I had the liberation procedure performed at a private clinic in Texas on May 17th and would like share my experience and the results with you.
First, a bit of background on me. I am a 46 year old male. I was diagnosed with MS in 1999. My initial presentation was of a partial transverse myelitis at the C2 level. The symptoms at the time were right leg weakness and numbness of my left arm and leg. A few months later I had an optic neuritis that resolved. Subsequent episodes which occurred 0-3 times per year, consisted of episodes of leg weakness and numbness. My EDSS pre-procedure was 2-2.5. I walked with a slight limp and was still able to play tennis. Fatigue was moderate and affected my ability to stay up, socialize and entertain in evenings. I still work full time. Cog fog was present and I would say mild to moderate.
I managed to find an IR to do the procedure on me through my brother-in-law who is a surgeon in Texas. This IR had no experience with CCSVI but did go through the literature I supplied him. He was very competent and thorough. The procedure took about 3.5 hours. Doppler done in Montreal showed very significant and sustained reflux in my left vertebral and very reduced flow of my left jugular. The technician said that I was one of the 10 worst cases he had scanned (out of over 100). He was surprised and said that patients with my finding were usually not as ambulatory as I was. My MRV done at False Creek was read as normal, with the exception of a congenital abnormality in my superior vena. I had a duplicated superior vena cava and a persistent left jugular vein. What this means is that my left jugular drains directly into the heart. The MRI showed four lesions in the brain, all on the left side. A previous MRI showed numerous lesions in my spinal cord from C2-C6. These lesions had progressed significantly over the previous 3-4 years.
Because of my congenital anomaly the venogram was done though two access points, my right groin and my left arm. The IR thought that going through my right groin, to the heart to access my left jugular was risky. The azygous was first imaged and showed a 50% stenosis at its ascending portion, just before the arch. It was ballooned to 80%. The right jugular was thought to be normal. After looking at the images with my untrained eye, I wonder if there is a stenotic valve on the right that was missed. On the left jugular, there was very significant narrowing at its lower portion. I believe it was hypoplasia. Attempting to bypass this obstruction were an extensive system of collaterals, probably greater than 15. They were quite impressive and the IR said he was a believer after seeing them. Unfortunately he did not feel there was anything balloonable on on the left side. This was quite discouraging. I am under the impression that my finding were quite unusual and not typical of what is found in CCSVI. If any IR’s are reading this thread and would like copies of my images for learning purposes, I would be glad to send them. Please pm me.
In the recovery room where I lay for two hours, I did not recall feeling anything different. When I got up,however, my gait felt very different. My immediate reaction was that something bad happened. With more walking, however it became very clear that my gait had significantly improved. I lost my limp. The next morning, I got up early and went for a one hour brisk hour walk up and down the neighborhood streets. I had only a very minimal limp at the end of it. This would normally happen after after 1-2 min of brisk walking. This was a definite improvement for me. The week post procedure, my fatigue completely resolved, and cognition improved. Hands were also warm. Spasticity gone. My tennis partner said he hadn’t seen me run like I did for years. I did, however develop one new symptom which is persisting. I have slight numbness of the tips of all my fingers, excluding the thumbs.
I am now almost one month post procedure. Most of the improvements, that I had experienced have slowly dissipated. My hands are cold again, and my cognition and fatigue are back to how they were. My gait and leg strength, although weaker than they were 3 weeks ago still remain better than what they were pre-procedure.
In order to try and objectify any improvements in my condition, I arranged to have certain tests done pre-procedure. I will be having the post tests in the coming weeks. The tests I did were the following: evoked potentials, somato-sensory potentials and Biodex strength testing of my knee joints. I will keep you updated on the results. Seeing that my condition is almost back to baseline I’m not sure we will see significant improvements.
I will eventually be posting on the tracking thread.