Temporary insanity

Moving sucks.
I am officially no longer a Dallasite. Since my lease is ending this week and my surgery is coming up so soon (less than three weeks away--16 days to be exact), I decided to move in with my parents in Kennedale. My dad and sister (Misty) work from home, so they'll both be able to take care of me. Mom works, but she'll be around me quite a bit, I know!

My other sister, Wendy, will also be living at home for a few months while she opens a new business in the area, so we'll have a full house.

While I love my parents and their home, I hope to be back in Dallas, living on my own, by May. We'll see how everything goes.

So Saturday and Sunday, my family helped me move. Today, I'll clean out my apartment and turn in my keys. *tear* Moving was awful. I hate it. When I move next time, I won't be able to help that much. My family (sorry again!) will probably have to do most of the work as I will still be recovering.

You've got to be kidding me!
Last night, I was in my bedroom at my new residence unpacking some things when I came across my mail from this week. In it was a letter from my insurance provider, Aetna, dated Dec. 18, 2008 (less than one month before I have to go in for surgery).

The letter said that they were denying coverage for all parts of my surgery.

Let's let this sink in a little.

Denied. All parts. I'd have to pay for everything. Impossible to do.

Here's the rundown of all the surgery procedures they denied (a lot of these were given to me as abbreviations, some of which I knew and others I did not):

• Arthrodesis Post, for spinal deform, with or without cast; 7 to 12 vertebral segments 1 time--COVERAGE DENIED
• Posterior Segmental Instrumentation; 7 to 12 vertebral segments 1 time--COVERAGE DENIED
• Allograft for spine surgery only; Morselized 1 time--COVERAGE DENIED
• Autograft for spine surgery only (including harvesting the graft); Morselized (sep incision) 1 time--COVERAGE DENIED
• Bone Marrow Aspirat only 1 time--COVERAGE DENIED
• LA, FA & FO (UN/BI W/DE SP C, CA EQ A/O N RT(S) (EG SP/LA R ST) SI VE SE TH(SSO) 1 time--COVERAGE DENIED
• LA, FA & FO (UN/BI W/DE SP C, CA EQ A/O N RT(S) (EG SP/LA R ST) SI VE SE LU (SSO) 1 time--COVERAGE DENIED
• Osteotomy of spine, posterior or posterlateral approach, one vertebral segment; Thoracic 1 time--COVERAGE DENIED
• Osteotomy of spine, posterior or posterolateral approach, one vertebral segment; Lumbar 1 time--COVERAGE DENIED
• Arthrodesis, posterior or posterolateral tech, sing level; Thoracic 1 time--COVERAGE DENIED
• Arthrodesis, posterior or posterolateral tech, sing level; Lumbar 1 time--COVERAGE DENIED
• Arthrodesis, posterior or posterolateral tech, sing level; each additional vertebral segment 1 time--COVERAGE DENIED
• One day surgical--COVERAGE DENIED

Shit. I freaked out. I told my parents. Dad seemed calm and said we would call the doctor and Aetna first thing in the morning since it was currently after 5 p.m. on a Sunday. Mom freaked out more than me.

Apparently, in all the denials, it said that there wasn't enough medical evidence to show that this was medically necessary. It said my doctor failed to provide a required CT scan or MRI. Well, I haven't had either of those yet. Those are done close to the surgery date, so they give the most current view possible.

In the letter, it also discussed how to appeal. It said they have 30 days to make a ruling on my first appeal. I don't have 30 days!! My surgery is in 16 days!!

Sigh of relief
First thing this morning, I called my doctor's office and left a message for my patient coordinator. Amber explained to me the situation.

They received the same letter from Aetna last week. She immediately got on the phone with them and argued about why this is medically necessary. Eventually, they setup a "peer to peer" consultation between my surgeon and an Aetna doctor. Dr. Hostin explained all the reasons why I need this and gave them proof.

Aetna conceded. Hallelujah! They said they'll cover me for the surgery and everything that goes along with it.

One thing though, since my insurance plan is changing on Jan. 1 (it's still with Aetna, but just a better plan), we would have to re-apply for approvals on Dec. 31. Amber said not to worry. She said they assured her that it would be approved again. I should have a definite 110 percent answer by next Monday.

Breathe. Breathe. Breathe.

One more thing
I also received a letter from Dr. Nguyen's office. He's the on-staff physician at the hospital who gives me clearance for surgery at the hospital. He also will check on me each day while I'm at the hospital.

The letter asked for all my medical records from the last two years from an array of different types of doctors. This letter was dated Dec. 18, 2008, so I basically just received it, too.

Thankfully, of the types of doctors they asked for, I had only been to one clinic in the time period requested. I gave my wonderful father authorization to pick up my records, and he is doing so today for me. This was a relatively easy thing to do, but it would have been awful and near impossible had I seen more of these doctors. You would think you'd get a little more time on these things!

In summary, there were many headaches this weekend and even some tears. For the most part, everything has been resolved and is on-track. This surgery stuff is a very complicated business! Thank goodness for my wonderful family, friends and patient coordinator for getting me through this. xoxo to you all!

Celebrity skin

Fun with Google
I'm stealing this idea from my friend's blog about dealing with (and beating! I'm still smiling about that) Hodgkins Lymphoma.

I did a google search for celebrities who have scoliosis. I know I shouldn't be happy for someone to have to live with a disease just because I have it, but it still kind of made me excited to know I share this with some really amazing people. Here are the results. I'm only including those who I've heard of, which basically means I've left off all the sports people (no offense). I'm adding Wikipedia hyperlinks to their names, in case you want to click to learn more about them:

• Chloe Sevigny - Actress (she's probably the coolest person on this list.)
• Daryl Hannah - Actress
• Elizabeth Taylor - Actress
• Isabella Rossellini - Actress/Model (in addition to some major movies that you probably know her from, she made a great mini-movie on YouTube about bees that I saw on my friend Lisa's blog. It makes me love her more.)
• John Lydon - Lead singer of Sex Pistols
• Kurt Cobain - Lead singer of Nirvana (my jaw dropped on this one)
• Laura Dern - Actress
• Linda Blair - Actress
• Liza Minnelli - Actress (and dancer, thank you very much)
• Renee Russo - Actress/Model
• Princess Eugenie of York - Granddaughter to the Queen (UK)
• Sarah Michelle Gellar - Actress/Model
• Tutankahman - Egyptian Pharaoh
• Yo-Yo Ma - Cellist
• Vanessa Williams - Actress (Ugly Betty's Wilhelmina)
• Sarah Polley - Actress
• Rebecca Romijn - Actress/Model
• Alexandra Marinescu - World Champion Gymnast (ok, so I've included one sports figure. I want to show that scoliosis, unless too severe, cannot keep you from accomplishing great things physically.)

I would say that having scoliosis doesn't inhibit you from doing what you want to do in life, but I do think that that depends on the severity and your access to medical treatment. I still think this list is really impressive and proves that many of us have problems, even seemingly perfect celebrities, and still go on to do great things with our lives.

Have a very happy holiday!

Interesting development--this is good

Brace yourselves
In the trail of paperwork that is now flowing from Dr. Hostin's office to me, I noticed that one of the documents was called "surgery info without bracing."

Without bracing? I e-mailed the patient coordinator I'm working with at this point (there are two of them that work with me at different stages of the process) to ask if this means I will not have to wear a brace.

I've never heard of anyone going through this surgery and not having to wear a brace. I'm going to ask on SSO (my support forum) if they've heard of it. Typically, a person wears the brace almost immediately after surgery and for the next four months while doing everything except lying completely flat.

My patient coordinator said this:

At this time Dr. Hostin feels like you will not need a brace after surgery. The younger a patient is and/or the smaller the fusion, the likelihood of needing a brace goes down. You are still young enough that you heal more quickly than someone in their 50’s plus your fusion is more in your upper back and doesn’t have a lot of weight bearing pressure. Once you get sitting up in a chair and then walking after surgery, if you feel you might like the added support of a brace, we can order one for you then.

My thoughts on this
I'm happy about this because it makes me think that this may not be as hard on me as it is for a lot of other people. (Don't jump to conclusions here--I know this will still be one of the hardest things I will do in my life.)

At the same time, I'm a little scared about not having the support, but it sounds like if I get too worried then I can get one at anytime. Not a bad deal.

So, no yucky white body armour for me! This will be potentially a little less socially awkward for me. Woo-hoo!

Holy crap! This thing is going to cost money!

First bills

Today, I spoke with the hospital about the MRI I'll be having on Dec. 29. The MRI is one part of preparing for surgery. I didn't realize it was going to cost me money!

Not just a couple hundred bucks either. The full cost of the MRI is $6,897.36. I've already met my insurance deductible, but not my out-of-pocket maximum. Therefore, my insurance will pay 80 percent, and I'll pay 20 percent. For some reason, I was under the impression that I reached my maximum already and all of this would be free until the first of the year. I'm so sad to say that I was mistaken.

So my second bill for this will be for $1,379.47.

My only other bill was after my first appointment in September at Baylor Scoliosis. It cost me $356.54.

So my new running total for this surgery is.....drum roll.......$1,736.01. Good-bye savings account!

UPDATED: I had them switch my MRI to the first of the new year, so it will count toward my deductible/out-of-pocket maximum for next year. I feel better about this now.

Pop quiz, friends

Preparations
I've been thinking a lot lately about what it's going to be like to spend two or three months in bed. I'm sure most of my time will be spent sleeping and taking pain pills. In the time that I am able to do more and before I am ok'd to start telecommuting to work, I think I'll probably be reading and watching a lot of movies.

I am an avid reader. I read at least one book a month as it is now and see a movie maybe once every week or two, and I currently work at least five days a week. I can't imagine how many more I'll be reading or watching if I'm just in bed all day for days on end. But I don't want to just watch a bunch of crap or whatever is coming on TV, and I don't want to re-read (again) all my books.

If you were on a desert island...
So here's the dealio--I want to know the books and movies that you would recommend for me to read/watch.

Give them to me in the comments. Here's the rules:

1. First come, first served --you cannot give the same answer as anyone else in the comments. Each answer has to be new, so I get a little variety.
2. You can't choose one the books or movies that are already on my favorite list. Favorite books: To Kill a Mockingbird, Harry Potter (all of 'em), A Tale of Two Cities, Shopgirl, The Red Tent, The DaVinci Code, Leaves of Grass. Favorite movies: Juno, Anchorman, Rushmore, Amelie, Breakfast at Tiffany's.
3. You can only pick ONE book and ONE movie. UPDATED: LIST AS MANY AS YOU WANT (Becky intrigued me on this one!)
   

Thank you for playing. I look forward to your answers!

General schedule for day of and days after surgery

This is when I get scared
As I posted yesterday, here is some more information from my patient coordinator about what to expect.

• day of surgery: I'll be admitted to the hospital two hours prior to my surgery. Once I'm in the surgery room & the real action is about to begin, an OR (operating room...but surely you all knew that at least from Grey's Anatomy, right?) staffer will let my family know it is beginning. (btw, my heart is starting to race as I type this.) The nurse will "call out" (their words, not mine; I guess it means they'll shout my name and if someone is there for me, they'll give them my info) each hour with an update. Dr. Hostin will visit with my family after it is all complete. Then my family will be able to see me. I'll be admitted into the ICU (Intesive Care Unit) for the first night.
• 4-5 days after surgery: I'll be moved to a regular room the next day after surgery, provided that I am doing well. I will stay in the hospital for 4-5 days or longer if it's medically needed.
• after hospital release: I will be transferred to the Baylor Institute for Rehabilitation in Dallas. I'll stay there for 7-10 days. While here, I'll learn how to adjust to my new body position, my brace and life after surgery. I'll learn daily activities like how to get in and out of bed, sit down and up from a chair or potty, out and in of the shower, take off and put on my brace, etc. Visitors will want to check my schedule before coming to my room, as I will be in and out each day.
• Five post-op visits: I will go to Dr. Hostin's office frequently to check how I'm progressing and healing. They'll check my wounds, how my brace is fitting, take x-rays and overall see how I'm moving, sitting, walking and functioning. My first visit will be the day I am discharged from rehab. Then, I'll visit them 2-3 weeks from that, one month after the second appointment, 4-6 weeks after the third appointment and then 6-8 weeks after the fourth one.
• ??? to four months after surgery: I'm not sure when they put the brace on for the first time. Maybe right away. I don't know. I do know that I will be in a brace at all times unless lying completely flat for 4 months. They recommend wearing light, plain t-shirts under the brace to protect my skin and keep the brace clean. After four months, they'll help me wean off wearing it. I hear from my SSO friends that it can be a little scary to stop wearing it because you feel so fragile.
• 8-12 weeks after surgery: I will return to work at least part-time.

While searching for a scoliosis support group (I found SSO), I stumbled across a different forum that had quite a few complainers in it. I'm sure that most of their complaints were very justified. Some people practically shouted "don't do it!" because they knew so & so who died or had their surgery messed up and had to have multiple surgeries or the rods and screws broke through the skin and lots of other wonderful stories. (everyone briefly chant here with me...this will not happen to me, this will not happen to me, this will not happen to me.)

The comment that stuck out the most to me was a woman who described the first few weeks after surgery as, "somewhere between hell and Nazi Germany."

Great.

Sounds fun, right?

Timetable and useful information

FMLA update
For those of you who have been following this (hello my lovely 13!), my FMLA and salary continuation paperwork has been accepted by HR. My contact said everything "looks good" and is "on-track."

Next step -- pre-op
I e-mailed my wonderful patient coordinator today to ask about when my next appointment would be. This is what I have found out:

• 6 weeks prior to surgery: sign and return "Surgical Contraindication" form (done); this form explains that I cannot have ANY tobacco products for the six weeks prior to and six months after my surgery. Additionally, I will not be able to have Aleve, Motrin, Ib-profen and any other anti-inflammatory or blood thinning product during this time. At my blood test, if any of these products or substances are found in my blood, my surgery will be cancelled. (du, du, DUM!)
• 2 weeks prior to surgery: blood work will be done to check for nicotine, pregnancy and other vile conditions.
• 1-3 weeks prior (time is unestablished): this is one of those points that my mom, Grandma and possibly more of you will want to look away. Hey, I'm trying to be honest as possible, so if any of you ever have to do this, you'll know EXACTLY what to expect. I'm to stop taking birth control at least a week prior to surgery or don't start a new pack if my cycle ends 2-3 weeks prior. I'll keep the exact time to myself.
• 1 week prior to surgery: pre-testing and pre-registration at the hospital; I'll have a platelet test to show how my blood clots and a chest x-ray (EKG). This will be scheduled with an internal medical physician on-staff at the hospital (Baylor Plano) named Dr. Nguyen. Dr. Nguyen will also see me each day I'm in the hospital.
• Week of surgery (not a specific day): Pre-op visit with my surgeon, Dr. Hostin; A family member (mom?) will go with me. Dr. Hostin will go over the procedure, risks and answer any questions I have. I'll also need to sign consent forms and do any additional testing they see fit, which could include a myelogram/CT (looks at my spinal cord using dye), discogram/CT (enhanced x-ray using dye), pulmonary test (checks my lung function), stress test/cardiac (checks my heart), MRI (imaging technique) and/or bone density testing. Additionally, I will be fitted for my brace, which I will wear AT ALL TIMES, unless lying completely flat, for FOUR MONTHS.
• 5 days prior to surgery: I'll start washing my neck, chest, abdomen, sides and back with Hibiclens Antibacterial Soap, which they say is stronger than the average soap. I need to do this daily up to the day of surgery (I'm expecting a joke from Carra here).
• 2 days prior to surgery: I'll swab each nostril twice a day with a prescription cream to help reduce bacteria and infection.
• 1 day prior: one last blood test at the hospital to type my blood and send this information to the blood bank.
• Additional appointments: I have the option to take a tour of the hospital to see all the areas where I will be. I think I'd like to do this. Also, I'll need to meet with a staff member from the rehab facility to go over information about my time there.

To make this really suspenseful, I'm going to wait until tomorrow to post the schedules for the day of my surgery and timetable for after my surgery. I know, I know...you'll be waiting with bated breath until then! Be strong, my friends. We all love a good cliffhanger, right?

For now, you can comment on the above information and give me any remedies you know of for headaches that do not require any of the aforementioned pills or any anti-inflammatory or blood-thinning agents.