Anyone else disabled after a flap surgery?
The very-invasive PAP flap surgery left me ....
... without enough skin to bend significantly, made each step of walking extremely painful, sitting is incredibly hurtful from the skin trying to stretch, left both of the backs of my entire legs numb, my crotch is completely cut up with horrific scars and pain, my butt is completely deformed, and my knees swell.
Not only that, but one of the flaps died, and the operation was then for nothing. This was in Feb. of 2014.
The chunks of fat from my under my buttocks and thighs that now make wearing pants not only uncomfortable, but anyone can see where the fat is missing while in the pants.
It has also made me unable to work at all, bend, sit, stand, walk much and put me in poverty and having to sell my home.
I am now fighting to keep SSDI.
Anyone else in bad shape physically, mentally, financially after a flap surgery? If so, what kind?
Comments
-
Strange....this is the first time I have checked this site in weeks....and you just posted.Yes,I am having ongoing issues...bilateral SGAP and one side failed.I have been sick since a month following my surgery last August.The prophilactic antibiotics and other meds totally messed up my digestion.I was protein energy deficient and am still dealing with gastritis and multiple nutritional deficiencies.My one breast is very sore,lots of muscle tightness and especially pain in my ribs and breastbone.I have one pair of pants that fit,the others,forget it.My hips are sore if I lay on my side.I traveled for my surgery and used all my savings.....I just never even thought about one side failing as they say the odds are so low.The doctors bills post op have been draining.I finally found an integrative doctor who is aiding my recovery...the others all said I was depressed......which I was but it was nutritional and not to be fixed by popping a pill.......next week I see an integrative psychiatrist who specializes in breast cancer patients.Then I plan to pursue some physical therapy.I still have not decided what to do about being lop sided.I am going to try being fitted with a bra and form.Not sure if insurance will cover it.I am so so sorry you are going through this.I have felt so alone as most everyone else seems to do well or at least has the strength to carry on.I am just plain tired out.And a few months ago,I thought I was going to feel better about myself....not.....
-
I'm sorry to hear that you have gone through this, regatta21, and I am sorry to hear that your health problems have not resolved, G2C. I think it is so important that you are discussing these issues in this open forum so others are aware of the risks that are involved with these surgeries.
Regatta, has your PS done anything to alleviate your pain and scars? Have you considered a law suit? Have you consulted another PS to see if anything can be done?
G2C, your insurance should cover whatever is needed to achieve symmetry.
These complications are usually not discussed much before surgery, and there is a leap of faith that we all take when we opt for flap reconstruction that we won't be in that 1% with complications. I had a flap failure due to extensive necrosis and finally dealt with it this year after 2.5 years of putting it off. I can imagine that neither of you want to deal with more surgery. I am so sorry that you are going through this along with all the other aspects of breast cancer. I hope you can find a path forward to a pain-free life. I just want to send you some hugs. It's just not fair.
-
The long delay in writing back. Oh you wouldn't believe what I've been going through. It is complete hell on earth. Lawsuit -- you can't get the guy on anything if he says in his notes that he told you about the risks. Even if he did not. Also other plastic surgeons said that if they opened me up, they can't guarantee that my legs will shut.. If anyone reading this wants to know about disability and or ability to sue a doctor, please let me know the long list of what you can't do is astounding. It's hard to know I will have to live the rest of my life -- Approximately 40 years -- Longer then I've lived normally In a state of constant pain and inability. Before anyone goes to have flap surgery, please understand that it is more than the failure rate -- it is also the scars and also be a limited -- if not complete inability to live one's life as other people do -- you have scars, you have dysfunction, you have secrets under your clothes. it is not worth it please -- please please just get the damn implants. I don't care what the stats are for the implants -- you are not cutting up another part of your body that had nothing wrong with it.
-
My heart goes out to you, regatta. What type of flap surgery was it? It sounds like you may have had a surgeon who was not qualified to do this procedure. Can I ask where you had this done? Was it a major medical center? I'm also curious if you asked ahead of time about his experience? There's a big difference between normal "risks" and incompetence, especially if he misled you about his experience and was in any way negligent.
Be sure you document everything and maybe continue to search for an attorney who specializes in plastic surgery cases.
Here are a couple of links you may have already seen, but I thought might be worth sharing if you haven't.
http://legal-dictionary.thefreedictionary.com/Medi...
http://www.abpla.org/what-is-malpractice
-
regatta21, you said "I don't care what the stats are for the implants -- you are not cutting up another part of your body that had nothing wrong with it."
That's why I did NOT go for the flap surgery. After reading your post, I'm really glad I made the decision I did, despite some people really pushing the flap surgery. Here's what I heard: "Why wouldn't you do it? You'll have a flat tummy and cute, natural-looking boobs!"
I consulted two PSs, and they both gave me realistic info. The extra long surgery time for the flap procedure scared me as well as the more difficult, more painful, and longer recovery.
Anyway I know there are women who are happy they had the flap surgery. I'm sure there are many who had no complications. For me though, no regrets. My implants are just fine.
-
I had a Pedicle Tram flap to reconstruct a breast in October of 2014. Last Friday I went back to surgery to have my remaining breast reduced and lifted. The PS also made a nipple on the reconstructed breast. With the first surgery, I got a great tummy tuck.
I am so very happy with my results. I am 62 years old. I had no issues after either surgery. I think it depends on your Surgeon and Hospital what the outcome is. I had my surgery in Boston, Ma.
Regatta, I am so sorry you are going through this. I would seek out another PS because this is just not right.
Why do you have to fight to stay on SSDI? I am on that also and come up for review soon. There is no way I could work again but that is related to cancer, not reconstruction.
-
Wow, I just joined this site because I could not find answers on the Internet. I am 3 weeks out from a double mastectomy. I wanted to use my own tissue for reconstruction because I did not like the idea of two huge plastic shells sitting on my chest. I just felt I already had breast cancer, and putting something foreign in my body might trigger cellular changes I did not want. Anyway, the doctor said the SGAP was the best procedure for me, even though most of my fat is below my butt, not on top. Well, i was in surgery for 11 hours, and knew something was off by looking at the clock after surgery. My only response was that "things" just took a little longer. Nurses checked on my "breasts" every hour through the night and told me I was doing well. The next morning, the doctor came in and his first words to me were, "It did not work". At first I thought he was talking about something else, then I thought he was kidding me, then I saw his expression and knew. I exclaimed about the nurses telling me all night long how good everything was looking, and he told me that it was, but only on one side. I was so upset I immediately started crying, but was so dehydrated, no tears would flow.
Here I am, back at home with one breast that is 80% done, a Frankenstein incision on my other side, and two banana size incisions on each cheek. What is odd is the side with the breast is virtually pain free and has pretty much always been; however, the "flat" side constantly throbs. The pain is just to the side of my sternum, so I am guessing this is where the portion of the rib was taken out and the doctor was "digging around" trying to attach the tissue flap that failed. I am numb from the outside of my chest to the outside of my upper arm. I also have tingling on my arm on that same side, and my hand is always falling asleep and is cold.
Doctor says I can use my stomach in a stacked DIEP for second try, which I question, because he told me I did not have enough stomach tissue for reconstruction the first go around. The recovery is really long and I am very depressed at this not working after so much time and effort.
I am afraid the blood vessels are damaged in my chest now since I am in so much pain, and I am afraid I will have another failed flap. Can anyone relate to the pain just next to the sternum? Has anyone had two separate flap procedures? Any advice? Thanks Regatta21, I feel we are in the same boat.
-
I'm sooo sorry. It is your body, and you have to live in it. What if it doesn't work? What if you get a hernia? Wound openings with a wound vacuum? What if you can't really bend? Do you want more scars? What if you really were not a candidate? There are women who have had failed flaps and use other donor locations. But ... Do you really want to go through the risk again even if someone can find fat to use -- because NOLA will find a way I've heard. I certainly was not a candidate after getting more opinions unfortunately after-the-fact. A compromised body for a boob? Any celebrity would get the implants. Based on what you are saying, I'd think getting a few other opinions would be a must. And I don't think I would trust the team again. My side that failed has an implant in it now. It is fine. I had the pain in the sterum, too. No one told me that they would cut the ribs. I read about it in the operating report after the fact! Did you find out if you need chemo? That delays healing by six months. No one told me I was being evaluated for chemo until after my surgery. Had I known that, I would not have opted for a complex surgery. Also, I saw what my insurance paid the doctors. EACH got $200k. Incentive is flap surgery. Guess what? You can't really sue either if you have complications. That's a whole other topic. Please pm me what state you had your surgery in. I want to make sure you don't use who I used. Or I should say used me. I know many are happy with their results, but will you be ok both mental and physically with more scars and if it doesn't work? You have to live with the scars for the rest of your life.
-
Regatta21 - Thank you for all of the thought-provoking questions. Even though you were responding to Dogbiscuit, I feel like you were talking to me. Your point about "You have to live with the scars for the rest of your life" really hit home for me. My implant reconstruction failed on the radiated side due to an infection and I currently have an implant on the left and nothing on the right. I originally chose to have implants so I wouldn't have to "sacrifice" another part of my body to make a boob and now I am considering doing just that with DIEP because my implant failed. I am conflicted about what to do. I just wish I could go back in time . . .
-
I had a LD flap and the PS severed my long thoracic nerve. My arm is paralyzed form it. I am seeking legal consult with not much luck. I would do anything to go back in time and not have this flap surgery!
-
HOLY crap, I guess I was really lucky with my DIEP. So sorry to those who had bad results. The doctors should be held accountable.
-
I had a DIEP. It was touch and go for the right flap for a few days, but both survived.
I'm kind of on the fence how I feel about it. The right side turned out beautiful and it is very pleasing to have a warm soft natural feeling breast. The left side is larger and shaped a little funny. Having one more surgery to try to correct it, but it was a hard decision to make. I feel lucky I got this far without complications, am I pushing my luck to go one more round.I absolutely love how much fat was removed from my tummy, but the lack of sensation saddens me. My husbands touch doesn't feel the same. Also, as sometimes happens, my surgeon had to use a small amount of muscle from the left side. I have definite weakness on that side and I worry about a hernia. If I were a more athletic person I'm sure I would feel very limited in what I can do now.
I am grateful for my new breasts, but I don't know that I'd encourage others to do it because now I more clearly see the risks and drawbacks.
-
Tangles, it's almost impossible to get a doctor on anything I've come to find. It's such a fine line between incompetence and a "complication." I'm so sorry that you are dealing with what you are dealing with.
Debiann, the risks were certainly not given to me. I had no idea what I signed up for. The risks are very great.
I'm so happy when I read that others are okay after flap surgery. But when it doesn't work out, I think you need to be the kind of person knowing going into it if you will be mentally okay with that. That you could be the 1%. And is it worth it for you.
-
Whoa, I was thinking if I end up with a mastectomy that I would consider flap surgery. Thank all of you for telling your stories.
Success rates are statistical figures that apply to large groups of people not to individuals. They help prove to insurance companies and regulatory bodies that the procedure is worth the investment and that it is generally safe. The failure rate for flap surgery may be only 1 percent, but that number has nothing to do with the possibility of success or failure for an individual woman.
I say that all women should demand that professional guidelines are developed and recommended by the association of plastic surgeons. Such guidelines would require the plastic surgeon to undertake a rigorous evaluation of a woman asking for flap surgery to determine if she is mentally and physically suitable. The surgeon would be required to share all of his specific findings with each woman. Plastic surgeons should be required to take continuing education credits on flap surgery and to show candidates the paperwork documenting that they have current expertise in the area
As for me, I can tell that flap surgery is not for me. I already have a chronic pain condition that erodes my quality of life. It is not worth a pretty boob to suffer so much pain.
My heart goes out to those of you who are now afflicted due to the greed of an inept doctor. I guarantee (well, I believe strongly) that if you rise up and tell your story publicly to Congress, to the media, to the state medical boards, and to the professional medical associations that set standards for plastic surgeons that you will be empowered. Being empowered helps to make a person feel in some control of her life. Suffering in silence and keeping secrets kills the spirit.
l worked in the area of health advocacy for years. The only way to kill slime is to expose it to light.
-
Wow, decisionfreak.
Your post is one of the most relevant I have ever seen.
Everything you said really should be the way things are done. You hit every nail on the head. Even for doctors doing flap surgeries for twenty years, too, I would add. And especially even the creator of these surgeries if I may go there. Just to really lay all the cards out on the table. -
What you describe needs to be publicly exposed. Trying to fight it out one doctor at a time is fruitless. If you want to stage an effective battle as a patient and health care consumer, write a letter to your congressman and senator.Tell your story. Demand a public congressional hearing. Remind your congressman and Senator that Medicare pays surgeons for this kind of surgery. Demand that Congress hold hearings to review the harm to patients including economic consequences and to investigate if CMS has in place the highest possible standards for flap surgery done in comprehensive cancer care centers and institutions that receive Federal funds for research studies. Convince CDC to collect data for its highly visible mortality and morbidity reviews. Think big. I bet Angelina Jolie would testify in Congress in a heartbeat along with other celebs and regular people. There is a house committee that deals with public health issues. Contact the staffer who works with the committee chair about a public hearing.
I was regarded as one of the best strategists in Washington, D.C. for this type of effort before I became unable to work.
Any woman on this board personally affected by flap surgery that wants to write her congressman and Senator in Congress is invited to send me drafts of letters as private messages,and I will critique, rewrite, and wordsmith as necesary and as my health allows. I have limited energy with no guarantees but I work fast. I can dedicate a few hours a week to this effort. Somebody knowledgeable needs to do technical reviews to assure accuracy.
-
I haven't forgotten about you. I'd like to take this action soon as taxes are over. If you'd still be ingested in guiding me, I would appreciate it. Thank you.
-
I have not been on this board in ages. I still suffer pain daily. I had reconstructive scapula surgery due to the damage the Plastic Surgeon did a the Mayo clinic last year. I was hoping it would address some of the pain issues but it has not. I am sad I will have to live with this pain daily. I have been on the fence just taking my implant out to see if it would help with the pain, but it would be a big step to take with no guarentees.....
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team