Many of you know that I have been searching for answers. Over the past 2 years my health has started to go down hill. But over the past year it has completely spiraled. I am at a point where I struggle to get out of bed, and am relying on pain killers to get through things. So on Thursday I went to Cincinnati to see an Orthopedic Surgeon, Dr Durrani, and then on Friday a Geneticist, Dr Tinkle. I have had numerous tests done before I went. I am going to outline hear as much as I can about these visits. It is a ton of information and my head is still swimming. For those who know about EDS this is not new news, but for people who have never even heard of EDS, I will do my best to explain.
When I went to see Durrani he felt I have Cranial Instability. This is what Brooke has. The difference...hers was caused by Chiari and surgery, and mine was caused by Ehlors Danlos Syndrome. My head is wobbly and extends to far back, and to each side. Over the years I have worn down the joints and bone, and now I am in constant pain because of this. He feels I need a fusion. The question is whether I need a C1 to C2 fusion, or a fusion that starts at my Cranium base and goes down to my C2. He needs more scans. I go back in 3 weeks to have another flexion and extension MRI and a 3-D CT scan. In the meantime he has ordered a cervical collar that I need to wear to promote some stability in my neck. We are hoping to do the surgery as soon as possible. Hoping for August or September.
After we talked about my neck, he moved onto my lower lumbar spine. I have to apologize because he gave me a technical name for my lower back problem but I can't remember it. My head was spinning by this point! But basically the vertebra's in my L spine are disintegrating. This he felt was due to EDS as well. But he could not make the EDS diagnosis, Dr Tinkle had to. He wants me to receive injections in my L4-L5 spine. This will not fix the problem but hopefully will keep them from disintegrating more. Plus I have to wear a back brace. He told me that my other joints are probably doing similar things. As I listened to him reading my symptoms and course of action into his recorder, I was overwhelmed. After he left the room I said to the nurse, "It sounds like I am falling apart!" She said, "Well you kinda are." :(
I was completely exhausted when I left. I was so thankful to crash with the kiddos and my friend Monica, and her sweet Danica at our hotel. I knew I would have to grasp even more info the next day. We headed out early Friday to see Dr. Tinkle. Brooke and I were both supposed to see him. I also had Aidan with me. He examined Brooke first. Thankfully she does not have Ehlors Danlos Syndrome. Poor girl has enough to deal with! He then checked me. They take a very in depth family history and ask many questions about my early years. He then performs a test called the Beighton Score. You have to meet certain criteria for them to give you an EDS diagnosis. The main symptom is hyper mobility in joints which I have. This may not seem like a very big deal, but over time it is. There are many many other symptoms as well. Basically a person who has EDS is lacking collagen in the their joints. Their joints become loosey goosey. Think of a rubber band that is overly stretched out. So my joint should be tight, but they are not. And over time my muscles have tightened around my joints to overcompensate. This is why I have a bulge on my neck. My muscles have tightened up to protect my neck from just letting my head fall over. Dr Tinkle feels the worst of my symptoms is my neck and agrees with the direction Durrani is going. He also feels my lower spine needs help. After these are worked on I need to have my jaw looked at because I have bad TMJ. He is worried if I wait to long my jaw will just lock up. He wants me to not eat real hard foods or take big bites. He also told me he could splint my joints and have me in PT once I do a few more things with neck and back. He added a few new meds to my list, and is watching me for a syndrome called POTS. He is not diagnosing me with it yet, but may in the future.
Dr Tinkle wanted Aidan to be seen. He had him squeezed in to see Dr Neilson. He performed the same tests on Aidan and confirmed that Aidan has EDS. My heart sank! He has to have PT and OT to work on some muscle and joint issues. He also needs inserts for shoes as his feet are rolling in and turning his knees and hips in a weird position. The good news...sometimes boys grow out of EDS. So our hope remains. Plus now we know so we can avoid contact sports and things that would stress his joints. I want to help him to not be where I am at 35.
Honestly...I feel like my head is going to explode. Not just from it hurting, but from all this info. I really liked both of these docs! Dr Tinkle finished my sentences for me. It was like he knew me since I was a child. He understood my symptoms, and validated the pain I have felt. They both were also very honest. There is no cure for EDS. People with EDS tend to continue to deteriorate over the years. With my back and neck where they are right now, the likelihood of a wheel chair in my future is high. It could be soon it may be years. Needless to say I will not get better, I will only learn to live daily and cope with the symptoms. There are things to offer relief. We started slowing down because of Brooke, but now our lifestyle will drastically change. This is hard for me as I love to visit friends, have a clean, organized house, and be involved. The one amazing thing is God has put two amazing women in my life who are on the same medical road as me, and live only a short distance away. The fact that our lives crossed paths is totally a God thing!!! He has made it possible for us to love and support one another. I ask for prayers for our fam, but please also pray for my friend Kathy as she is having fusion surgery in August, and my friend Monica, who needs a miracle and a house to live in soon. Through Him all is possible!