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. :)

Thursday, November 20, 2014

November 18, 2014: A Wrench In My Plan

I saw Dr. Jenkins again a month ago. I sought from him approval of surgery from Dr. Edwards II. Again, my pleas fell upon deaf ears. He again told me that KP can offer the same type of surgery. (Even went as far as drawing me another simple drawing explanation of his surgery). I tried to tell him that they were in fact very different. But he didn't seem to grasp that bit of information.

My oldest sister (who could talk a fish out of water) and my mom went with me as my back-up negotiators. Now, don't get me wrong, I love, love, love my mom. The only problem is that she doesn't understand that there are certain things that you don't tell certain people. This has led to multiple awkward situations that we now tease her about. One mistake my mom made in this certain situation was trying to tell a analytical man to feel the pain of a mother’s heartache in seeing one of her children with a painful condition and wanting the best for said child. But this medical expert only wants to hear scientific, medical facts. My mom’s words of sorrow clicked the off-button to this calculating machine. Also mentioning that if we did go with KP and the surgery goes bad, that she would blame, BLAME KP. Guess what a doctor translates the word “blame” into? Sue. In his ears my mom was threatening a lawsuit. That’s not how she meant it, but that is how he heard it. My sister and I knew any more attempts at persuasion (no matter how medically correct) would be a waste of time. Good-bye doctor’s referral letter! Don’t let the door hit you on the way out.

So whats the next step? Well. They just opened up insurance enrollment. Which means I need to call the Mercy Medical Center and try to find someone who can tell me which insurance company would work best for my situation. Then begins another whole new world of stress and planning. But, I mustn't lose heart! 3-ish inches, Yana, remember 3-ish inches of gained height!!!

Wednesday, August 13, 2014

August 13, 2014: What To Do?

Its been over 2 years since the 2nd appeal I sent to Kaiser Permanente to get Dr. Edwards II to do my surgery in Baltimore was rejected. Apparently there are doctors in KP that can provide the same service as Dr. Edwards II. But that doesn't make sense to me, since I was told by my  KP doctor that he has never seen my condition before and the doctor they would get from California also has never seen my condition and they would be doing a vertebrectomy.

I am in a dilemma. I'm thinking of trying to get KP to reconsider my surgery with Dr. Edwards II. But I feel like that means I'm not trusting God to heal me all the way. I mean, He has healed my pain. Why wouldn't He heal the deformity as well?

So what do I do when the answer isn't obvious? I go to my mom, my rock. After a long talk I have decided to keep trying to get this surgery. Maybe God wants to heal me through surgery. And if not, then KP will keep denying my appeals.

So my first step is to reconnect with Dr. Edwards II and to get this ball rolling. Wish me luck!

August 13, 2014: My Image

No! Its the middle of August and I've only lost 10 pounds! Not enough to see a difference. *pout*
Still have 23 lbs left to lose to reach my goal.

Its always been a problem. Weight loss. I used to have fast metabolism and since I couldn't
exercise or run around because of my back problem, that metabolism was a huge blessing!
But as I got older (after high school) my metabolism slowed and the pounds slowly began to pack

I've always been self-conscious of my body because of the square-shape my back forced me to have. And because my upper torso is pulled down I have a pile of skin around my waist that makes me look a bit overweight. So gaining weight was salt on an open wound. Its so hard to overcome that self-consciousness when I have 2 physically fit roommates.

But I must overcome it!! I hate constantly feeling down about myself.

How do I do that? In a world where I am constantly reminded about what the "perfect body" is. In a living space where its constantly shoved in my face by the presence of my roommates. Always exercising, always going for runs, always eating healthy. I really want to be healed. To feel better about myself. Yes, image isn't everything... but its still something...