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Topic: Pain from Latissimus Dorsi Flap Surgery

Forum: Pain — Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Jun 3, 2012 05:33PM, edited Jun 3, 2012 05:41PM by Lisa58

Lisa58 wrote:

Hello,

I would like to correspond with someone who has lived the nightmare of chronic pain after this type of reconstructive surgery. 

I had a complete mastectomy 12/14/10 and have been living a horrible nightmare.  There is not enough space or emotional energy to provide all of the details here, but I will provide a few deails...I developed a seroma and was adhesed to my rib cage.  This required a second surgery on 5/9/11.  After 15 months of physical therapy, an active stretching program, pain medications, a swimming program with PT, acupuncture, craniosacral therapy, massage, and more, I continue to have unrelenting pain.  Neurontin has caused tinnitus.  I am now using Lidoderm patches.  I may never be able to return to the active lifestyle that I enjoyed previous to all of this.  I have returned to work part-time, but that took 9 months to accomplish.  There is more!  I want to connect with other survivors who have endured!!!  I am excited to be on this website!

Thank you!

 LisaCB

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Jun 3, 2012 07:59PM HappyTrisha wrote:

Lisa, I am going to give you links to a forum and also a thread where you will probably get a lot more feedback!  The forum is Breast Reconstruction, and the thread is Latissimus Dorsi Breast Reconstruction.  You also might want to start your own thread in the Breast Reconstruction forum.  In any event, I think you will find more relevant foot traffic there!

http://community.breastcancer.org/forum/44/

http://community.breastcancer.org/forum/44/topic/751135?page=32#idx_931

I'M DOWN WITH CHEMO!

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Jun 3, 2012 08:01PM HappyTrisha wrote:

Lisa, the second link didn't work so well.  Just go to the Breast Reconstruction forum (first link) and scroll down about 10 topics.  You'll find the lat flap thread.

I'M DOWN WITH CHEMO!

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Jun 3, 2012 09:14PM Lisa58 wrote:

Thank you, Trisha!!

Lisa

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Jun 3, 2012 10:23PM AnneW wrote:

Lisa, I'm so sorry you're going through this nightmare. I've worked in a pain clinic before, so I know what you've tried, and how hard it is to avoid chronic pain meds. I can't think of much worse than livng a life with pain. Hang in there. I'm sure you'll find others who will relate to post-op pain, regardless of the source.

2002 IDC stage 1, grade 1, rads & AI

Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 5, 2012 10:01PM Lisa58 wrote:

Ann,

Thank you for your support!  I have heard from a couple of women who have sent private messages and given me some ideas for MDs to contact.  I am so glad I have found this website!!!  The world needs to find out how to prevent breast cancer!!  I believe there is a huge environmental component and I am not sure anyone is really considering that piece.  Thank you!

Lisa

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Nov 5, 2012 06:11AM Lydiaj96 wrote:

I have had the same as you and am also left with the nightmare of back pain. Am trying to get back to work but am struggling - I'm a nurse! I have total empathy for you

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Nov 9, 2012 01:11AM, edited Mar 23, 2013 10:06AM by Shrek4

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Nov 9, 2012 06:36PM Lisa58 wrote:

Dear Day,

I am so sorry to learn about your struggles!!!  It just makes me more and more angry to read about how plastic surgeons are basically telling us lies about this surgery!!!!!!!!!!  Yes, I am very physically active.  I specifically addressed this with the PS.  He assured me that I would be able to return to kayaking, running, cross country skiing, riding my motorcycle, doing all of my own yard work/snow removal (my husband is deceased on top of everything else), etc., etc.!  It has been a nightmare!!!  Day--find a chiropractor that does myofascia work and deep tissue massage.  Also, find a massage therapist who does deep tissue massage.  And, have a physical therapist give you a home stretching program (or your chiropractor may be of some help in this area).  There are physical therapists who are trained in helping women who have had the surgeries that we have had.  These are the mainstays of what I am doing.  Also, you may want to ask your primary care provider to prescribe a Lidoderm patch for your back.  Oh, we have to get connected with other women and put together a website for women who are considering this surgery!!!  We have to become a voice!!!  There are some practitioners who are recommending against active, thin women from having this surgery.  We need to help move this cause forward!!!!!  I am a family nurse practitioner and I asked the right questions but did not receive any information about any of this!!!!!!!!!!!!!!!!  Please write again!!!  I care!! 

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Nov 9, 2012 06:41PM Lisa58 wrote:

Hi LydiaJ96,

See my not to "Day".  What a nightmare!!!!!!!! I am a family nurse practitioner and I asked the right questions, but did not receive any information about the potential complications regarding this horrible surgery!  Write again!  I care!!  Ask your provider about a Lidoderm patch, chiropracter for myfacsia and deep tissue massage, massage therapist for deep tissue massage, gabapentin...still chronic and unrelenting pain, but those things help a bit with the pain and mostly prevent worsening of the complications (the therapies).  Are you back to work at all?  We have to get together as women who have experienced this and start a cause to get this surgery banned!!!

Lisa58

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Nov 10, 2012 10:28AM, edited Mar 23, 2013 10:04AM by Shrek4

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Nov 10, 2012 06:43PM Lisa58 wrote:

Hello Day, Yes, I, too, had to learn how to turn in bed.  What a nightmare.  Your description is right on.  I went to a pain specialist, also, and had injections, which did not help.  I just noted the details of your battle under your last note.  You, too, had a seroma.  These idiots are selling a bill of goods because it is a good income.  They are clueless, do not want to hear from us, and keep butchering women.  My heart goes out to you and all of the women who have endured this horrific surgery with all of the consequences.  Have you had any improvement since your original surgery during 2009?  So sorry...so angry!!!!

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Nov 11, 2012 10:00AM, edited Mar 23, 2013 10:04AM by Shrek4

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Nov 19, 2012 04:20PM minxie wrote:

I have horrendous pain from this surgery as well. I had it done July 2009 and I have never been the same since. I am on oxycodone and oxycontin and certainly dependent on them at this point. The pain brings me to tears.

And yes, the plastic surgeon who did it never gave me an inkling of an idea that this could happen.

IDC, lumpectomy, SNB, axillary ND 12/08. DD AC, Taxol. Then DCIS found 7/09, BMX w/lat flap reconstruction. Local recurrence 5/12, TN, 1 cm, node negative. Implant removed.

Dx 12/4/2008, IDC, 1cm, Stage IIa, Grade 3, 2/8 nodes, ER-/PR-, HER2-Chemotherapy 02/01/2009 Adriamycin, Cytoxan, TaxolSurgery 07/27/2009 Lumpectomy (Right); Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap (Both)
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Nov 19, 2012 10:22PM, edited Mar 23, 2013 10:05AM by Shrek4

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Nov 22, 2012 05:57PM Lisa58 wrote:

Minxie & Day,

So, what are we going to do about all of this????  We need to start a movement to get this surgery banned!!!  We need to educate women and give them information BEFORE they make the same mistakes-- believing the PSs!!!

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Nov 23, 2012 11:18AM, edited Mar 23, 2013 10:03AM by Shrek4

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Nov 30, 2012 02:23PM scareds wrote:

Add me to the list. Dbl mx w/lat flaps Jul 09. In pain ever since. LOTS of pain. Tried everything.Now scheduled to go in on 12/14 and get the thoracordorsal nerve cut. Anyone have that done? Hoping it will stop animation and release some of the tightness. Also have capsular contraction. never ending. My back feels AWFUL!

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Nov 30, 2012 04:25PM, edited Mar 23, 2013 10:05AM by Shrek4

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Nov 30, 2012 11:20PM scareds wrote:

Did it help make you feel better? Are you glad you did it?

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Dec 1, 2012 10:39AM, edited Mar 23, 2013 10:06AM by Shrek4

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Dec 1, 2012 08:55PM, edited Dec 1, 2012 08:56PM by Lisa58

Hello,

I had the thoracodorsal nerve cut and it did not help the pain and tightness at all.  The PS said it would help the pain and tightness after 6 months as the lat muscle would relax.  It did not help a whipstitch. 

Well, maybe there are lots of ladies who are happy with the surgery but I have not heard of one yet, has anyone else??? 

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Dec 1, 2012 09:59PM, edited Mar 22, 2013 06:41PM by Shrek4

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Dec 1, 2012 10:24PM GG27 wrote:

Lisa58, I am one of the ones who is extremely happy with my bilateral lat flaps.  I'm so sorry that so many of you are suffering with pain & tightness. 

I only posted because you asked if anyone heard of someone being happy. 

I did have some tightness for the first year or so & I saw a chiropractor because of shoulder problems & she gave me some excercises which seemed to help.  I am also a very active gardener, raking, shoveling, digging etc.  I don't know if that helped or hindered.  GG

Bilateral breast cancer, IDC, 3 1/2 cm, Stage 2 Grade 2, 4/12 nodes, ER+/PR+,

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Dec 2, 2012 12:21AM DLL66 wrote:

Lisa58, I also have zero regrets about my bilateral lat flaps. I am sorry that you & the others in this thread are experiencing pain & discomfort. I am active, work full time & I am able to do pretty much everything that I could do before, including swimming (not competitively). 

I wonder if there is any common denominator for those that do have pain as a result of the surgery?

Dx 8/27/2010, IDC, ER+/PR+, HER2-
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Dec 2, 2012 02:05AM, edited Mar 22, 2013 06:41PM by Shrek4

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Dec 2, 2012 02:39AM GG27 wrote:

Day, I too thought that chiropracters were basically flakes, but I had pain in my shoulders & my neighbour convinced me to go - once.  She was able to relieve my shoulder pain with a few treatments & gave me some direction on how to avoid injuring myself again, I am a believer.  

I was quite athletic as well.  I spent my chemo & rads time strengthening my back with weight lifting & rowing.  I also built a stone wall by myself & painted my entire 2 storey home during this time.

I met another woman through my PS, she too had Bilateral LD & she is very happy.  Now she isn't as active as I am, but I know that she doesn't have much residual pain or tightness, although she did have quite a bit of tightness for a year or so.

The one thing I like about BCO is that we all get to share our experiences & hopefully someone will get some help or tip from anothers experience.  I am sorry that some of you are suffering so badly.  I wonder if the PS's technique has any bearing on pain & tightness. 

The other bit of info I can add is that I had terrible pain from both AI's & tamoxifen & discovered that I am allergic to some of the fillers & once I found a brand which didn't have those fillers my pain disappeared.  Prior to that I was a wreak, it was like I was an 80 y/o with severe arthritis.  I could barely walk up the stairs some days.  HTH - GG

Bilateral breast cancer, IDC, 3 1/2 cm, Stage 2 Grade 2, 4/12 nodes, ER+/PR+,

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Dec 2, 2012 04:41AM, edited Mar 22, 2013 06:41PM by Shrek4

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Dec 2, 2012 10:24AM, edited Mar 22, 2013 06:39PM by Shrek4

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Dec 3, 2012 11:20PM scareds wrote:

Lisa58,
Are you sure he cut the whole thoracordorsal nerve? Many PS don 't get it--or it it re -enervates and continues to make you miserable. Who cut yours?

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Dec 4, 2012 10:10AM Floridakt wrote:

Day,
I hope you get some relief today. I am heading to my PS for my first post surgery office visit. I am praying for healthy skin and quick healing. Today is the month anniversary of my first surgery. Needless to say, I am already worn out. No TEs were put in, so two more surgeries on the horizon. I am at the point where I have no expectations or time tables any more. Just hoping for a goodre overly from this and then taking things one day at a time.
Karen

Dx 9/20/2012, DCIS, Stage 0Surgery 11/06/2012 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 11/30/2012 Reconstruction: Latissimus Dorsi flap (Both)

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