This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this post, Julie describes how it feels to finally find a good surgeon able to correct her multiple, painful, complex problems related to both  the sacral agenesis and the many surgeries she has had to undergo in order to correct the congenital abnormalities. It is a joy to read.  (If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series.)  Pat

by Julie Hemker

Julie Hemker, author of “Living with Sacral Agenesis” series on TDWI

Funny the things we find in our own back yard.  For two months now I’ve assumed, based upon the opinion of a surgeon, that my current medical crisis needed a Neurosurgeon to correct it.  I went on the – great hunt – for the best Neurosurgeon in the country.  Lesson learned.  Just because a facility is the best in the country does not mean they have the best surgeon for you!  Touché.  As that door was very blatantly slamming in my face I knew there was a reason.

I went on the hunt here for an orthopedic surgeon who could at least make sense of whose ball game this is, Ortho or Neuro.  It was quite simple and the doors opened at every turn.  It turns out, its all Orthopedic.   The surgeon I’ve found is perfect for me and my situation.  He came recommended from my pediatric surgeons and the last surgeon who performed a major surgery in that area.  As mentioned in my last post, I can’t waste energy on what I could have done differently.  I was proactive and found the solution in my own back yard, eventually.  Amazing what you see when you’re not looking!

Finally the news I’ve been waiting to hear and share!  Yes it’s true.  I found THE surgeon who is going to perform a pretty complex procedure.  It will get me structurally and neurologically where I don’t think I’ve been since I was about 19.  I’m turning 38 in September but correcting my pelvis and spine will take me back to 19.  Not a bad Birthday present.

Since February I’ve been on “bed rest,” first for a CSF leak and then what was diagnosed as stenosis, tethered cord, and heterotopic ossification.  It turns out I do have stenosis at the very base of my spine and the heterotopic ossification.  Because of my sacral agenesis it’s hard to say based on “normal” anatomy exactlywhere it is, but around it’s about where the sacrum would begin (if I had one).

The surgeon will perform a radical laminectomy to free my nerve roots which are very compressed giving me a lot of pain and urinary symptoms.  Then he will be removing all 8 screws and the 7” long plate in my pelvis and replacing the stainless steel with titanium (so that I can successfully be imaged in the future).  Then he is going to fuse the first two vertebrae I have at the base of the spine as they are so compressed they are mushing my disc to a pancake.  Also, he will remove the heterotopic ossification.

This is a major procedure.  It seems strange to celebrate such a surgery, but the implications are amazing.  Yes, there will be pain — I am in endless pain now.  There will be surgical wounds (significant yes), but they will heal.  On the other side of this operation is a life Mark and I have not really known since we got married.  To have a fully stabilized pelvis, opened spinal canal all the way down to the bottom and stabilized spine (due to the fusion), we will be able to do things we haven’t been able to do.  Our life has been built around limitations.  I will still have limitations and will have to be very cautious.  I will undergo extensive rehabilitation.  I cannot wait!  I’m so excited to wake up from surgery, see my family, get through recovery and move on with life.

No, my legs will never be my power source, but I will be able to walk more.  Yes, I will use the wheel chair when I need to.  I’m okay with ambulatory options.  I will never lead a pain free life and have never expected to which is why I have tools under my belt to control the pain.  I do self-hypnosis and biofeedback and other forms of pain control.   I know, since I’ve already had one pelvic stabilization surgery, how painful this surgery will be.  I keep my eye on the prize and getting out of bed!  I’ll be able to work again…oh how I’ve missed the feeling of contributing to the company and our household.  I have the best husband, parents and family and friends around me to get me through this hump.  We will all get through this.  It really does take a village.

Remember being a child and thinking you saw a firefly and then waiting to see it light up again?  Remember how excited you were when you saw it and ran out to find it?  That’s how I feel.  I have found magic in my back yard.  We don’t have to travel hours and hours from home.  We will be right here. I won’t be away from my whole support system.  I won’t be away from Stella, our yellow lab, for long.  All these things were on my mind considering the thought of going out of state.  Still, if that had been the answer, we would have done it and made it.  Somehow I always make it.

Thank you, dear readers, for sticking with me on this journey.  We are not there yet but we are getting close.  It is my faith that has gotten me through – faith and love.  I can honestly say the song I sing over and over, in my head, is once again Simon and Garfunkel, “Feelin’ Groovy.”  I love the part, “Life I love you, all is groovy!”  It sure is.  Okay and another one, in my head, is the Grateful Dead, “Truckin,” the words ring true, “What a long strange trip it’s been.”   I’m getting ready for the next turn in the road.  I said it was a road trip!  It turns out it’s a cross country trip – bring it on!

________________________

Links to the other posts in this series:

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

“Oh We’re Not Going to Take It Anymore….”

Raising a Twin with Sacral Agenesis – A New State of Normal

9 COMMENTS

  1. Biofeedback is a fine tool. Intuitive training is not simply “working from the gut”it requires and implies a base level
    of training knowledge and experience from which one can rationally make choices. But if one doesn’t have the background
    or experience to know the difference and also doesn’t care, then one is not advocating for intuitive training but rather
    is advocating for “ignorant training”.

    • Hi!
      Indeed. Your language is heady but I am not going to match that verbiage. I can say that I’ve had extensive training from a psychiatrist in self hypnosis upon which I rely heavily and also have training in bio feedback and guided imagery etc. I’ve found these tools to be helpful in all facets of life not just my physical pain. They bring rational thinking and a sense of calm to situations which can seem rather unruley. Thank you for your entry.

      Best,
      Jules

    • Hi!
      Thank you so very much for your support! I write to you now on the other side deep in recovery, doing well! What a long strange trip eh?! It’s always nice to have faith and realize it does not rain forever. Your kindness is very much appreciated.
      Best,
      Jules

  2. Dearest Jahna,
    You are too kind since we share the strife, or parts :) Thanks for your excitement and I’ll keep you posted.
    Thanks for your prayers – needed and you’re always in my thoughts and prayers. SA has it’s way of creeping up but we’re “old timers” eh?! I know, LIFE is awaiting.
    Love,
    Jules

  3. YAHOOOOOOOOOOOOOOOO I cannot even begin to express how thrilled I am for you! You’ve waited so long, you’ve been so patient.. I knew you’d find your solution. You are MY inspiration (Chicago anyone?)

    Please keep us posted as to when all this is going to happen. I know I will be praying all the night before, the day of and for many days after so you can heal quickly and get back to LIFE!

    Love you Sis!
    Jahan

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