LD Flap long-term effects - share your experience

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  • plripl
    plripl Member Posts: 2
    edited January 2012

    I had a bilateral mastectomy at age 26 for breast cancer with the lats flap reconstruction and have consistent, unrelenting pain for the past 7 plus years.  I had complications following surgery- a hematoma in my back- but the pain started pretty much right away, with chronic, debilitating spasms in the upper and lower back for years (I ended up going on long term disability for several years, it was so bad).  I did have a lung surgery that went through my back a year after the original surgery--which certainly did not help matters- but the pain was there beforehand.  I should note that I am a slender person with not a ton of upper body strength so I am not sure if that is why my muscles went haywire on me.

     I go for PT every week or every week, focusing on myofascial release (now we are focusing on releasing the nerve since it may be the nerve that is causing the muscles to be so tight) and core strengthening, still seven years later.  My pain is exacerbated by really sitting/standing for any extended length of time (from 30 minutes + depending on what I might have done the day before) so I seesaw in and out of pain.  It has gotten gradually better over the course of many years and  today I left with thoracic pain/tightness that goes around to the front ribcage area.  

     Has anyone else experienced this level of pain from the surgery?  Any advice on other things I should be doing?  Ultimately heat and rest (laying) help the most but too much rest can be as equally bad as too much sitting up (I am back to working full time).

     Thanks- Patricia 

  • lulubee
    lulubee Member Posts: 1,493
    edited January 2012

    I have experienced most of the problems mentioned here.   

    Some days I think the whole thing was like a Faustian bargain. I have breasts that will always look young, but they have made me feel prematurely old -- limited, weakened, and somewhat dependent on others.

    I used to be so strong that I could spin children over my head for fun, and now I can't even clean my kitchen without help or a lot of Advil.

  • donnajayne
    donnajayne Member Posts: 1
    edited August 2012

    I was diagnosed in Mar 2007, had Rt Lumpectomy, lymphnode removal, 2 weeks later Rt mastectomy, chemo, radiotherapy, in 2009 I had hysterectomy, March 2011 Lt mastectomy & bilateral LD flaps, Mar 2012, implant on Rt.

    I still suffer pain on all of the scar, drop things, cant stand for anything over 5 or 10 mins.  I cant get in or out of the bath myself, have trouble doing any household chores, & feel so helpless at times, I was also strong as I used to be a nurse.

    Costochondritis was diagnosed on the chest wall, I would never have had this done, only I was pursuaded by breast care nurses, saying it was wonderful, & few people had any pain afterwards.

    So yes another that feel s all the things you mention.

    Hope we all feel better soon, & things improve.

  • mermaidjls
    mermaidjls Member Posts: 5
    edited April 2013

    I was diagnosed with invasive ductile carcinoma in August 2006. ER+, PR+ and HER2+. Mastectomy and beginning of lat flap surgery September 2006.  My plastic surgeon convinced me that the lat flap surgery was the best option for me.  I was not told of all the complications, pain and life long issues I would face.

    Post surgery, the tissue expander I had for a year was extremely and constantly painful.  It was large and poked into my side and sternum.  I couldn't sleep on my left side.  After the expander was removed and the implant installed, I still had a tremendous amount of pain.  My PC didn't care.

    It does not look or feel any thing like a breast. (I covered it with a beautiful lotus blossom tattoo.) I do not date and only medical professionals see my breasts. Being sexual multilated has helped me make the decision to walk in this crappy life alone. I simply couldn't bear the horror of a man seeing me this way. I have no sexual desire nor a desire for a man in my life.

    I was told only rock climbers would miss the back muscle and that is totally untrue. I work hard in my yard, home and at work.  I have to lift heavy boxes.  I have to do my own trimming and cutting down of trees using a chain saw.  I enjoy that type of work.  It balances the work I do for a living which is sitting behind a computer most of the day or standing in front of a class room teaching all day.  I suppose if you sit around eating bon bons all day while painting your toes nails, you won't miss the back muscle.

    Every time I lift even the lightest of things, I will suffer from muscle spasms.  The tightness at times is so great I have to lay back with a heating pad and take a muscle relaxer with over the counter pain meds to get any relief.  I have a long scar on my back that frequently breaks out with shingles which adds to the pain. (The shingles I assume from the tissue being a weak area being an easy place to attack).

    I wear a light but undersized sports bra most of the time because my right breast is bigger than my reconstructed left breast and it will strap down my right so it looks a little more even.  Also the sports bra isn't very tight so it doesn't cause too much pain for my left breast. But sometimes I have to wear a regular bra because of the cut of some of my clothes.  The pain gradually increases throughout the day and by the end of the day I am in tears because I can't take the pain anymore.

    I complain to my doctor about the pain, she glosses over it and tells me to keep taking tylenol.  I can't take as much tylenol as I need because I don't want liver damage. There are meds that can relief the pain, but I guess my doc doesn't want to give them to me. I don't abuse drugs so I don't know why. Why have drugs that can improve someone's quality of life if you aren't going to prescribe them?  So I suffer with constant, overwhelming pain.  And when I get shingles, it's so much worse. And this is on top of all the other pain I live with because of the side effects of chemo.  Joint damage and nerve damage.

    Six years out and they call me 'cured' and a 'survivor'.  Both words mean nothing to me when the quality of life has dwindles to nothing.  One day I will get tired of all the pain.

    I would not recommend a lat flap reconstruction, that is unless you are the toe painting, bon bon eating type.

  • Linda54
    Linda54 Member Posts: 2,689
    edited April 2013

    mermaid

    I am so very sorry for the suffering you are living with because of this surgery.  We are all different. If you have been on this site for very long I am sure you have read that statement many times.  Most ladies that come here are looking for solutions or support...or just to have someone to talk to. People who have never been through what we have experienced does not understand.

    With that said I have to say that there are women who have had the LD flap recon and are very happy with their outcome.  I would not want someone who's only choice is the LD flap to be frightened by your post.  Yes, you have the right to post your pain and suffering brought on by this surgery and we need to know that's a possibility with this LD flap as with any of the reconstruction surgeries.  It makes me mad that doctors are not trained in the full effects of all recon surgeries. They are trained to do the recon but not educated on what can happen down the road. 

    My advice to ladies who are facing reconstruction surgery to do your research. You cannot depend on your doctor to tell you everything...because he/she does not know!!!  And most of them do not care after they rebuild your boobs....they just want to put mounds back on your chest.

    I would love to have autologous tissue flaps (boobs made from all your own tissue, nothing foreign in the body) but it was not to be so my only choices were to stay flat or a bi-lat LD flap (I had previous rads). I wanted breast so I had the LD flaps.  I had a good experience. The problem I have is the tightness around the chest like I have on a tight bra all the time...even when I am braless. It has been 5 yrs since my initial surgery. Either it has gotten better or I just don't notice it as much.  I do everything that I done before my surgery without problems.  I don't say this to make you feel bad or to lessen your pain...just to let others know that there's ladies out there who've had good results with this surgery.  Most of the people who come to discussion sites like this are looking for help or are having problems.  I joined because I was looking for advice.  There's women in my community who had the same surgery as me and the same doctor and they haven't experienced any problems...not even the tightness that I had/have.  These women are not on BC.org.

    Have you went for a second opinion?...if so, what did this doctor tell you?  Have you thought about having the implant/s removed to see if that helps?....

    Again, I am so very sorry for your pain. Please seek help for your wellbeing.

  • msdebbieot13
    msdebbieot13 Member Posts: 9
    edited June 2013

    Late jumping in here too..gee if I get going?!! lol have been 'living with it' for many (18) yrs and didnt even have anyone to relate to..this is a God send to me, even at this late date but as Im getting rid of the big damn hockey puck in 2 wks..lol thats a better description..ooo Id like to vent it all here but..maybe another time, and you dont have to read my rant..lol will make me feel better tho..soo tightness, itching, without relief lol, skin PlASTERED to ribs under scar, rolled shoulder, reduced strength, scar tissue lump ITHINK at drain site, retracts underarmpit, used to jump when I coughed sneezed etc..and you are so right, they DONT know and seem not to care to investigate and understand what they are doing on a regular, DAILY basis..oo Id better stop here for now, Ill add more later, then Ill feel better..good thing to do w upcoming surgery..PURGE IT!! lol we'll celebrate later too..thnx for listening..

  • Redbow
    Redbow Member Posts: 1
    edited March 2014

    I had chest reconstruction right side (without implant) 4,5 years ago. My LD is very
    strong. The report says they cut the nerve during operation, but one way or another my nerve is working fine. I feel my LD all day long, cause when you move can't stop the nerve signaling (and
    the LD contracting). And when I sneeze it feels like 'struck by lightning' from
    shoulder to belly button. Pfff! My experience is: power sport and stress worsens, relaxing and stretching gives relieve.

    I have an iron bra as well, but I think I got that from radiotherapy.

    I have problems in my legs: I have fluid around my ankles. I had no diagnose
    (for sure no edema and my veins are perfect). I'm always (except at night) wearing
    compression stockings. It got worse and worse: I can stand on my feet for about 3 minutes and then I have to move. I have to sit with my legs 'up'. When I walk at good pace, it's fine, my muscles are pumping the fluid up. But walking slowly is terrible too.

    And then I found an osteopath and
    he diagnosed me: my LD flap is causing tension on the diaphragm, this has an
    impact on the lymphatic vessel passing through the diaphragm. That's consistent with my weekly experience at my physiotherapist: when she 'works' on my right side/LD I feel movement in my legs. So I'm preparing myself: I want my nerve thoracodorsalis cut!

    A lot of doctors tell me 'we've never seen this before'. In the beginning I got angry, but now I think: yes, I'm very special!Winking

    I post this message: perhaps there are women who have the same problems in their legs. I will post again after my operation.

  • Linda54
    Linda54 Member Posts: 2,689
    edited October 2014


    bumping for 2Tabbies

  • Linda54
    Linda54 Member Posts: 2,689
    edited November 2016

    I haven't posted on BCO in a very long time. I thought it was time for an update on this topic. I was one of the fortunate ones who didn't have problems with the latissimus dorsi flap reconstruction. It's been 8.5 years since my bi-lateral mastectomy with immediate reconstruction. The tightness (iron bra) has subsided but I still feel where the lat muscles were moved around but it's not bothersome. I have done very well with this type of reconstruction. So far I have no long-term effects from my muscles being moved. I have no complaints.

  • Fezfem
    Fezfem Member Posts: 1
    edited June 2018

    I had a 'Latissimus dorsi myocutaneous reconstruction

    you have written about in late 2007. In a few months I developed a severe infection and

    had to have the reconstruction reversed. I decided to leave it, not continue due to the risk of further staph infection. However the muscles were not replaced. Just tidied up. No one mentioned physio or thought about after affects and repercussions of what would happen to my mobility.

    I have an added complication. I have left sided hemipresis since birth which has left me with considerable weakness of my left side, virtually one handed. I am an artist who rely on my right hand constantly.

    Over the last years since the operation I have had at times quite severe thoracic pain after hours of working and had to stop working. I'm having trouble with my right shoulder and C6/C7 nerve. pain. I did not have this before the op.

    This past week I have suddenly developed right shoulder blade pain that has become unbearable. Almost like nerve pain, deep, dull and unending for hours. I am intolerant to opiates, to Tramadol and some anti inflammatories. This is why I have to do something. I'm not sure what to do and need to ask advice. If you have any ideas? I am happy to be reviewed and used as a 'respectful case study' if it would help me get answers. My art work is my life and if I have to stop because my back is deteriorating, I would be devastated. I am in agony.

  • shannonlee66
    shannonlee66 Member Posts: 22
    edited August 2018

    I am so sorry to hear this, Fezfem. I jump on the boards about every 3-6 months searching for someone who has found relief from lat flap surgery. I've had chronic pain for five years, so I understand.

    I think your surgeon did you a grave disservice when he/she performed the lat flap because of your hemipresis. However, if the pain is recent, it should be easier to get under control. I don't know if you have a rolfer or massage therapist nearby. Both have helped me tremendously. Unfortunately, the pain returns, but it does help. Do you exercise or practice yoga? Acupuncture was also amazing. I could feel the pain evaporate, but again, it only lasted for a day or so. A heating pad at night also helps.

    I hope you find some relief!

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