To start off, my name is Hailey Walker and I was born with myleomeningocele spina bifida 27 years ago.
Now what is spina bifida?
In medical terms; Spina bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It falls under the broader category of neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them.
noun;
a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It often causes paralysis of the lower limbs, and sometimes mental handicap.
There are four types of spinabifida and those are:
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“Occulta” means hidden. The mildest form, spina bifida occulta results in a small separation or gap in one or more of the bones of the spine (vertebrae). Many people who have spina bifida occulta don’t even know it, unless the condition is discovered during an imaging test done for unrelated reasons.
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In a form of spina bifida called meningocele, the protective membranes around the spinal cord (meninges) push out through the opening in the vertebrae, forming a sac filled with fluid. But this sac doesn’t include the spinal cord, so nerve damage is less likely, though later complications are possible.
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Also known as open spina bifida, myelomeningocele is the most severe form. The spinal canal is open along several vertebrae in the lower or middle back. The membranes and spinal nerves push through this opening at birth, forming a sac on the baby’s back, typically exposing tissues and nerves. This makes the baby prone to life-threatening infections.
And
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This form consists of a diverse group of defects in which the spinal cord is marked by malformations of fat, bone, or meninges. In most instances there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.
Now, here’s a bit of my story;
Unfortunately I have myelomeningocele spinabifida, but I’m what doctors called “a rare case”. I was lucky enough to not have my organs exposed and could be easily operated on.
I wasn’t ever supposed to be walking, I should have needed extensive help all throughout schooling, I should have never been able to do half the things I was able to do, I beat the odd’s, the surgeries were a success!
I had a total of 3 major open back surgeries at Sick Kids Hospital – Toronto, one to fix the spine at birth, and 2 for what is called “tethered cord”, I also had to have 2 surgeries on my stomach, but, here I am able to walk, I passed school with honours in English, and I was ontop of my game – until i fell through the cracks of our healthcare. About 10 years ago I was given a new family doctor as mine had retired, fast forward a bit to 7 years ago, I went to my new-ex family doctor in unbearable pain with my back, she would smirk at me and just tell me to take a tylenol, take a tylenol, I refused and kept telling her all I needed was an MRI, but she laughed and told me I “really didn’t need one and would be wasting resources” fast forward years later to now; I have finally got an amazing doctor who listened to me, he tried everything and was denied constantly for me, I then contacted an amazing group called “HYDROCEPHALUS CANADA- formerly SB&H”, I was connected with an amazing woman who has gone through similar things I am/have and she then gave me the number to a nurse practitioner in Toronto who met with me and has started fighting on my behalf with me, we got the MRI shortly after meeting with the nurse practitioner and low behold, there is a lot of damage in there that needs to be fixed, now the next battle of finding a surgeon who can deal with everything and hopefully stop my referrals from being denied.
In my findings in my MRI were as follows:
I’ve got tethered cord syndrome (AGAIN) , and also have syringohydromylia which basically means my cerebral fluid isn’t able to to flow so its causes build ups of fluids on my spine, I have a lesion at the L1-L2 level
And a lesion on my thoracic spine, I have disc protrusions from my T8-T10 level, and an abutting spinal cord (hernias)
I also have a dorsal contour deformity of spinal cord at T5 level and I’m missing 1 rib-bearing thoracic vertebrae and 1 thoracic vertebrae
As well as
Spinal canal and neural foraminal stenosis seen at L5-S1 level and in the sacrum secondary to mild degenerative changes and deformities of the lumbosacral spine
And then
Distortion of the left dorsal contour of spinal cord at T5 level not sure if related to CSF (cerebrospinal fluid) flow pulsation effect, versus a space occupying lesion such as an arachnoid cyst which if it pops, I’m paralyzed.
With having minimal to no doctors help, every single day is a constant battle to stay walking, every single day is a constant battle to stay focused and to stay positive, every single day I hope that we can get closer to finding out more about spina bifida and being able to help everyone who suffers and for everyone who has ever been denied or told you’re just “making it up” and you are too young to have these issues; we will get there, I promise you are not alone.
Did you know !?!?!?! –
The death rate from age 5 to 40 years in people with treated open spina bifida is 10 times the national average. Survival to age 40 can be predicted from the neurological deficit at birth.
FUN FACT – In Canada, June is Spina Bifida awareness month. In America, October is Spina Bifida awareness month
Here are a few links to facts about spina bifida if you’d like to learn more!
Feel free to share this post and lets get the word out there about spina bifida please ๐๐ผ
**UPDATE: as of january 21st 2020 – still looking for a neurosurgeon.
https://www.aboutkidshealth.ca/Article?contentid=848&language=English
https://www.ninds.nih.gov/DISORDERS/PATIENT-CAREGIVER-EDUCATION/FACT-SHEETS/SPINA-BIFIDA-FACT-SHEET
https://www.mayoclinic.org/diseases-conditions/spina-bifida/symptoms-causes/syc-20377860
Fight for yourself 