Latissimus Dorsi severe pain!
Hi everyone,
I am new to this forum. Nice to meet all of you! I am interested in finding out if any of you have had reconstruction using the LD? I have been going through reconstruction for almost 2 years now... The pain has been so intense and has really changed my life. I am very limited to movement particularly on my entire left side. I can not lift or move my arm above my head, out to the side or behind me. I have tightness that gets worse the more I move, burning pain across my chest, the shoulder blade, a creeping feeling down my spine like something is dripping down the middle of my spine, I have been unable to lift using my left arm and have to walk carrying my arm close to my stomach when moving at all . I can not walk very far, sit very long, bend, twist, I don't sleep well and have become very depressed at the fact that I can not longer do anything I enjoy. The more I move... the more intense the pain becomes. I hate taking pills but I am on at least 15 medications. I thought they were not working much and tried to go off them but the next day after stopping nerve blockers and pain meds, it was so bad could barely get out of bed or walk it got far worse thought the day. There is some relief with the nerve blockers and pain meds, I guess I just didn't realize it until I tried to stop. Taking them helps for a very short periods of time but as my day goes on I am down and can't move or get up again. If I stay completely still, I'm ok but at night it's been difficult for the past couple years to sleep as well... At times my shoulder is burning as well as my lumbar spine down to my lower back, I go numb across my chest and entire left side, my fingers and toes go numb. I feel a lot of pressure and swelling in both breasts and left arm with shooting pain in the breast, shoulder down the arms and mid and lower back. I have expressed this to all my doctors over and over and they have seen my limitations but nobody seems to be able to answer me and says they have not heard of this happening. I know there must be others out there. I have tried physical therapy, injections, stretching, ice, heat... I am just so frustrated this is worse then all the treatment and surgeries I have been through.
I am looking to connect to anyone who may have similar problems after LD. Please feel free to email me or drop me a note
Thanks
Edited by Mods to remove email address. If you'd like to connect in privacy, please use our Private Message feature. Thank you.
Comments
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Hi, and welcome! I have had many issues with a unilateral LD flap done almost 10 months ago. My problems are considered abnormal, and yours sound even more extreme than mine. I'm so sorry, b/c I know how bad I feel, so I can't imagine even worse.
I had the LD done b/c of a recurrence in a previously radiated breast. Post-LD, my primary issues are tightness and ROM issues in the surgery side torso and shoulder and "iron bra" on the surgery side. I do have some pain and burning, but it's tolerable. I am a competitive adult figure skater, so I went into the surgery with good ROM and strength. In fact, probably too much upper back/lat strength, b/c my PTs think my issues mainly arrive from too tight muscles to begin with.
Can you outline what you have done in PT so far? I made some progress in PT at first, then plateaued for about four months until we ramped things up and tried some different approaches. Over the past couple of weeks I've finally started to make some forward progress. I'm hoping that maybe something I've tried might help you.
Gabapentin and Percocet did nothing for me. I've got a compounded cream that is helping. and I can share the rx if you want. Ice didn't help in the beginning, but I'm finding that as I've started to make progress in PT, the ice is helping finally. Heat doesn't do anything. Stretching made things a lot worse in the beginning, but as PT is more on target now, the stretching is helping. A lot of my problems stemmed from muscles spasms, and PT/massage made them worse until we got them under control.
Feel free to private message me through this site as well.
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Hi Nash,
Thank you for replying! I have to say it's not been a easy road... First off, my mastectomies were done a year apart. Just before the left mastectomy was done I was told to have a complete hysterectomy. It was determined that it would help me since they found several dif. Cancers and one of which was more than 8 years old and had gone through the LN's on the left. I am borderline with a 50/50 chance of survival past the 5 year mark and am high risk for reocurrence due to Ki67 of 15 and other factors of my cancers. My Rb score is 7out of 9...after chemo and 33 rounds of rads. I had a right side profolactic mast. and tissue expander was placed so that when they did the LD procedure on the left the right would be heeled and easier to match plus I was naturally a D cup. It would have taken far more tissue to go to my normal size so I opted for big B, Small C. they started my Ld flap In April 2015 they did the LD flap recon. And placed a tissue expander. I had a horrible time and developed painful lumps all around the right side and capsular contracture on both sides. Since then I have had 2 revisions and both times developed blood clots on the right 10cm the first time that almost killed me, then again after the 2nd revision... Needless to say I have changed Ps due to a badly botched job.. The implants he placed are not what I requested and I still feel like there are tissue expanders on both sides. The right implant is to wide and that breast is much smaller then the LD side yet everytime I mentioned this he would just yell at me and tell me I was expecting to much
Through all this I had very limited use of my left arm and unrelenting chronic pain. I was sent to Pt several days a week for about 3 weeks only to have the pain worsen and limit me even more. They did tissue massage, streatching, finder climbing and many other things. By the next day I could not move at all and the pain was worse then ever.. It became so bad they did not want to continue and either did I. I went back to my doctor and told him what was going on he said he would send me to another pt as he felt the first one was not being tough enough on me. I will never forget his comments, I want you to go to a Pt that will make you Cry.. I didn't go... I ask my spinal surgeon to have a MRI done on my left side and provide a update on my spine. When it all came back it showed a hemangioma in the thoracic spine at the point where my scar was, the shoulder showed moderate rotocuff tedinosis and takes, moderate ac joint arthrosis calcific tendinitis, bursitis and adema. I have also gone through nerve testing they found extensive nerve damage in both arms, ulmer nerve damage on the left and my neurologist experts that many nerves were damaged during the Ld procedure on my left through all the surgeries I have had. I now have heart disease, my left lung has scaring from rads, I have a enlarged liver. am on 600mg 2 times a day Neuronton, meds for panic and anxiety attacks, depression, hashimotos, b12 shots, spinal, shoulder and hip shots. Heavy duty sleeping pills, I am on tomoxifin due to the ai's adding more pain in my bones and joints. i am mirapex for RLS, All this since my diagnosis. My spinal problems have been ongoing for many that has been progressing rapidly. The past 2 years.
I really would like to know if I am the only one going through all this or if there are others out there. All I know is my Life is not the same. I have to use a wheelchair if I want to get out with my husband, I can even make it through a grocery store.. Or the mailbox for that matter..
I realize that there is nothing you can do but if you hear any similar stories please let me know. I just want to know that I am not the only one and would like to know how others are doing and what was found that may have helped them.
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I'm so sorry you've been through so much. Glad you got a new PS--the first one sounds like quite a jerk. I have radiation scarring on my left lung, too. It took years to develop. Fun stuff.
There are different threads on bc.org about lat flap problems that you might want to check out:
https://community.breastcancer.org/forum/44/topics...
https://community.breastcancer.org/forum/136/topic...
https://community.breastcancer.org/forum/44/topics...
Did your PT do any sort of manual therapy? The tissue massage and stretching did nothing for me until the PT started working on rib, spine and shoulder mobilization. And by working on, I mean physically moving my body parts for me to get release. I also see a physiatrist (rehab dr) who does similar hands on manual therapy. Another type of dr who does manual therapy is called an osteopathic manual medicine dr. It might be worth it to see if that route could help you. This surgery can do a real number on one's back, especially if you had spinal issues before.
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hi I am so sorry to barge in in your conversation but I read this post before I went for my reconstruction appt today and the LD was my option to have however it sounds like the LD is quite painful and also ongoing with pain too.......
Would anyone out there recommend this operation or would you say no ?
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Hi, Pinkwings! Welcome. The vast majority of LD flap ladies are very, very happy with their results.
The minority have issues. I think my issues mainly stemmed from having very tight muscles to begin with, which became very strong from 40 years of competitive figure skating. The surgeon had even said she had a tough time getting my lat to stretch around. Also, preexisting back issues seem to make things worse for some people after the surgery.
The thread I'm linking below would be good for you to read through--it's a very lengthy one about LD flap reconstruction, and almost everyone there is very pleased with their results.
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hello I just wanted to say thank you so so much I must admit I read your post and it put me off having the op so changed my mind at the last minute I am so not sure if j have made the right decision in having an implant I shall read the thread you have sent through and see how I go thank you again for replying Pinkwings
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You're welcome, Pinkwings. And yes, please don't make a decision based on my experience. Every reconstruction option has the potential for long-term issues, and it's important to know what can happen. But also know that you can have issues with "just" the mastectomy ("iron bra" syndrome, shoulder issues, Post Mastectomy Pain Syndrome), so there are no guarantees or easy answers to any of it. Everyone's body reacts differently.
Also, I have an implant with my LD flap. I think many (most?) women do. So if you want to get away from an implant, you'd have to do DIEP or SGAP or one of those options.
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I am so sorry that you have also had so much pain from the lats flap procedure. I had it done bilaterally in 2004 at age 26 for my stage I breast cancer diagnosis (I recurred locally in 2013 and underwent radiation and chemo then) and also have had chronic back pain, mostly muscular may since then. I wish the surgery was banned because it pains me to hear of so many people have issues with it.
It has gradually gotten better over much, much time these past 12 years. Massage and myofasical release, stretching, postural training, strengthening of the core and legs, Yamuna body rolling, acupuncture, and great ergonomic set ups at work have been key to getting it a bit better although it is still a daily struggle and something of which I need to be mindful every minute.
Best- Trisha
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Hi, Trisha! Welcome to the forums.
I'm glad to hear that things have gotten better for you over time. That's encouraging. But yes, it sure is something that is a daily struggle and something that one has to be mindful of at all times. I tell my friends that it has become a full time job to just be me.
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Hi Nash! I have not tried some of these thing and will look into it further. I had read somewhere that about 30% of people who have had this type of procedure experience shoulder problems and Rom issues. I wish it was only my shoulder.... I didn't read that prior to my procedure. May I ask how long your scar is on your back and do you have any other scars on your back when they did your Ld? was your scar placed so that it covered by your bra? I can't even wear one or the pain gets worse and I swell up causing numbness across my chest and down the left side. My scar runs from just below my waist on the outer left then runs diagonally to the center of my spine above where my bra would be. I also have a 5 inch scar that starts at my upper left shoulder and runs down the side of my shoulder blade that I was not expecting. I have not seen any other photos like it.
Donna -
Hi, Donna. I haven't seen lat flap scars like you are describing yours to be. My solitary scar is about 8 or 9 inches long and runs parallel below my bra line. At first I was annoyed it wasn't at the bra line so it could be hidden (not that I run around in bikinis much), but now I'm kind of happy b/c I think the bra band would irritate it.
Yes, please look into the manual therapy route. I think it might be something that could help you.
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Donna,
Your post makes me sad and mad. It sounds like you have suffered needlessly due to (I'm guessing) an incompetent plastic surgeon who did not inform you of your options. The more I read about women who are dealing with longterm complications, the angrier I get at surgeons who don't tell their patients the possible aftereffects. Yes, many who undergo flaps recover and are happy with the results, but for those who don't, it's hell.
I have chronic pain, the iron bra and diminished lung capacity, though my suffering sounds nil compared to yours. You have been through an utter nightmare! Like Nash, I would recommend you see an osteopath or a holistic body worker. My physical therapist said that it's important to stretch the muscles before strengthening, which I think was key for me. Think of your muscles as a rubber band... a thick rubber band is more difficult to stretch than a thin one. She also would manually stretch my pecs - and yes, it hurt, but not to the point of tears - and I would feel a release in my back and under my chest. Massage therapy is heavenly, but the relief only lasts about a day. I still think its worth it to relax the muscles and get the circulation going. Also, a heating pad works for me at night because it helps my muscles to relax.
I am sorry you have been through so much and hope you have found some relief since your last post!
And Trish, I'm with you. I wish doctors would stop performing this surgery as well. Too many women are suffering.
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I am having a lot of those same issues, I had my surgery almost 6 years ago, and have been in misery off and on ever since. I’m going to see if a breast plastic surgeon can do anything to reverse this
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Hi Tink3640 and Donna
I too have bilat Lat Dorsi flaps first surgery in May 2016, I'm nearly disabled as well, everything you've experience, I have too. Beyond pain, can hardly move, unbearable tightness, nerve damage, can't twist, raise my arms, gets tighter and tighter. How are you both doing. I too have tried every treatment recommended, nothing helps. Complete misery, unbearable. I agree too this surgery should be banned! I've gone from a fit, active, healthy, very active athletic woman to being unable to shower in the morning unless on pain meds and sitting on a stool. Please, if inclined, let us know how you're doing...if you've found any sort of relief?
Hugs!
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Hi girls,
I am with you on this, horrible issues with lat dorsi procedure from 2014, reoccurence 2015, implant removed early 2016 (active cancer cells now in pectoral
muscle and in chest wall, chest wall activity stems from 2002 according to pathology!) Very reluctant to take recommended path ie radiation on chest wall and pectoral
muscle as I have zero padding (basically all ribs and lymph nodes in the areas of concern). Really not sure what to do at this time. I am having
nerve conduction test tomorrow morning in Sydney and see my Oncologist tomorrow afternoon....see what that brings.
Hope you girls are hanging in there and managing to find some relief!
All the best xxxxx
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I I have had severe pain since I've had the dorsi flap surgery the plastic surgeon told me that I would live this rest of my life. They now want to cut me off of all of my pain medication and do the numbing of the nerves just side effects are so severe that is scaring me to death is there any other alternative to getting rid of the pain then going through this procedure I have never been so afraid in my life and I went through 18 surgeries after my cancer along with chemotherapy I have no choice but to do this procedure because they're no longer going to give me my medication which barely works anyways I'm so scared if anyone knows another way please tell me
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I've called a lawyer and I'm going to do a class action suit against the surgery and the way we are treated after it's like they think we're making all this up or they're treating us like we're drug-seeking all's I want is the pain to go away but I'm scared to death of the procedures ahead of me the side effects are so bad
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I I agree this needs to stop it started in Italy and for some reason American doctors decided to do it my plastic surgeon told me I would live with this pain the rest of my life and I should be happy with the fact that I have breast which by the way don't even look like breasts there complete mess I used to be active to I worked at Microsoft had a wonderful job and now I can't even get out of my bed
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THANK YOU FOR SHARING. I had this surgery on June 18, that included an implant. In July I developed an infection and had to undergo surgery to remove the implant, followed by IV antibiotics. The middle of August my breast was completely red, at first the Drs thought some kind of “skin fungus". Treated with powder, when that didn't improve I was given leviquin antibiotics. On August 29 I traveled then after a day of running through the airport and hauling luggage for my aunt and I, ( I am a 2 bag traveler) I began to have pain in my arms. It continued to get worse, same type of symptoms, I could not raise my arms. My surgery was on my right side, but it seemed both arms were affected, the pain was near unbearable. Then my thighs began to hurt, that was so extreme it was near impossible to raise myself off the toilet. By Labor Day I could not function. Happen to be in Rochester MN, went to emergency room at the Mayo Clinic. They admitted me, treated me for an assumed breast infection with IV antibiotics and I was given pain medication. After a week I was discharged with pain meds and antibiotics. I immediately flew home and saw my plastic surgeon the next day. They took a biopsy of my very red breast, and gave me pain meds. A week later, the red breast had mysteriously improved, still red, but better. The biopsy as well as blood work only showed “inflammation markers”. Followed up with my PCP she prescribed an anti inflammatory. The pain has improved but not gone. The reddish breast is the same. I have constant involuntary movement in the right breast. My PCP is sending me to a Rheumatologist, I hesitate because I think this might lead to a road of no explanation. Can anyone tell me what kind of Dr might help diagnose this. I am now convinced it has to do with the Lattiimus Flap surgery. And I had my third breast cancer 2 years ago, I had radiation in this breast. That is why I had revision surgery in the first place. Any one with a red breast and no explanation
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maybe I should add to my above post. Today is my 9 year anniversary for my first breast cancer. It was stage 2b triple negative. At the time I just concentrated on treatment and never researched the cancer. I has a left mastectomy, and chemo, followed by reconstruction and reduction on the right side. Then 2012 I was diagnosed with cancer on the right side, stage 1b, less scary had a mastectomy, chemo and reconstruction. Never joined blogs, or did any research about my cancers, just went on and into a depression that I did not recognize. Finally in 2016 things were looking up, new house new lookout on life, then 3rd diagnosis on the right side, same cancer, surgery followed by radiation. My right implant seemed deformed and I had pain. That is what led me to have the revision surgery. They put a new implant in the left side and did the LD on the right. I knew this surgery had more risk, but was told it had to do with infection from surgery nothing about side effect of pain. I am so afraid of this getting bad again. I have been seditary because I am afraid of the pain. Like others this pain is worse than all previous surgeries and treatments combined. I am going to try and get back into yoga next week. I just want to find a doctor that understands and like others, I need pain meds when necessary
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Hi all!! It's been quite some time several more surgeries, 2 new brain tumors 1 near the brainstem...
I originally posted about the chronic pain I've lived in that has changed my life completely. Over the years since I've had about 15 surgeries.
Here is what we have found. The original surgeon lied to us and had no experience in breast reconstruction after mastectomy. He damaged the long thoracic nerve and several innercoastel nerves. By the time he was done with me I had 3 left boobs!!
I went to City of Hope and ended up having 4 more corrective surgeries. The down side is while there is a beautiful huge difference and I feel like a woman again, they could not repair the nerve damage and adhesions. I am on permanent disability and live in chronic pain daily. Being a left hand dominant person has not helped.
There is nothing more that can be done and I closed my company 2 years back. I can't walk very long because motion causes shooting burning pain from my left shoulder down my left side to my lower back and my breasts go numb and the iron bra feeling is so painful that I literally pass out from the pain. I have been pretty much homebound since 2014. I was put on pain pills, PT, nerve blockers, injections, you need name it I probably had it.
We recently had a custom van with a ramp and a scooter so I could get out and do more with my family. I don't think I have shopped in 5 years. We recently took the grandkids to Santa Barbara for the day. While it caused me so much pain.. can't take the scooter in the sand.... to look at them having fun laughing and playing in the water was well worth the consequences by the time we got home.
I was struggling with severe depression for many years and was even thinking I'd be better off dead... I refuse pain pills they really messed up my digestive track.. it helps me to have my husband put laticane I do take a nerve blocker along with other meds I will live on for life.
I find just laying down and not moving for a few hours sometimes a few days depending on how hard I pushed myself really works better. I've finally come to terms that I can no longer work or do hobbies I enjoyed and am seeing a therapist as the meltdowns and total frustration was overwhelming. I'm mentally doing better but physically getting worse.
With the 2 new tumors one in the 7th cranial nerve sheeth called a schwanoma the other is located in the fossa near the brainstem meningioma... is in a very dangerous area so cancer or not cancer the quality of life if they try to go in would permanently make me 100% unable to care for myself. They are doing scans every 6 to 12 months to monitor how fast they are growing. I have refused a clinical trial as the location is extremely rare and the risks to great..
The right side schwanoma in the nerve sheeth would mean cutting into the nerve to get the tumor leaving me with no way to control the right side of my face and I'd be unable to close my eye and would lose my hearing. Not good odds And as the other tumor it will affect everything include killing me eventually as it chokes off oxygen to the brain.
It's really made me open my eyes and help to cope and accept my current disabilities better and appreciate the fact I can move and walk some usually not more than half a block but I can enjoy my family and grandkids for now.
I can't see myself completely helpless and totally dependent so I've made the choice not to have the tumors messed with. They each have a 5 year survival rate cancerous or not and are known to grow slowly. In rare cases meningiomas can become aggressive this the reason for monitoring their growth.
For me with the many medical issues I have as well as several autoimmune diseases a craniotomy is just not going to happen nor is drilling into my brain to biopsy as that can make my symptoms worsen . When the time comes I will at that point donate my body to help future patients with similar tumors located in dangerous areas of the brain.
Right now I just want to enjoy my grandkids and family and meet my identical twin girls due in December by my daughter.
Word to the wise... Never ever let a cosmetic surgeon do a cancer reconstruction. Please go to a place like City of Hope, UCLA cancer center etc. that knows what they are doing. This is not like a simple boob job, this is major reconstruction after mastectomy where 36 round of radiation killed the blood supply to that area so my only option was lat. Dorsi due to to many surgeries on my belly.
I always wonder if my life would have perhaps came out differently had I made the drive and had it done right to begin with... I can't even lift my left arm over my head my fingers go numb. One wrong move can put me down for several days.
If you've had a latissamus Doris and have experienced what I'm going through you could well have nerve damage and severe adhesions that are really not repairable.. at least I have the 3 opinions from 3 different neurologist and now have answers to my ongoing chronic pain and Rom issues. It took me 4 years to get answers!!! I was ready to just end it all! I was starting to feel like I was crazy and the doctors didn't know exactly what was going on.
Feel free to ask me anything. I hope this information helps someone. I know there are more like me trying to deal with chronic undiagnosed chronic pain after lat. dorsi.
Stay strong and live the best life u can now 🙏
Donna
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Hi!
I completely understand your situation. I have recently posted a update and like you am struggling day to day.
Please read my last post, I hope it helps you and you find some peace... you are entitled to have your breast redone if you are a cancer survivor until it is as correct as they can get it. My first surgeon botched me so bad and almost killed me twice. When I would cry at the outcome he told me that I was expecting to much!!
That was the last time I saw him and went directly to City of Hope where doing this type of thing is what they do.
Don’t give up while the damage is done I do feel better that my breasts were fixed. Unfortunately they could not fix the nerve damage...
Donna aka Cablequeen6
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Hi Tracy,
Sorry I’ve been away so long but I have same symptoms and more. You can read my recent posts as to what I finally found out. As far as the uncontrollable muscle spasms and twitching you would want to see a neurologist or a orthopedic doctor. I highly suggest Neurologist.
Feel free to let me know how you are doing now.
Donna
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i have been dealing with chronic pain since this surgery 20 years ago. This surgery has ruined my life. I had it done at the age of 36 and had to stop working when I was 40 I was barely able to work. I can't sit both of my sides burn so bad, my shoulder, and spine it feels as though the pain is spreading. I have fibromyalgia from the trauma of the surgery. I felt like a twisted pretzel right after the survey my body is twisted. If anyone knows of any treatment that might help please let me know. I think I have tried everything... at this point I just want life to be over 20 years of burning nonstop pain has taken it's toll on me. I went from breast cancer to chronic pain I don't feel like a breast cancer survivor it all happened so fast
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