The long journey to diagnosis

>>Started this blog on blog.com on May 3rd, but realized quickly that site is down quite often for hours daily, and sometimes 1-2 full days.  Below is my first post from Mary 3rd.>>

I had been thinking of starting a blog awhile ago, but kept thinking I was nearing the end of my chronic pain journey so thought it wasn’t worth it.  However when I woke up from my left hip arthroscopic surgery on April 9th, 2013 I realized my “10K hip journey” had just turned into a marathon.  I’m getting ahead of myself so let me start from the beginning.

I was always an active person, working out 3-4 days a week, never stopped to sit down and rest when at home, always  moving, moving, moving.  I took up running after having my daughter 6 years ago out of the convenience of getting a great cardio workout anywhere for free!  I ran 3-5 miles consistently at least 3 times a week for a few years (minus my second pregnancy with my son, to which I returned 8 weeks post baby).  I decided December 2010 I was going to train for and run a 1/2 marathon for 2011.  I started out great, but developed plantar fasciitis once a couple of months into training. Was told I could “run through it” by a well known podiatrist in my area with proper orthotics and a stretching regimen.  He told me exactly what I wanted to hear, although now I wish he hadn’t:(  I took his advice, completed my training, and ran the Cleveland 1/2 marathon May 2011 in 1:51:57, faster than planned!  Decided long distance running was for me; however my body had other plans. Lesson #1: never run through pain, there’s always a consequence long-term (if only I had know this back then).

Fast forward to August 2011, when I could barely walk anymore and was forced to stop running, received PT treatment and custom orthotics, but never got better.  Fast forward again to January 2012, took my kids sled riding (at this point was only swimming and lifting weights for exercise as even biking and elliptical set off my symptoms in my feet, and a weird new burning pain in my ankles and calves).  I walked up and down the hill and up and down the hill again and…………(well you get it) that day despite something in my brain telling me I was going to regret it.  Woke up the next morning in pain I can’t even describe.  Horrible, burning, electric like pain all through my left leg and part of my right leg.  Was so bad I was on crutches a few days.  I won’t bore you with the details of the next 11 months, but saw 1/2 dozen doctors who gave me a 1/2 dozen diagnosis, had a 1/2 dozen tests (MRI’s, x-rays, EMG’s, etc…) and still no great diagnosis.  I found out I had a hip labral tear, but my sports med dr. said those were typically “not significant” (I plan to email him at the end of this journey to fill him in on just how significant that was!!).  Found some wonderful myofascial PT’s who said my pelvic floor (hip rotators especially, but also my flexors) and everything attached to the pelvis was a wreck.  This was why the plantar fasciitis (PF) never went away, the muscles and fascia from my pelvis were so screwed up they altered my gait patterns causing all my symptoms from PF, to nerve pain in the legs, to awful low back pain.  Something had to be wrong with my hips and we were suspecting that labral tear had something to do with it.

Went back November 2012 to see my sports med dr. with this information and was referred to one of his co-workers, a hip specialist at Cleveland Clinic (where I was being treated).  After more imaging was told I had FAI (femoral acetabular impingement) and labral tears in both hips and needed arthoscopic surgery to shave the excess bone that was impinging and sew up the torn labrums.  Typically people with this have pain in the front of their hips where I had pain in the butt (literally) and spasmy muscles everywhere so I was a little skeptical, especially considering my sister has a history of hip dysplasia needing a PAO (major hip reconstructive surgery).  So I decided to get a second opinion by Dr. Thomas Ellis at OSU at the recommendation of several people who he operated on and who were very happy with him.

I’ll try to shorten this as much as possible. In January Dr. Ellis gave me same diagnosis, but saw a little acetabular retroversion (sockets faced back instead of down or slightly forward) but didn’t think it was enough to warrant major surgery; however he said he wanted to investigate with a 3D CAT scan just to be sure.  We agreed to do it the night before my April 9th scope so I didn’t have to make the 2 hour journey an extra time to Columbus.  Surgery morning I arrived at the hospital at 8:30 as requested, was taken back to pre-op where they prepped me for surgery.  Dr. Ellis came shortly after and informed me that after seeing the CAT scan I do in fact have mild hip dysplasia ( somewhat shallow sockets and some acetabular retroversion as he suspected I might).  This did make sense to me, as I’ve been feeling like my hips were literally falling out of the back of the sockets causing horrible pain and the muscle spasms that kept getting worse (at this point it was the low and mid back, all the butt muscles, hip flexors, hamstrings, calves, almost everything!).  He gave me the option of continuing with the surgery we planned (remove extra bone from the femoral head and fix/anchor the labrum and tighten the hip capsule) no matter what to give me some short-term relief that would last only a few months to a few years, or once he got in there if cartilage was good and there was no arthritis his recommendation would be that he just fix/anchor the torn labrum and close me up and do a PAO (larger hip reconstruction surgery my sister  had 4 years ago) to address the hip dysplasia and excessive bump on the femoral head together which would allow me to preserve and keep my own hips ALOT longer than this scope would do.  However he did say that if the cartilage was beat up or there was arthritis he was just going to do the original surgery, as I would not be a candidate for the PAO  and I would have to make due until I was bad enough to have a total hip replacement (which is not recommended unless absolutely necessary until around at least age 50, as to minimize the number of times you have to have them revised).  I said “do whatever will allow me to preserve my own hips as long as possible.”  I prayed for a while after he left, not that the outcome would be what I was hoping, but whatever God knew what would be best for me in the long-term. Not an easy prayer to pray.

The last thing I remember that morning is talking to the anestheiology tech named Bruce as I zonked out mid sentence being wheeled out of pre-op.  Upon waking after surgery in a good amount of pain (which the nurses controlled quite quickly thankfully) Dr. Ellis’ fellow who is training under  him came first to visit and of course I immediately asked if they did the full surgery or not.  He said my cartilage was only worn some and that Dr. Ellis just repaired the labrum and would be doing the PAO on me, but he would be by shortly to talk about it.  I held back tears as much as I could, scared, frustrated that this journey had become more intense and longer than planned, but also gave thanks to God that Dr. Ellis caught my dysplasia (the Cleveland dr did not) and hopefully this would fix me for a long time, hopefully ending my chronic pain.  As much as I didn’t want to have to have a PAO I know deep inside it was God working through the right people to lead me to this surgeon who caught this.  I’ve read too many stories of people with failed scopes, whose surgeons scoped them despite knowing about them having hip dysplasia, and they are on surgery number 2, 3, or even 4 and living in miserable pain.  I don’t want to be a statistic in that category, so although this is not something I am looking forward to, I feel deep inside it is what is right.

Oh what a long story!!!!  I promise my future posts will not be so lengthy!  So I am now awaiting my left PAO surgery May 17th with a variety of emotions, but am trying to put my fears and discouragement of this journey in God’s hands, giving up control because I realize now that I never had the control in the first place.  I will write again soon:)

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