This is part 6 of a series of posts by Julie Hemker, a young woman born with Sacral Agenesis, and her Mom, Charlotte Schild. I am so grateful that they have been willing to share their stories with you, my dear readers, about what it is like to be born with a serious birth defect that required 47 surgeries by age 37. And, what it is like to raise a family when one of your three children has a chronic condition that needs frequent healthcare interventions. I hope you have loved getting to know Julie and Charlotte and their family/friends and Julie’s dog, Stella, as much as I have. In this post, Julie describes her anxiety about having to undergo yet another procedure…and how the antidote to her fear is hugs from her family, including her big yellow Lab, Stella. You will find links to the first five posts. Pat
Wow, what a ride these past couple months have been for me and my family. Always able to return to the positive and remain the fighter who gets through everything, I feel it is important to express what it’s like to be in the trenches of something medically scary, painful and shockingly new.
First, I have a CSF leak with pseudomeningoecele (collection of CSF in the nearby soft tissue). Then I fell and sustained a complex concussion. Now what?
Luckily I am recovering from the concussion, which was an unwelcome setback. Still, here I am, four months of lying in my bed – on “bed rest” – because of the CSF leak at the lowest lumbar level I have. My vertebrae end at L4 because of the Sacral Agenesis and my sacrum never developed in utero.
One thing I know from my educational and professional background is that highly positive people also experience all emotions with strength. It takes immense amounts of fortitude to remain calm and focused on what needs to be done, expressing my emotions, while also taking charge of my health care.
We have reached a crossroads medically. I have completed a long enough time period, on complete bed rest, without significant improvement and am being sent on to neurosurgery.
Sometimes there is no way to sugar coat reality and this is one of those times. The diagnostic scans are needed to show the specific location of the CSF leak (so far only palpable under the skin). I cannot have an MRI test because of prior surgery, a pelvic stabilization, where they placed a 7” metal plate and 8 screws and a bone graft in my pelvis. All this metal is directly below where my current issues exist. The metal completely distorts the image and renders it useless diagnostically. Even the CT, which can still be used on me, is distorted to some extent. Because of my unique anatomy and scar tissue, it is nearly impossible to see any changes or issues.
So my medical professionals are left with only one diagnostic test to perform – the myelogram. This test requires a needle be inserted just shy of the dural sac where they inject Iodine that can be seen on scans. They are already sure nothing will be visible because of the reasons stated above.
I had 4 of these in 2010 with the CSF leaks I suffered and they surmise that due to one of them a leak resulted requiring a blood patch at T11-T12 the level (a very risky and painful procedure). The amount of fear and anxiety thinking about it makes me quiver knowing I will have to be that strong again.
I know, cognitively, they will have to do the test and I will get through, but it is lonely, cold and eternally frightening back there, alone being brave while they stick needles in between vertebrae and inject dye – knowing physiologically what could happen if I move or someone’s hand makes the slightest ill movement. I get through it because of my faith and I know my husband and parents will be there when I come out of the room. It does not take away the fear or pain during and after the procedure knowing that a blood patch is next.
One of life’s lessons I learned when very young is that you have to be your own advocate because no one will do it for you. My parents taught me that and empowered me to take charge and to always, always, be aware and know what is being done to you and why.
Here I am at this crossroads and I’m taking charge of my health care, with the minimal energy I have left. I will crawl to ensure the best medical professionals are working on me. After over 40 surgeries, 10 of which have been spinal, no one wants to do anything. They are leaving me, out of fear, in my bed. There is no quality of life. I’m not saying I want something done but I want the correct tests to be run, not because it’s what they usually do but because my anatomy (however unique) is taken into account as well as the risk factors.
At the end of the day when I try to sleep, through the pain, no one can take away my feelings of loneliness and fear. I’m so afraid of what will happen this time.
Because of the pelvic stabilization surgery in 2009 I am able to walk again! However, I never could have imagined the challenges which would arise in future diagnostic testing especially since the root of my spinal issues are always in the lumbar section – now difficult to image in any way.
Keep in mind, only 1 of my five tethered cords ever showed on an MRI and that was before the metal was implanted in my body. I was then in the pediatric world with the best care possible. He was skilled, confident and knew from symptoms and length of time when enough was enough. The problem is now, I’m afraid that no one wants to deal with me medically anymore because of the risk. I know and understand the risk, but I want to enjoy life.
I love summer. We sail, play with Stella (our yellow lab), cook, garden, grill out and enjoy the little sun the mid-west sees. I’ve always been an outdoor girl. Sure biking is out as is taking long walks, but we can take an evening stroll with Stella and I can use my walker.
It’s bliss to interact with the outer world. The smells in the air, the birds singing, tree frogs chirping just calms my soul. Right now, I’m essentially a shut in fighting for myself because sometimes life isn’t all sunshine and roses.
I feel pressure to be smiley throughout this process, but I believe to truly be authentic it’s essential to be honest with your feelings and share that. With all my heart, I believe that somehow, some day this will be resolved.
To remain empowered I break my day down into different segments to feel I have achieved something making it through a couple hours. Each situation is what we choose to make of it as well as attitude.
I’m not negative, just discouraged. I need a hug really. Hugs are the best because they say what words can’t. It’s like I need a perpetual hug, but I’m lucky since I have Mark, my family, and Stella. Ironically, Stella gives the best bear hugs ever.
There is nothing like the feeling of your lab backing into you, while sitting on the floor, leaning her entire back into my chest and torso. It’s like she needs a hug too. I rest forward on her sturdy body and wrap my arms around her and we stay like that – it’s as if time is suspended. Most of my time is spent at home with Stella which is why I speak of her so much. I spend more time with her than people. She is my guardian angel.
You can read Julie other posts here