How I Got Here - My Journey To Disability

Today someone asked me what the heck started all of this!? This is my answer to her, and thought it might help clear it up for others as well :0)

I suffered a concussion in fall of 2011 when the corner of the electric tailgate hatch on my car came down into my skull as I stood up. The curvature in my cervical spine inverted.

It has been over two years of surgeries, testing, MRI's, CT Scans, X-Rays, surgeries, procedures and blinding pain. Along with the mechanical injuries to my spine, after about a year symptoms began to develop that leaned toward a Motor Neuron Disease such as ALS or MS but with unrelenting pain unlike anything I had ever experienced in my life. After extensive neurological testing, and a multitude of doctors, I was diagnosed with Complex Regional Pain Syndrome in my spine after one of my procedures. CRPS is a disease of the central nervous system. Although it is considered incurable, it can go into remission. My case is extremely rare and has 'presented' in a way only noted a handful of times by CRPS experts throughout the world. It resulted in a ten month paralysis of my legs and 70% right arm. Pain levels of CRPS are clinically greater than childbirth or phantom limb. A year ago I did not think I could live much longer.

I am now at the verge of what we feel may be my last surgery. I am 80% wheelchair bound but am SO incredibly blessed with the most supportive husband, four children, and loving parents and brother and friends who saved my life through fundraising efforts that allowed us to cover the costs of a six week specialized CRPS program at UCLA.

In regard to surgeries, I have so far had a fusion of C5-6, an artificial disc replacement (ADR) of C 4-5, laminotomies L4-5, bone spur removal (domino effect of head trauma to lower lumbar), microdiscectomy L4-5 then finally an ADR of that level. Last summer they implanted a spinal cord stimulator in my lumbar spine.

In between have been numerous nerve blocks, epidurals, rhizotomies, etc.

What saved my life (literally) was a six week program at UCLA that combined ketamine infusions and a Multi-disciplinary approach to treatment of CRPS under the care of Dr. Joshua Prager.

My final surgery is a rather large one with a revision of my lumbar spinal cord stimulator as the leads have slipped. They will replace the lumbar leads with new paddle leads which will be secured by drilling them into the bone (fun!;) they will then add two more longer leads that will run up into my cervical spine and secure as well via laminotomies.

So there you go! Sorry for such a long answer, I don't know how to make it shorter loll

I don't know what the future holds in regard to regaining more mobility. Much damage has been done. Walking for longer than 3-5 minutes results in complete debilitation. We hope that once I heal from this next surgery I can continue physical therapy. However, I can proudly say that I have, through the support of loved ones and my doctors, developed a quality of life I thought impossible.

Bottom line is, I'm always good for a chat on how wonderful life can be once you learn to accept a new-normal as a gift to be opened instead of a sentence to be served. 💝

CBS segment on my CRPS condition and treatment with Dr. Prager. http://losangeles.cbslocal.com/video?autoStart=true&topVideoCatNo=default&clipId=9805202