TCI day and finally HOME!!!!! Yipppeee!!!!!

Sorry it took me so long to post but I've been REALLY tired. It's been a long, tough few days and I've been exhausted.

I had my visit at TCI and what a day it was. We got there at about 10:00am and didn't leave there until 7:30pm!!

I was examined first by a nurse practitioner that asked a bazillion questions and tested my joints etc. After the exam she seemed to suggest I have EDS or Ehler Danlos Syndrome, along with tethered cord and cranial instability. She lead us to the education room, which had computers with educational videos about tethered cord, cranio-cervical instability and others. They also had juice, coffee and other munchies to eat (probably due to everyone being there for so long!).
Dan and I watched the TC and cranio-cervical instability video and boy, did they ring a bell with me.

I then was seen by the neurologist Dr. Mora. He did an extensive exam and suggested bad posture and cranio-cervical instability, carpo and cubital tunnel syndromes and suggested I get a at home traction device, use wrist splints to bed, use a lumbar support pillow at all times, and learn the Alexander technique for strengthening my core muscles. This poor man always suggests bad posture for most( so I've been told), if not all of the patients he sees, but he himself is so stooped over and looks as if he needs a nap! I think he should also take his own advice, but he seems to try and help. I will take his advice.

At long last I got to see the famous Dr. B!!! He is a very nice man and very funny too! He too is an adoptive parent only his son was adopted at age 14 and is from Belfast. He has three bio children, one of which was born with Chiari! What the chances huh? Anyways, he told me that he suspects I have occult tethered cord, along with herniations to my C, T and L spine. From what I gathered, I don't have true Chiari but all of my symptoms "smell of Chiari" except I don't have the small Foramen Magnum. I instead have a larger than normal foramen magnum (of course I'd have to be different) and that I was born that way, possibly due to the occult tethered cord in the first 5 weeks gestation. That is when the FM is formed. I have tonsillar herniations (7mm) and my brainstem is elongated. It's (my brainstem) is suppose to be in my head but of course, I'd have to be different again and have it continue into my cervical spine! This is probably what is causing my chest pain and shortness of breath along with the other things (dizziness, headache,blurred/double vision, etc, etc)
I have to have more testing done (echocardiogram and urodynamics) and if my echo is good and my uro testing is suggestive of OTC, then he'll do what is called a Section Filum Terminale, which is he will cut the part of my spinal cord called the filum terminale. This he thinks will reduce the tension/pulling of my spinal cord, brainstem and cerebellum, releasing the structures so they can take their correct position and therefore help with my symptoms. He also gave me some medicine (Diamox) that is suppose to help reduce the amount of CSF I produce, to help cut down on the symptoms. This medicine is also used by people with glaucoma to help reduce the amount of ocular fluid (?) they produce.

As far as the uro testing is concerned, unfortunately no one around here does it and I will have to drive either 1 or 2 hours away to have it done :-( Oh well, at least it will be another piece of the puzzle found. If I can't get it done there, I will have to have it done in Long Island. If I have to go back there I'm taking the kids with me.

I missed them so much! They lift me up with their sweet smiling faces and little voices and help distract me from this stuff. They loved staying with G-ma and G-pa but when Sonja got on the phone with me while we were in Long Island, she sounded so sad, and she kept asking me when I was coming home and when was my Dr.'s appointment. When we finally did get home she was ecstatic and said "I missed you so much Mommy (and then to Daddy too)!" She wouldn't leave me for a second! We may have to have her miss school but I don't think it'll hurt her academically anyway, after all, it is only Pre-K!

I had some questions regarding my visit and diagnosis so I e mailed Dr. B. As extremely busy as he is, he e-mailed me back and answered my questions! Now how many other doctors in his position would do that?

I'm impressed by him and all of the staff at TCI and so happy I went there. I know if anyone can help me they can.

I'm also so happy to be home too!!!

Take care all!

Much love!

Until next time.....