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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 02:33PM, edited Jun 3, 2012 02:41PM 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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Posts 31 - 60 (73 total)

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Dec 4, 2012 03:29PM scareds wrote:

Day,
IHaving not had the thoracordorsal neve cut yet, I can feel the muscles in my breasts. Will that go away when the nerve is cut?.

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Dec 4, 2012 04:03PM , edited Mar 22, 2013 03:40PM by Shrek4

0

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Dec 6, 2012 07:10AM , edited Dec 21, 2014 08:52AM by Moderators

This Post was deleted by Moderators.
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Dec 19, 2012 06:23AM Lydiaj96 wrote:

Thanks for your reply. It helps to know you are not alone. I can totally connect with the things people are saying on this thread.
I too can not turn over properly in bed but have to sit up first. I often get caught short of breath and then have to sit up to allow me to get a deep breath. I too have shoulder pain and often get the stabbing feeling in my boobs. When I asked my surgeon about my back pain he answered me by saying "what did I expect with my musculoskeletal problems " (I have osteoarthritis of my knee) I felt like I should just be grateful I'm alive! I think us women should stick together and look at how things could be improved. I too had seromas and am thin - seems to be another factor!
I can also relate to the feeling of the corset being too tight - I always describe it as a hard shell permanently on my back which moves up and down as I try and walk. Standing for long periods is hell and can only do sitting with a decent supportive chair/ lumbar support. I use versatis patches at night which take the edge off the pain but I find sleeping difficult as I end up stiff and have to change my position. Has anyone had the myofascial release? If so how much relieve did you get. I am really struggling at my work and am probably going to have to go down the route of ill health retirement but I'm only 47 and it appears that you are not supposed to be ill before 50.
Sorry this is long but have felt that no one understood what I was going through!

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Apr 7, 2013 06:53PM Olivias wrote:

Hi, I had a breast rconstruction with back-flap only ( no inplant) a whole 7 years ago.  Tonight I'm in agony because I did a bit of gardening yesterday. Gardening was my passion and my profession for many years.  I spent months and months after the op in such a state that all I could do was sit in my garden and listen to the birds. Now I can do more than that thank god.  But at moments like this, I wonder if one day I won't give up and just kill myself. No, seriously, I was so active and independant before this. Now I'm slow... I've developed traditional back ach because my spine is getting a kink in it. I have difficulty doing the most ordinary things. When I get out of bed I nearly trip up on myself. i once fell on the road straight on the side of my face because I was scared to put my arm out. My pain is across the shoulder blade and round the ribs.  I work on an hourly basis, but at I've had to cut right back and at this rate I won't even get to pension age.  I feel the surgeon was thoroughly dishonest. I told him what my activities were and that I wanted to do sports etc and he said that was no problem. As it happens now, One arm is nearly a hand shorter than the other because my shoulder is stuck.  I diffinately think this operation should be banned.  If this were a drug or vaccination and the equivalent percentage of people had disastreous side effects it definately would be banned. I think that because it touches our femininety and it's part of post cancer treatment we're expected to be grateful and shut up.  I feel really bitter, it's deprived me of the active life I had, and my husband and children of the wife and mother they had. You might feel by this post that I'm a negative depressive and should look at the good things in life. Well, I do. I wake up every morning smiling, I tell myself , and it's sincere, that I love life. But when at 3.30 in the morning I'm not sleeping having taken all the medication I can take, and I know that I'm going to have to cancel my work yet again tomorrow, I can't help but feel that I've been badly conned.  Frown

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Apr 8, 2013 08:30PM Lisa58 wrote:

Olivias,

Thank you so much for your post!!!  I do NOT think you are a "negative depressive"!!!  I get angry every time I read a post from another woman who have suffered so much.  It has now been 2 and 1/2 years for me (12/10) and it is still a nightmare.  The PS surgeons are indeed give us a "con" job!!!!!!!!! We have been stripped of life in so many ways.  It is like being sucked under every day by a huge undertow.  How right you are about a drug or vaccination with these side effects would be banned and there would be a major class action suit.  I did seek legal counsel and was told there was no way to prove malpractice.  I am considering obtaining a second opinion before the statute of limitations expires.  I finally wrote the PS a 4 page letter and sent a copy to the hospital's CEO and Medical Director.  I received a placating letter from the CEO saying she was sorry about my struggle and that the PS of very upset about my trouble.  Baloney!!!  We should go on Opra or Dr. Ox and reveal the horrors of this surgery.  It needs to be publicized and banned!!!!!!!!!!!!!  Keep in touch!

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Apr 9, 2013 09:42AM minxie wrote:

I had to give up painting because the lat flap made it impossible for me use right arm on for more than an few hours without awful pain. To the point of tears. I'm almost 4 years out from that wretched surgery. Wish I had been presented with other options!

Question - do you think people with tram flap have as many problems as us lat flap people? I know they're at a higher risk for hernia, but I don't know of anything else.

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, Taxol Surgery 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) Surgery 05/24/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right) Radiation Therapy 06/13/2012 External
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Apr 9, 2013 09:57AM rozem wrote:

hi ladies...i feel your pain, literally!  there are a few things that have helped me - yoga for sure, the stretching and building core muscle strength is key.  I take a lose dose muscle relaxer when needed - not as much anymore.  I also use a topical cream on the sore spots as required.  I dont ever think i will be the same but i am trying to adjust.  I also had a pow wow with patient relations, surgical team etc.  I know it changes nothing but they need to be aware of the issues some women are having

i guess i dont understand why some women do well with this and others dont - i know member DAY said that women who were the most athletic b4 surgery dont do as well.  I dont know about this - after a year of treatment i certainly was not in the best shape (was in great shape before diagnosis) i have talked to women who worked out within a month of surgery and were back at the gym on a modified routine so obviously athletic - who knows

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Apr 11, 2013 09:01AM rozem wrote:

hi ladies

for those still suffering...have you considered RFA?  I read something in my local paper about it once and apparently it helps with chronic pain.  It is surgical so not sure any one of us wants to undergo more surgery...but they zap the nerves in certain pressure/pain points.  It does not deal with the source of the pain but rather zaps the nerves so they are not sending pain signals to the brain.  If you are working with a pain specialist they will probably be able to give you more info

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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May 2, 2013 04:39PM lindadel wrote:

Hello! I had double flap done four years ago. I am experiencing dull pain/sharp pain not just in a localize area but throughout where they harvested the adipose tissues too. It feels like there's a board stuck in my backsides and pinching my nerves. Worst decision I had. I should have not done it. Implant failed bigtime for both breast before the flap transplant was done also. I avoided mirrors for a longtime and delved into depression. I was given antidep med for it plus, to lessen my pain perception. I quit that med and now I feel every bit sore and tired everyday. Lost strength in my arms which the doctor reassured hopefully it will come back with muscle buildup and exercise. NOT! I do not want to take pain med because I am allergic to it so I'm trying holistic approach. I am currently introducing myself to yoga for flexibility. First day, for just a little stretch, I felt my scar tissue pulling and tagging with burning sensation ( i knew I tore up something inside for sure). I no longer have a normal life. 

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Jun 10, 2013 05:39PM Kvolturo wrote:

Im having this surgery done inWednesday. Im so scared. I hope I dontt have pain. I made it through a left mastectomy in march without any pain killers at all. The nurse said this is going to be a bit more painful. After reading this I am scared. I dont like pain meds. They make me feel ill.

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Jun 11, 2013 03:34AM Flaming-Phoenix wrote:

I had bilateral mastectomy with LD flap reconstruction in October last year. I had multiple seromas, which were treated with aspiration, seroma drains, iodine wash inside the cavity and finally further surgery (x2) to debride and close the wounds. Healing was impaired for 2 reasons:- i I had an extensive, slow growing bacterial infection, which required longer term high dose antibiotics; ii The TNBC was recurring in my neck nodes (diagnosed a few weeks ago).

I can wholly relate to the pain and the "tight corset" feeling. I also have the breathing problems that you have described. I also suffer from primary fibromyalgia, which will exacerbate the pain.

Having dealt with pain positively for the last 20 years, I can offer the following strategies that have worked for me...
1. establish a balanced pain medication regime (by balanced, I mean to minimise side effects as well as reducing the pain).

2. Build up a low impact exercise programme, which allows you to mobilise the joints and stretch out the muscles gradually. I have noted the sporty activities that some of you have mentioned above. With the exception of the yoga, you need to regard these as long term goals, to build up to slowly.

I swear by aqua aerobics. The water supports the body to reduce injuries whilst providing resistance to strengthen the muscles. I have found however that I cannot access all of the aqua exercises, so take to the pool at my gym with a noodle to focus exercises on stretching the upper body. A personal trainer should be able to advise you on appropriate exercises.

Finish the session with 20 minutes in the Spa pool to gently massage the muscles that you have just worked. Just be aware that if you have any open skin wounds that the spa pool can cause infections, so there will be times when you shouldn't use it. A hot, powerful shower is nearly as good.

3. Play psychology with yourself. Celebrate the better days and anything that you can do today that you couldn't yesterday, however small. Recognise that if you have a busy or heavy day one day, there is likely to be a "pay back" day and allow your body to rest for this day.

4. Recognise your new limitations and abilities and try not to compare with what you were able to do before you fell ill - treat them as possible targets for the longer term..

5. This is a difficult one - try to treat your body in the third person. It is letting you down, just as your car lets you down from time to time. This removes a lots of the negative emotion about the pain and limitations. Yes, you will still be frustrated, but the feeling of failure diminishes. This strategy leaves you mentally stronger to attack the pain.

6. Set yourself targets which challenge you, but are achievable. ( I started off by walking to the front gate, then the first lamp post, the second lamp post ... when I was diagnosed with the fibromyalgia 20 years ago)

7. Stay positive! Pain is amplified when you think about it. Distract your attention with something else - TV, music, a trip out...

I am sorry that this is such a long blog. I hope you don't feel that I am patronising you - I share the pain, but won't give in to it. All of these strategies have and do help me on a daily basis. Hopefully they will help..

Take care....

Go to war - and WIN! Dx 3/31/2012, 4cm, Grade 3, ER-/PR-, HER2- Dx 5/11/2013, 5cm, Grade 3, ER-/PR-, HER2- Targeted Therapy 05/25/2012 Avastin Chemotherapy 05/25/2012 Cytoxan, daunorubicin, fluorouracil, Taxotere Surgery 10/15/2012 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Reconstruction: Latissimus Dorsi flap (Both) Radiation Therapy 02/20/2013 External Chemotherapy 04/26/2013 Cytoxan
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Aug 26, 2013 10:03AM snowshoe wrote:

Thank you for your "positive" input. I don't go to forums or blogs regarding this issue, except to try to find the positive things that individuals are doing. The negative stuff is difficult to relate to, since none of us ever knows the whole story. And, it's easy to get down, and easier to place blame. I am not saying I do not get down or "want" to place blame, but I refuse to let myself go there.

I had a bilateral mastectomy with latissimus dorsi flap on left side with tissue expander and tissue expander on right side on 1/30/13. Tissue expanders were replaced with style 410 gummie bear implants 5/22/13. I had my last rehab appointment for physical therapy on 8/21/13, after reaching a range of motion that plateaued for about 6 weeks, with only slight degree increases. I have my 6 month followup appointment after implant surgery on 11/19.

I want to add that I had a lumpectomy on left breast followed by 6 weeks full breast radiation in June-August 2004. DCIS returned in 1/13, so I opted for the double mastectomy and if I wanted to have reconstruction would need the latissimus dorsi flap due to the radiation, which compromises the chest wall / pec of that side, which will no longer stretch appropriately like pec muscle tissue that has not been radiated.

My plastic surgeon did a beautiful job. However, I have the tightness and pain you all discuss. It is a mind trip, to say the least. But I willingly and knowingly chose this surgery. Was told up front that I may or may not have discomfort after the fact. That even women who do not opt for reconstruction surgery of this kind and have had a double mastectomy still complain of this pain. So that being said, I have not had other complications as some of you have mentioned. But along with the day to day routine of doctor visits, weekly rehab appointments (all 2 hours from my home), I will continue to make the effort which is my effort alone to make, to reach perhaps a different "baseline" of activity and range of motion, and incorporate different options for my life ahead. It is an opportunity to redefine my life!

I really have no one to discuss this with, or lean on. So I have become my own strength. My physical therapy (otherwise known as my daily exercise routine for life, from this point forward) consists of 2 sessions, one in the morning, one in the later afternoon. My morning routine consists of a 30 minute elliptical session (or a walk, or later this winter a snowshoe), followed with a combination of stretches, or some free weights (3 lb's), or some theraband stretches. I bought a 65cm floor ball which I use 2-3 times daily to lie back on and get a wonderful relaxing stretch, for up to a 2 minute hold, after any exercise. Or even just to take a breather.

None of this is easy. All of it involves pain. My current goal is to continue this routine with an effort to stretch farther and farther and breathe deeper and deeper, to get the most benefit from it, before my appointment with plastic surgeon on 11/19. I want to know that I have done everything possible during this timeframe (which he said is the most important time to address these issues), which I have never slacked on. Once in a great while I will take a 5mg tab of valium at night because I am so tight that I am continually conscious of it. By morning I have slept all night, and the next day still feel the muscles relaxed. I take this day to read, kick back, and basically do nothing physical except for my exercise routines. Just to recoup and get back on that positive track again.

My efforts now are to "get out of the box" so to speak...the "box" being months of the grueling recovery, initial efforts toward rehab and regaining a liveable range of motion again, doctors and rehab therapist appointments one after the other after the other, to put this in my past and get back to living in my lovely mountain home environment, and have any discomfort placed on the back-burner to address only at times of stretches and other exercises designed to help alleviate it. In the hopes that I will finally realize what all of this was for: TO LIVE LIFE! Be that within some new limitations, but to add some new horizons as well. I live a quiet life, playing music, spending time with my husband as he also addresses is own aches and pains of growing older, his green thumb of vegetable gardening, raising our own beef, and just the basic upkeep of our home be it outside or inside, sitting by a cozy fireplace in the upcoming winter months comfortably on the couch recliner that I spent nearly all of this past winter of '13 in too much pain to even lie in bed, now happy that this part of the recovery is behind me, and that I am now on the mend....

Take care, all my friends. The mind is a powerful thing. Cry sometimes. I do. But after the tears fall out of shear exhaustion, smile a little and get up and have a soda. Or go pet your dog. Or go kiss your husband.

Dx 6/2008, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR- Dx 1/2013, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR- Surgery 06/30/2008 Lumpectomy (Left) Radiation Therapy 07/22/2008 External Surgery 01/30/2013 Mastectomy (Both); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap (Left)
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Sep 16, 2013 10:52AM kimber_1616 wrote:

This is an old post, however I am one of the "lucky" ones to be living with chronic pain after a lat flap. I go weekly to the chiro, massage therapist and acupunturist and still take pain pills like candy :(

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Jan 9, 2014 01:59AM Morgan1 wrote:

hi Lisa 58! I'm so blown away to have found this forum! I'm astounded that there are others that are suffering from this surgery.

I had this surgery may 2009 to fix a botched breast reconstruction  done 18 months before. My simplest form of recon turned into a nightmare with a stubborn PS telling me he knew best even when telling him that the ex panders were completely in the wrong place. He replied I'm the surgeon I know what I'm doing. Well he was an ass and I was left with one breast under my armpit and the other near my collarbone. He didn't want to fix it or even look at them, my breast surgeon told me to move away from him and see another PS to fix the mess. So the latt Dorsi  op was an 11 hour surgery that I never recovered from. Before surgery I was in peak physical form the best health I had ever been. The surgeon told me it was the best way to go into this surgery. I was told that my life would be the same as before without the ability to 'rock climb'. ....

After the surgery everything was different. I had blood transfusions and nearly failed the process. The pain was worse than any other operation I had endured. Firstly I had a burn to my back that wasn't reported until day three from something being dropped on me during surgery and it was agony as I was on a wave bed and each wave was excruciating. The surgeons had forgotten to mention it and I complained until the nurses looked and asked. The doctors laughed and said they had done that and it happens quite often..... Later at home I really struggled I had never recovered slowly and all doctors were amazed at how great I healed. With this I couldn't move my arms for well over a month and from day one did not sleep. The pain in my back increased every day and every day I would tell myself that I would be better. The surgeon told me this too. The healing process was very slow and I had four inch by inch holes at either end of the reconstruct edges. They were dressed and packed two times a week for more than three months. In my excited state of wanting to get back to work at the three month mark I did so but only four/ five hours a day. Each day got worse not better. I was steadily going downhill and the pain was getting worse each day. Work was terrifying and most days I would lay in tears wondering how I would even get home. Home was bad too my beautiful husband who has been very supportive was doing everything from looking after our three daughters to housework and also looking after me as I could not sleep with constant chronic pain. We were both awake with him heating wheat bags and massaging and consoling me. I was telling my surgeon all these things but she was not hearing me and kept saying every day gets better. I was going crazy. After nearly a year I went to see the surgeon and deciding that something needed to be done I wrote a desperate letter putting everything into a long letter and left it with her. Within a short time she rang and apologised telling me she didn't realise! I immediately finished work and was sent to a pain clinic. I had various tests and procedures with all failing and most making the pain worse. It was exhausting and depressing.  I knew I had neurological pain but nothing else was found.

My pain is constant. It NEVER leaves. Everything I do makes it worse. I cannot twist turn or roll over in bed. I can not arch backwards at all if anything aggravates it I can be in bed for days to weeks. The worst thing forme is  that I can not sit up at all without  shocking pain. I need to always be at a 45/50 degree angle. The pain is constricting like a pushing pulling crushing pain. I wake every morning with gasping pain it is hard to draw breath. I have constant burning heat and everyone that feels my back can show me where the heat is and that is where the pain is. My pain has spread to all ribs and collarbone. My skin on my back has become thin and shiny and it is hard to rub anything into it- so my husband tells me. For the first three years I was very depressed from pain , no sleep and no diagnosis. I was having many treatments..... I was having lymphatic massage and massage and after seeing this person for nearly a year she told me she thought I had something called CRPS. Complex regional pain syndrome. She told me it usually affects limbs and she had never seen it on a torso but she hoped it wasn't that. I had classic symptoms and she was certainly afraid for me.

I had also seen another breast recon doc and after looking at me told me also it sounds like CRPS. I was searching for answers and also researching this shocking condition. He also told me that the surgeon had followed the books and again had done nothing wrong. (Well the burn...)

Meeting another GP and telling him my history at last was told that I definitely had CRPS. Everything adds up except the fact that there are all of you ladies and all of this pain. I am involved with a great FB group for CRPS and it has saved my life. This is a very lonely condition. Being surrounded by loving family and friends is amazing but believe me I'm all alone with this. I've lost my life, job, sport, had to sell our large loved family home as it was too hard for me to look at it anymore. The friends dwindle and I'm left with the gems but the life I knew is gone. I read here that fit thin sporty girls fair worse???? I can remember the surgeon saying on op morning that I really don't have enough skin for this op and I said should I do this? She said I will make it work.....

We can't go back. CRPS is a living hell it's nick name is the suicide sickness. Pain is gauged on a pain index called the McGill index and CRPS is the highest pain felt higher than natural unaided childbirth or amputation 47 out of 50. Unlike childbirth which I've managed unaided three times this high chronic pain never leaves and  there's no nice present at the end.

I'm in Australia if anyone is near! Would love to chat about this disgusting dangerous operation and get the risks out there to all! I am now on a permanent disability unable to work. I am blessed in many ways and have a new type of normal. However the price of osteopaths and medications are horrendous! I'm taking SAMe LDN and recently melatonin which is AMAZING! Loving the sleep although I get more pain from the result... My diet is amazing no dairy/ gluten/ sugar preservatives or colourings. I veg juice every day and I look amazing which is depressing as its quite the contrast to my predicament!!!! 

Glad to have found you here! Hope to hear from you soon!

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Jan 15, 2014 04:17AM lgabbe60 wrote:

Thanks to all my fellow LD Flap Reconstruction peeps...I am so glad I found all of you.   I had LD surgery in 2006 (Mastectomy in 02 but failed expander procedure until I had to do the flap).     Almost 2 years ago while waiting for a plane, I reached with my left arm/hand to pick up my purse to the right of me and twisted my torso.   The pain that hit at that time was something I will never forget.   Excruciating, take your breath-away pain.  I thought I was having a heart attack.   It subsided within a minute but hit again after I got on plane.   That was the beginning of nearly 2 years of off and on excruciating pain attacks that happen for no particular reason but always when my upper torso is turning with arms in play.

Yesterday I spent 6 hrs in ER absolutely thinking I was having a heart attack.  I wasn't - my heart is great.    A couple of months ago I went back to my PS that did the surgery and he said he had never heard of anything like I was having.   Yet, I can go to this website  and find all kinds of stories much like mine.    I have told every doctor I see about what I am going through and they all just shake their heads and say they just don't know.  I'm 63 years old and I feel very blessed that I am 12 years cancer free.   My LD option was good for me and I did great with this until 2 years and I hate living with this pain and not know when it is going to hit.

I too have had terrible pain when turning in bed.  What's up with that??    Anyway, I am going to try to send these articles to my PS and my other doctor.    I'm going to try deep massage and get into stretching exercising.   

labbey

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Jan 25, 2014 06:27AM , edited Jan 25, 2014 06:40AM by twinsmom1

Oh my! so glad to have found you all. I have had LD flap surgery after a double total mastectomy. This was done 18yrs ago. The first few years I was OK after I had my son in 2004 the pain got worse. I am not sure if pregnancy made it worse. I have been having mid back thoracic pain. I can no longer do the activities I used to do. I can't push, pull or stretch to get an object from a shelf. Can not stand or sit for a long time. Trips are an ordeal. I have to have a lumbar support. I am in agony. I live with this pain. I am in tears at times. I have tried acupuncture, chiropractor,  tens unit, heat therapy, physical therapy (which made the pain even worse) exercise makes the pain worse. The only thing that helps is massage  which my husband does for me. He does it the way I want which is forceful and very deep.  ( this only helps temporarily ) It numbs the area for me. but how often can you get a massage? Those chair massage or any of those gadgets do not do the job. The kind of massage I need is the extreemely hard ones. I have tried all sorts of muscle relaxers non have worked. Pain killers make me drowsy but not really work for me they make me sick too. Took NSAID such as mortin, advil etc which took the edge off. But can not take it any longer cause I ended up with ulcer from taking it too much. I used to take 4 pills every 6 hours. The only thing that keeps me going is my family. I read all the blogs. I have the chest tightness, the unexpected sharp weird nerve pain that comes with some movements.

I wish I knew all this side effects before my surgery, the only thing I was told when I asked the side effect was that I will not longer be able to throw a ball as far after the surgery since I will not have the muscle. No that was not enough.

Can you all tell me where exactly your pain is? The worst part of my pain is in my mid back. Thoracic region.

I just want to add that I have learned to live with it. The Physical therapies told me to pace myself so ever since I know what my limitations are so I pace myself. I watch what activities I can handle per day and do not abuse myself anymore.

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Jan 31, 2014 07:20PM , edited Jan 31, 2014 07:21PM by kimber_1616

In the first six to twelve months I was okay after the lat flap. Multiple (more recon surgeries) caused my muscles to be weakened. Now I am at a place where I am in PT, in lots of pain and have a crappy way of life. In those first months I was able to build up the muscles on the opposing side and it helped tremendously. How to get back there is what I struggle with on a daily basis.... Along with that I gave lymphedema :/ 

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Feb 2, 2014 06:44PM rozem wrote:

Im so sorry everyone is suffering - it breaks my heart, it really does.  I cannot fathom why this surgery is still done with such life altering complications

I wanted to let everyone know something that seems to have helped me - they are doing trigger point injections in my painful tension points in my back and they are helping.  This, along with an active stretching program, is helping me keep the pain down to a dull ache.  The next step is botox injections in the painful areas as the lidocaine has helped

twinmom - mid back is EXACTLY where my pain is...

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 3, 2014 10:57AM Mariasnow wrote:

Well, I am on BC.org today searching for would could be the cause of my rib pain and swelling - while also going through an assessment to get to the bottom of it with my Oncologist and PS. I'd be quite grateful if it is actually tied back to the surgery and not mets. I too have had a tough time since my surgery. I was VERY active before - competitive endurance athlete level. Now I workout like an 80 year old. I don't feel the same running at all. I can feel the LD surgery pulling with every step. However, finding this forum is also a great relief because I'm TERRIFIED of liver or rib mets right now. I have a CAT scan scheduled for today.

Dx 3/2/2012, IDC, 1cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Dx 3/2/2012, DCIS, 3cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 03/23/2012 Mastectomy (Both) Chemotherapy 04/06/2012 Adriamycin, Cytoxan, Taxol Targeted Therapy 06/28/2012 Herceptin Radiation Therapy 10/08/2012 External, 3-D conformal external beam radiation Surgery 01/28/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 08/07/2013 Reconstruction: Breast implants (permanent) (Left) Surgery 08/07/2013 Reconstruction: Latissimus Dorsi flap (Right) Surgery 02/25/2014 Reconstruction: Nipple reconstruction (Both)
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Feb 3, 2014 10:58AM Mariasnow wrote:

Oh yeah, I also have a hard swollen lump like a small potato right below my rib cage on the LD side. I've found others who had this and it was mets. My head is in outer space with fear!

Dx 3/2/2012, IDC, 1cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Dx 3/2/2012, DCIS, 3cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 03/23/2012 Mastectomy (Both) Chemotherapy 04/06/2012 Adriamycin, Cytoxan, Taxol Targeted Therapy 06/28/2012 Herceptin Radiation Therapy 10/08/2012 External, 3-D conformal external beam radiation Surgery 01/28/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 08/07/2013 Reconstruction: Breast implants (permanent) (Left) Surgery 08/07/2013 Reconstruction: Latissimus Dorsi flap (Right) Surgery 02/25/2014 Reconstruction: Nipple reconstruction (Both)
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Feb 3, 2014 01:28PM rozem wrote:

mariasnow - praying praying praying that its b9 - keep us posted

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 3, 2014 05:28PM Mariasnow wrote:

Thanks so much. I truly don't know what to think or how to feel right now. I don't trust that results are even right so I'm not sure how much relief I would even get. I've been told the wrong diagnosis repeatedly. 

Dx 3/2/2012, IDC, 1cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Dx 3/2/2012, DCIS, 3cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 03/23/2012 Mastectomy (Both) Chemotherapy 04/06/2012 Adriamycin, Cytoxan, Taxol Targeted Therapy 06/28/2012 Herceptin Radiation Therapy 10/08/2012 External, 3-D conformal external beam radiation Surgery 01/28/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 08/07/2013 Reconstruction: Breast implants (permanent) (Left) Surgery 08/07/2013 Reconstruction: Latissimus Dorsi flap (Right) Surgery 02/25/2014 Reconstruction: Nipple reconstruction (Both)
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Feb 5, 2014 08:35AM , edited Feb 5, 2014 08:46AM by kimber_1616

I am trying a new experiment with the following treatment, it may not be for you, but it is working for me.

A man my husband works with grows medicinal mj. He gave us some "trim" that is dry to try and make a topical solution. His grandmother used to soak the leaves in rubbing alcohol and he thought if we experimented I may get some relief.  So I did some research on the net, and my first batch sucked, but gave me relief for about 30 min. My daughters (19 and 16) got me a double sided small crockpot for Christmas and I read that a slow heat with the crockpot is better for getting the oil infused. I can also cook it in the  garage and it doesn't smell up the house! So I melted about a cup and a half of coconut oil and put it in the crockpot.  I put a cup of dried mj in a cheesecloth that I wrapped up like a ball and tied with a twist tie. I then let it cook on low for 24 hours. Once cooked I squeezed out the cheesecloth and got out as much of the oil as I could. I then poured it all in a pot on the stove on low and poured in a cup of beeswax (which is too much because it is pretty solid like a deodorant stick) once the wax was melted I took it off the heat and poured in 3 tbs of vitamin e and I sprinkled in wintergreen, eucalyptus, and camphor bark in it. Then I poured it in glass jars. My husband puts it on me every night and has for the last 11 nights and I am pain free!! Supposedly it is an anti inflammatory and a natural muscle relaxer. I did get a recommendation from my dr so it is legal to have at home, but it does not get the thc in your system where you would pee dirty with mj in your system. (supposedly) The first night I just used the oil because I was miserable and it wasn't done cooking and I had immediate relief. Not everyone is open to this kind of treatment, but it is a lot better in my eyes than pain patches, pain pills and muscle relaxers!  Good Luck!

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Feb 5, 2014 08:46AM kimber_1616 wrote:

Forgot to mention, I have not felt a high or had any side effects ThumbsUp

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Feb 5, 2014 02:46PM Mariasnow wrote:

kimber - go glad to hear of your relief. I commend you for seeking that out and taking the steps to prepare and apply it. That's a brave act of self love. 

Dx 3/2/2012, IDC, 1cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Dx 3/2/2012, DCIS, 3cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 03/23/2012 Mastectomy (Both) Chemotherapy 04/06/2012 Adriamycin, Cytoxan, Taxol Targeted Therapy 06/28/2012 Herceptin Radiation Therapy 10/08/2012 External, 3-D conformal external beam radiation Surgery 01/28/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 08/07/2013 Reconstruction: Breast implants (permanent) (Left) Surgery 08/07/2013 Reconstruction: Latissimus Dorsi flap (Right) Surgery 02/25/2014 Reconstruction: Nipple reconstruction (Both)
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Feb 8, 2014 05:51PM Mariasnow wrote:

well both an MRI and bone scan came back clear so I'm ecstatic about that. The conclusions is pain is from my post-surgery pain. 

Dx 3/2/2012, IDC, 1cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Dx 3/2/2012, DCIS, 3cm, Stage IIa, Grade 3, 1/12 nodes, ER-/PR-, HER2+ Surgery 03/23/2012 Mastectomy (Both) Chemotherapy 04/06/2012 Adriamycin, Cytoxan, Taxol Targeted Therapy 06/28/2012 Herceptin Radiation Therapy 10/08/2012 External, 3-D conformal external beam radiation Surgery 01/28/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 08/07/2013 Reconstruction: Breast implants (permanent) (Left) Surgery 08/07/2013 Reconstruction: Latissimus Dorsi flap (Right) Surgery 02/25/2014 Reconstruction: Nipple reconstruction (Both)
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Feb 10, 2014 11:46AM shelleydf73 wrote:

I had my bilateral LD flap done 2 years ago this month and the past week have been having a severe burning sensation in my back (left side), around where the flap was taken from.  I haven't done anything that I recall to pull a muscle or such.  That breast also looks wonky, for lack of a better term.  The doctor said that it looked fine last year, though it was a bit dimply to me even then.  He claims that the flap was small since I am a small woman, and that the implant is just showing above and below the muscle.  Anyway, this burning..... it is driving me nuts!  It does ease up for a few minutes at a time but for the most part it just burns / stings all day.  Any advice?

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Feb 15, 2014 07:07PM gracecoan wrote:

So glad to have found this forum.  I had LD flap breast reconstruction in 2004 and have since had implants replaced twice, a complete "redo" of the reconstruction using abdominal flap in 2007 and I have had the thorcoradorsal (sp) nerve cut twice (2007, 2009).   I have had nothing but pain and limited function for the last 10 years.  I have been on pain meds, muscle relaxants, physical therapy, tens unit, lidoderm patch.. you name it. But what happened most recently (2 weeks ago) was a new and very frightening problem of extreme pain upon breathing (on the LD flap side) and difficulty drawing in a breath. Although I took all of my normal meds to try to "loosen" the tight feeling, the painful breathing (felt like a knife stabbing) continued for 24 plus hours.  I ended up in the ER.. it felt like broken ribs or a punctured lung, but all along, I suspected it might just be a "new symptom" from this dreadful LD reconstructive surgery.  The ER docs thought it was a blood clot or heart attack, but CT, EKG, and blood tests were all clear. I was given a shot of morphine and sent home. The intense breathing pain subsided after 2 days of round the clock pain meds and muscle relaxants, but  I am so frightened that this could happen again...and I think I may have exhausted all pain management and surgical revision options.  Has anyone had this painful breathing thing happen to them?  Any suggestions?  

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Feb 27, 2014 05:32AM djenken wrote:

1995 I was diagnosed with stage 0 breast cancer at age 40.  Had a lumpectomy and radiation.  2005 it came back a stage 1.  I had a mastectomy and the latissimus dorsi flap reconstruction.  Pain in my back did not start until 5 years later.  Did not go to the doctor because of poor insurance.  I tried hot/cold remedies, heating pads, ice packs, ibuprofen, Tylenol, stretches, and massage.  Nothing worked.  The  pain was not constant but started happening weekly and lasting 2-3 days.  One last try before finally going to the doctor.  I found a pain patch at Walmart for 97 cents.  It is called Capsaicin.  It worked!  After the 1st time the unbearable pain went away.  Twice after that I had an annoying uncomfortable tightness in the back.  Used the patch again and even that went away.  After 3 years of suffering on and off I am finally pain free.  Don't know how long it will last but for now I have relief.  Maybe the patch might work for someone else. 

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