For quite some time now I have been pondering why all my so called MS symptoms went away after my angioplasty in 2010 but my legs never got 100% better. In fact, over time, since my CCSVI treatment, my legs have been getting progressively worse. My symptoms: difficulty walking, heaviness, swelling, pain, numbness and feet turning blue. I speculated it might be because I had a membrane growing inside my left jugular stent that was occluding blood flow but I figured it was more than that. I have thought that because we are born with venous malformations of the central nervous system what is stopping us from having other venous malformations throughout our body? I had also heard that the azygos, iliac and renal veins can play a part in lower body mobility. When I was treated in Poland they only looked at my azygos and jugulars. I decided to look into getting those other veins looked at along with seeing about the membrane in my stent. 

I did a lot of research before deciding to go Vascular Access Center in Seattle, Washington on July 28, 2011 with Dr. McGuckin. Why didnt I go back to Poland? I really would have loved to, as I trust Dr's Simka and Ludyga implicitly, but Euromedic doesnt look at the renals or iliac. The findings from VAC were left iliac 50% stenosed, right iliac normal, left renal 50% stenosed, right renal normal, My azygos had a tight web like stenosis and was 80% blocked after cutting out the webbing the flow was still blocked so they put a stent. The membrane in my left jugular was cut out and blood flow was returned. My right jugular had restenosed 50% and was ballooned also. 

My legs did not get any better after treatment, unfortunately, so I got a referral for a Doppler sonagram in Salem, Oregon while I was down there visiting my Mom. EUREKA! Chronic venous insufficiency in both legs! Ever since I was DX'd with MS I was told my leg problems were MS. NOT TRUE! I am back home now and plan on getting referred to a vein specialist. From what I understand, it looks like vein ablation treatment will remedy my problem. This is the same treatment they use for varicose veins. click here 

I went into all of this CCSVI stuff for answers and closure. Instead I am faced with hundreds of more questions. This new paradigm about so called MS is just in the beginning stages and we are the guinea pigs. There are no definitive answers-YET. I will be surprised if it happens in my lifetime. Most IR's are just looking at the central nervous system veins and I know it's much bigger than that. There isn't enough sharing of information between the clinics that are doing the treatments and studies. Knowledge can be attained through trial and error and by covering up errors we will not learn from others mistakes, unfortunately. 

I now, no longer believe in MS. I know I have venous issues throughout my body and not some auto immune disorder. I still dont have all the puzzle pieces but I certainly am further ahead then when I was blithely trusting my neurologist. 

http://www.iamsickofms.blogspot.com/