Pain from Latissimus Dorsi Flap Surgery
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You worked at a chronic pain clinic what did they do for the major amount of pain from the surgery I can't live with it anymore and they're talking about taking the opiates away without those I will die as these barely work to relieve the pain anyways I have been in my bed for now 5 years I can barely sit in the chair for more than 10 minutes I can do no housework I can do no gardening I cannot show my dog's any longer now they're just house dogs because I can't even walk them this pain is not getting better it's getting worse and I just want it to go away they're sending me to a pain clinic and they're going to do a procedure buy numbing my nerves they don't know if it will work I'm scared to death because they're taking me off of all of my medication and it just started working I have no quality of life it is completely gone and I really don't believe I'm the only one out there going through this this operation has to stop they cannot keep doing this two people and tell them that they're going to be fine and it's just a muscle that if you're a Olympic skier that's all you need it's a muscle that helps me pick things up and put things over my head I can't move my arms and then do that I feel like everyday I wear Bob wire bra I don't sleep at night but doctor says it's no longer cancer-related so she can't treat me for pain any longer so I'm going to the bank Lending so they can do procedures it have no idea what the side effects are they said it may or may not work but they're still taking my medication away this is so cruel and I'm so scared I can't live with this pain I hate the beds but I have them I have never been so afraid in my life because this really isn't it doesn't work going to be the end of itdo they really think that we don't feel the staples stretching our muscles forward my ps did not tell me until after that I will be in pain my whole life until I went back and he got very angry at me for not being happy with the results
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Dear L,
I feel such pain in my heart for you and all the women that have been fed a lie and butchered. I want to give you some hope. I was told multiple times that I should apply for disability and just stay home. It was years of hard work and I still deal with the aftermath of this terrible surgery. I had to move and I've had to work through exceuciaring pain. Talk to your doctor about gabapentin. It's the only thing that's helped the nerve pain. find a stellar massage therapist who can start deep, albeit painful, massage. Baby steps to recovery. I remember lying on my couch and I didn't move a muscle because it hurt too much. I never wanted to move again. I wanted to die. I understand. I even consulted a top-notch surgeon in Michigan to ask if the surgery could be reversed. He was kind to speak with me on the phone. He told me it had never been done. I knew I had to keep going if I wanted to have any kind of life again. I tapered off the narcotics because they were scary and looking back I realizethey weren't helping as much as I thought they were. I want to hear back from you.
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Reading these posts just makes me more angry. I, too, was never warned about the possible outcomes of this surgery. I had a double mastectomy, lat flap direct to implants in 2013, and also have chronic pain.
I jump on the boards every now and then to see if anyone has found an answer. From what I continue to read, it seems if one has unrelenting pain after the surgery it never completely goes away.
Lisa58, you mentioned that gabapentin helped with the nerve pain. I'm wondering... how are you feeling now and are you still taking it?
I'm so sad that all of us are going through this agony. I will continue to keep searching and let all know if I find relief from another treatment.
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so I am a little different, while I don't have cancer, I do have the muscle flap and have been searching for others who deal with chronic pain to help find answers or solutions. I had a major spine surgery And ended up with rare infection, a literal hole in my neck, and was to have surgery immediately. No one explained the after effects at all. Said 4-6?weeks be back to normal for most part. Since surgery in November I have had some sort or pain and more days than not the spasm are so bad I can't function, the paiis like nothing I have ever experienced. From mid back, low back, hips, and thighs. Got so bad thought infection was back so went to see Id dr and he said oh all that is from your lat, you need physical therapy and should have started after surgery.so with pain has come depression, major weight loss with muscle wasting, isolation, and inability to perform 100% as a nurse. So was just wondering who else had some of the problems I have even though used for different reason.
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Hi Lisa58,
I have read all your posts and I understand exactly what you are going through! I feel your pain like a lot of other women on this blog. This horrific procedure should be banned if this is the best they can do. We are worth so much more! How is a woman suppose to feel whole again if they slaughter us so bad that we are left grossly disfigured? I have tried to connect with you privately but I have been unsuccessful. I hope to hear back from you.
Harmed16
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Hello Ladies,
Have any of you ladies looked into or may be went to New Orleans Restorative Breast Center to see if they had anything to offer to fix a botched LAT Flap reconstruction? I would really like to hear your story!
Thank you,
harmed16
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harmed16- there is at least 1 lady who did. Her photos are in their before and after photos and she is the case study at the end of this talk done by Dr Dellacroce:
https://m.youtube.com/watch?v=lGmoI21Tfbc
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Hi Lula,
Thank you for taking the time to respond to my blog! This is helpful!
harmed16
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I also had double mastectomy with reconstruction. Due to complications from radiation had latissimus dorsi flap on one side. I also suffer from severe muscle spasms on both sides but especially on the flap side. They feel more like a constant Charlie horse, especially when I do twisting movements. I’m having first round of trigger point injections tomorrow. I have constant pain under the flap “foob”
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Lula73 thank you so much for sharing the video. That gives me hope.
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Jo, make sure it's not the problem I had. They only were able to see, years later and when I had lost weight. MRI showed that they had torn the fascia on the underlying abdominal oblique muscles and they were herniating, causing also some organ displacement as the abdominal wall wasn't contained anymore on that side. I also itch like crazy on that scar
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I was diagnosed in 2013. I had a bilateral mastectomy with complications and lost the left expander. Because of that I had a flap surgery to reconstruct that side. My question is how long do you have rib pain? I am 4 years out and still suffer from a sore rib type pain. It is not a constant pain but it does come and go often. Is this common with this surgery? It is so frustrating to constantly have some type of pain because of this surgery!!
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Pamelapugh
That’s awful. Did PS ever send you for PT when you first complained of pain after initial surgery??
You should insist on some diagnostics and coordinating therapy to get to the bottom of what’s happening.
My lat flap relatively new but I do NOT have any rib pain.
Wishing you some answers.
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hi all. I can relate
I was diagnosed with BC June 2015 due to oestrogen. I had surgery to remove and 3 lymph nodes. 2 wks later further surgery to remove all lymph nodes in left arm as cancer had spread. It then transpires I have the Brca 2 gene (breast and ovarian cancer) I was advised that I need hystorectomy and double mastectomy as the cancer will return.
So I started chemo October worked all way through it until 4th treatment I was rushed to Beatson 12 days with sepsis. I then finished chemo December 15. Jan 16 to Feb 16 radiotherapy. I commenced treatment to shut ovaried down until April 16 full hystorectomy. I then commenced Letrozole (10 years) it causes me intense joint/bone aches. I also get severe flushing from menopause to the point im going to collapse then Sept 16 double mastectomy with latissimus dorsi flap and reconstruction with implants.
My lungs collapsed in surgery and my skin broke away so they had to take more skin from my back and put spacers in. The pain was and still is unbelievably intense. From Oct to Dec I got injections to stretch skin. The whole time I struggled with walking due to pressure on my back and spasms on my front and side.
April 18 they removed spacers and I got implants. I had haematoma and got rushed back to Surgery. I was then overdosed with meds which affected my liver so I was kept in for 10 days. I then took small infection but once cleared I went back to work 4 months later. I used holidays to work part time but i struggled every day sue to pain on bones and also severe front and back ache. I've had physio just keep doing exercises (don't help) pain clinic cant advise anything further. Acupuncture didnt help. I've now been diagnosed with fibromyalgia I also now need b12 injections 3 monthly and have muscoskeletal aches and neuropathic pain. I was sent to breast cancer place for massage I went for ist appt and after 15mins light massage my back and side had sever spasm my implant moved. It has now detached from muscle and is moving under my arm. I now need surgery to stitch under my good arm to stop it moving again and to reposition the implant.
I have now put in for ill health retirement as I struggle on a daily basis with tiredness and pain. I bubble quite a bit for no reason (not about cancer as im not that bothered about that) it's because I'm not me. I was a worker done everything. Now I can't even pull myself off floor or chop carrots etc. I'm a shadow of what I was and I'm getting worse not better.
I wish I never had ops but it wasn't an option. I've to go back to occ health Jan 19 to see if I qualify after getting new pain and anti depressant meds started oct. This is now dec and I'm still the same. I'm not bubbling every 2 mins though but still not same.
Im 41 hand 8 year old and 12 year old. My mum has moved in with me as I struggle with everyday things.
The occ health was initially dismissive as she said your too young to retire but it was my gp that adv me. He sent report so I'll wait until Jan.
I would really prefer if I wasn't in pain and forgetting everything at work (senior who gives advice) as I would never have pursued this but I'll wait and see. Is there anyone else in same sort of position
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Hi, JO-5. I had my implants removed on November 14, 2018 and must say I do feel better. There was a lot of scar tissue surrounding both implants. Unfortunately, I still feel very tight from front to back.
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I posted this on a new topic but figured I would put it here as well.
On 12/18 I decided to have my PS remove my implants and just do a lift on the non-lat flap (right) side. I wasn't expecting it to cure my back pain from the lat surgery but I was hoping for a little relief from the pulling and tightness on the lat flap side (left). Healing was going along well until last week when the right side developed a skin infection. Fortunately I noticed it right away and was give oral antibiotics to treat it. When I went in to see the PS he drained 70cc of fluid out of the left side. Four days later they drained 10. They wrapped me in an ace bandage with some padding to try and compress the area but because of by back pain I had to take it off after a few hours.
This whole thing is so frustrating! I feel like my back pain is getting worse especially since not doing PT while I'm healing. I know the scar tissue and adhesions must be getting worse because they're not being worked on! I know other women have chronic back pain after having the lat flap done. I guess I'm just tired of being in pain constantly!
Sorry for just griping but this pain has just overwhelmed me today.
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Hi Andersong1,
I wanted to cry when I read your post as I can relate, as with all other members who have ongoing issues and pain following a lat dorsi. I am in the process of actively trying to do something about it (will see a female plastic surgeon asap!) as it really has and still is affecting my day to day life in a horrible negative way!
Will keep posting if I have anything to share!
I hope you find some relief and please believe me when I say, we really are all in this together!
Big hug xxxxxx0 -
hi!
New here but am a 22 year survivor of breast cancer. I am still in terrible discomfort intermittently from the ‘failed’latissumis dorsey flap reconstruction.
The plastics doctor thought that at 92 pounds I was too skinny and small for an implant underneath the muscle and I had not an ounce of fat as I was ill. He told me once I had gotten weight back on that he could match an implant to the other side if that’s what I wanted. My oncologist said ‘ no way’, you’re on chemo now and infection we don’t need’. Made sense to me. So we figured later on down the road.
Well, I continued with the ‘ walking my fingers up and down the all’ etc and then one day it sort of snapped! And from then on, whenever I strain myself or raise my elbow too high ( as in shoulder height) I suffer sometimes for weeks. During my surgery the plastics guy punctured my chest wall so on top of all else I had a chest tube keeping all the drains company. I’d have been better off without the reconstruction, believe me. It left a huge gaping scar across my back and discomfort for life.
The breast surgeon who did the mastectomy stated that she will never work with that plastics group again ever and she never has. She was excellent. She also said that I was fine when she left me. By the time the plastics folks were done with me I was in post op with a collapsed lung.
So, I feel your pain, both figuratively and literally.
Be good to yourself and gentle with yourself.
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After visiting my onc for my yearly check up she talked to me about my constant back pain and then gave me a referral to a new cancer rehab specialist she has been working with. Apparently she is young and thinks out of the box when helping women dealing with the physical issues after cancer surgery and or treatment. I see her on the 11th. I pray she can somehow find and answer to this nightmare! One thing I told my onc was that my 2 visits to the pain med clinic only resulted in 3 different prescriptions. I didn't get a thorough physical exam of my back and movements. She said that this rehab specialist would definitely be doing an extensive exam. I also have been approved to start PT again but unfortunately can't get in till next Wednesday. In the mean time I feel like my shoulder blade is being sown to my spine!
Oh well, as I read about so many of the ladies on this thread, it seems that we are all suffering with pain after this surgery to one degree or another. It is hard to believe that more studies have not been done to show long term outcomes from having this done!
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Joanne
I too have hip pain that comes and goes on the outside of my hip and is the same side as my lat dorsi flap I had done Jan 2018. I didn't think there was a connection....but perhaps there is...
I also have lower back pain. Just had a recent bone scan. All clear. My body is tired and beat down...I'm on cycle 8 of 8 of Xeloda this week...I'm hoping I feel better when I am done
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Jo, I have a lot of pain and strength issues with my hip on the LD side. I didn't think of the connection until you mentioned it, but it must be related. I had an MRI done of the hip, it was so bad, and I do have a small tear in the labrum, along with bursitis. But I wonder if those issues are a result of using that hip incorrectly while I skate now due to the LD flap issues.
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Jo I have BMX, implants and a single sided lat flap. Huh?
Honestly BMX, ooph and Arimidex contribute to way more pain than this lat flap ever gave me!
Where does the Lat Flap contribute to hip pain?
??????
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I had a flap 8 years ago and have had pain across the bottom of it in front the ribs in front the side and back the doctor feels coming from scar tissue. I had several steroid type intercostal injections with ultrasound hat have helped from a pain management dr I feel is good try that if not good try a different dr and see if that helps it's probably the scar and intercostal rib nerve pain and might help at least some and need to be done periodically. I also had quite a bit of shoulder pain for a while but it finally settled down. Best Wishes ! And overall I think Hospitals should track outcomes to see if surgery needs to be banned do to back issues as I am not cured but improved.
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Hi there, Crannie1000! We want to welcome you to our community here at BCO, and thank you for sharing your story. We're so glad to hear that you found something that helped with your pain, and hopefully your suggestion helps someone else!
The Mods
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Thank you for your inspiration.I had this surgery done 20 years ago, and it has ruined my life. I have tried everything for the pain, the gabapentin makes me feel loopy I can only handle 600 mg and it does nothing for my pain. I am getting worse as time goes on, more areas of my body are not functioning, my biggest issue has always been that I can't sit, I had to go on disability. I am not the same person I use to be, I am miserable, I hate life, I have so much anger that this is how my life ended up, and I feel as though I will be dying soon. I had the surgery done when I was 36 I am now 56 and am going downhill fast, it really sucks all this because of breast cancer. I would of rather just died then instead of all this suffering
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I have had pain from the LD surgery for 20 years now, and have tried everything. I can't sit my sides burn so bad. Has anyone ever heard of the block therapy a friend of mine told me about it they have a group on facebook i'm just debating if I should spend the money and try this. I have tried everything I am running out of things to try. I really don't know how much longer I can live like this, unfortunately leaving this planet is looking better everyday, as I have no life living like this
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rylisa, are you talkin about nerve blocks? Can’t hurt to try
I’m sorry you’ve been through 20 years of this, and totally get it. I honestly wasn’t that upset with my post-LD flap brain mets state IV diagnosis bc I figured I didn’t have to suffer through decades of this crap then. How awful is that.
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No. I have had nerve blocks. It's an actual block that you buy and they have videos, or a block therapist, but there are none in my area, and you lay on the block and do deep breathing. I was just curious if anyone has ever heard of this.They says it breaks up facia. I have spent so much money on different stuff to try and was wanting to know if anyone has ever heard of,, or tried this, before I spend more money for something that doesen't work
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Thanks for the explanation. I haven't heard of block therapy. It doesn't sound like it would help much, frankly. I looked it up, and it’s literally just a block of wood. If you wanted to try it, it seems like you could just go buy a cheap block of wood at the lumber store and lay on it.
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Hi Ryalisa and Nash,
Quite confronting to read yr posts.....and I too can so relate to what you say! This surgery, for some, really does mar yr life! I had a lat dorsi in 2014 and regret it more than words can say. I am angry at my surgeon who blatantly lied to me about this procedure which, I now firmly believe, was to keep his skills for this type of surgery. I am writing to the Assoc of Plastic Surgeons in Australia and will cc the hospital where I had the surgery in the hope that they may look further into this - I weighed 49 m/50 kilos when I had my surgery and this is not a surgery for lean/smaller figures! I will not let this go as Plastic Surgeons need to be held accountable!
I do know that the anti estrogens can exacerbate lat dorsi pain with effected tissue and vascularity changes.
I live in hope and am sure there WILL be some options/relief for us soon!
Hang on in there girls, you are NOT alone!
😘💗💗
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