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Rhonda's Patient Perspective - Part II
Rhonda's Companion Perspective: Dan


Rhonda's Patient Perspective - Part II

I was very sick and disabled by my MS symptoms in 2009. I had been diagnosed with MS six years earlier and my situation was slowly growing worse with each passing day. When I started reading about CCSVI I was excited by the research Dr. Zamboni had done.  I thought this new way of thinking about MS as a vascular disorder made more sense than the current, unproven, autoimmune theory. The more I researched, read, and discussed CCSVI, the more it made sense. That is why I was one of the first people in the U.S. to be treated for CCSVI. I went to Stanford in 2009 and was treated by the wonderful Dr. Dake. I had great success in improving my symptoms from this initial treatment, but about a year later some of my symptoms started to return.

I have been treated for CCSVI two additional times since 2009. I am still benefitting from the healing that has taken place since restoring proper blood flow to my central nervous system. I decided to undergo multiple procedures because after the first two treatments I recognized my symptoms beginning to return and knew I needed to be treated again. After all, since I was initially treated so early in the development of these procedures, I was very possibly undertreated at first.

I found a doctor treating CCSVI close to my home and, after discussing it with Dr. Dake, we agreed that seeing him was the best option for me. Traveling to Stanford was quite a distance, and having a doctor closer to me would be beneficial in case I needed ongoing care. This intervention radiologist was Dr. McGuckin. I found him to be just as passionate about CCSVI as Dr. Dake, and just as caring with his patients.

The second treatment revealed several new blockages. This treatment had also given me confirmation that my initial treatment had worked. Both jugular veins were wide open and the stents placed into them were patent and working beautifully. My doctor found my azygous vein had a tight web and was 70% blocked. This was not discovered the first time.  I also had severe blockages in two other veins, the left renal vein and the left iliac vein, or Nutcracker Syndrome and May-Thurner Syndrome.  This was in early 2011, when there was a lot of controversy surrounding the use of stents in the veins. Therefore, my doctor only performed angioplasty on the blockages.

Much like the first time, I had a few weeks of recovery ahead of me. I had pain, especially in my chest which was the area treated for the azygous web blockage. I was tired and gave myself permission to rest and heal. I felt better once again after treatment. But, unfortunately this time it did not last as long. Those awful symptoms began to rear their ugly heads again within six months.

Now, this is where I have seen many people give up, mostly, because of the financial burdens of treating CCSVI, or because they believe the treatment isn’t working for them.  It is very hard on someone with MS to put themselves through medical procedures. It is impossible for people with MS whose insurance will not cover this procedure to personally spend thousands and thousands of dollars with no guarantee of the results. I was lucky to find a physican who would treat CCSVI close to home, and I was lucky to have my insurance cover much of the costs. I had no reservations about having this treatment again. I knew it would work.

I returned to have my veins examined by Dr. McGuckin in 2012. This time the blockages which had been previously treated with angioplasty had all restenosed to varying degrees. I underwent angioplasty again and was also given two more stents to treat the Nutcracker and May Thurner Syndromes. This treatment was a tipping point for me. After I recovered from the procedure, I felt much stronger than I did even after the first two procedures. I focused more on taking supplements to support my health and healing. I have enjoyed the added energy and symptom improvement.

I will probably never fully heal the damage done by MS. But treating CCSVI has changed the course of my disease and has reduced most of my worst symptoms. My quality of life is so much better, and I don’t live in fear of a relapse. I have some control for the first time in the last 9 years since MS changed my life.

I have been very lucky. I found two amazing doctors who were compassionate and took on the cause of discovering the connection between CCSVI and MS. I enjoyed success with my treatments. I had insurance to cover the majority of the costs. I have found a community of people with MS who are not only supportive, but are kind and generous.

I hope those who have been treated, with or without success, do not give up. At this point in time more than one procedure is necessary in most cases. This is a hard disease and it takes courage to fight it. There wasn’t much we could do to combat the awful symptoms of MS prior to this discovery.  For many people like me, CCSVI is the only thing that can reverse symptoms and possibly halt the disease activity. I will continue to fight, and I hope the research into CCSVI moves forward in such a way that people with MS have access to this care.


Rhonda's Companion Perspective: Dan

Nine years have passed since my wife, Rhonda, was diagnosed with MS, and we are still standing. Actually, we are doing much better than standing. My wife has a full, functional, and fulfilling life due in no small part to the treatments she had for CCSVI. I can tell you, with no hesitation, that these treatments were a game changer. Before her treatments her MS was progressing and beginning to exact a major toll. Walking was becoming an issue at times, and fatigue, cognitive issues, and pain were a daily battle. There is no doubt in my mind that the disease was progressing. When we learned about the potential benefits of treating CCSVI we were eager to give it a try. After all, what did we have to lose?

The initial results were truly an eye opener. Almost immediately my wife showed signs of improvement. The fatigue slowly improved. The cognitive “fog” began to clear. Most of her symptoms dramatically improved. It was like someone flicked a switch and everything changed. To be clear, there were, and I suspect there will always be, some issues. But, the amount of improvement was nothing less than miraculous. As time passed, many symptoms began to return, and further treatment became necessary. We have had three treatments to date, and each treatment has produced major improvement. We know that this is not a cure, and I am sure that my wife will likely need further treatment down the road.

I believe that treatment of CCSVI, along with further testing, can potentially lead to a better understanding and hopefully one day, a cure for this disease. Having seen such dramatic improvements in my wife’s condition, I find it hard to believe that anyone can argue that there is not a direct correlation between CCSVI and MS. 


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