So much has happened since I last posted even though it's only been a couple of weeks. The good news is that we finally have some answers! 

First Alan drove me down to Atlanta on October 20 for my upright cervical MRI. The goal of this test was to see how weight-bearing and different positions were affecting my spine and everything else inside of my neck. Traditional MRIs are done laying down inside of a narrow tube, so sometimes it can be difficult to see problems without being able to take gravity into effect. An upright MRI is performed while a patient is seated so it requires a special type of machine. Unfortunately there is no upright MRI in the state of South Carolina at this time, so that's why we had to go so far away for this test. 

My symptoms are much worse when I'm sitting up and when my neck is in flexion (bent forward), so I was very nervous about doing the test. I am always nauseous and dizzy while upright without my cervical collar, and certain neck positions make it worse and cause difficulty breathing. I was really worried about throwing up or passing out in the machine, but thankfully neither of those things happened! The techs were extremely kind and did their best to make me as comfortable as they could. I got very shaky during parts of the test from pain and muscle fatigue, but they retook images as needed until they had clear pictures in each of the three positions. I appreciate all of the prayers and kind messages that you guys sent that weekend!

MUSC recommended staying in town overnight on the day of the test because they didn't think that I would be able to do the drive home right afterward. I'm really glad I listened to their advice because I was exhausted and didn't feel well when it was over. My amazing friend Lauren and her husband Robert took care of Luke and Charlotte while we were gone and gave them a super fun weekend with trunk-or-treating and a visit to Eudora Farms.

The following Monday (the 23rd) I also had a lumbar spine MRI. Thankfully I was able to do that one close to home! Alan mailed both MRI discs to MUSC that morning so they could review the images themselves. Then we waited, praying that the pictures would be clear enough despite my shakiness and that I would get a diagnosis soon.

This past Monday (October 30), I was able to do a phone visit with MUSC. Finally, six months into this journey, I received not one but FOUR diagnoses. The upright cervical MRI showed that I have craniocervical instability, as well as two bulging discs lower in my neck (C5-C6 and C6-C7). He also told me that my lumbar MRI and many of my chronic health issues are consistent with a type of tethered cord syndrome associated with EDS. He believes that the trauma and whiplash effect of my fall back in May, in combination with my existing hypermobility and instability, led to a central cord injury, which in turn caused my neurological symptoms.

I know a lot of people aren't familiar with these conditions (I definitely wasn't until recently!) so I've included some infographics from one of my new favorite science bloggers, Dr. Cortney Gensemer. (Dr. Gensemer is a post-doctoral scholar at MUSC who studies EDS and has the condition herself - along with some of the other big diagnoses that I just received.) I'll also try to explain what these diagnoses mean for my situation in layman's terms.

I have mentioned in my previous posts that I have a condition called Ehlers-Danlos Syndrome, but I haven't really gone in to what that means. EDS is a condition that causes the body to produce defective collagen. Since collagen is important to the entire body, EDS can result in a multitude of problems. Most people with EDS have overly stretchy connective tissue that leads to hypermobility (range of motion beyond what is normal), joint problems, and chronic pain. Normally ligaments stabilize joints and keep them from moving too much, but in EDS this connective tissue is loose and doesn't do its job very well. Many people, including myself, experience subluxations (partial dislocations of joints) with little to no cause due to the extreme instability associated with the condition. (Some people even have full dislocations, but thankfully I haven't had those.) Many of us also have an endless list of seemingly unrelated health issues because collagen is an important part of the skin, bones, organs, even blood vessels and the intestines. There is no cure for EDS - treatment involves treating the various secondary issues as they develop.

So like many parts of my body, my neck is not very stabile, and I can bend it much more than I should be able to. This probably caused or contributed to some of my chronic pain and other health problems that I've had over the years, but it certainly didn't interfere with my life in the way in the way that it is now. But when I fell, those loose ligaments didn't support my upper spine the way that they should have. My team at MUSC believes that my neck's excessive mobility led to trauma in the upper part of my spinal cord - essentially like a bad bruise. Not what you want to happen to such an important part of your body!

A lot of times when people with EDS have an injury like this, the ligaments become even more stretched out, and instability worsens. The neck is full of all kinds of other important things beyond the spinal cord - major blood vessels, other important nerves, the esophagus, and the trachea to name a few - plus, my instability exists in the top part of my spine near my brain. Sometimes when the spine has excessive movement, it can put pressure on any or all of these structures. Thankfully, my images don't show any signs of ongoing brainstem or spinal cord compression - that would be very dangerous. But MUSC has advised me to see a neurovascular specialist because they are concerned about how my major arteries and veins in my neck are being affected. My referral has been sent, and I'm waiting on them to review my file and contact me. Please pray that I can get an appointment with this doctor, that his waitlist isn't too long, and that he will be able to determine if I have any vascular involvement.

Another issue that MUSC diagnosed is tethered cord syndrome. In most people, the spinal cord floats freely within the spinal canal. This is a good thing because the cord is not supposed to stretch! However, some people are born with or develop a tethered cord, where it becomes stuck to the surrounding tissues and can't move freely anymore. The cord then becomes stretched, and eventually it can cause pain and neurological problems. Sometimes this is a congenital issue that children are born with (common in spina bifida), or sometimes it happens later in life (for instance, after surgery when scar tissue develops). Sometimes it is associated with EDS, though how this type of tethered cord happens isn't very well understood yet. Recent research has linked it to a problem with the tissue that normally stabilizes the bottom of the spinal cord called the filum terminale. This diagnosis is important too because tethering can put more stress and tension on the other parts of the spine.

The first line of treatment for my upper spine instability and bulging discs is physical therapy. The goal would be to strengthen my neck muscles to hopefully better support my spine. I've been cleared to restart some gentle exercises at home, and I have an appointment at the end of the month with a physical therapist who specializes in EDS and CCI. I'm excited that I will be able to try PT and we are praying hard that it will help. We were all very worried that I would need one or more spine surgeries immediately, so this is great news. However, cervical spine surgery could still be in my future if PT doesn't work out, and surgery is often the recommended course of treatment for tethered cord. I have a follow-up at MUSC in mid-December, so hopefully I will know more then.

As if that weren't enough, some of my recent bloodwork came back abnormal, so that has brought up even more questions that need to be answered. I'll be seeing some more specialists over the next month to try to gain insight into those results.

Meanwhile, Luke has had a fever and respiratory symptoms and is still on the mend. And because we clearly don't have enough going on, Alan has his own surgery scheduled next week. So things have been really crazy here, and it doesn't look like it's slowing down anytime soon!

Thankfully one of my relatives is traveling here to help us for a little while next week, but we can use all the prayer we can get - for Alan's procedure and recovery, for my doctors, for my physical therapy, and for our family as we navigate this difficult season. We appreciate all of your continued love and support!