I was going to start a thread to relay my experiences and ask for some advice. I think I'll do it here since I have had a a mixed response to treatment.
My symptoms prior to my initial procedure were predominantly on my right side. My LIJV was stenosed ~70%. My RIJV was stenosed ~30%. I had both ballooned in November 2010. I did not have an immediate response, but many symptoms did fade away. About 2 months after, I started to experience new symptoms. I was scanned again in June 2011 and found that my RIJV was now worse than prior to the original procedure. It was over ballooned and now I have extensive scarring. My LIJV had restenosed as well. New Dr. proceeded to balloon the LIJV again successfully, but the right restenosed again within 30 days. My RIJV is no longer treatable with venoplasty. I will need a stent. My doctor and I are both hesitant to use a stent at this point as my MS is relatively mild.
I am also very dissapointed with my first doctor. I did not see my doc after the procedure, just the nurse. Even the next day for a follow up, I only saw the nurse. The nurse was unable to answer the questions I had related to the procedure. In addition, I was provided a cd with a couple of jpg's of the venogram. I did not receive the full imaging study. And for follow up, I called repeatedly and either did not receive a call back or the nurse was busy and could not return my call. I have yet to even speak with my initial doctor or the nurse. I wonder how this doc knows he was over ballooning without proper follow up. Fire and forget. Also, my initial doc does not do ultrasounds and I need to contact the third party to perform follow up US. I am skeptical of that as well since they were unable to find a problem using the Zamboni protocol. My guess is they would find a problem now
I understand I was treated when using oversized balloons was the method being utilized at the time and I accept that my doc was not the only one. I am more dissapointed with the follow up. It was substandard, IMO.
As it stands, I am afraid of having another MS attack, as my left side feels like my right did prior to my first MS exacerbation. Buzzing and twitching on my left side. My right side is doing pretty well. I know an attack is coming, I hope I can make it until some improvements in stents comes along. Perhaps once CCSVI is accepted by the mainstream, some fast tracking of soluble stents will happen. Probably wishful thinking.
I feel much more confident in my new Dr.
I have never taken any DMD's.