tomorrow i'll be taller...

Well friends, it's here! Tomorrow morning I'll be getting up at 4:00 a.m. to get the hospital by 5:00 a.m. I am still awake, and am not sure if I'll be sleeping at all tonight so I thought I'd get one more post off before I'm incoherent for a week or two...

Today was a strange day emotionally for me. I have cried a little, cried a lot, and then felt totally calm. I felt scared, felt like calling the whole thing off, and then realized for the zillionth time why I'm doing this now every time I take a painful step. I am glad I got to spend Christmas with my family, and had such happy things to focus on instead of the looming surgery. But after we got back, and the warmth of the Christmas glow had faded away, I was face to face with reality, and I have to say it's hard to deal with. I caught myself mentally checking off every time I did something for the "last" time with my back crooked. It's going to be a strange new world with a straight spine that doesn't bend...I'm excited about that and terrified.

Currently I am feeling very nervous, but not about my decision. It's more like the nervousness you get when you're strapped into a rollercoaster and are about to take off, or when you have a big test you know all the answers for, but you're ready to get done and overwith. It's scary, there are a lot of things that could go wrong, but I have peace that I'm doing the right thing, so I'm ready to jump off the diving board into the deep end.

I feel very comforted by all the prayers that have been said for me, will be said for me and are being said right now. Thank you for lifting me up. This is the hardest thing I've ever done, and the scariest. Knowing that people are praying for me really encourages me, and makes me feel safe.

In case you want to know the details, I should be going under anesthesia around 7 a.m., and the surgery itself should begin around 8 a.m. It takes a while for them to put in all the fancy wires and hook me up to the amazing technology that will help the surgeons know I'm okay and can still move my legs when I wake up. I should be in surgery for around 7 hours total, and in ICU tomorrow night, and maybe the next day as well.

The two biggest risks are in this order, infection and paralysis. Please pray that I don't have a problem with either one! Please also pray that my reaction to the heavy, heavy medication needed for the pain will not make me as sick as in the past. I know that's a long shot, but I figure with God, it never hurts to ask!

I'm planning on being in the hospital for at least 7 days, maybe more. Most people with this surgery stay for at least 7 days, sometimes up to two weeks. My mom is here to take care of me, and my husband is by my side as well. I feel very blessed to have support from them, and my friends here in town, as this will be a rough couple of weeks. I don't have to worry about a thing because they will be here to take care of everything for me, and not everyone going through this gets that kind of comfort.

I'm going to try and blog about my recovery as much as I can, but I probably won't be able to for a few weeks at least.

Well, I'll just end with this....I am going to grow tomorrow. That's pretty cool. I have at least 2 inches, maybe 3 lost in my curves. My surgeon thinks I'll get at least an inch, to an inch and a half, back tomorrow when they straighten me all out!

So next time you see me, I'll be taller....

(p.s. please pray; getting taller is great and all, but this surgery is freaky! thanks!)

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."  Helen Keller

acceptance...

Next week at this time, I should be out of the Operating Room, and in Intensive Care, with a brand new spine. That's a lot for me to handle at the moment. In all honesty, I have to reassure myself every day, multiple times that I am making the right move. And then a pain like lightning goes down one of my legs and I am reminded, and reassured I am making the right move.

I touched on this before, but this choice will affect me the rest of my life. There's no turning back after I'm wheeled into the OR. This surgery will change the way I do things, from putting on my shoes, to feeding my dog for the rest of my life. (That "rest of my life" part keeps playing in stereo over and over in my head lately.)

The hardest part of the last few weeks has been adjusting my thought process, and accepting the fact that I have a deformed spine. I know that sounds weird, as I've had scoliosis since I was 12 years old. But my deformity has been, (for better or worse, I'm not entirely sure) well balanced, and well hidden. The progression has been slow, and up until 3 years ago, I never had more than mild discomfort that could be treated with exercise and an occasional Ibuprofen. I never thought too much about my spine after I stopped wearing my back brace. And that was in large part to my former back doctor's instruction.

After I stopped growing, they checked my curves one last time and proclaimed that I was "done." I could go on with the rest of my life, and my scoliosis would never get any worse. They told me that my spine was just like everyone else's, it just x-rayed a little differently. So that's the way I thought about my spine. Nothing to be concerned about.

Now that I'm facing a 7 hour surgery, a complete fusion and losing the ability to bend for the rest of my life, I would like to call that guy and say, I know you thought you knew it all....but obviously, you didn't. I wonder if that day, instead of saying "don't worry, you'll never get any worse" he had instead said, "there are no certainties, we hope you don't progress but there is a chance you will" if it would have made this choice any easier. Because for the last 10 years, I walked around never giving my back a second thought. Then 3 years ago, I got a severe jolt of pain and came to the realization my spine was not just like everyone else's, and surprise, surprise, my scoliosis had gotten much worse!

So, over the last few months and especially these last few weeks, I keep having to tell myself, that I really do in fact, have a deformed spine. Sometimes, when my fear of the surgery is at its worst, I try to convince myself that my back isn't that bad, and wouldn't it be much more fun to not be fused for the rest of my life? But then I feel the aching burning that is my every day norm, and realize, hey, I can only bend from the waist as it is because any other bending causes extreme pain. I could ignore it a while longer, I'm sure. But ignoring it wouldn't make it any less curved, or any less painful. 

I have found that only by accepting the state of my spine, that I am able to move forward with doing what needs to be done about giving it the best chance for a healthy, long life. Denial leads to inaction...acceptance leads to action, and Lord willing, healing....

One last thing I am working on accepting: there is no "done." As long as I'm alive, there will be something that needs to be worked on, worked out, healed or sanded away. My scoliosis will no longer be able to progress, but that doesn't mean all the hardware holding me together will not cause problems. There are no guarantees with my back, or with any other part of my life. The one thing I've learned by heart through all these difficulties is that I only have today, and God will give me the grace and strength to be obedient to Him, with what I've got, where I am. He may have me here today, but it does not mean I will be here tomorrow. "Done" does not really exist on this side of Heaven. And as long as you don't expect "done", when the changes, hurdles, or pains come, they will be easier to accept....

But probably still not easy....

making a list...

It's coming. Really soon! So I have begun the "nesting" process that over the last three surgeries, I feel I have perfected. There are actually quite a few very helpful things to do to get yourself and your home ready for a recovery that follows major surgery. Here is the list I am currently working on. The list is made up of things I've done before my last surgery, have had suggested to me by friends on the NSFF, or things I wished I had done after my last surgery.

For the House:
  • Give it one last REALLY good cleaning: I will not and be able to do any toilet scrubbing, floor sweeping, or mirror wiping for at least 3-6 months. After my last cleaning, I then resign myself to watch the dust bunnies grow and eventually take over the corners of my home. Hopefully they will be nice, friendly, cuddly dust bunnies.
  • Re-organize my closet and chest of drawers: Anything in low drawers or high in my closet is taken out and put on the three shelves in my closet I can get to without reaching up or down. Since I'll mostly be wearing sweatpants and pj's, I don't need a lot of room. Shoes also are very tricky since I won't be able to reach my feet, let alone tie shoelaces, so I get all slip-on style shoes and place them in a line on the floor where I can slip into them easily. While doing this, I remember to thank Jesus I was born in, and currently still live in a state that has about a week and a half of winter, and flip-flops are worn virtually all year round.
  • Re-organize the kitchen: Any pots, pans or cooking apparatuses (such as my trusty crock-pot) are taken out from under the counter and placed where I can reach them easily. I also put anything I eat/drink a lot of, like my organic milk, on the middle shelf in the fridge. Again, everything should be at a height I neither have to reach up to or down to. I won't need this right away, but once I'm feeling a little better, I won't have to ask my hubby to do it for me.
  • Get the raised toilet seat out of the garage. yep. I just said "out of the garage" because I already have one. 
  • Put a stool in the shower: It's good to have a place to rest in the shower. It's amazing how tiring standing is after surgery, and showers are actually quite exhausting. Having a place to sit down minimizes the risk of falling. If you don't want to buy a stool, a great substitute is the raised toilet seat, (as long as it has legs).  It can be brought into your shower, if it's big enough, it's nice and high, and has handles. 
  • Buy a grabber, or two: These are another post-op MUST HAVE. It is incredibly frustrating to drop the remote, have it three feet from your hand but out of reach because you can't bend to reach it. What I would like to figure out though, is what to do about getting the grabber off the floor when you've dropped it.
The Must-Have Grabber
  • Set up a mini-pharmacy/mini-fridge next to my bed: I clear everything off my bedside table and replace it with a bin full of painkillers, crackers, applesauce (to eat with the medicine) a note pad to keep track of my doses, water bottle, and alcohol wipes (they help with nausea).
  • Ask friends for any and all DVD's they will let me borrow: I won't be able to read because of all the heavy painkillers, so TV is essential for helping me get through those boring and painful days. Set them on a buffet where I can access them easily.
To Bring to the Hospital:
  • Freshly laundered Bathrobe: This is a MUST. Unless you like walking down the hallways, hospital gown flowing in the wind...
  • Slippers with a good rubber soul: Traction is very nice, and your own comfy slippers are much better than the socks they give you.
  • Underwear and socks
  • Deodorant: You're not showering for a good 5-9 days, and will be smelly. Yuck. At least try to mask it with deodorant. If you are even aware...which you probably won't be. So ask whoever is there with you, like your husband or mom, to not let you stink up the room.
  • Face wipes/baby wipes: These are great for in the hospital, because like I said, you'll be stinky. They are also great for at home, because you won't be able to wash your face in the sink, because you can't bend that far. These are a MUST if you like having a clean face. And I still use them!
  • Hair clips/ponytail holders: If you have longer hair, it's nice to get it out of your face. Again, after 5-9 days with no shower, it will be a rat's nest by the time you leave. But at least you can keep it from getting in your eyes!
  • Chapstick
  • Cellphone and charger, though I don't think I used mine. But if you end up being there longer than you expected, or if you don't have someone staying with you in the hospital, these are good to have.
  • Your own pillow, with CLEAN pillowcase: I can't sleep without my memory foam pillow, but I have heard that after this surgery in particular, I will need to be careful about not propping my head up too high. We'll see. I'd rather bring it, and not need it, than wish I had it. It's also nice to have pillows to cushion you on the way home.
  • Earplugs: I started sleeping with these when I got married to a man who saws logs while we sleep. But they are also great in a hospital where there is constant beeping, bumping, humming and various other noises. They help you drown them out just enough to get much needed naps in-between all the vital-sign checking and whatnot. 
Earplugs
  • Contacts/Glasses: If you wear contacts, they make you leave them out for the surgery. If you're blind like me, you will want to put your contacts in as soon as you're coherent. 
  • Toothbrush/toothpaste
  • ipod/mp3 player: I am planning on being in the hospital at least 7 days, so having something to make the time go by can be helpful. I remember I listened to music when my pain was really bad after my last surgery and it was helpful. I will also make sure my favorite podcasts are ready to go, as they are a great way to pass the time. I think this depends on each person and each recovery on how helpful this will be, as you may not even be coherent enough to know you're listening to music.
  • Comfy clothes to wear home from hospital: I.E. loose, stretchy pants and tops that are easy to get on. Jackets that zip up the front are great; hoodies that you have to pull over your head, not so great...
  • Bucket to throw up in on the way home: Just sayin'......No but really. Those meds mess up your stomach, and depending on how far/bumpy the drive is you may feel very car sick even if you've never been car sick a day in your life. There's nothing more stressful than feeling like you need to throw up, being in a ton of pain, and being in a car driving down the road. Just having the bucket there will make you relax a little knowing you won't get it all over whomever was nice enough to give you a ride home...
LEAVE AT HOME:
  • Wedding rings and other jewelry I usually wear. It's not worth the risk of getting lost or stolen at the hospital.
                                                  For Myself:
  • Get one last haircut. It'll be around 6 months before I get another one.
  • Trim toenails. Won't be able to reach them for quite some time.
  • ASK FOR HELP: Having friends who can help with laundry, walking/feeding the dog, running to the grocery store or pharmacy, or can give you a ride to post-op appointments are awesome. It never hurts to ask! And asking people to help you with specific things is important. People probably have no idea that you won't be able to put your own shoes on, let alone reach the dog-food in the pantry...
  • And finally, have your Mom come stay with you. Cause really, who doesn't want their mom to take care of them when they don't feel well? Having a mom that is medically trained is very helpful. Try to have one of those if you can at all manage it. I highly recommend it.
And that's all I've got. I'm sure after this surgery I'll have things to add to it...

high anxiety...

Today I had what may be my last MRI, because after my surgery I may not ever be able to go into the large magnetic imaging device due to the massive amounts of metal that will be fused to my spine. The magnets that give MRI's such great images of soft tissue (ie. muscle and nerves), are so strong that they can rip the metal from my bones. We don't want that. I will be able to have CT Scans and X-rays, as they don't use magnets.

It was strange thinking about that as I lay in that tiny little tunnel, and the surgery felt a lot more real and final than it has previously. Another thing that made it real was talking with the scheduling nurse on my way home from that appointment. I have decided to go with December 27th as my surgery date. That's only a few weeks away! It's hard to immagine that by February 2011, I will have a fused spine, and that I will have that fused spine the rest of my life.

The difficulty of choosing something that will affect you the rest of your life is very overwhelming. And unlike picking a college, or a husband, or a home, there is little to look forward to in this decision. When making a life-long commitment, there is usually something wonderful to ease the weight of that choice. I only have this: When I'm 68, I will not be hunched over, unable to walk or breathe. Yay...?

Don't get me wrong, not having to worry about being completely deformed and all the health problems that go along with that, is the biggest reason I'm having this surgery now. However, that is hardly a tangible reward at age 28, walking in perfect health. And it doesn't stop me from having anxiety every time I think about how awful the recovery is.

As I discussed surgery dates, I kept hearing Mel Brooks' theme song from the movie "High Anxiety" playing in the background of our conversation. For those of you who have never gotten to enjoy this gem of a movie....here's the theme song....

Anyway...I needed a good laugh...and these lyrics made me smile.


High Anxiety
Whenever you're near
High Anxiety
It's you that I fear

My heart's afraid to fly
It's crashed before
But then you take my hand
My heart starts to soar

Once more

High Anxiety
It's always the same
High Anxiety
It's you that I blame

It's very clear to me
I've to give in
High Anxiety
You win 

how low can it go...

arrow points to pelvic fixation screws
I learned during my visit with my surgeon on Thursday that if I go through with this surgery (which I am planning to) I will have to be fused from somewhere around T1 all the way down to my sacrum. I was not expecting this, and was simultaneously scared and relieved. Relieved you ask? Yes, relieved because even though it will be a longer fusion, it will provide a great amount of stability for my spine. I was worried that if we stopped the fusion at L5, those last vertebras wouldn't last very long under such enormous pressure from my long fusion.

It is scary, as they sometimes need to secure this kind of fusion to the pelvis, and the screws are pretty big (just check out this picture to the right!).
And I'm sad that I'll lose that last bit of flexibility that having the L5 loose would have given me. But, long term I am glad that I won't have to worry about going back in for a later surgery to correct any herniated discs or pain from the pressure.

The picture here is what my fusion will probably look like when all said and done, minus those scary screws hopefully. It may not go up that high, but it could.

view from front
Cool thing is, I've talked with the guy these screws belong to, and he just got back from skiing. He also posted these VERY helpful and encouraging images of his ability to twist and bend after the surgery. (Bend from the waist that is). Click Here to see them! I figure if he's able to do that with THOSE things in him, I should be just fine!

Not sure if I will need screws quite that big, or at all, but I will definitely be fused to the sacrum:



This prevents any further tilting, and because of the way my spine curves sharply to the left, it is absolutely necessary.

I still have a hard time imagining myself with all the metal inside. But, I know that at the rate I'm progressing, I would be severely deformed by the time I was in my 60's...if not sooner.

inside out...

Here is the best I could do with a not so fancy camera phone, I forgot to bring my actual camera. Maybe next time!
here is a view of my FUSED L2-3 and my tilt


So now you can see why I am a little concerned right??? =) The arrow in the second photo is pointing to the area where I've already been fused. You can see the light doesn't come through that area because it CAN'T. There is no disc, just bone.  You can also see how far my shoulders actually tilt up on one side. 

a big day...

5:32 PM Posted by Rebecca 0 comments
So, I met with my surgeon for the zillionth time today. After much prayer, hemming and hawing, alternating between bravery and absolute terror...I have decided to go forward with the surgery.

I talked with him for almost an hour, and went over again all the risks and rewards, but I just keep coming back to this one reason for doing it now: Once it's done, I can move forward with having kids. I don't have to worry about needing it in 10 years or less. I am healthy and strong now, and I don't know that will be true in the future.

A big eye opener for me today was while he was measuring out my curves, and showing me how the instrumentation will be placed in my back, he said that it's likely I will still have small curves of around 15-20 degrees because of how severe my curves are now, and the fact that I'm already fused at one level. I will still be completely straight, and from the outside no one would know that the curves would still be there. I was a little disappointed that he may not be able to get them smaller. BUT...and this was the big deal to me, if I wait to have surgery, say for another 10 years, that 20 degrees could go up to 30...or more. The older I get, and the more progressed the curves become, the LESS correction you can get due to stiffening of the back muscles and the spine. So, if I wait 10 plus years, and then end up having to have the surgery, I could go through the whole insane surgery to not even get a FULL CORRECTION. Dude. Not cool.

So, I'm waiting to get the call from the scheduling nurse to find out what the surgery date will be. It will most likely be in January. I'm strangely excited and scared at the same time. I'm probably in some sort of denial...but I know my God is in control, and He's working for my good. I'll keep you posted!