Severe complications from jaw surgery - not worth it

It's hard to believe it's been three years since my initial surgery. I remember going into the operating room thinking it would be the end of my nearly four year jaw surgery story and then waking up to realize my journey had only just begun. I apologize for not responding to messages or providing updates over the last year but I needed time to focus on other health concerns, and on life in general. Little has changed in the way of my reconstruction. I still have an obturator and I haven't had any additional surgery since Miami.
So what's the plan then? I still don't know. Many of you already know that I was diagnosed with Ehlers-Danlos Syndrome in my early twenties, but what I talk about less frequently is that six months after my EDS diagnosis, I was also diagnosed with sarcoidosis. In most people it tends to go away on its own, but in a small percentage of people like myself, the disease progresses and spreads. When I was initially diagnosed it was only in my lungs and my lymph nodes. Over the years it has gotten worse and has also spread to my eyes, my brain, and now most recently my bones. I'm undergoing immunosuppressive therapy with methotrexate and it seems to be helping. However, it also means that any jaw surgery is currently off the table due to the high risk of infection while I'm undergoing treatment. Treatment hasn't been without its side effects but I'm confident that I'll get through this. After all, I've fought much harder battles.
Taking jaw surgery temporarily off the table has been difficult because full reconstruction has always been my goal. In a way though, it's also been a blessing. It's shifted my focus and hopefully by the time I'm ready some of the newer grafting technology will be available to me.
This will likely be my last update unless something changes dramatically and I go through another jaw surgery. I know I've been MIA for the last year but I often read through previous messages and comments and they never fail to inspire me. There are no words that can ever express how grateful I am to have found this community. What initially started as a panicked review morphed into more of a blog and it has enabled me to share my story and to find an amazing support system. Thank you to everyone at RealSelf for giving me this platform. Thank you to everyone who has written and shown support, your words mean more than you know. You have all helped to make the last three years so much more bearable. Thank you to everyone who has followed my story and stuck by me through this difficult but incredible journey.
Over the past three years I have suffered immeasurable loss. I have grieved, managed to find peace and then sometimes lose it again, I've fallen down more times than I can count but managed to pick myself up just as many. I've moved to a new city, fallen in and out of love, left a job and then started a new and better one. I've cried so hard that I thought I would never laugh again and then I've laughed so hard I cried. I lost some friends but gained many more, I've known so much pain but also so much growth. I've given up and then rallied and managed to fight another day, but above all I have proved that life can go on even in the throes of immense loss. Without a doubt it has been a true lesson in the human experience.
This might be my last update but it is by no means the end of my journey. I have always said that I wanted something good to come from my experience and that I wanted to use my tragedy to help others. It took a lot of hard work (and a ton of tears) but I recently finished the first draft of my book detailing my journey. I hope to continue to help and inspire others the way everyone here has done for me. I know I've said it before but thank you all for giving purpose to my pain. I couldn't have made it this far without you.

Many people have asked me if I sued and if not, why? It's not a simple question to answer. Saturday marked two years since my surgery and because of a two year statute of limitations for medical malpractice cases in Pennsylvania, it also forever closed the door on my ability to file a lawsuit against Dr. Levin.

Pursuing a malpractice/medical battery suit is a complex process. There are many emotional, ethical, and financial factors involved. Initially I didn't want to sue. I wanted what I think the majority of malpractice victims want: to be made whole again. I wanted a sincere apology and to be sure that this never happened to anyone else. I wanted to see Lawrence Levin learn from his mistake, for him to become a better doctor and an advocate because of it. I wanted to know that I wasn't alone and that he would do everything that he could to help me heal. As time went on and it became clear that Dr. Levin wasn't truly making an effort to provide me with the best medical care possible. I found out that he had intentionally kept the severity of my complications from me and that he wasn't serious about having my case report published.

I contacted a lawyer but was told I had plenty of time and should wait until I was in better health. When I recovered from my next surgery I contacted a prominent law firm in Philadelphia. It took them months to review my medical records only to ultimately decide that the case was too complex and they did not want to take it on. I contacted dozens of other lawyers. The problem that I faced was that it's expensive to file a lawsuit against a large hospital and when you have something rare and complex, it becomes even more expensive to find expert witnesses. I needed a firm with adequate financial backing to take the case but those firms were only interested in taking cases that were a sure thing. I later learned that women and children have a lower chance of ever seeing justice in malpractice cases because they have lower earning potential, making their cases less profitable even when they're legitimate.

I eventually found a lawyer who seemed willing to fight for me but he still had to convince the partners at his firm. It took months for the hospital to release my records and when they did, they were riddled with inaccuracies and flat out lies. The resident had documented that I consented to the procedure when in fact the decision to do a 4 piece Le Fort was never made until I was already under anesthesia. It was not something I would have ever agreed to had I been given the choice but my records stated otherwise. Dr. Levin claimed that the hyperbaric oxygen team had been consulted but hyperbaric medicine denied ever speaking to him or to the resident. Even with a lawyer willing to take on my case, we still needed a certificate of merit from a third party maxillofacial surgeon and because my records had been falsified the surgeon would not sign off.

After months of holding out hope I received word that the lawyer could do nothing more. I wasn't ready to give up yet so I made an appointment with one last lawyer. He was excellent and he believed in my case but in the end there just wasn't enough time to file before the two year deadline. I felt shattered and I felt betrayed by the legal system. I felt powerless and as much as I didn't want to admit it, I felt victimized. I had always assumed I would have the option of legal recourse. I knew that I would never hear the words I needed from Levin, that my closure wouldn't come from him making amends, but I always thought I had the right to my day in court. If he wouldn't hold himself accountable then I felt certain that a judge and a jury would.

I tried to move on but my inability to seek justice only exacerbated my PTSD. I began having regular panic attacks and I fell into a depression that I didn't know how to work my way out of. I have always known that life isn't fair but it seemed impossible to me that this man could damage my life and my body the way he did and simply walk away with no consequences. I now had to live with the knowledge that he was free to do this to someone else. I was also left with the the question of how I would ever be able to become whole again without the financial means to pay for the rest of my reconstruction.

The day that my statute of limitations ran out I received a letter from the hospital informing me that Dr. Levin was retiring. This came only months after I revealed his name and I wondered if this was a decision that came about because I decided to speak out. I was curious if this was Levin's way of finally accepting responsibility for what he did, if the hospital was forcing him out, or if it had nothing to do with me at all. Regardless of the reason, I felt a sense of closure and finality. I was relieved that he would never be able to operate again but in a way it felt like a wasted opportunity for growth. In the end I had to accept that I am not responsible for the way my surgeon decided to handle my post op care. I cannot control how he processed what he did to me and I certainly can't force him to take accountability. I had to let go of the guilt I was harboring because what was done to me was not my fault. I had to come to terms with the fact that I had been a victim and that being a victim and a survivor were not mutually exclusive.

A few days after I received the letter regarding Levin's retirement I found out that he was still employed at CHOP. Whatever sense of closure I had felt was now gone. So what happens now? How do you find closure without justice? I'm still struggling to figure out the answer. The only thing that I can do is continue to share my story. I may never get justice for myself but that doesn't mean I will allow myself to be silenced. I can still educate people on the risks of surgery and hope that by speaking out, I can help others. I have to find a way to make peace with the fact that the only real power I have is in how I move forward. I have lost so much to this process but I can't allow this experience to take away my hope or my faith in myself and in other people. I have come too far to give up and I'm not willing to let this experience change me into someone I don't want to be.

I've had a lot of people ask me who the surgeon was that botched my first surgery. Up until now I wasn't comfortable revealing his name but he's still treating patients and he's still performing surgery. What happened to me should never have to happen to anyone again so I think it's time for people to know who was responsible for destroying my life and my face. My surgeon was Lawrence Levin from UPENN. He also practices at CHOP. Please consider other options if you have consulted with this man. I don't think he deserves the privilege of being a doctor.