Week 2 & 3 | Spero Clinic

Let's get to the exciting stuff...

Again, I am NO DOCTOR, but it has been a mystery as to why it's taken so long for my body to fully recover.  It was also a mystery as to why I've had so much pain, but since being diagnosed with CRPS, the mystery no longer remains.  I often wonder if readers laugh when I write about me fully recovering...because I truly know I will recover.  In fact, if I could only be extraordinary at one thing in my life, it would be this...This journey.  If I can get through this, how great will my story be?  How great will our children's story be?  Journeys of this magnitude aren't easy, they're long and they have many ups and downs.  It's a matter of navigating the healing course and truly finding out what it needs in order to succeed.

I should tell you that the therapists here are treating my CRPS, not my paralysis.  So with each session of every therapy, the main goal is to put my pain into remission.  However we're seeing so many mobility and strength improvements from these CRPS protocols that a part of me, a GIANT part of me believes its been the CRPS that has kept me this immobile.  Does that make sense?  I KNOW IM ALL OVER THE PLACE, but bare with me, this stuff is CRAZY INTERESTING.

CRPS is a condition that can be triggered by damage to nerve fibers in tissue that has been injured. Experts believe that in CRPS, nerves become overly sensitive. Painful signals become more painful. And common stimuli, such as light touch and temperature changes, also are experienced as pain.  I told you guys that sheets on my bare legs feels absolutely terrible. The condition usually starts after an injury or other event. Examples include trauma, fracture, infection, surgery, stroke or wearing a plaster cast.  THERE ARE SO MANY PEOPLE AT THE CLINIC WHO'S CRPS ONSET AFTER A DAMN PLASTER CAST OR BOOT. Often, the injury that triggers CRPS is mild compared with the pain that follows it. However, the condition also can follow more severe injury or paralysis. The pain often is not limited to the area that was injured.  In my case, my leg nerves were not damaged but nerves associated to each lumbar and thoracic vertebrae were (which are responsible for the mobility of everything from the waist down).

                       

Some people experience other movement problems, including weakness, spasm and tremor. IT ME IT ME IT ME.  An affected limb can become permanently flexed or bent (contractures). In some people, the skin can become tight, dry and shriveled. The bones can become brittle because they aren't being used. The skin, muscles and joints stiffen so that the affected area cannot be moved. Some patients have less pain at this point. Once the disease reaches this point, it is extremely difficult to treat.

                      

You see, it's been so easy for my physical therapists to write me off as a sad yet inspirational story.  "Taylor puts so much effort into recovering", "Taylor, with your personality and persistence, you'll get through this and walk again."  But no one put into consideration my CRPS. No therapist I've had has really delved into the mess of Complex Regional Pain Syndrome.  Because I had a massive neurovascular surgery, which included a five vertebrae laminectomy, cutting through my myelin sheath and then removing a giant arterovenous malformation, I really feel like I just got written off as a sad "spinal cord injury", but I'm not.  I'm a giant mess, but I truly feel that The Spero Clinic is going to figure me out and help me HEAL my pain & paralysis.

                                         

Okay back to NMR...

One of the first things Spero wants to do is to find where your neurological "kink(s)" or lack of connection is within your neural pathways.  This is done with the "Search & Destroy" technique and it's actually conceptually simple.  A setting within the NMR allows the therapist to glide a lead (with a current running through it) over your body.  Pain will spike where the neural connection is lost.  It was no shocker that I had pain spike at my T3 (which is was the highest vertebrae that was sawed in half to access the AVM) aka Ground Zero.  I can only imagine the scar tissue that developed in my back post surgery.  The search continued on....another pain spike on my abductor.  

A lot of the time, road blocks in neural pathways are the result of scar tissue growing in its way....soo how do we break that scar tissue up?  By using shock wave therapy, Spero therapists are able to break down the tissue, so that the connection can be made again.  Its the craziest thing to feel and ask my mother, its the craziest thing to witness.  The therapy, depending on how much scar tissue you have can be extremely painful.  But the "hurt so good" kind.  And it doesn't last forever.  Once the scar tissue has been broken down, the pain diminishes and if you're lucky, you can feel the current of the NMR run deeper down your body.  And guess what, I've been lucky.

(NMR on a hot spot)

(standing tall with my toes uncurled for the first time in a LONG time!)

(I was terrified to be gone from SCI-FIT for three months.  I was scared that I'd regress. But NMR stimulation trains your brain and nervous system to correct movement patterns and muscle integration at an incredible rate.)

The fact that I've been able to feel NMR's current in my calves and feet is beyond awesome.  I would say that its, "strange", but it's not. I truly don't think its been a spinal cord injury thats been paralyzing me.  If we can continue to search and destroy more scar tissue, if we can keep opening up neural pathways and strengthen the connection, whos to say Spero can't help me walk again?  

                                            

Yesterday was my three week re-evaluation.  I was dreading it, but I left the appointment smiling and even gave myself a little pat on the back.  I'm progressing.  I'm getting better.  Little by little.  I've gained sensation back in my legs.  How cool is that?  To be honest, I'd written my sensation a goodbye letter long ago.  I told her I'd miss her and would always love her, but I needed to focus on bigger things like giving pain an eviction notice.  But she coming back y'all!  And I happily welcome her.  Thank you Spero for showing me I don't have to write anything off.  

                                 

...............and so how am i feeling?  Hows the pain?

Wednesday was my best day so far.  I typically have anywhere between 10-20 pain spikes a day that hit a 10 (on a scale from 0-10, 10 being the highest).  My resting pain (constant) is typically a 3 (the lovely burning in feet, calves and quads/hamstrings).  I kid you not, on Wednesday I only had 2 pain spikes that didn't exceed an 8 and my resting pain was a 1. WTF?! My sleep was good all week as well, only waking up a couple times a night due to pain, but I was able to fall asleep relatively quick.  But then darn it, Thursday was a bit rough.  I hit a handful of 8's, but Im learning that this is completely normal...and I ain't mad about it.  You guessed it, I'm TRUSTING THE PROCESS.  

 Again-Don't give up.  Stay the course, but if the course seems wrong...don't hesitate to pull out your compass (or wall size AAA map if you're my mother) and head in another direction. xo- Taylor

Also if you're facing any sort of adversity right now, don't focus on what you can't do, focus on whats on the other side of that adversity.  Your brain is a POWERFUL tool and will help get you through it. Chin up! Tits out!