About Me

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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Tuesday, August 7, 2012

Here's what the heck happened to me.


(MRI of the cervical spine- not actually mine. But what I like to refer to as angry squirrel face.)

You may recall from my July 4th posting that I was complaining of back/neck pain. I had no idea what I did to deserve such misery, but it ruined fun plans for the 4th, and as it turned out, it turned out to be a BIG deal.

I ended up making a doctor appointment with my primary care physician the week after July 4th. The pain had gotten so unbearable that I was unable to sit up or drive. It also involved nerve pain that shot down my left arm into my fingers. My doctor did some in office tests, documenting significant loss of function in my left arm. He ordered a CT scan and an MRI. When the MRI was read, the doctor called me to advise I had two ruptured disks, C5-C6 and C6-C7 that were compressing a nerve in my left arm. He contacted a neurosurgeon- on a Saturday morning- and told him he needed to see me right away. My primary doctor wasn't telling me all that was wrong; I'm guessing perhaps that was because it was out of his area of specialty and maybe wanted the neurology department to review the MRI results with me. My primary doctor called me later that Saturday and advised me to report to the neurosurgery department Monday morning. I thought this all this was pretty extreme for ruptured disks that although painful are not life-threatening.

When I arrived Monday, the front desk advised I would be meeting with a physician's assistant named Molly, and that she would only bring in Dr. X, a neurosurgeon, at the end of the appointment if she felt it was necessary. At this point, I'm still in the dark as to what for sure is wrong with me. When Molly arrived in the exam room, this is what she said:

Molly: (thinking this was just about the ruptured disks issue) Okay I'm just going to quickly pull up your MRI and take a look at it. I'll explain the MRI results with you and we'll go over your options. If we need to pull in Dr. X (neurosurgeon), I'll do that at the end of the appointment.

(She pulls up results and reads through them for a few minutes. She is quiet. She is very quiet. She is not talking to me.)

Molly: (Looking right at me) Excuse me for a moment. She gets up and leaves the room.

Right away I'm thinking that is not a good sign.

Sometime later (I don't know how much time passed, I was too busy mentally freaking out), Molly walks back in... with the Department Chair of the neurosurgery department.(!!!) (Also not a good sign). He sits down and reviews my MRI. He is quiet while reviewing for several minutes, then turns to me and explains.

Dr. XX: Nikki, I've reviewed your MRI and there seems to be a problem. Although you were initially seen for pain related to 2 ruptured disks and a compressed nerve, what's bothering you (the pain) is not what's bothering us. We have identified a much more significant issue. (He pulls up the MRI screen shots, which look like an angry squirrel face to me, and is pointing out different white and light gray markings that mean absolutely nothing to me.) You have a severe, potentially life-altering spinal cord injury that needs immediate medical intervention. We are treating this as a medical emergency and need to get you into surgery asap. If you hadn't come in for the other issue (the ruptured disks), we would not have identified the issue until it was too late, as it would not have caused you any symptoms.

So, although I've never been in a serious accident, played contact sports as a child, or had any back pain or issues EVER in my life, I apparently have a congenital spinal cord deformity (that I had no idea I had) which caused what they call a non-traumatic spinal cord injury (stenosis), meaning it wasn't from an impact or accident, it happened over time. The spinal cord was compressed and was at risk of being snapped in half. The doctor told me that if I had even been so much as in a minor fender bender/rear ender, tripped and fell at home, having someone rough housing with me, or any other little impact, my spinal cord would have snapped in two at the base of my neck, leaving me quadriplegic. He said that even without an impact, the spinal cord would eventually snap out of compression. He advised me it wasn't a matter of IF that would happen; it was a matter of WHEN. While the surgery did carry a larger-than-I-was-comfortable-with chance of causing quadriplegia, (like he said, most surgeons try to avoid any contact with the spinal cord during a back surgery), he said there was a 100% likelihood of becoming a quadriplegic without this surgery. He said he was much more concerned about the outcome of NOT having the surgery. He advised of another 30 year old patient who also had this rare condition and chose not to risk the surgery. Unfortunately for him, 2 months later he was rear ended at a stop sign in a relatively minor fender bender. The paramedics were shocked that a man could be injured from the minor accident but took him to the emergency room. The man became a quadriplegic from that accident, and there was nothing my neurosurgeon could do at that point.

He offered to set me up with a second opinion with either the Mayo Clinic, or the University of Minnesota, both of whom he was well-connected and could get me in right away. But he stated that with this severe condition, I would not get a different opinion and that I should make my decision soon before something bad happened.

I didn't feel as though I had a real choice in the matter. Not with those outcomes. So I was scheduled for surgery immediately with the department chair, who, lucky for me, happened to specialize in spinal cord trauma surgery. He is also the president of the neurosurgery association for the state of Minnesota.

He advised that after repairing my spinal cord, they would also do a multilevel cervical fusion to repair the 2 ruptured disks and the compressed nerve. I would have plates and screws in my back. He also was going to remove bone spurs that were causing damage to the spine. He was concerned about my type 1 diabetes and how to manage it during a traumatic surgery procedure, and my endocrinologist and his team were contacted for a consult. A great plan was put into place- literally in 1 afternoon because surgery was scheduled for the following day- to watch my blood sugar and keep it stable during surgery, especially after having to fast for 14 hours prior to the surgery, and knowing I would be unable to swallow liquids or food after the surgery. I would be hooked up with both an IV for glucose and insulin, and afterwards for IV nutrition therapy and hydration since I wouldn't be able to swallow any fluids.

The good news kept rolling in. He then advised me how the procedure would be done. In order to prevent the risk of further damage to the spinal cord, he would need to perform the surgery through the front of my neck, slicing through the neck muscles and tissue to the back of my neck. He said my windpipe, vocal cords and esophagus would be pulled to the side to avoid damage during the cutting. I was advised when I woke up from surgery, I would be unable to speak due to vocal cord trauma and unable to swallow for a period of days. I secretly wondered if the surgeon, if he hadn't become a surgeon, would he have become a serial killer? Cuz who can do that gross of a surgery, seriously.

My pastor called me at 10:30 the night before my surgery and prayed over me over the telephone. It meant the world to me and I felt at peace. I received SO many phone calls, texts, cards, and emails from dear friends letting me know they were praying for me, that their colleagues were having prayer circles for me in the morning at work, that their churches and were praying for me. A church I don't even attend crocheted me a prayer shawl and mailed it to me. I felt overwhelmed by how GOOD people are, even complete strangers. You can't convince me that people are innately evil! I even received 2 bone grafts from cadaver donations. I sent a long thank you letter to the family of the person who donated the bones to me (I will never know who they are; they will never know who I am, but I was able to send a letter through the agency responsible for arranging the donation).

Strangely, I wasn't nervous at all going into surgery. I was grateful, SO grateful, that this condition was caught due to the pain I was having from a totally separate condition. To think what could have happened to me if I'd never ruptured 2 disks in my back... (which I still have NO idea how that happened because I didn't do anything that I can think of). I went into the surgery calm as a cucumber, and the only part I was nervous about was the nurse putting the IV in my hand (can they seriously not find a less painful way of doing that????? With all our currently technology??? Geez.) I woke up several hours after the surgery, and had a smile on my face (see pic from previous post). I remember being so happy when I realized I could move my fingers and toes that I knew that I could deal with the pain of recovery or anything else. I woke up grateful, fully aware of what was at risk if the surgery had failed and immensely happy it hadn't. I recovered in the hospital, had great nurses and a great care team including diabetes educators who came in to check on my diabetes and also brought in gluten free food options for me from their own offices (once I was able to swallow), like yogurts, apple sauce, pudding, Ensure.

It's been 4 weeks and I'm still wearing my cervical collar 24/7. I cannot move my head. I can't bend. I can't lift my arms above my head (think of reaching up into a cupboard or washing your hair). I can't see anything that isn't in front of me, or anything that is above me or low to the ground. At church last weekend, I knocked a coffee right out of a woman's hand that was standing near me. I didn't see her. I felt so bad, but strangely she kept apologizing to me as if SHE'D done something wrong. I was the one who ran into her because I have no peripheral vision. Sooo funny that she apologized! I cannot drive. I cannot walk far or do anything for long periods of time. I cannot lift anything. The recovery is approximately 9 months, but will involve life-long restrictions regarding the weight I will be able to lift, and what movements I will be able to do. I've already been advised I cannot ever again do anything involving a risk for impact- sledding, skiing, contact sports, roller coasters, bumper cars, chiropractic manipulations, etc. Yep, okay that is fine. I'll find out on 8/15/12 whether I can take this blankety-blank cervical collar off or whether that will be extended.(Fingers crossed).

The other day I got a ride to the grocery store and accidentally ran my cart into the back of someone's heel. Now you know how much that hurts. The person turned around as if going to yell at me but then saw my cervical collar and my face all scrunched up in it and she apologized to me. WHAT? I ran into you, lady. I told her I was really sorry and she apologized to me again. I felt really bad but it was funny that she kept apologizing and I was laughing inside (because I wasn't able to laugh yet, for real. No sound came out and no throat movement, so it was just weird air-laugh coming out of my mouth).

I'm still experiencing pain in my spinal cord and in the neck area where the muscles were cut. And it's hard to sleep in this hard plastic cervical collar that digs into the back of my head, my back, and my chest. In fact, I have to sleep sitting up every night. I can't lay flat because 1. it hurts and 2. I can't get back up. It's hard to get used to sleeping in ONE position and never moving. There's no rolling over onto your side. You have tons of pillows behind you to prop you up and you fall asleep in the same position you've been sitting in for 12 hours. I think you fall asleep out of boredom, really. There's only so much tv you can watch and books/magazines you can read. Being unable to type or use the internet was awful. Talk about feeling out of touch!!

But still, there's a huge lesson to be learned (for me). That you can have such a horrible thing happen to you, and yet still feel like the luckiest person in the world. Yeah, I wonder why so many bad things have happened to me (health-related) in the past two years. And really, having this health problem come out of left field- a problem I should normally not even be at risk for- back problems- having never played contact sports or been in a bad accident, not being overweight, etc. The doctors were as shocked as I was. But sometimes that's how life goes. After each illness I've been diagnosed with, I've had to reinvent myself and redefine my definition of myself; who I thought I was; what I thought was important. This illness was no exception. While previously everything I had wrong with me was organ-related, this one was musculo-skeletal and unrelated to any problem I've ever had. I know I can live with whatever restrictions I'm given from this ordeal, because I've learned how to live with restrictions from my other illnesses- not drinking caffeine (heart related), following a strict gluten-free diet (celiac disease), multiple diet/lifestyle changes (Type 1 diabetes), strict medication management/adherence (grave's disease).

Life is precious. Each chance I get to survive something big is HUGE to me. I AM a survivor. I'm alive, I'm happy, I'm extremely grateful, every day. I can live with whatever those doctors throw at me because I'm ALIVE to live with them. So many people don't get that choice! I will keep spreading sunshine whenever, where ever I can. I really want people to know that no matter what they've currently got on their plate, it's do-able, it's manageable, you can do it.




21 comments:

  1. Wow, you have been through so much with this! It's great to see that you're still thinking so positively :) I wish you the best of luck in recovering xxx

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  2. Thanks for your update. I am so happy to hear you will be OK!

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  3. this is just effing CRAZY!!!
    and you are one lucky girl, come to think of it. I'm SO GLAD to see you're okay though. I wasn't sure where you had disappeared to.
    geeez.... this is rattling still.

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  4. That is so scary! You are a survivor for sure! I'm glad you're doing okay. Keep us updated.

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  5. Wow. I can't even imagine how you must have felt when you first got this news. I am very inspired by your continued positive outlook on life. I wish you all the best during your recovery!! Will be thinking of you!

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  6. Nikki, the grace you display is so incredible and inspiring. Thank you for being who you are, for being able to talk about all of this, and for being able to work through the hard, negative emotions, and display that constant positive attitude. You are amazing!

    Sending much love to you, and I know it's been some time, but if you need ANYTHING please don't hesitate to reach out for help.

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  7. WHAT IN THE HELL?! Seriously, what the hell. This whole story is crazy, and I'm so impressed by your outlook on the whole thing!

    I'm so glad that everything is working out well for you. I'll be thinking of you and waiting for your story to appear as a movie on the Lifetime Network. :)

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  8. I am in complete awe of your attitude, and how gracefully you've handled all that has come your way. You are a bright light in this world!

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  9. You have a new fan. ME! "...weird air laughter..." had me laughing out loud. A real laugh. I'm so proud of you for your positive attitude after all you've been through. Now I just have to figure out how to follow a blog so I can read your every post. Thank you for sharing.

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  10. Hi Nikki! I love your look on life! I saw Scott's posting and had to come here to read. Thinking about you and sending prayers your way for continued healing from surgery.

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  11. Wow. just... whoa. Lots of thoughts, hugs, and prayers being sent your way. You are an amazing woman!

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  12. You are amazing. Thanks for this post! Lots of love from a total stranger coming your way.

    -Patricia
    (Type 1, celiac, 2 hip surgeries...and still kicking butt).

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  13. Amazing story. Glad the DOC shared your story. Inspirational.

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  14. I'm so impressed by your awesome attitude.
    Sending healing prayers!

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  15. Nikki -
    You attitude is amazing and inspiring and you are truly a ray of sunshine!!
    Sending you lots of positive thoughts, prayers, vibes & sunny days your way!
    Kelly K

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  16. After an instance of bad luck comes a whole heap of good luck! Yeah, things won't be what they were, but paradoxically they couldn't be any better. I'm hoping more good luck continues your way, and more good people cross your path.

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  17. You have the attitude that I pray I would have in your situation. I'll be praying for a quick and full recovery from your surgery and PRAISE GOD that you found out through another issue. I had a friend at church that found out he had a brain tumor after having an MRI for a totally different reason. God works in amazing ways to get us the help we need sometimes.

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  18. I just want to say THANK YOU so much to everyone who posted such encouraging words to me! I am overwhelmed! Thank you so much! I am so lucky to have the support of the DOC. There really is nothing else like it!

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  19. OMG: I wrote the exact post in January! I'm a type 1 diabetic who was waking up in the middle of the night with both hands/arms numb. Discovered badly herniated disc at C6-7 and bulging ones above and below it. Routine, I figured. Until they diagnosed my "birth defect" and rushed me into a 9 1/2 hour surgery. (I wore my insulin pump through the surgery). They started my surgery through a 7" long incision in the back of my neck, starting at my hairline (oh, and they shaved off a bunch of my hair, too!), and rebuilt my cervical spine by sawing through four levels of vertebra and inserting cadaver bone and titanium plates and screws.

    Then they flipped me over and did the same operation you had, through the front, with yet more bone grafts and another plate. Did you know they staple a metal halo brace to your head for surgery? I woke up with a few staples remaining in my head, which had to be removed with pliers.

    I wore my collar 24/7 for exactly six weeks and then got permission to dump it. I was on pain pills for about a month. Monday, August 20 will be four months and I feel really, really good. Still a little sore, of course, but that's mostly in my shoulder/sides of neck area because those muscles really take the brunt of surgery. My incisions are healing and beginning to fade. Make sure to keep zinc oxide--the white stuff--on your incision until he heals to the white scar stage; that way it'll fade nicely. I was told no Mederma or anything like that because it softens the skin and allows the scar to stretch.

    I'm told my neck is in better shape than it's been my entire life! I'm lucky; I was in a head-on collision in 1986 and walked away with fairly minor injuries, considering what I now know. Hope you're feeling great soon!

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  20. Everyone has said it already, but angels were sitting on your shoulder, and perhaps, if we all have that kind of attitude, the 'you can do this' attitude, these same angels will be on our shoulders too as we face life head on.

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  21. My goodness! I am glad you are still with us! That is so scary!

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