Talking about my surgery / last year.

I don’t know if you want to read this, but here it is. It’s a post about last year. A scattered catalog of my surgery and the time before and after it. …I wish there was a better way to tell the story, but I’m just trying to cram it all in this post, so we’ll see what happens.

1. I have a bone disease that makes my bones weaker by making them denser (Osteopetrosis), I found out about it in the third grade, and it has been an annoying presence in my life, but mostly just an excuse for me to avoid too much calcium.

2. Because of said bone disease the doctors are especially careful of my hearing and vision, because there are itty bitty bones in near the eyes and in the ears that could potentially get too dense and hurt my sight or hearing.

                       March of my junior year of college I got a cold and my left ear starting ringing, and it wouldn’t stop, and then I met with the doctors in May, after returning home from college, and the ear doctor was all “Oh, nothing is wrong with you” and I was all “Thanks doc. My ear just rings for no reason. I hate you.” Except I don’t hate people, I just get very angry with them. And so then two days later the doc was all “Oh hey Catherine, I’m calling you on the phone to tell you that we are going to do an MRI just in case, because you have that bone disease thing” and I was all “That’s right. You better look into my weird symptoms that have lasted two months and probably aren’t just because I stood next to a stereo during a concert…” Except again, I didn’t actually say that. Then two days later/whenever the doc was all “Oh yea Cat, your ears really are fine, but I’m gonna send you to a neurologist because something looks strange like you have a Chiari Malformation and so the other doctor should see you.” And I was all “Yeah…Okay” and I hung up the phone and told my parents that I had an appointment with a neurologist.

I think I’m understanding a bit more now why my Mom was freaking out so much…

Then, we went to my neurosurgery appointment, and they were all “Hello Catherine! Do you have any headaches? Can you feel your toes? Do you ever get dizzy? Do you ever slur your words?” and I’m all “No….but my left ear is ringing.” and they were all “Uh huh…” and so they ran like a half a dozen of those little tests that doctors do, testing your arm strength, telling you to squeeze their fingers in your hand, looking at your feet, and then basically they were like “Ya, your MRI makes it look like you shouldn’t even be walking right now, but you are, so that’s weird…But we want to do this surgery, where we cut out a little bit of the back of your skull, and then go down and remove part of your C1 and maybe C2 vertebrae, and then sew you back together and let you recover, so that your spinal fluid will stop building up in a little pile in your back.” And then my mom starts crying, and my Dad looks all serious, and then I say “Okay”.

So after going to various appointments and talking to various neurosurgeons, July comes around, a whole 2 months after the first notice of my impending surgery, and my doctor says he won’t be able to operate until October, because of having operating room space. Of course I totally understood, because I was not on the brink of death, just on the brink of possible paralyzation, but I had my senior year starting in August….so we asked more questions. Then he said that he couldn’t wait until December for Christmas break. So we waited. Waited through July, and August, and started September, watching the facebook updates pile up as my friends started their Senior year… and then on a Friday in September the nurse calls and says the O.R. is open and tells me to come in on Monday for my surgery. Then I had surgery.

I was in the operating room for like, twelve to fourteen hours, but the surgery only took eight. I woke up in Intensive Care. I remember being thirsty, tired, and overall feeling miserable. I couldn’t move my neck…or I didn’t want to. They moved me out of Intensive care in the morning and I had a room mate for a while, and then several room mates, but I didn’t talk much, except to my nurses, and still hadn’t left my bed. At some point they gave me water again. They also gave me food, but I was too weak to eat and so a nurse spoon fed me. I did some physical therapy, got to the point where I could walk around, spent some nights in agonizing pain, my sister visited and stayed over nights a couple times, and ….well overall it was miserable. I learned that when doctors ask what your pain level is, it is on a 1 to 9 scale, not a 1 to 5…and morphine takes a while to kick in.

After 8 days and 9 nights I left the hospital with three hospital pillows and a bag of pain medications. I slept on a reclining chair and relished the fact that no doctors would be waking me up two afters after I had fallen asleep to take blood samples. I ate very little. I lost fifteen pounds. I had metal staples in the back of my neck that itched sometimes. I did not turn my head. A week later my staples were removed. It pinched and itched a little. Another week later I took my first shower/bath by sitting on a shower chair and pouring cups of warm water over my shoulders. I recovered slowly. It hurt. At week 6 I took my first trip out of the house, I went to Target with my cousin, I walked with a cane. Mainly I was just exhausted all the time, and ready to break into emotional crying fits.
After a month or two I probably should have been fine, or pretty much normal. But in December my neck really really hurt, and I still didn’t move it too much, and I went in for X-rays and found out the vertebrae they had operated on was broken. I spent Christmas in a neck brace, and found out I had to wear it for three more months.

Aside from the broken neck though, I had more or less recovered. I could walk greater distances at least. My legs were hurting, and apparently it was nerve pain/stress from the surgery and recovering, and sleeping in a reclining position for three months, so I had to start physical therapy. I learned some exercises to do, started taking more pain pills, and then went back to school in Ohio. I only took 3 classes and my thesis, but I had enough credits to graduate. I survived until spring break, came home, got the news that my neck was healing and I didn’t need the neck brace so much anymore, and then only wore the neck brace in cars. In May I graduated college, and by the end of that month I was out of the neck brace entirely.

I’m still doing physical therapy exercises, and have strained a muscle or two in my neck, but overall I am doing well. So that’s the story. More or less. If you have any questions go ahead. I kinda avoided certain topics, because I knew I would dwell on them, but feel free to bring them up.

I hope that…this was…at least a little interesting to read.

Thanks for reading this jumble of memories.

 

 

 

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2 Comments

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2 responses to “Talking about my surgery / last year.

  1. Thank you for telling me your story! Thank you for opening up and sharing things that must be hard to talk about. My date is set March 13th to see a specialist. She is the one that will decide if I am going to need surgery or not. My neurologist’s have been doing everything that they can possibly do for me the last few years but the pain just gets worst.. One told me last week that I am his hardest case he has right now. I looked at him a bit shocked but then he came back with that he just means that he is even more determined to fix me, to make me feel better. I’m happy they haven’t given up on me yet.. But I am a bit scared for surgery if that is my future?? Hearing your story makes me feel better. In know way was it a walk in the park but knowing you made it through and you live today to talk about it gives me a sense of calm. I am grateful to have you in my life, grateful that you are willing to share your past. Thank you again. Inga

  2. I think the good thing is that now it’s over…as far as I know. Waiting for surgery and then waiting for the pain to be over and everything to get back to normal, waiting to go back to my Senior year of college, was the worst part. I don’t envy you the waiting. It takes a lot of strength and a lot of patience to bear that weight, to sit in the uncertainty and the pain. I am sorry you have to go through it. From the moment I found out about my condition to my surgery it was 4 months or so, recovery from everything surgery related/including the broken neck kind of took 8 months, but I still have nerve pain.
    I am glad that I was able to tell my story and that it helped, whatever amount it did. A classmate told me once that I was an inspiration, and I didn’t really understand it and was embarassed, but with someone having the same condition of me, I understand how it helps to know I made it through, so, you’re welcome? But really just thanks…for giving something painful a positive reason to exist…for letting it give you hope. As it should. Because you don’t have a bone disease, I’m hoping, and so you won’t break your neck, and you won’t be waiting to see all your friends and continue your life in college, because you have all your family and a life with you wherever you are. Plus, if you do have surgery, you have the hope of the symptom of pain going away, whereas I had no symptoms to alleviate…sometimes I ponder how much better my life would be without modern medicine telling me that I have to have surgery or die…..but those are morbid thoughts. Anyhow, I’m glad I was of some help Inga. – Catherine

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