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Category Archives: complications

Four Years And Still In Mourning

Today I gave a pep talk to a woman I admire in hopes that some of my own life experience might help her. She is having problems with both men and women who feel that it is okay to say cruel and hateful things to her simply because they disagree with her. The tone of her initial post felt like she was about ready to throw in the towel on doing the work she enjoys because of these hateful people. So I posted the following to her:

I want to tell you a story and I hope this helps you get your feet under you a bit better. Several years ago, back before I was a skeptic and before I had a decent sense of self worth, I had a boob job. I hated the way they looked after breastfeeding two kids and I thought that, as I approached the age of 40, it would make me feel better about myself.

I ended up developing necrosis due to unconfirmed surgical complications and I lost both of my nipples and areolae. I don’t know if there’s a worse experience than watching your own intimate body parts rot away but if there is, I wouldn’t wish it on anyone.

There’s much more to the story which you can read on http://boobcast.com if you are interested.

About a year after my chest healed, (I was severely deformed and required two reconstruction surgeries which i have long since had, to rousing success) I was finally in a mental state to start writing about what happened to me. I was bound and determined to write about it because if I DIDN’T write about it publicly, then, in my mind, the hack that did this to me would win.

That wouldn’t do.

There were SO many times when I had to stop in the middle of writing a post and go have a good, long cry. But I did it. I did it because I REFUSED to let my situation dictate my life. I refused to let what others told me change what I truly thought was the right thing to do.

Boobcast has made a real difference in women’s lives. I get regular emails telling me as much. I talk to women regularly who are scared and in need of reassurance and advice. I’m so very grateful I can do that.

When I was a little girl my father told me to “Stand and fight if you believe you’re right”. I learned determination from my mother who, after a motorcycle accident that left her in ICU for six months, taught herself to walk again when doctors said she never would.

Believe me when I tell you that I know it’s hard. I know it’s disheartening and some days you just want to give up and let the world go to Hell in its own little monogrammed handbasket. And some day you may decide you’ve had enough and that’s okay.

But please don’t let THEM make that decision for you.

I really hope that helps her. She’s doing good work in the skeptical and critical-thinking community and I would hate to see her give up because of all the hate mail and awful things people say about her in the blogosphere.

Unfortunately, this good deed of mine seems to have had some emotional backlash. I realized that even though Boobcast is doing good work, I am still in mourning for my loss. It has been four years as of yesterday since that first surgery and it still hurts emotionally. Not to the degree it used to, but it’s still a visceral pain. I feel nauseous remembering what I went through. I have tears in my eyes remembering what it was like and I wonder if I will ever completely heal emotionally from this.

I have had people suggest that I just walk away from Boobcast for a while. I can’t do that. Women email me regularly asking questions and seeking advice. I know what it’s like to be that terrified so abandoning the thing I have created here is not an option.

The upside is that where there were once great, wracking sobs, there are now just tears and a dull ache. Four years seems like forever and a single heartbeat at the same time. I guess I’m healing. They keep telling me that healing takes time. It’s just taking so long. I know that it will never be truly over because I will always bear the scars of reconstruction as a reminder. I will also always be here for others going through this nightmare.

I can’t abandon my post as long as I’m needed.

It has also been suggested that I start talking to women’s groups about what I have experienced. With the settlement I have, I’m not sure I can do that, but I’m looking in to it. The recent cease and desist letter I got about my comments on the Complaints Board scares the Hell out of me. We’re having a lawyer look at that to make sure that it only pertains to the settlement and not the case itself. If that is the case and it only pertains to the settlement, I will probably start doing that.

In the mean time, life continues on. I still need to have one last round of tattooing done and hopefully that will be it for the medical stuff. I’m thinking that perhaps I’ll do it in November or December, depending on the tattooists schedule. I’ll post when I have something concrete.

 

My Legal Settlement

Earlier today I received the following email from a regular reader here at the blog. For personal reasons, the reader has asked that they be kept anonymous.

Maria,

In your blog, you said you signed papers with your doctor not to name them.  Did you have a settlement?  Did you have the option not to settle, instead spread their name all over? Or did an attorney advice you about libel or defamation?

If you can comment without naming the doctor, much appreciated.

I have written before about how I tried to deal with the legal ramifications of what happened to me. I also wrote about the settlement that currently binds me from mentioning the name of the surgeon. HOWEVER, before I agreed to the settlement that prohibits me and my “agents” from mentioning the surgeon’s name, I wrote a few posts. Those are listed below in my response to the reader’s questions.

Dear Reader;

I am, unfortunately, also bound from talking about the terms of the settlement as well. I DID have the option not to settle. At that point I was deeply clinically depressed and traumatized. I didn’t want that person to have anything to do with my medical care any more. I would start shaking every time I had an appointment. I just wanted it to be over with so I went with the first available way out.

People keep telling me that I’m brave. This is one of those instances where I was not. I DID put up a synopsis of what happened on the Complaints Board [Editor's Note: This post has been edited on advice from my lawyer.Please visit the link for details]

I never spoke to a lawyer about defamation, but I was a journalist so I know that once I signed those papers, I am legally bound, along with my “agents”, not to reveal his name. HOWEVER, those two links were written up before the contract went into effect.

Here is where things get interesting. I just happened to notice that a person I am presuming is the doctor in question or one of the 2-3 staff members familiar with the case (aka one of his “agents”), made a brief response to my initial post on the Complaints Board. I am presuming this because of the use of the phrase “ridiculous herbal remedy’ in the response. That is FAR too personal to have been written by someone just reading entries on the complaints board.

And so, dear reader, I am going to war. For some reason I am having technical difficulties logging on and making a response to that accusation. Once I do, you all may want to stop by for a look because I can guarantee that things are going to get very, VERY interesting.

This surgeon does not know with whom he is messing. He’s about to find out.

 

Nerve Damage With Breast Augmentation

With any type of surgery you can expect to lose some sensation. Sometimes it’s just temporary. Sometimes the nerves are just so damaged that there’s no way you’ll regain all the feeling you had before. Breast surgery is one of those situations where you will never be the same.

Even if you have a transumbilical breast augmentation (TUBA) there will be some nerve damage. Nerves get torn, cut or separated causing a loss of sensation. There can be wide swaths of numb areas. It depends on what type of surgery you have as to how much nerve damage and loss of sensitivity there is.

There are three major types of incisions used in a breast augmentation:

Periareolar – This incision is the most concealed, but is associated with a higher likelihood of inability to successfully breast feed, as compared to the other incision sites. The incision is placed at the bottom half of the areolae. Consider that there will most likely be severe reduction in nipple sensation with this type of implant insertion.

Inframammary – This incision is less concealed than the periareolar and associated with less difficulty than the periareolar incision site when breast-feeding. This incision is placed in the underside crease of the breast. The reduction in nipple sensation probably won’t be as severe with this type of implant insertion. Consider that a big bag of water is being shoved up under the muscle or skin. There WILL be some reduction in breast sensation.

Axillary – This incision is less concealed than the periareolar and associated with less difficulty than the periareolar incision site when breast feeding. This incision is placed in the armpit. The loss of nipple sensation won’t be as severe as with the periareolear, but again, you’re having a big water bag shoved under the skin or muscle. There will be loss of sensation.

No matter what type of insertion you have for breast augmentation, there WILL be some nerve damage. Whether it is temporary or permanent is an individual experience.

 

Excise Necrosis

I have been re-reading comments from my Breast Necrosis Photos article and I realized that I have to address this topic in MUCH more depth. I gave this article such a vague title because a couple commenters on the aforementioned article used the term “excise” for the non-surgical removal of necrotic breast tissue.

Excise means “to remove by cutting”. That is the least common use of the word “excise”. It also means to erase or remove by crossing out. I’m not sure how many surgeons are actually using the word “excise” in relation to the actual removal of necrotic tissue.

My experience was different. The nurses always used the term “Debridement” when talking about removing my necrotic tissue.  Debridement is defined as : surgical removal of foreign material and dead tissue from a wound.

So I suppose you could say they mean the same thing. The definition of debridement, in my opinion, sounds much less violent and painful. I’m guessing that’s why more medical professionals use it instead of excising. No one wants to have things cut off of us. It conjures up really frightening imagery.

I know it sounds downright terrifying to be told that your surgeon is going to remove the necrotic tissue. I know this because I was terrified beyond belief, myself. I want to reassure you, dear reader, that it does NOT hurt. It is in NO WAY painful. And while the entire situation is horrendous beyond my ability to describe, you will not feel anything beyond a tugging or pulling sensation while it is being done.

My advice: Don’t look while it’s being done. Bring your MP3 player and listen to something that will keep your focus off the process. Focus on breathing deeply and slowly. Think about something that makes you feel calm and at ease…a favorite vacation spot or a happy memory. Put all your focus on that.

The Procedure: The day I had my debridement done I came in to the exam room and they had me sit in the big chair with the surgical-style light over it. It looks kind of like a dentists chair but more comfortable.

To my right was a tray with a few instruments: Forceps, surgical scissors, a kidney-shaped tray, gauze, a scalpel and a few other things. The scalpel scared the hell out of me because I was anticipating pain already.

When the scalell was unpackaged from it’s sterile holder, I closed my eyes and started breathing deeply, focusing on trying not to cry or panic. Then they turned on the very bright surgical light above me. The nurse told me very softly that they were starting and all I was going to feel was some tugging. She urged me to try to relax and reassured me that it would be over with soon.

She was right. Since the tissue they removed was dead, there was nothing (no nerves) to transmit pain signals. I heard the occasional metallic snip of surgical scissors and felt some tugging and pulling, but there was NO PAIN.

As terrifying as debridement or excise sounds, as horrifying as having dead tissue removed from my body was, it wasn’t nearly as bad as it sounded. When it was all over there was a bed of healthy tissue so that I could start healing properly without the interference of the necrotic tissue.

 

Shutting Down

First, I’m sorry about the length of time between posts. We lost my husband’s father and things have been really chaotic dealing with family issues, memorial planning, etc. Things will be returning to normal on Monday.

Second, I want to talk more about my nipple dilemma. There will be extra money soon and I’ll have the capability of scheduling the nipple reconstruction. I’m scared. I’m not mind-numbingly terrified the way I was when I scheduled my breast reconstruction. But I’m still frightened of something going wrong.

The main *something* is, of course, my old nemesis, necrosis. I love my Twins. They have their little flaws but what breasts don’t? So why fix what isn’t broken? Because somewhere in the back of my mind, I’m still not complete.

Yet, whenever I think about actually doing it, I start to shut down. I feel like curling in on myself. I don’t know if I’m really ready. I want to just be done with it but I’m scared.

Has anyone out there had nipple reconstruction? Would you share your story, good or bad, with me please?

 

Malpractice Insurance

I have spoken previously about the regulations surrounding malpractice insurance in Florida. According to what I have experienced, a plastic surgeon is only required to carry $100,000 in malpractice insurance. If you have to end up suing your plastic surgeon, there are a few factors to consider.

First, the legal fees have to come out of that $100,000. It can take a very long time for your lawyer to research your case. Surgical records have to be pulled and analyzed along with any other pertinent health records.

Second: It can be extraordinarily difficult to prove malpractice took place so there is a decent chance you may not win.

Third: If you DO win, there probably won’t be enough left to cover reconstruction surgery. My reconstruction (just the mounds) and hospital fees cost about $30,000. My nipple reconstruction and revision surgery will be another $10,000 in round numbers.

With the current economy, surgical financing in any decent amount is nearly impossible to come by. So there is every chance that you will have to pay for your reconstruction out of pocket if it is not related to breast cancer.

This regulation needs to be reconsidered. $100,000 is simply not enough money to pay the lawyer AND the doctor.

 

Why I Hid My Surgical Complications

When I wrote this post: breast-necrosis-photos I mentioned that, as the necrosis was developing, I kept the extent of the damage from my husband and my family as long as I could. There are a few reasons. They may not make much sense but if you’re going through this, I think perhaps you can relate.

1) “I don’t want to be a burden”. No one wants to cause problems for their family. As women we generally put everyone else’s needs before our own. When we’re sick or hurt we usually keep it to ourselves until it’s really bad. Even then, most of us hesitate to ask for what we need for fear of being a burden.

2) “It’s my fault. I’ll handle it myself.”. My big guilt trip for the longest time was that somehow, this was all my fault. Because of that, I was going to deal with it myself. I’m a big advocate for personal responsibility. Since I felt responsible for what happened, I was bound and determined to handle it all on my own.

3) Fear. When I was in my late teens my mother went through something similar to what I have gone through. My father had an extremely hard time dealing with it and it drove them apart. I was stark raving terrified that if my husband saw what was happening to my breasts, he would leave me.

4) Sheltering. My husband led a pretty sheltered life before all of this. I wanted to protect him and shelter him from the trauma so that only one of us really had to deal with it. I put up an extremely good facade too. 99.9% of the time he had NO idea that I was in a mental and emotional Hell.

For those reasons, I kept the necrosis hidden. He was not allowed in the bathroom during my bandage changes. He was also not permitted to see me when I showered. I gave him updates after my check ups with the plastic surgeon but he was never permitted to see. Not until much later when I had absolutely no choice in the matter.

Some people call this bravery. Since it was fear based, I still think of it as self preservation.

 

Breast Necrosis Photos

Below you will find photos of what breast necrosis looks like. These are EXTREMELY graphic photos. This post is for MATURE VIEWERS ONLY!!

I am putting these photos up, not for shock value or to evoke pity. I am posting these images of breast necrosis so that when another woman has this happen to her, she will be able to look at the photos and evaluate for herself if she just has really bad bruising or if her tissue is necrotic.

I have said SO many times before that when I was going though this I did not have ANY pictorial references. I didn’t know what to look for. Now YOU, dear reader, do. If you are unfortunate enough to be reading this, searching for answers, please contact me at boobcast (at) gmail.com if you have ANY questions at all.

During the period you see below, I felt so very alone because I couldn’t find anything to compare myself to. I was also sheltering my husband and my family from what was going on. So I WAS alone. YOU don’t have to be.

The first photo (below) is approximately a week after surgery. Most of what you see is bruising. However the black spots are necrotic tissue.

The next photo you will see is closer shot. In this second photo you can see the difference between the bruising and the necrotic tissue. Here you can see the difference in the texture of the skin where it has really started to die.

This next photo is blurry and I’ll ask your forgiveness for that. You can see where a hole has opened up in the dead tissue.

There is a process called debriding where dead tissue is cut away. It doesn’t hurt because the tissue has died and has no nerves. It’s just rather horrifying knowing that part of your body has died and is being cut away. They don’t put you to sleep or anything. They just cut it off with surgical scissors. The completely black area used to be my nipple. That is was totally necrotic tissue looks like.

The yellow tissue is, as you may have already suspected, breast fat.

A photo of my other necrotic nipple and areolae:

Finally, a VERY graphic closeup of one of my breasts after the debriding:

 

Talking Is Harder Than Writing

I’ve been writing BoobCast for so long, one would think that losing my breasts to necrosis would have gotten somewhat easier to talk about. I would have liked to believe that writing about it makes it easier to deal with at all.

It hasn’t.

Yesterday I hung out with someone I haven’t seen in about a year and a half. After we talked about the initial reason she contacted me again, she asked me what had been going on with me since last we saw each other. So I told her. Not in vivid detail mind you but enough so that I was kind of choking up.

What surprised me even more is how much anger I still have towards the man I feel is responsible for all of this. I’m still legally constrained from mentioning his name or the name of his practice. That doesn’t keep me from hoping that some day someone will break his hands with a sledgehammer so he can’t put some other poor woman through this.

Almost 2 and a half years and I’m still angry beyond belief. I think what made me the most angry has always been his manner. There was The Valium Incident, generally replying “I don’t know” when asked what was going on and insulting my practice as an herbalist by calling it voodoo even though, as part of prep for the surgery I was given herbal supplements to take. Add to that, telling me to stop screaming as he sewed cadaver skin onto my rotting breasts to try to act as some kind of bandage. The screaming happened because he was sewing it on to a spot that hadn’t been numbed. Of course I left out those details. I can write about them but, as I type, I’m choking back tears.

When does this get easier??

It HAS to one of these days or I’m never going to be able to talk about this on stage. I still have hopes of turning BoobCast into a Vagina Monologues style stage show.

Do any of you know how to get speaking gigs?

For new readers, please read my earliest post in the Archives.

 

Comming Up On BoobCast

I’m excited about tomorrow’s BoobCast post! I have figured out a way to stretch the scar tissue on my back. It’s a bit complicated so it will involve photos of each step in the process. This is the most ambitious thing I’ve done with BoobCast since I decided that I would blog about my reconstruction process.

In a future episode I will also be talking more in-depth about the V.A.C. machine, how it works and why it saves lives.

I am also considering going back into the archives and posting photos of the breast necrosis so that women who are trying to figure out if it’s bruising or necrosis have an actual visual reference. I wish I would have had that when I was going through all of this.

Either that, Or I’ll do a dated photo diary titled “Breast Necrosis Photos” so that they are all on one page. I think that might be better to have all the shots in one place. That way people who don’t want to see it won’t have to look at it.

Which would be better, dear Reader?

 
 
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