Invasive Traction test for
Cranio Cervical Instability
(and w/ Ehlers-Danlos Syndrome)

At the end of February 2005 I went to Great Neck for testing. This was a serious step forward in many years of lack of good medical progress in dealing with my seriously declining health. After 10 years of Multiple Sclerosis as my diagnosis, I was told that I might not have MS. My SF neurologist did a few more tests, to no clear result and told me there was SOMETHING wrong, but they didn't know what.

On my own again, I started my research. I went back to the beginning. The first major diagnosis in my life was Noonan's syndrome. In researching that seriously for the first time, I followed postings on a Noonan's list talking about Chiari Malformations and surgery. The symptom list seemed to fit, so I looked at where they were all going...The Chiari Institute in Great Neck NY. I decided after 10 years of various doctors being less than detail oriented with my diagnosis and treatment, I wanted to go straight to the experts, so I would feel comfortable with trusting their findings. I called TCI and they agreed to review my records. When I was getting them together I got a copy of a report I had never seen before. It listed tonsilar ectopica and that it beared watching. (eye roll) I called TCI back and told them this additional info. They said I should make an appointment. So, that brings me back to February.

Before my appointment I underwent a battery of tests. MRI, CINE MRI, 3d CT Scan, Cervical Xrays, Tilt table test (heart thing), Holter monitor...you name it. Then I sat down with Dr. Bolognese. The 3d CT scan wasn't back and he seemed to be stalling saying what he felt was going on. It came in half way through the appointment and his approach changed completely. He explained that I had a Chiari Malformation but that wasn't the main issue. He said I had a cranio-cervical instability and showed me on the scan and how my C1 was too close to my skull. He asked if we could extend our trip to New York. He wanted to admit me to the hospital for invasive traction. We scrambled to figure out how to stay an extra week and researched online trying to figure out what the hell invasive traction was. We didn't find much.

I went into the hospital. The TCI crew was really great. I was stressed that they weren't going to do the lumbar puncture (which they did while I was sedated for the invasive traction install under floroscopy, but they did a great job. So. They put me under for about 15 minutes, using an anesthesia similar to what is used for a colonoscopy. I woke up in recovery and was soon moved up to a room. I got really lucky and had a nice young woman for a roommate. I was in a lot of pain and very nauseous from the anesthesia.

People from the hospital staff came in and set up the frame over my bed. Dr B tightened the bolts a bit, I think looking back, maybe a little too much cuz that part continued to hurt...and then the doctors came in and hooked up the chain to a pulley and some weights. It felt weird, but good. The insertion area still hurt, but otherwise it was ok. In fact it was so much relief, that I fell asleep while I was sitting up, under traction.

It relieved a lot of my symptoms. A LOT. After a day of having to pee on a bed pan (which was really hard, cuz I didn't have much leg mobility) they let me get up and go to the bathroom. I was glad we had driven to New York so I have my powerchair. It felt weird to move around with the weight resting on my head though.

After 2 days of something like 4 hours on a couple of hours off the traction, Dr B came in and asked how I was doing. I said that I didn't know what to say, cuz I felt like it would sound like I was exaggerating. He said go ahead, he'd heard it all. I said I honestly felt like I was in a different body. He answered that we should do surgery, and soon. Dr Remy came in and took the bolts out. I was shocked how long they were. The puncture wounds were deep, looked like bullet holes...but they healed up quickly... looked pretty good by the end of the day.

I didn't feel like much for a couple of days. But I healed up pretty quickly from the experience. We drove back across the country to Oakland and dealt with the prep for surgery. I had surgery 2 months later. You can read about surgery stuff on my blog at http://kbanshee.blogspot.com