Tuesday, August 9, 2016

Why a Neurosurgeon and Why Maryland

This past weekend, my dear hubby and I traveled to Washington DC to meet with a neurosurgeon who specializes in treating people with Ehlers Danlos Syndrome. We ran into a few snags, but overall had a good trip.  

People have asked why a person with joint issues would need to see a neurosurgeon. Well, Ehlers Danlos doesn't just affect the joints, it affects all parts of the body that have collagen. It can cause all parts of the body to not work the way they should. This can cause issues like Chiari Malformation, cervical cranial instability, atlantoaxial instability, compression on the brain stem and/or spinal cord, syringeomyelia, blocked cerebral spinal fluid and other spine and brain issues. 

Many doctors don't fully understand that Ehlers Danlos can cause so many problems, so finding a specialist is important. The majority of EDS specialists are in Maryland. That means, if I want to get help, I have to travel. (By the way, flying is really hard on me.)

Dear hubby and I traveled to St. Louis in March so that I could have an upright MRI of my brain and cerebral spine taken. These special images were needed because the insides of people with EDS can stretch and hang in abnormal ways when standing or sitting, whereas swhen we are lying down we may appear "normal". 

According to the neurosurgeon, my images looked okay. That's good, but not the end of the story. It doesn't look like I have a Chiari Malformation, but we may need to check the cervical cranial areas again. When I took the test in March, I remember feeling like I couldn't move my head all the way down because the "helmet" got in the way. (The "helmet" is a device used in upright MRI machines to help hold your head in place. It was difficult to flex and extend my neck with it there.) I do have symptoms of this issue, so we'll be talking to the neurosurgeon about that over the phone to see if he would like me to have another upright MRI.

I do have the classical symptoms of atlantoaxial instability or AAI. It's a long phrase that basically means the top two vertebrae in my neck (the atlas and the axis) move more than they should when I rotate my head to look side to side. (There is a special CT Scan that can be done to confirm this, but it's proving difficult to find anyone who knows what the test is or how to do it.) It may not seem like a big deal to be able to over rotate your head, but it can actually cause a lot of health issues. Numbness and tingling in the legs, feet, arms, and hand; blurred vision; black spots; passing out; slurred speech; and more. In severe cases it can cause permanent paralysis. 

We don't have it confirmed that I have either of these conditions; but if they do confirm it, my hubby and I will have to decide whether or not the treatment is right for me and our family. In meantime the doc wants me to wear a hard cervical collar as much as I can tolerate it to keep my neck from rotating too much and causing problems.

This is us doing a little sight seeing after my doctor's appointment. 

So that's why my dear hubby and I traveled all the way to Maryland to see a specialist about my neck, back, headaches, and more. We're back home and enjoying being with our kiddos again. 

A special thanks goes to all those who made this trip possible. Thank you to Miracle Flights, our home church, friends, and family. Your support and help is more appreciated than you know.


  1. Thanks for the update! I've been hoping you would share more about your appointment and what you found out. You are such a brave person and it's inspiring how you are doing everything you can to live fully with your family. Praying for you as you continue to research and make decisions.

  2. Praying for you and your family. I'm so glad you have found experts to help you find answers. Thanks for the update.

  3. Praying for you and your family. I'm so glad you have found experts to help you find answers. Thanks for the update.