Pain from Latissimus Dorsi Flap Surgery
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JoAnn and ronqt1, I'm so sorry you have such troubles with the loaf. Ronqt1, I hope the lymphedema PT gives you some relief.
JoAnn, is the pain with the scar always a burning one? Do you ever just have tightness and pulling? Or is it always pain?
You've probably already tried this, but in case you haven't....the gentlest thing I can think of for the back spasms is a simple exercise my PT gave me. It is just crossing one's arms across one's chest and gently leaning side to side.
My back scar pulls in a specific spot. My PT can see and feel it. I have started aggressive rib remobilization and a technique called the Graston Technique, which uses metal tools to mobilize scar and tight fascia. Sounds worse that it is. I also started some more orthopedically based PT exercises. Those things combined with a new compounded cream (which gives me a rash in two of the three spots tried, so I only use it in one spot and only once a day, not 3x as rx), are propelling me forward after a four month plateau at PT.
Massage made things worse for me too, but I wonder if some sort of scar release technique would help you.
I can't use any sort of rub with menthol either. I'm also allergic to sulfer. The last time I used a menthol based rub, I developed a rash which my onc deemed "impressive".
Percocet actually makes me feel worse. I am not taking anything orally right now.
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Hello,
Just to share on my experience. In July 2015, had my mastectomy and followed by immediate reconstruction with LD Flap. It's already coming to 8 months post surgery and I still have significant tightness at my back. Need to stretch my arms every hour. Am experiencing aching pains on and off until to my collarbone, shoulder and armpit. Can't sleep comfortably on my side too
The loaf has lessened since beginning but it's still there. Not comfortable and I have to wear bras without wires. My BS told me to give it another 6 months.
Looking back, I think I would not have gone ahead with the LD Flap if I had known all these discomfort, especially the perpetual tightness at the back.
This is just my sharing.
Regards,
Rachel
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Sorry I have been away. Since I had my implant removed, I am still having problems although started PT. Constant, nonstop annoyce and uncomfortablesness and pain. Never would I recommend the LD Flap. Yes I am happy for the gals who have sailed through this easy.
Nash, Jo, and Tai, I have started with the exercises with the manipulation even in the house, doesn't seem to work. I still cannot put my arm again my ribs on right side. However, when wearing a constricted bra, it gives comfort.
Love to all, continuing with my nightmare. I see PS ironically tomorrow, my nipple and skin is still there. He will want to know if I want my implant back. Don't know.
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ronqt1, I'm so sorry to hear you still feel so crappy. The whole lat flap aftermath ordeal is so frustrating. Good luck with the PS tomorrow.
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Hi, Joanne. Yes, still hanging in. Last week was a good week, this week not so much. So frustrating. Like you said, it's a roller coaster. Or chasing a moving target.
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Joanne, I don't get pain in the ribs in the back. My main complaint is tightness and pulling on the ribs, like I'm being poked in the back with a stick or have a rope tied around me. But I wouldn't be surprised if your muscles and ribs where you are describing the pain are hurting you when you cough.
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Hi ladies,
I looked over many of the posts on pain following LD flap recon and wanted to share my story not only to show support but also to see if anyone has had this particular problem. This is my history which I have posted on other threads.
"I was first diagnosed in 2007 and had L side mastectomy. No lymph nodes involved but because of tumor size I had 4 rounds of AC. A little over 5 years later in Jan 2013 had a very small recurrence in chest wall. No chemo but I did have radiation after the surgery. Fast forward to summer of 2014 I was really noticing that the left implant was changing shape. At the same time my mom was diagnosed with stage 4 Non-Hodgkin's lymphoma so while she was going through her treatment I was to busy and worried about her to deal with my own issues. She went into remission and then was re-diagnosed in May of last year. While trying to help my parents with all of my moms medical issues I ended up in the hospital at the end of June with cellulitis on the same left side. After 5 days in the hospital I went home and the infection cleared up. I met with the PS (my original one retired) and he explained that because of the radiation the choices for reconstruction revision are now very limited. During the fall my mom went through quite extensive treatment and is doing much better which now allows me to take care of my own issues. After my most recent visit to PS I was told I have a stage 4 capsular contracture."
I had surgery March 2nd. Three weeks later I was back in the hospital for an infection at two spots on my my new breast flap. Suture knots were the source. Gladly they infection cleared! I am scheduled to start PT on 5/10 (earliest date I could get in with the breast reconstruction specialist). I have good range of motion and can function fairly well in the morning and early afternoon although I do feel constant tightness in my back/side. Rib pain is pretty bad as the day continues and by the end of the day I am in agony. Last week I noticed a lump under my shoulder blade. When I saw my PS last Friday I told him it feels like a bone sticking out. He looked at it and felt it and said "You're exactly right, It is your rib sticking out." He said the muscles are extremely tight and will/should relax over time. I am praying that the PT can help!! One of the surgeons that was present during my surgery told me that when my PS cut the radiated skin on my "breast" it snapped back so fast that they were taken back by it. Followed by, "You must have been really uncomfortable." I felt like saying No Kidding!! I was also told that my rib pain on my side is from radiation damage. Also, still having shooting pains where I have radiated tissue in the front.
I have very little pain medication left and hate asking for more. Docs seem so paranoid about them now especially in my state. I only use one or two tablets a week when I absolutely can't stand the pain. Otherwise I use Tylenol and once in a while Ibuprofen (It really burns my stomach.) and muscle relaxers. I honestly did not expect that would feel like this 8 weeks after surgery. Sorry for the long rant but I want to let people know they are not alone.
Thanks for being here,
Lorene
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First, as I said on another post, it makes very sad and mad to hear from so many women suffering from lat flaps. My heart goes out to each of you.
My story, briefly:
I was diagnosed Stage I in left breast and underwent bilateral mastectomy and lat flap reconstruction direct to implants three years ago. Since that time, I have been in chronic pain. I've seen a rolfer (love her!), who recently told me it's time to look into holistic pain management. I saw three physical therapists. The last one really helped me by manually stretching my pec muscles. It hurt, but loosened up the muscles under my back and chest. She also focused on stretching before strengthening. Massage therapy does help me, but it only lasts a day. 'Rolling" (I use an actual rolling pin) up and down my muscles does help a lot. The tens unit helps occasionally. I'm learning to be very mindful of how I move in everyday life.
I want you to know there are many women suffering longterm effects from flaps, lat and trams. You are not alone.
And Joanne, I'm wondering why you had a lat flap if you didn't have reconstruction?
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Hmmmm. I was not aware that lat flaps were used for anything but reconstruction. I'm guessing you had a hole in your chest from the excision and that's why the flap was performed?I
I agree about the pain! I had my implants removed in March in hopes it would help, so I'm flat. If I'd known my body would react like this, I might not have had any kind of reconstruction.
I haven't looked back through all of the posts. Have you seen an osteopath?
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Sadly I'm posting on this thread once again. My story is posted a little way back on 5/4/16 on this same thread. This week it will be 9 months since my lat flap reconstruction. I hoped that by now I would be getting back to a more normal way of life. In the past few months I have developed a painful shoulder problem and painful muscle spasms and stabbing pains underneath the reconstructed "breast". I am still going to PT. I was making advancement for a while until this shoulder issue started. Now I'm barely doing any exercises when I go. My visits are largely just deep tissue massage/manipulation, work to break up scar tissue, and trying to get my scapula to not stick out! Instead of moving forward I feel like I've gone backwards. It is impacting every aspect of my life. Fortunately I work in my home office so that at times when I am in a lot of pain I can stop or take my work upstairs and do it while having my back on a heating pad. (Never thought a heating paid would become one of my best friends) My husband wants me to go back to my PS and I agree except for the fact that I don't even know what to ask him. The last time I was there he looked and said everything looked great. It may look fine but it certainly doesn't feel fine!! I have a breast MRI this weekend (yearly one) and I'm dreading having to lay in that position! If anyone has any ideas about what I should explain to him or ask him to do it would be helpful. This whole thing is becoming overwhelming...
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CTLmom, I'm now 18 1/2 months out and still nowhere near normal. But I have gone from crushing iron corset/trouble breathing to "just" feeling like I have a bra on. Things are much more tolerable than they were.
The things that have helped me the most are:
--Grason method for scar tissue and soft tissue work
--therapeutic endermologie (for myofascial release)
--cupping (also for MFR)
--acupuncture
--trigger point injections (done by pain clinic)
The MFR and TPI have had the biggest impact for me. I found that until the muscles and fascia were released via aggressive means/drugs, the PT exercises, and even some of the deep tissue work, were useless and often times aggrevated the tightness and spasms.
I also just switched from trying Advil, which didn't help, to Aleve. The different class of NSAIDseems to work a lot better for me.
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Hi, Jo--yes, I have truncal LE from the lat flap. It's confined to the area around the back scar and to the ribs underneath the foob. It was more widespread earlier on. I'm at 21 months out now.
LE massage by my LE gal helps the back. Nothing helps the ribs in the front. I sometimes wear a compression tank (just a Maidenform shaper tank from Target).
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Jo, yes, try a size up or two up on the shaper tank. You want it snug enough so you get the benefit from the compression, but you don't want it to fit tight.
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You should be able to try the tanks on. If Target doesn't have it, then Walmart or JCPenney should have it or something similar.
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It's definately worth a try. Hope it helps.
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Hello,
I had my lat flap in 2009. It's now 8 years later. Since April of this year I have been having back issues. I had xrays done and there are the normal bone spurs that I would expect to have at nearly 52 years old. The reports said mild to moderate. However, I have been seeing a chiropractor and also a massage therapist. The chiropractor has been unable to pop my back because of the tightness. Muscles relaxers do not work for me at all. I was supposed to try 1/2 then a whole if needed but to beware that a whole would knock me out. It didn't. So I don't take them. I can only take tylenol for pain as my tummy cannot handle nsaids. That's ok with me as I hate pain medications they make me sick. I am an active person often hauling in rock and all sorts of things to keep my yard beautiful, always creating new flower beds...a shovel is my friend....or at least it was. The chiropractor also physical therapist last week said he thought my abs needed work..so we worked on physical therapy for my abs and the next day I did all the ab work he had established for me to do at home. OMG!!! I am now back to square one of pain. It is a zapping pain that hits without real reason and causes my knees to buckle. It wasn't until today when having my deep tissue massage and explaining to the lady what had occurred that I thought about this surgery being my culprit. She told me that I have many adhesions and much scar tissue. I see the chiropractor thursday and am going to report all that I have learned here to him. The reason I do not think it is from weak ab muscles is that my abs aren't sore one bit from all that work. I am sad to think this is the new me. I refuse to accept that. I am going to learn all I can. Thank each of you ladies as always for being so amazing in sharing this terrible journey where our bodies became our enemies. We beat cancer we are warriors!! I am going to see about a cane because it hurts to fall and yoga dvd to learn to stretch correctly. My hope is I caught this in time that I can still regain more mobility. Also I bought the lotion my physical therapist uses. It is called Sombra warm therapy natural pain relieving gel. I think it has some of the same ingredients as the person using the .97 cent walmart patch. Best wishes to all
Bellz
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Hi ladies,
Well in October November 2015 i had bi-lateral mastectomies with lat dorsi reconstruction.
My decision to have this option was due to lower blood loss. After the first surgery (each breast done separately) once i got home, the sensation under my arm was awful. Not painful, just "yucky" sensation, a feeling of a lump under my arm plus a sloshy feeling. I really thought that i may not go through the recon on the second side, but i did, the second side was a problem from the start! Infection, deflated expander...anyhow... i have got used to the tightness in the morning and the feeling of lumps under my arms. Now my left side feels tender around the outer edge (circumference), and appears smaller, it has been almost 2 years, is it normal to get on and off tenderness?
any experiences appreciated.
Jen
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All i can say is not a day of comfort in 8 yrs this month. My boob feels like it is exploding. I must keep a fine home for scar tissue...been through it all. Had implant removed in Jan 16. Tried again this past April..dr. will be doing something cosmetic because of the way breast fell in three weeks.....i feel like a ball is hanging and ripping. Always..even when I went flat I had issues... went the whole gamut. I also went off my pain pills...just wanted to share...its been awhile since I have posted because I am angry and tired....thank you for letting me vent.
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All i can say is not a day of comfort in 8 yrs this month. My boob feels like it is exploding. I must keep a fine home for scar tissue...been through it all. Had implant removed in Jan 16. Tried again this past April..dr. will be doing something cosmetic because of the way breast fell in three weeks.....i feel like a ball is hanging and ripping. Always..even when I went flat I had issues... went the whole gamut. I also went off my pain pills...just wanted to share...its been awhile since I have posted because I am angry and tired....thank you for letting me vent.
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ronqt1, I'm sorry. Vent away!
I'm in the same discomfort boat, but 2 1/2 years out. I don't anticipate any improvement going forward. The iron corset tightness is a little better than it was, but all that means is it's vaguely tolerable while dressed and while lying down.
Thank you for sharing that going flat didn't help, b/c some days I contemplate taking out the implant. I wonder if it would help the constant feeling of a rock duct taped to my chest, but it doesn't sound like it would.
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Hi, Jo!
Oh gosh, that's scary about the heating pad burn! Thanks for the heads up.
My rib tightness is constant. I do get actual pain in the donor site and ribs when I exert myself, so I wouldn't be surprised if your coughing causes more pain.
Yeah, I'm sorry we are all still here too. Like I said I'm better, but it's a relative statement. It's still really bad. I recently read through the post-op visit notes from my PS, and she talks about how well I've healed and how all the PT I've been doing is helping so much. I think she's afraid I'm going to sue.
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this looks like an old thread, but for whatever it’s worth, I had a mastectomy/lat flap in December 2016 after chemo. Severe scarring and pucker from back incision. Back and shoulder pain. Had back repair and implant in June 2017. Significant back and breast pain since then. PT has helped (cupping) and am doing modified Pilates. Have had second options about what to do because the pain is causing a lot of fatigue. After research, I think it’s from scar tissue. Anyone have similar experience and what dis you do
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Hi, sistergal. I've had a lot of trouble with the back scar feeling very restricted, and general fascia restrictions in my front, side and back. I don't have pain per se, but rather overwhelming tightness, movement restriction, and the feeling of being taped up with duct tape.
In addition to cupping, I found that therapeutic endermologie, which is another mechanical MFR technique, helped.
Since you mentioned Pilates, I wanted to share this post-lat flap Pilates info I found. You may have already seen it or be doing something similar to it. I haven't tried it yet, just because after almost three years and 13 rehab people I'm getting tired, but it looks like something worth checking out. It's a PDF on the web, and is written by a Pilates instructor who had a uni lat flap.
https://d3a512p2kajs89.cloudfront.net/media/paper/...
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Dear Paulina, I read about your good experience with LD flap reconstruction with 2 mths. I'm at the end of my 3rd week into it have a lot of tightness on my right breast and right back. I sleep sitting up, can't lie flat on the bed. I tried to do light stretching, that helped to increase my mobility slightly but causes more pain and times. I feel like my right arm is paralysed. Could you share what you did to get such a good experience?
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Someone please help!!! I would like to talk with someone who is living a NIGHTMARE of chronic pain and life altering disabilities after having a Latissimus Dorsi Flap Reconstruction! I don't live in an area where this is a common reconstruction and I have nobody to talk to that has been through anything like this before or could possibly relate to how it can affect a woman's life. I traveled a long distance to have this surgery because I felt the outcome was going to be worth the inconvenience and expense. I was wrong! I really would like to talk to some of the women that have posted back from 2012-2016. Does anyone know how I can get in contact with them? If I didn't know any better, I would have thought I wrote those blogs. My experience and what I have tried to do to heal and to break down the extensive adhesions has been a LIVING HELL!
I had a bi-lateral mastectomy with an Extended LAT Dorsi Flap Reconstruction in February 2015 in Boston and my life is nothing like the way it used to be. I was physically strong, fit and worked very hard all my life and to have my quality of life and independence robbed from me is not acceptable. I have tried Physical Therapy, Occupational Therapy where they taped my aggressive 10" LAT Incision, Craniosacral Therapy, Soft and Deep Tissue Massage, Myofascial Release, Graston Technique, Acupuncture, Chiropractor, Aquatic Physical Therapy, Heat Ultrasound Therapy, TENS Therapy, Pain Management (muscle relaxers), massage rubber ball and strengthening bands, strengthening exercises, numerous pain ointments, creams, lotions, essential oils, patches, ice, heat, gabapentin, supplements, pain meds, and list goes on. Currently, I have been 100 times since 23 Mar 2015 trying all these different techniques and I am still currently doing the deep tissue massage along with heat therapy. There is a reason why nothing is working.
The Boston plastic surgeon was appointment to me since I was unable to get the plastic surgeon I wanted. Be careful when a surgeon is available; there is a reason they are available. Unfortunately, it's too late for me. The bottom line, I was not informed of any of these disabilities and how it was going to change my life and I asked all the right questions! They sell a procedure that affects the quality of life in women just so they can make a profit. For everything my mastectomy surgeon tried to do to save my life, the arrogant, over-confident male plastic surgeon took it all away! How does a woman regain the trust of a surgeon when you find out that everything he told you was a lie? He told me that I wasn't going to notice this Latissimus Dorsi muscle gone unless I was an Olympic swimmer or mountain climber and I wasn't going to need physical therapy. On a follow-up visit, I expressed how painful it was when I had two physical therapists working on my back, LAT incision, and ribs using the Graston Technique, he told me no pain; no gain. He did not recognize his limitations and by doing so caused extensive harm and ruined my life! He has no compassion for a woman's needs or outcome. I have a list of all the lies he told me but I won't share them here.
I look like and feel as though I have been through a slaughter house or was attacked by a grizzly bear. The muscle spasms, tightness, and restrictions are terrible! I am so disfigured. The pain when sitting and lying down is horrible. My skin is so tight (too much skin and all the fat was removed; miscalculation on his part) and thin on my back that it adhered to my ribs and under lying tissue causing severe pain, burning, stabbing pain, constant tightness, and severe muscle spasms which causes difficulty breathing, pulling, weakness, intense stinging, and severe sensitivity. Due to the restriction, I now have chronic lower back pain on the side of the LAT Dorsi Flap reconstruction. I am still unable to sleep and maneuver in and out of bed, and it left a unbelievable huge cavity under my 10" horizontal incision across my back and around under my breast. The front doesn't look any better than the back. I was aggressively cut 24" around my body. I don't know where to put myself!
I had extremely strong upper body strength. I did a lot of physical work in and outside of my home and around my property for years. Nothing stopped me up until Feb 2015. I struggle when I go to do something that I always was able to do prior to this surgery. Just because women are diagnosed with BC does not mean that we are subjects to practice on considering the alternative. The quality of life following such surgery is as equally important.
It's been a LIVING HELL ever since. My life the way it was no longer exists. This surgery has affected every aspect of life!!! I live alone and struggle everyday due to the pain this horrendous surgery has caused.
The fact that we cannot mention the plastic surgeon/hospital that performed these horrific surgeries and traumatic outcomes only allows more women to be butchered and robbed of their quality of life. Aren't we worth more than that? Women are being butchered every day and our voices are silenced by the surgeons responsible for this torture. How can we protect other women from going through such torture if we cannot warn them who to stay away from? It's inhuman! What happen to having ethics and morals?
I firmly believe that when you act with compassion you will never be wrong. This Boston surgeon had NO COMPASSION! He was heartless and did not care! I feel so alone and helpless!
Can someone please reach out to me that are struggling everyday as a result of this horrific surgery?
Thank you,
Harmed16
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I just PMd you! I am in the exact same way as you are. This surgery should be illegal. I would caution any woman considering this to try something else. If something goes wrong, you're disabled....I too can hardly function any longer. Unbearable pain. I am so sorry, Harmed16, I am here for you. Please reach out to me.
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Hi NotThereYet,
Thank you for reaching out to me. I agree this procedure should be illegal but what is it going to take? Even with our horrific outcomes this procedure continues to disable women all for a profit. It's inhuman what these incompentant surgeons do to the quality of life of women!
Harmed16
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Hi Joanne,
Thank you for your response. I understand why you would stop PT. If you gave it your best and it didn't work, why continue? My physical therapist felt she was causing more harm by increasing the muscle spasms and inflammation. Maybe for some women it worked but we all have different situations.
My life is nothing like it use to be due to this botched LAT Dorsi flap. He totally miscalculated and lied about everything. What I don't understand is how the LAT Dorsi Flap saved your life. LAT Dorsi flap is a reconstruction of the breast.
I don't consider myself alive. It's Living HELL! My quality of life and independence was robbed from me due to an over-confident, arrogant, know-it-all Harvard Plastic Surgeon! He had way too much pride to admit that he screwed up. It has affected EVERY aspect of my life.
I can't wear even small breast prosthesis because they are too heavy which causes increase pain and pressure on my 10" LAT incision. I already feel as though I am carrying around two severely disfigured cantaloupes which are stuck in an iron bra.
It's something when you think of plastic surgeons, you think of perfection and beauty because that is what they try to sell. When in reality, it's just the opposite of everything they represent.
Harmed16
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I had my lattismus dorsi flap surgery on 2/8.I am still healing from the wound that opened up on the right now I have somehow pulled a different back muscle. I have a Seroma and every week They are sticking needles in my back weekly to remove excess fluid.
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I had my surgery on 2/817. And it was brought back to mind that I also had to have excess fluid removed from my back. Did you have the lat flap done in 2018?
It's been 14 months for me and most of it has been a train wreck!! Today is a bad day with the tightness. Most days are tolerable. I'm thinking about having my implants taken out strictly to see if I can find some comfort.
Hoping all goes well for you!
Dianna
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