LD Flap long-term effects - share your experience

I'm sorry I can't chime in, but I just wanted to let you know the Lat flap has been used as a reconstruction method for about a century, so the lack of studies isn't related to it being new. 

Sorry you're having such a hard time with it. I'm glad you're posting here though. I think people downplay the negative side effects of the surgery and it's good for others to know what you're going through.

Best of luck.

-Brenda

Day

In 3 months I will have my 3rd anniv of my Bi-lat MX and LD flap recon.  I must say that for a long while after my surgery I was experiencing most of the things you mentioned. You are just a little over a year from your 1st anniv so I can understand you still experiencing those things.

Maybe it will give you some hope if I say that "it does get better with time"....still if I use my arms to lift all my weight my chest tightens up.  I roll over in bed without any problems...I use to have to sit up to turn over in bed.  I do all the things I did before my surgery and more.  I run, bike and do strength training.  I lift more weight now than I did before my surgery. 

I am one of those that have the "Iron Bra" syndrome.  Sometimes I barely notice it and then like today it is tight.  I went two days without doing my stretches so I guess that might have something to do with my chest feeling tighter today.

It has been a long time since I have tried doing pushups but I just got in the floor and tried it so I could tell you how it felt and by golly I can do pushups....woohoo...I never liked doing them though..

Doctors do not tell you everything.  I thought only a small area of the muscle was gonna be taken...not all of it....it was not until "after" my surgery that I learned that all of it was taken for the recon.  I wonder too about the long term effects of not having those muscles in my back.  What will I look like when I get real old.  I will continue to do strength training to keep the rest of my muscles strong so maybe things will work out OK....I don't know if my workouts is what has helped me do well with this surgery but I plan to continue to keep my body strong.

I do wish I had taken it slow and not jumped so quick into surgery. I had DCIS so I had time to do research but when you hear the word "cancer" you just want it over and done.  I had a previous rad side so I was afraid that not doing the LD would cause problems for that side. I think if I could do it again and know what I know now I would have given my rad side a chance without the LD even if it meant having an extra surgery because of possible complications. Also I was under the impression that I did not have enough fat on my body to do any of the other surgeries using your own tissue instead of implants.  I know different now.  I might not get a C cup...I probably could have gotten a large A or small B and that would have been fine with me.... Like someone said before "the LD flap is irreversible"...can never go back.

I learned so much from this discussion board and all the wonderful ladies here.  I wish I had found this site before my surgery. I don't know if it would have changed things but it might have.

I am OK with my recon and very thankful that I did not have any problems with any of my surgeries and I have a pleasing cosmetic result but I am like you, wondering what the long term effects are.

I do hope I have helped you somewhat and have given you some hope that the things you are experiencing are normal and will get better. I do remember last spring (2 yr anniv) I was able to crank our gas leaf blower and I was thrilled.....it takes time.

edited to add: By no means am I saying that the LD surgery is without complications.  I do realize that there are some ladies who had the LD surgery for several years and are still experiencing problems.  The LD or any other recon are not perfect. Everyone is different in how they react.

bumping

Day- Thank you for starting this thread. I am having a lot of the same things going on as you. I just passed my 1 year completion of surgeries. Skin sparing bi-mx with lat flaps on 09/11/10, hysterectomy on 11/16/10, and revisions on 1/6/10. I am very peased with the cosmetic result of this surgery, but have been very frustrated with the physical results. When I went to my PS the first time he asked me what I wanted out of surgery and what I didn't want. I told him I didn't want the lat flap because of what I had read on here about the tightness and such. I do have to say that Linda54 was like the hero of lat flaps! She made it look glamorous. Because of prior surgeries, I was not eligible for tram or DIEP and my PS really downplayed my doubts about lat flap so I went for it. I think we just look for somebody at that scary time to reassure us. I dealt with a seroma in my back from the time of the first surgery in Sept. until revisions in January. I kept asking my PS what I could do about the tightness and he really downplayed it. I got a script from my BS for PT. It did help loosen me up some for awhile, but as you said, with this colder weather it is very tight and bothersome now. I try to have my girls massage me as often as possible. I know Linda54 has the right idea of stretches every day, but I was not told ahead of time that I would have to live the rest of my life like this. I even spoke to my PS about being more honest and sympathetic to patients with this surgery. He is only thrilled with the cosmetic result, not the loss of quality of life. I think that more people who are having this surgery need to know the true picture of what they may be getting into. Good luck in pursuing PT and hopefully feeling better.

hallsnj5

Sorry for the troubles you are having.  There are no reconstruction surgeries that are glamorous.  I have never portrayed the Lat flap to be "glamorous".  We all are different.  I have stated, honestly as I can, the good and the bad of my experience with the Lat flap.  It seems like the ladies who have had a bad experience are the only ones that continue to be on this site but if someone is not having problems then they just go away.  I have stayed around because I thought I was helping but now I think that maybe I should just go away because I get beaten down for talking about my positive experience with the lat flap.  As far as getting the true picture of this surgery...that is exactly what I have been doing as far as MY experience.  Sometimes your overall health can affect the outcome of surgeries.  I do not drink alcohol nor do I smoke..I watch what I eat and exercise and do strength training. I am not overweight.  I got back into my exercise as soon as I could. I do think the healthier you are going into surgery can make a huge difference. Like I told Day, it takes time to get back to feeling normal again...but it will be a new kind of normal.  You are around 1.5 yrs out..you need to give it more time.

I am also irritated at doctors for not telling the whole truth.  I am beginning to wonder if they even know the "whole" truth about the surgeries they do. You are so right that the doctors seem to only care about the cosmetic look of their "work" and not what we encounter after the surgery.  That is the way my PS was.  He was thrilled with his handy work but when I talked to him about the tightness it was like no big deal.  I had to ask him several times to give me a script for PT. 

 We have talked on these boards about our doctors not being up front with the after effects of these surgeries.  Also the doctors do not give us all our options, only they tell us of the surgeries they perform.  It is up to us to do research.  The best way to do this is to make a list of the positive things and a list of the negative things of the surgery your PS has recommended for you and then take that list and make your decision from there.  Never ever look at what one person has said about their positive or negative experience.  Your post sounds like you are blaming me for your decision to have the lat flap.  That is so unfair.

Good luck to all the ladies on BC.org....I am outta here.

edited to add after Day posted.....thanks Day for not blaming me....

Yes, Day thank you so much for this thread.

I was blown away when my PS just assumed I knew I would require the Lat Flap after having Rads. My margin was only 1mm on the chest wall, so I had already had the Bi-lat MX and expander's before the path report came back and they recommended rads. I had a horseback riding fall in 2000, which required laparoscopic thoracotomy and chest tube. I will never forget the pain of cutting into the muscle and had many nerve blocks afterwards (which were very helpful with pain management, more so than Percocets.) I am a swimmer and don't want to go this route, NOR do I feel comfortable asking for the time off for recuperation.

My PS has agreed to try the implants first, and I learned about this route from my Sisters on this board. I know I may be facing the Lat Flap in the future if I should develop pain etc...but just cannot gear up for any more at this time.

I'm am sorry for your struggles, and understand very well the nerve pain and the repercussions of cutting into muscle. I did swim for my therapy after the thoracotomy, but was also blessed that it was done laparoscopically. Please keep us posted on your progress, and I am willing to share my upcoming experience for comparison if it will help anyone else. My new boobs arrive on April 6th after 18 months with my dear friends TE one and two.

Best Wishes to you Day, and all in making their individual decisions.

traci

Hello Ladies.  It has been a year and half since I had my BMX with Lat Flaps and I can honestly say I don't have too many problems.  Occasionally I have some tightness in my back along the latissimus dorsi site, however it's relieved by stretching and my massage pillow.  The other thing I've noticed is that I cannot do a pushup without all the muscles in my chest tightening up, and it feels really uncomfortable.  Otherwise I have no real problems.

I do feel the key to recovering from this procedure is PT.  Luckily for me I work in the field and treated many post-mastectomy patients and was familiar with the post mastectomy protocols from my previous job.  If you are considering this surgery, make sure you ask for a PT consult to review stretching to be done after surgery. 

Hi Day, I think we e spoke before.

I am 3+ years out of the lat flap and I am an ex ballerina.  It took a good 2 years to learn to sit up straight again, to regain the strength and to let my muscles relax enough for PT.  The PT I got focused on stretching (I used a Pilates ball) but I did have to wait for the "drop and fluff".

My body mechanics are different, I cannot lift weights, as that exacerbates for me, the iron bra instantly.  Stretch, stretch stretch and when your PS gives the OK, find a PT that is well versed in lat flaps.  They are out there and your PS should certainly have a few for you to try.

It takes massive work to break the muscle strictures post lat flap.  I think I worked 6x daily on those muscles to do that with the Pilates ball.  The key is consistency.  If you are dedicated and

have a great PT, you can retrain the remaining muscles to take back over.  It wil take alot of work and time, but it can happen.

I can no longer do pushups, those muscles did not want to retrain, and I am supposed to avoid any types of exercise that distorts the breast but otherwise I am comfortable, balanced, and back up to speed.

PM me if I can h elp further.  Everyone is so different and each dr. has his own type of lat flap, one size does NOT fit all with this surgery.

xo

While I am not glad to hear of others with the same problem, it is nice to know I'm not alone!

I had bilat BMX with lat flap reconstruction in July '09. A year and a half later, I still have a lot of issues with:

1. Constant upper back pain, especially when sitting at a computer for a long time. Which is my job, 8+ hours a day. Major pain between spine and scapula  and in trapezius muscle, as well as burning. I think since my lat muscles are weakened, this puts more pressure on these other muscles to keep my back straight.

2. Head and neck pain - sternocletomastoids - ear pain as well. Again probably related to the pain in the other muscles, a cascading effect. I constantly find my shoulders hunched up since this surgery - I try to remember to relax but they are always clenched.

3. Very sensitive skin over lat flap excision site. Numbness around these sites. Pain in both sides of ribs right under these sites. Pain between lat flap site extending through underarm area to breast. Iron bra/ tight belt feeling around chest.

I saw a pain specialist because I would be in such pain after a day of work I would drive home crying. They ended up getting me addicted to opiates, which was worse than the pain. So I quit the opiates and I just live with it now, slugging down ibuprofen when it's severe.

What pisses me off the most is that no one told me ANY of these possible side effects before I had the surgery. And I was given no other options - too skinny for tram flap, not enough tissue for just an implant, DIEP never discussed.  I am glad I had them reconstructed, because at 44 I wasn't looking forward to go through life without breasts. But I wish they had better techniques. 

First I want to say that I am sorry that you are having troubles. I hope that they begin fading fast....

 I am considering a lat flap soon. I have had bmx so far. I had rads on affected side then had tissue expanders placed (months later).  I had infection on radiated side and had to have it removed. So flaps are the next step for me.

Anyway, some of the things that you are explaining are things that I am experiencing with just the bmx. My arm strength is way down, I can't open things very well, I definitely have noticed a change in positioning myself while lying down. Because I didn't have immediate reconstruction I can attribute these things to my bmx sugery. I was just wondering if some of your problems are from your mx sugery and not from the flap surgery?

I too experience most of what you describe here.  I am perhaps a lot older than you, now 66 although I still work a full day at my university job, and had my reconstruction in 2004.  I have felt that the discomfort is definately more pronounced lately, but the thing that concerns me most is that after reading all these posts there does not seem to be a solution.  I have however decided to visit my doctor for advice and fervently hope that this move does not result in more surgery, something I do not relish. Whilst I totally appreciate the fact that I do not have to have an external prothesis, I did not expect to be so uncomfortable.  It has helped though to read all your comments and it would appear that UK surgeons are just as mean with details as they are in US.

thx for the bump - I'd forgotten about this thread. Well, an update - 1 year later and... everything is still the same. I've had to give up one of my hobbies because of the back pain. Saw a PT for awhile, but not much progress. Seeing another pain specialist in the new year.