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Randi_K
02-04-2009, 07:45 PM
I've been lurking around here for a little while, and finally decided to join and start sharing. I know people have lots of experience with surgery and short-term, and I'm hoping to be able to help with more long term issues.

I guess I'll share my story... Sorry about the length.

I am 24, and its been almost 9 years since I had my fusion, and about 6 1/2 years since I had my hardware removed. I never wore a brace.

My scoliosis (idiopathic) was caught when I was 11 in a yearly check up, and was referred to a surgeon for monitoring immediately. By the time I was14, it had progressed to a 58* C curve. Bracing was discussed at the time, but my surgeon and parents decided against it. With in 6 months, my curve had progressed to 64* and I was scheduled for surgery. I decided on cadaver bone (my parents and doc thought it should be my decision), and I was able to give 2 units of blood before the surgery.

March 31, 2000, I went in for surgery. I think It was about 7 hours and I was fused from T2 to L3. I had no complications in recovery and was home in 6 days. I think it was about 10 days after surgery the first time I went out of the house. My dad had to go to Borders to pick something up, and I begged to go with him because I was getting stir-crazy in the house. I think I just stayed by the door reading magazines becuase it was too umcomfortable to walk around much, but it was exciting to be out of the house.

I was back to school in 3 weeks full time, but was allowed to leave class at anytime to go lie down in the nurses office. All my teachers and classmates knew about my surgery so I didn't even need to say anything half the time. My friends all knew where to find me, and would bring my books and bag to me if I left them in class. I have read that a lot of people start back to school part time, but I liked having the freedom to participate when I felt up to it, and after a week back to school, I rarely needed to leave class.

in June of 2000, I performed in a dance recital. My mom was my instructor, and we worked together to coreograph parts for me in a lyrical number.
I spent the summer of 2000 working at a horse camp, teaching kids to groom and tack up horses, as well as teaching begining lessons.
By October, 6 months post-op, I began training for the up comming Cross-country ski season. I was able to keep my spot on the varsity team, and raced at the state championships less than a year post-op.

In May 2001, a little over a year post-op, I was FINALLY given the ok to start riding horses again.

Since 2001, I have continued riding horses and dance. I got a job as a trainer in '04, teaching young and in experienced horses to be used for Hunter Jumper school horses, and Competed in the summers over 3' jumper courses. I have taken my share of crashes, and been slammed into countless walls and fences, but none of it has had a negative impact on my back or fusion, and all my x-rays have been fine in yearly check ups.

I currently am living in Chicago, where I work as a bike messenger, and am generally on a rode bike carrying a heavy bag 30 hours a week. Ive been hit by cars and flown over my handlebars, and still no problems with my fusion. I've also been rock climbling, snow boarding, cliff diving, and down hill mountain biking.

I do get occasional back pain, specifically minor muscle spasms around my right shoulder blade and along my rib-hump, but daily stretching and the occasional aleve takes care of it.

So yeah... Surgery really hasn't affected me, and my fusion doesn't stop me from anything anymore. I'm happy I went through with it, and most people don't notice my back. It's always funny when I tell people and they seemed shocked to hear that my spine is fused. After 9 years, minimized mobility feels totally normal, and I think it would feel really odd to have an unfused spine now.

LynnMarie74
02-04-2009, 08:08 PM
Randi....Im glad you posted....it gave me hope there is life after this. Im going thru some stuff right now and Im 3 weeks post op....and believe you me, I know what you mean about wanting to leave the house. Granted Ive got a few yrs on ya.....and also you were at a younger age when you had yours done..but again, thanks for your post...it put a smile on my face that I have not had in awhile. :)

Pooka1
02-04-2009, 08:11 PM
I thought it was very informative.

It's interesting that you say you are fine after some crashes and falls in riding.

That fits with my theory that years of poor riding technique, especially at sit trot, probably is more damaging than falling off or even being thrown. Or even the wear and tear of years of the rider just not being "through" as we expect the horse to be "through" (permeable to the aids) may damage spines.

Just my impression.

Glad you had such a great surgical outcome.

laurieg6
02-04-2009, 08:16 PM
Thanks for that story. It reinforced my attempts to be really hopeful that my son will have a very normal, active life like he seems to be doing already. You sound very positive and I'm so glad to hear about all you're doing and how you've been able to do so many so-called risky things and still feel totally fine. I really appreciate your sharing of that.

Randi_K
02-04-2009, 09:04 PM
Im glad my story was helpful to all of you. I really hate the mis-conception that surgery is a life changing event.

Pooka-- I was riding horses and involved in 4-H before I was diagnosed. The barn I rode at, (and eventually became a teacher and trainer at) always put a lot of stress on developing a strong core and balance before anything more challenging or potentially dangerous. Even though I was cantering courses over 2ft before my surgery, I basically started over after I was allowed to ride again. My first month or so back in the saddle was limited to 15 minutes of walk and posting trot on the oldest, calmest lesson horse. I focused a lot on dressage and regaining my leg strength and balance for the first year, and didn't jump again till almost 3 years post-op. I always kept a strong focus on technique and strength excercises (like 3 minute intervals in a 2-point position on my flat days). By the time i was riding the "dangerous" horses, I was able to ride out bucks, and rearing and spins from horses who were testing the limits that would have had other trainers on the ground.

Pooka1
02-04-2009, 09:17 PM
(snip)By the time i was riding the "dangerous" horses, I was able to ride out bucks, and rearing and spins from horses who were testing the limits that would have had other trainers on the ground.

Ah, the proverbial "velcro seat." ;)

That's really great how you started from scratch and built up your core again to the point you are training even the hard cases. Core/posture and timing... the alpha and omega of riding to me.

WNCmom
02-04-2009, 09:23 PM
Just want to chime in with thanks for that story. As the parent of a newly-fused 13 yo, it is encouraging. But I'm also glad to hear the second part about strengthening core muscles. That made a big difference with you getting back into riding, but I bet it also made a difference for your general health and body strength--a reminder to all who have had fusion.

Christl
02-05-2009, 12:35 PM
I would like to ask, how did you come to have your hardware removed? Personal choice or a necessary circumstance?

momw/scoli
02-05-2009, 07:41 PM
Randi K,

Thank you for your wonderful post. My daughter will most likely be having surgery this summer and she is a very active girl. Since the day she started crawling she has been moving and shaking. I can't imagine her being still. I have been so worried about sports, and all the other things she seems to enjoy. Hopefully she will end up like you and scoli won't keep her down. I also read the post you wrote about sleep overs one month post-op. It brought tears to my eyes because my daughter's only wish for the summer is to go to church camp 8 weeks post-op. It is her friends that she cares about right now and I can only pray that they will be as good to her as yours have been to you.
Becky

Randi_K
02-06-2009, 04:47 AM
Christl- Having my hardware removed was due to circumstance. A little over 2 years after my fusion, I developed an inflamed area at the top of my incision. It would alternate between a swelling with bright red skin, and then eventually get scaly and start oozing puss. Disgusting would be the best way to describe it. I first saw my surgeon about it when it was just swollen, and he thought it might be a skin reaction to the hardware. I've always been a skinny-minny, and could feel the top of the rods and top hook through my skin. His first idea was that my skin was creating some extra padding as protection, and wasn't too concerned.

About a month later, the oozing started, and I was refered to another doctor who decided to do a culture on the swelling, and determined it was an infection. I was put on antibiotics, and had monthly checkups to see if it was helping. 6 months and about 5 drugs later, nothing had made a difference, and I was scheduled to have my hardware removed. From what I remember/ understand, they believed the infection had found a home on the metal, and when that happens, antibiotics are useless. The only way to remove the infection is to remove the metal it's attached to.

The surgery turned out to be the easy part. It was done as an outpatient procedure, and I was home the night of my surgery. After about 4 days, I developed serious headaches, to the point where sitting up made me nauseous immediately, and my lower back was more swollen than the rest of the incision. at first they thought I was having a bad reaction to the pain killers, and had me stop taking any medication. When stopping meds didn't made a difference, were worried about meningitis, and ordered an MRI. The MRI showed a small tear around my spinal cord, and the swelling was from a Cerebral Spinal Fluid leak. (think of it like a sausage of sorts, where the spinal cord is in the center, surrounded by CSF, and the hole was in the casing). I was getting such severe headaches and nausea because I had no CSF around my brain.

I was put on bed rest and pain killers for a week, in hopes that the leak would heal itself while I was flat on my back. Luckily it worked, or I would have had surgery again to close up the hole. The worst part was that I was feeling great while required to stay flat on my back. I would have made my 5 year old self proud with some of the tantrums I threw out of boredom and frustration, while so high I didn't even know what I was yelling about.

I was a freshman in college when all this happened, and my surgery was scheduled during spring break so I would miss as little school as possible. Even with all the complications, I only missed a week and a half of class.

smileyskl
02-06-2009, 09:19 AM
Thanks so much for deciding to share your story. My 11 year old daughter will be having a fusion this Monday. I think I will let her read your story after the surgery if she starts feeling defeated by everything. She is very active and one of her biggest concerns is how long she will not be able to do the things that she is accustomed to doing. I have told her that we will focus on what she CAN do and not what she can't do. Also, reading your success and any success story helps me alot with my stress level this close to surgery. Thanks again:):) Please share any insights, tips, things that helped you if you think of anything else. When so many people don't understand this condition or surgery, this forum can be a lifeline to sanity. Thanks.

alwayzsomethin'
02-06-2009, 01:17 PM
Hi Randi! I thank you too for sharing your story! It's comforting to hear your experiences. It really helps us to prepare mentally and physically. You are a real trooper, going through all you did, and having a really positive outlook on it all! And hey, we might just see you buzzing around the streets of Chicago next week! ( I could never do that job:eek:) You must have nerves of steel, too! My daughter is scheduled for fusion at childrens memorial on Wed. 2/11/09. Thanks again for the insight and glad to hear all is well with you! Tracy

debbei
02-09-2009, 08:44 PM
Wow Randi, you are amazing and an inspiration to me, being almost 4 months post op. How odd that you would get the infection after 2 years. I'm glad it all worked out for you though. I can't believe that was an outpatient procedure! And thank goodness that your spinal cord fixed itself!