Member Posts: 23
    edited October 2013


    Chesterton,


    Thank you so much for this post! I was a candidate for this procedure, and passed it up and had a lumpectomy+RT rather than a mastectomy. I keep questioning myself, wondering if I made the right decision. I fear I may end up with a mastectomy down the road anyway. Emotionally, I'm not in a state to go flat so would seek reconstruction. But after RT the options are difficult and since I don't have fat in the right locations, would have ended up with the Lat transfer plus implants. A mess, I do believe. My PS surgeon seemed to be communicating to me that it was not a big deal. I have physician friends who advised me to ask my general surgeon how patients who had had the procedure/s felt after. She also advised against it. In part because for my stage lumpectomy+RT (I also had chemo and am continuing with Herceptin) has the same outcome as mastectomy. I wish you all the luck in the world. I think you are lucky to have a guy who appreciates you. You deserve the best!


    Gracers

  • Ventro1234
    Ventro1234 Member Posts: 2
    edited May 2021

    I couldn’t agree more!

    I’ve just seen your post from 2013 and thought I was the only one suffering after having had the latissimus dorsi flap reconstruction!

    Cher once sang “If I could turn back time🎵“ and I’ve had these thoughts too many times since my 9 hour surgery in October 2020.

    Biggest mistake I’ve ever done and if anyone asked me whether to go ahead with this type of breast reconstruction I would tell them a resounding NO !!


    After going through a double mastectomy (and 25 fluid aspirations afterwards due to one drainage tube being removed too early),and chemotherapy, home with 6 drainage tubes attached, daily visits from Community Nurses to change dressings, etc etc etc, I decided I wanted to ‘go natural’ with my breast reconstruction. I’d had so many toxins in my body with chemotherapy I just wanted something natural and long-lasting.
    I could have had the inserts which are pumped up every 2 weeks for about 6 months, but I thought the latissimus method would be better for me.

    I was told about the 9 hour surgery, the 6 weeks recovery afterwards, the weekly hospital appointments until all 6 drainage tubes were out, the discomfort, etc but I was never told that 7 months later I would still have pain, awful tightness across my back, long lumps of skin jutting out where I had been sewn together, and JUST LIKE YOU going from a Size 10 to a Size 14-16!!

    When I told my surgeon about my pain and discomfort, he told me “I’ve done hundreds of latissimus dorsi flap reconstructions and none have your pain and discomfort”. Can you imagine how this made me feel! Was he suggesting I was lying? Was he inferring I was being difficult? All of this and more and it was the last thing I needed to hear as he made me feel as though I was his only patient who had problems.

    To then read your post - it was a huge HALLELUJAH for me! Someone else has gone through the same as me! It was liberating and comforting and, even though I’m still in pain, your post has helped me enormously.

    Thankyou so much for sharing and I can honestly say “I know exactly what you went through and are possibly still going through “?

    Are you still in pain?

    Have you had other surgery to ‘flatten down’ those lumps and bumps? If so, has it made any difference?

    Have you lost the bloated stomach? The bloated stomach has been so trying for me to deal with, as just like you I was a smaller size and now have to wear loose tops etc to hide my ‘pregnant’ stomach. As if it’s not enough to deal with the postoperative pain and disfigured body without having to deal with other body image thoughts.

    I know it doesn’t sound like it here, with all my whining, but I am actually a super positive person, despite all I’ve been through. I also deal with lymphoedema and underarms that are now flapping etc but they are the least of my problems. It has just been so good to vent to you (and anyone else who may have experienced what we have) , write it all down and know that I’M NOT ALONE




  • Bonnie7
    Bonnie7 Member Posts: 16
    edited May 2021

    I have to add to the above, I have had nothing but trouble since my Lat Dorsi in 2014, honestly I cannot believe I was excited and actually looking forward to this surgery. WHAT A MISTAKE....seriously girls, put the word out there please! This is not a surgery I could recommend to anyone, I was 10 years cancer free prior to the Lat Dorsi, it seems to have stirred up a hornets nest (not for everyone I appreciate!) I have malignancy in my neck, confirmed today, seeing a Specialist in Sydney on Monday. Truly the biggest regret of my life to date!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640
    edited May 2021

    Bonnie7 and ventro,

    The op started this thread in 2013. She made the initial post and never posted again.