Julie Hemker sacral agenesis

This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis.  When we last heard from Julie, she was recovering from a complex surgery to relieve severe pain related to complications of her condition. Things were looking up. Although we greatly missed her wonderful posts, we were delighted she was reveling in her return to normal life with husband Mark and good dog Stella. We are sorry to learn that she once is dealing with severe pain, but as Julie aways says, there is a silver lining – she is once more writing and sharing her story with us.  Welcome back, Jules!  We love you and wish you well. Pat

Another Speed Bump in the Wild Ride of Sacral Agenesis

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

Hi! It’s been quite some time since I last wrote. I needed time to normalize after my last surgery, the pelvic stabilization. I’ve not forgotten the connections made and the kind words from everyone. Thank you. It got me through a very tough time in my life. It seems that blogging helped me too! It allowed me to express myself without doing it directly if that makes sense.  I “justified” it by knowing that my events were helping others. I tend not to let myself feel much just for me. So thank you, kind readers, for that.

I bet you’re wondering what has happened since we last met. Well, I resumed work slowly and I seemed to improve, also slowly. Then I plateaued over the last 6 months and then, to my dismay, I started slipping backward – the pain, my nemesis, returned.

I immediately went to my surgeon (my savior really). He did an MRI and CT of the thoracic and lumbar spine to ensure nothing needed to be done surgically to control the unbearable pain which returned ten fold. But, there is a silver lining, at least that’s what I always say. Because my pain is neurological and radiates down the legs from my back I am a good candidate for a spinal cord stimulator made by Medtronics.

This device has electrodes that will thread through my dural sac and connect to the bone where the culprit nerve roots reside. Then, it

Julie & Mark
Julie & Mark

will release electricity to block the pain signal (all signals are electrical in the body) from getting to the brain and being perceived as pain by me. My initial trial phase is April 7th where we find out if it works.  Once the stimulator is attached to me, I will have to be quite careful not to bend or twist or reach or lift or move much because the electrodes will only be sutured into my skin to keep them in place very, very loosely.

In January, I had an epidural to see if I could get pain relief and of course, I got a spinal leak which took two blood patches to heal but it did and now I’m fine from that. Then I got a kidney infection, the first one ever.  Not fun!

I’m sure you haven’t forgotten my wonderful, wonderful husband Mark. Well, he’s been amazing. He and my Mom have kept the house going, dinner, laundry, Hemakescleaning. I really couldn’t be the woman I am with the man that makes me stronger and more vulnerable at the same time. A strange irony. He makes me feel safe!! And of course who can forget our darling lab Stella who is now three!!!! She is one smart dog and owns me because of that cute face.

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So in proper form I sign off with my favorite song, “Feeling Groovy,” by Simon and Garfunkel who said it best, “Life I love you all is groovy.”  

You can find other posts by Julie here.




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