Hey everyone my name is Stephanie Stabile! I am from Debary Florida . I was diagnosed with Chiari Malformation after a car accident in 2000 . I have spent my whole life with headaches and pain and never knew why...till my first mri from the accident. Numerous dr and surgeons kept telling me i need to have decompression surgery ASAP.
I was then diagnosed with Syringomyelia a year later. Yet again , surgeons kept telling me i need the surgery. At the time I was a single mom with a 1yr old daughter named Felicity and there was no way i could of went through that at the time. I was told by a surgeon at Vanderbilt hospital that it waa not a rush and i would know when the time was right for me .
Here i am 18 yrs later. I still have not had the surgery. My herniation is at 16mm and the syrinx is located from c2-t1 in my spine. Everyday is a battle with headaches, pain and numbness.
Yes I have missed out on a lot due to having Chiari Malformation and not being able to get out of bed . But by the grace of god and prayers sent to god by many friends and loved ones I’m still here for my daughter and now fiancé Michael Hoffman .
Despite having Chiari Malformation, I still try to lead a normal life . I am a event planner . I love planning parties . I also love doing crafts and spending time with my daughter Felicity and future husband Michael . Yes I miss out on things like riding roller coasters but it’s a small price to pay to be able to be here for those I love .
What is my advice for all of you who are dealing with Chiari Malformation or any other disability? Never give up...keep fighting... Always get a second opinion before doing something drastic ..research as much as you can!