Rough Night

Last night was pretty rough. Out of nowhere I got what I will call a flash fever. I was shivering for a while and had a temperature of 102. I was covered in sweat. 3 hours later the fever had come down quite a bit and I was feeling much better. The nursing staff here is phenomenal and they were all over me while I was sick. I also developed a headache and had trouble sleeping.

Other than that I have been noticing daily changes in my strength level and seem to be able to do more with my legs each day. Tomorrow morning they will transition me off of the magic elixir (Bupivacaine) and on to oral pain meds so I can get out of bed. I am really looking forward to it.

Post Op Day 2

Dr. Park just came by to see me and reiterated that he thinks the surgery went really well. He is very optimistic that I will have no residual spasticity!

Yesterday I was a little worried because I could not lift my legs at all so I asked to see the surgical resident. He pretty much told me to ‘pump my breaks’ and reminded me that I was not even out of surgery for 10 hours at that point. Fast forward to this morning – I was able to lift my legs up a bit, hold them in the air, and bend them. I cannot wait until Monday when I will have the chance to stand-up and maybe give walking a go.

A few of you have asked if I noticed any increase in control and flexibility. I don’t know yet because the “magic elixir” is still doing its thing so my legs are pretty numb. I am the first adult they are using an epidural on post op and Dr. Park just told me that with the old meds that they used post-op I would be in excruciating pain right now.

So far so good. The only frustrating thing is being stuck in bed and laying flat. But it’s not that big of a deal in the grand scheme of things.

Done

Hi Everyone,

I am setup in a room now. The surgeon says everything went well. I am not sure what magic elixir they have in the pain meds but I am virtually no pain! Awesome.

I will keep this brief as I am posting from my phone. Which is now back where back where it belongs – right at my side!

Pre-op Day

I arrived in St. Louis last night and this morning I went to the hospital to do all the pre-op tests and fill out some paper work.

We reviewed my medical history and then I had some blood samples taken. After that it was a quick trip to another building for a Gross Motor Function Measurement exercise. The therapist had me run through a few things — walking, trying to run, crawling, knee walking, etc…We saved the results from this test so that we can compare how I do on the same exercise after a few months of rehab.

After that I met with a Physician’s Assistant to go over the surgery and what to expect. Bedrest for the first 3 days and then we start PT on the 4th day. Assuming all goes well I will be flying back home on 5th day.

That’s all for now. Go time is 6:30 tomorrow morning. I will update on how it goes once I am able to.

A New Beginning?

This blog will chronicle my experience undergoing Selective Dorsal Rhizotomy (SDR) – an operation I am undergoing in February 2012.   I have gone through 3 surgeries to improve my mobility, but this time, I hope to change my life.  I want to share my journey with other adults like me.  SDR is the only treatment (that I know of) for CP that provides a permanent reduction in the level of muscle stiffness (spasticity).

I learned about this option while doing some research on CP treatments in wee hours of the morning several months ago.  My ah-ha moment came when I stumbled upon the blog of another adult with Spastic Diplegia who underwent the operation successfully.  Having opened Pandora’s Box – I was hooked!

I researched the procedure obsessively (as my friends can tell you – thanks guys!) before deciding to move forward.  I found that this surgery has the potential to significantly change my life, give me the opportunity to be more physically active, and dramatically reduce the amount of pain and discomfort that I have accepted as the norm.

SDR is primarily performed on children who have CP but has been refined by Dr. T. S. Park; his refinements allow adults to successfully undergo the procedure.  He has performed this operation on about 56 adults so I feel like I am joining an exclusive club.  Of the 56 I have spoken to 12 people that have undergone the procedure and all of them have said they would do it again.

I will be in peak physical shape going into the surgery so I have spent the past couple of months training like a machine.  That means I have been doing pre-hab exercises prescribed by Dr. Park on a daily basis in addition to my normal workout routine.  I am a workout fanatic that regularly works 6-7 days a week.  Junkie that I am – I added the pre-hab exercises to my routine rather than make any changes.  This means that I am spending a considerable amount of time each day exercising.  The humbling thing about the pre-hab exercises is that they are all pretty simple exercises ranging from planks to bridges that should be as easy as a walk in the park.

Over the coming months I will use this blog to chronicle my experience with SDR from the activities leading up the surgery and post op rehab.

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