selective dorsal rhizotomy

I'm putting this disclaimer at the beginning my other surgery that I talked about in this post also is part of the reason for my loss of functional ability! This blog has my story and opinion if you don't like it then don't read it! My parents did what they thought was for me and they never left a store unturned! Being in a wheelchair is the card I was dealt and I'm perfectly happy with it! I will NOT TAKE MEAN COMMENTS OR JUDGMENT my family and I do the best we can 

1. Selective dorsal rhizotomy surgery isn't all it cracked up to be! I had a selective dorsal rhizotomy at age 5 or 6 when I had to have the surgery done before age 7 because it was thought back then at 7 certain brain patterns set in so the surgery wouldn't be as effective after age 7. While initial a great success it has now caused me more problems! I had the surgery in I believe June of 2002 I spent a month or more in the hospital doing intensive physical therapy to get myself back to where I was before surgery because they cut my sensory spinal nerves I lost all my  spasticity which is the point of the surgery because if you don't have the spasticity it's easier to control your movements and have more control over your body (your not fighting your own body as much essential) but it also means I lost all my strength because I was using spasticity instead of my actual muscles! After the months of PT and hard work! I was still walking with a crouch. gait so my orthopedic doctor remembered that I should have my hamstrings and heal cords released so I could stand up straighter which was supposed to make walking easier it did at first! Then around 4th grade is when things started to go down hill around the middle of the school year I started having terrible knee pain! At the beginning of 4th grade I was using what I believe is a reverse walk because of the knee pain I was no longer able to support myself while walking so I started to use a rifton pacer gait trainer with arm chest and thigh supports that gave me more support which in turn gave me less knee pain! Then in the beginning  5th grade I began having more pain so I was becoming weaker so I ended up having to use the Rifton gait trainer with every support it came with! Using the gait trainer lasted from 5th grade though 10th grade! At the age of 15 I started out patient PT on top of school based PT (there is difference between those two PT I'm  not exactly sure what so if you want to know more about it you'll have to do your own research) My outside PT was able to get me walk with just a regular walker again but honestly that a whole other post because it's been an roller coaster of ups and downs that I'm still dealing with today! I gave everyone a ton of back story but it's to explain this next part! The reason why I said SDR surgery isn't all it's cracked up to be is because it a me to have a pretty big spinal deformations which can not be surgical fixed because it would involve moving my spinal cord I have the opposite of scoliosis which is called  lordosis basically my curves inward instead of sideways! Having lordosis has made it extremely hard to just sit in a regular wheelchair or anything other then my power wheelchair or a recliner! The other reason is it is supposed to be a permanent solution for spasticity but in my case that isn't the case and I'm currently in the process of getting a baclofen pump which my family wanted to try to avoid that's why I had to SDR surgery 17 years later and I have to get a baclofen pump anyway! Ps. Thought this entire journey I've the most amazing support for family, friends and of coarse my fantastic PT's and OT's! Thanks to everyone who takes the time to read this post! I will do some follow up post as my journey continues!
   

My Artwork examples all done by me!!!!