SammyJo’s CCSVI 9 Month Update

My whole MS history and CCSVI experience is in earlier posts below, but here is a quick background:  MS since 1995, secondary progressive since 2002. Eight years of standard MS drug therapy did not help me, although I had 4 good years on LDN, but that quit working too. Currently EDSS 6.5 walking with two fore-arm canes, so I’m not supposed to get too excited about recovery, just hope to slow/stop progression. My first treatment for CCSVI was Oct 2009. Both jugulars blocked, corrected by stents and angioplasty by Dr Dake at Stanford.

After the October stent treatment I saw some impressive MS improvements, then started to get worse again by May. I thought the MS symptoms might be worse because of nerve damage/pain caused by the stents. So in June I got a doppler exam (Zamboni protocol) at Univ. WA Vascular Lab, and they found my left jugular was again showing reflux when sitting up, no flow when supine.

I returned to see Dr Dake mid July. An MRV did not reveal any new stenosis. During the venogram, he spent lots of time investigating the azygos. He didn’t find any obvious stenosis, but he did three balloons on areas that looked narrow. Did not see any turbulence in the left jug either, he said this could vary from the doppler findings because even the presence of the catheter can alter the flow. The second time was definitely an outpatient procedure, I was discharged after 4 hours in recovery, and had no pain. Being part of the early experimental phase was tough, but I’m glad I did it, and seems issues like nerve damage have been resolved so the procedure is becoming safer. There’s worry about will the stents last, but I am going to rest with my doctor’s opinion these will last a lifetime; he’s seen lots of these in action.

I’m blunt about my symptoms, because that is what others with my degree of MS need to know if they are considering treatment, or working on recovery after CCSVI treatment. Following second procedure, three weeks now of steady improvements. Able to work out on the floor mat again, been down the basement stairs twice to ride my exercise bike for 15 min. First time I’ve been on it since 2008. I go out of the house for a drive with Doug once or twice a day. Before I wasn’t going out at all due to fatigue and bladder urgency, both are improving. Yesterday I was able to walk across an empty room with no support, so balance is coming back. Two symptoms that went away w/i a few months after the 1st procedure are still gone, nighttime leg jerks and constipation. Spacticity and lower leg spasms in the morning also resolved, then came back, still waiting to see if this problem goes away again. I can’t predict if my veins will give me more trouble, but feeling optimistic about the future, and much better quality of life already.

A fun surprise. At the beginning of procedure, I heard someone being introduced to the surgery team as a med student observer with a personal interest in CCSVI, so I called her over at the end of the procedure. That’s when she told me she was Carol Schumaker’s daughter. Carol just organized a fundraiser in San Diego for Dr Dake MS Innovation Fund, and raised over $15,000 for Dr Dake’s MS/CCSVI research. Click here to see ABC7 interview with Carol, and click this video of Dr Dake speaking t the event. In June Jackie Robert’s had a succesful fund raiser in Seattle for BNAC’s research. A newly approved IRB trial is also launching in San Diego at The Hubbard Foundation. Everyone, please continue to encourage donations for CCSVI research!

Other recent advances are the launch of CCSVI Alliance, founded by some of the original CCSVI patients.  Then all of the CCSVI experts met in New York to launch the International Society for Neurovascular Disease. There is so much happening with CCSVI that I don’t have the time to list it all. Please visit the folks on my blog roll who are doing a better job than I of reporting latest developments, and their own CCSVI stories. For now I’m going to focus on getting to know this new person that has appeared in my life…the old me!