Sunday, September 13, 2015

September 10, 2015 -- Dr. Edwards II Call

So today I received a call from Dr. E II. He just wanted to call and see how I was doing since the surgery is 4 days out. Also he wanted to update me on a situation that arose. He and his dad (one of the other surgeons working on my case) looked over my x-rays and MRI’s and noticed something. My L5 vertebra appeared to be very stiff. They were worried that it might have fused itself to the sacrum, which in my age, is very strange. Since I’m still young, there should be no stiffness. He says that there is a millimeter of space between my L5 and sacrum but it could still be stuck. So there are two things that could happen:

           1. They’ll try to keep pulling on the vertebra and see if they could pull the L5 free


2. The only other option is a vertebrectomy. Disconnecting my L5 from the L4 and placing the     L4 on top of the sacrum. In which case it will only be a 2-day surgery and I will be out a         few days after the 21st.

         This new piece of information is of course very alarming. I’ve been so excited about the idea that I will finally be able to have a “normal” body shape and everything will be restored to its original design. Now with this small possibility that my L5 vertebra might be stuck… I am freaking out and very nervous. But Dr. E II was very clear that he will do his best to keep my L5 in the game and move it all above the sacrum. So my fingers are crossed and my lips hot with fervent prayer that everything will work out the way it was originally planned. Can't believe its all happening in 4 days!!

August 7, 2015 -- Dr. Bains Consultation

     My sister and I flew into Oakland, CA to talk with Dr. Bains. Dr. Bains is the California doctor that Dr. Jenkins (my doctor in WA) told us to talk to about my surgery. This is the doctor that would be working alongside Dr. Jenkins if I decided to go along with Kaiser to fix my back. Now remember, Dr. Jenkins told us multiple times that only a vertebrectomy is possible. That Dr. Bains couldnt provide me with a full reduction.

     So my sister and I were prepared to fight Dr. Bains to approve our appeal to Kaiser to get my surgeries done with Dr. Edwards II. When we get to our appointment, we were thrown through a loop. Dr. Bains told us that he in fact can provide me with the type of surgery that Dr. Edwards II would do. But there are a couple of things different. He said that he (and multiple other surgeons) would do the reduction in 1 day rather than 3. Also, that he wouldn't place the L5 right on top of the sacrum, he would leave it sort of on the edge and secure it with screws. And on the subject of screws, he informed us that he studied Dr. Edwards II's technique with screws and that there was a high chance of stress fracture in my bones because of the type of screws and where they would be placed. I asked him why wouldn't he just do the full reduction if he's moving my L5 up anyways? He said that there's a higher risk of nerve damage if the did the full reduction. He kept reiterating that the angle of my spine in relation to my pelvis was more important than putting my body back to its original design.

      In the end we were not able to talk to him about providing us with proof of consent because there was no way he would take our side if he's able to provide us basically with the same type of surgery we're asking to get somewhere else. His talk of stress fracture and nerve damage didn't sway my decision of going with Dr. Edwards II. Dr. E II has had way more experience with my type of condition and how to deal with it than Dr. Bains. So of course, even with the risks, I have complete trust that Dr. Edwards II will be able to provide me with a better outcome than Dr. Bains.

     I have provided another GIF. This one shows Dr. Bains outcome:

June 22, 2015 -- An Appointment with Dr. Karami

     Today I had an appointment with Dr. Karami of Kaiser Permanente. My sister and I were told that I had a better chance of getting Kaiser to cover my surgeries if I had Dr. Karami on my side. So we went to talk with him. Right off the bat, he was on our side. It was honestly a little bit too good to be true. I kept waiting for him to turn on us during the conversation. But he didn’t. Dr. Karami kept saying how he hated how money was a huge factor to why Kaiser didn’t cover a lot of surgeries. He believed that the patient’s quality of life should always be the #1 factor in these types of decisions. My sister and I were very excited that we finally had someone in the Kaiser system on our side. Unfortunately, in all the excitement we forgot to ask him to write a letter to Kaiser saying he supported our appeal and to sign it. Because later I learned from my sister that she called Kaiser and Dr. Karami had changed his mind. We figure that he had a talk with Dr. Jenkins or other top chair people and they convinced him to not side with us. So if you are ever in this type of situation, no matter what, get whoever you just got on your side to write their consent and to sign it right away and for you to get a copy!!

     So I got a plan with BlueCross. I made sure to call one of their representatives to make sure that my surgeries would be covered by my plan and a huge chunk would be. We are still going to try to get Kaiser to cover my surgeries, but in case they don’t I need to have back-up insurance.

     Oh, and we set the dates for my surgeries: September 14, 21, and 28. Three more months and this whole ordeal will be over! 

April 3, 2015 -- Dr. Edwards II Surgery Consultation

     I flew into Baltimore, MD with my mom and eldest sister to have my surgery consultation with Dr. Edwards II. He was very informative. I don’t remember everything Dr. E II told me, but he did provide a lot of information about the pros and cons of my surgery. The pros being a full reduction is possible, less chance of a further slip, return of normal trunk height and a few others. One of the cons that he mentioned was there is a chance of neurological impairment which would typically be weakness in the ankles and quadriceps muscles. In most cases this is nonexistent, in some cases temporary and in rare cases it is permanent. He explained how since my slip is so far, that I would need a three part surgery, each done a week apart, consecutively.

     So we began talk about having my surgeries done in June but I need to talk to Kaiser Perm (my insurance company) first to see if they would cover the procedure. When we talked with Lisa, the surgery consultant, she warned us that there was very little to no chance that Kaiser would cover anything. In the 10+ years she’s worked at Mercy Medical, she has never experienced any leeway from Kaiser for anybody. So she wanted to make sure that we didn’t get our hopes up too much but wished us the best of luck anyway. The original plan was to have my surgery in June, but because we need to talk with Kaiser before we can set a surgery date, it will probably be later in the year. Very bummed about that because I want to get this fixed as soon as possible!! But I know I must be patient a little bit more.

     I've attached two GIFs that I recently made. The first one (green background) shows the full reduction that Dr. Edwards II would do, and the second (blue background) shows the vertebrectomy that Dr. Jenkins planned on doing.  Just a small visual. :)