Hope for Stability

On Thursday, April 7th, I hope to say goodbye to the crippling effects that sacroiliac joint dysfunction has had on my life.  It began with a traumatic childbirth, followed by several clumsy years of searching for answers with multiple doctors, mobility problems, confusing symptoms, and ended with severe pain and limitation of mobility. I can not go on a walk, go the store, go to my children's events, etc.  Just simple standing is not effortless for me; it has been work to stand ever since the delivery but now at times impossible.  I could no longer force a smile on my face and push through the pain (which tragically causes more damage) when my body was in grimacing pain, so I put my determination to use and began my own research, finding a group that specializes in this problem.  It is a team that consists of an orthopedic surgeon, physical therapist, and a physiatrist in Gainesville, GA outside of Atlanta. They immediately got it.. immediately.  They gave me numbers of people to talk to that have had minimally invasive surgery to fixate their joints, and now are able to walk pain free.  Sign me up...

I am starting this blog so that family and friends can follow my progress.  Many have been so concerned and I am so grateful for my family that has stood by me even during the most confusing times and understood that I have a real problem.  I believe that God just took his time in providing answers for many reasons, one being that I would be treated by the right medical team. This is a complex problem to have and my orthopedic makeup is also complex to add another layer, so I need the best.  There are many SI patients that have documented their progress, and I want to do the same in order to help other patients that are still searching.

My diagnosis in order by Dr. Weiss:
Severe and chronic sacroiliac joint dysfunction complicated by
32 degree lumbar scoliosis
L5/S1 disc annular tear and bulge, likely caused by the same injury
S1 lumbarization (means the left side of my S1 vertebrae did not fuse as it should have)
Femoral nerve reiinervation (also caused by the delivery)

The scoliosis and lumbarization of S1 are defects in my spine that set me up to have greater trouble with this type of injury and to be more lax in the sacral area.

Vicki Sims, PT, has devoted her career to helping patients who are suffering the disabling and devastating effects of  SI joint dysfunction. The first day I met her I explained my symptoms and how I have altered my lifestyle.. can not pick up a gallon of milk so we buy two halves, never ever bend over, no stairs, no inclines, shower chair, can not stand in one place, and most recently can not go shopping, run errands or really go anywhere because I simply cannot stand up that long.  I am at the point where I would need a wheelchair to do any extended "walking" and am using one when we go to the airport.  That part is one of the hardest...to let others see me in a wheelchair...I wore my sunglasses in the airport the first time.

After she examined me, in her soft but most confident Georgian voice she said, "Go home and know that you will no longer have to alter your lifestyle in this way, we can fix your problem whether it be via conservative measures or by surgery." I met with her over three days, followed by a meeting with the surgeon.  They explained to me in layman's terms that my pelvis is dislocating when I stand or walk or do anything.  There has been damage to the supporting ligaments causing my SI joints to dislocate, meaning that my core is not aligned properly over my body.  I did not stabilize during therapy over six weeks, so we are moving on to surgery next week!  It is not a quick fix, but it will give me a stable base that I can begin building again, the muscles around it and my life.

It has really been unbelievable the support that we have gotten from friends and family that are rallied around us as we prepare to leave.  I had lost touch with many people since I have been confined to the house, so I did not expect it. I also had just stopped talking about it, because there really is no way to explain the way it would feel if you do no have complete nerve innervation in your leg, or how it would feel if your core was not stable.  It is just something you can't imagine.  Thank you all so much - it is you and my Lord that got us this far...

More to come later on:  Post Operative notes, How did I get This, Why Did it Take so Long, What is the SI Joint and What are Symptoms, Lessons Learned