Friday, January 22, 2010

Thoughts on CCSVI and Dr. Paolo Zamboni's Research

I have been reading articles and posts all over the net about Dr. Zamboni's research and Chronic Cerebrospinal Venous Insufficiency. One article by Erika Milvy states, "Dr. Zamboni found that, in over 90 percent of people with Multiple Sclerosis, the veins draining blood from the brain were constricted and this led to a buildup of iron in the brain that, he theorized, causes the neurological symptoms of MS." Dr. Zamboni seems to have been driven to this conclusion by his desire to help his wife Elena Zamboni. Dr. Zamboni performed a surgical procedure on his wife to correct this issue and she was one of his first success stories.

After reading these articles I have tried to stay up on the research being done by different universities across the US and Canada. In February more information is supposed to be released and until then we will wait with anticipation. For the past 14 years I have watched as "miracle" cures have hit the media for Multiple Sclerosis, and I have tried to hold on to what we have learned through our own experiences. One of those "miracle" cures was a drug that my wife was set to take in 1990. Fortunately she chose not to take it because it caused major organ failure in the majority of patients that tried it. We have tried to look at this new finding through the lens of these experiences but feel very excited about the possiblities.

After reading one night I asked my wife how she thought life would change if she didn't have to deal with MS everyday. What would change? We sat and dreamed about no fatigue, no worries about over working her body, no worries about going numb or losing eyesight, no more missing events and activities that we have to miss now, and so many other things that we have made choices about that specifically have to do with her MS. It is the first time in our marriage that I can say that we really wondered what it would be like to have true health together, and actually feel there may be a way for that to happen.

I don't know how successful the trials will be, but I do have hope that it may be the beginning of the end. I know that we have personally tested my wife for iron overload and have been baffled by some of the things that have worked and not worked with the treatments we have chosen. I remember her sitting in a magnetic field chair when she was being treated by our naturopath after going numb from the chest down, and she felt great after the treatment. She tried to use the same treatment a year later and it made her feel ill. We had no idea why it made her feel great one time and made her feel awful the next. We still have no solid answer to why, but iron content was one of the issues we were looking at after the treatment. I will share more thoughts later, but for now I wanted to at least acknowledge that we are watching this play out with anticipation and excitement. Our hope is that this research will truly change the way MS is treated.

9 comments:

Roshni said...

This is not related to the current post but I just found your blog and have read a lot of it. I am a MS caretaker too, though not of a spouse.
I'm puzzled about why your wife doesn't go back to the Swank diet. Won't the inconvenience of cooking be more than offset by the benefit of relative health?

Cory said...

Hi Roshni, thanks for the comment. Yes, the Swank diet wouldn't cause as much inconvenience as the benefits of the diet. My wife has tried off and on to get back on the diet but she always seems to have issues staying on it. She continues to use some of the rules in her daily eating, and we are working toward her being fully on the diet again. As with anything, the "why" has to be stronger than the "how", and right now she doesn't feel the pressure to have to do it. We will continue to focus on diet and how important it is to the MS puzzle.

Mary said...

Wow- I just found your blog while I was researching muscle pain for MS. Your a great husband. I tell my boyfriend all the time that I truly believe, even as much pain as I'm in, that it's harder on the caregiver. Sometimes it's nice to hear that you're doing a good job. Keep it up, I'm sure your wife appreciates it. I know I wouldn't be anywhere without my boyfriend. I hope your wife is doing good!

Roshni said...

Harder on the caregiver, especially if the patient is a child. I worry so much about growing old or falling ill myself. I hope the future holds a cure and also a supportive spouse like you.

Josie said...

Hi Cory. I knew that I had read about CCSVI on your blog so I wanted to come back to ask you if you had any new thoughts. It hasn't really been in the news in the US but it seems that it is quite the conversation in Canada. Do you and your wife have any new thoughts on the procedures offered and the condition itself. That's all. ;0)

derekdadey said...

I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical tour package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid-October and I am so very thankful to everyone at CCSVI Clinic for making this happen!

Anonymous said...

Hi---I am not an MS patient but I am a chronic Lyme disease patient. (Lyme disease has been implicated in MS in numerous cases)
I just wanted to share some info that my doc in Atlanta gave me today. There is now a clinic in Atlanta offering the CCSVI procedure-----CCSVIATLANTA. Their phone number is 404-941-2000 and email is info@CCSVI-atlanta.org Website is www.CCSVI-Atlanta.org I believe. The testing lasts around two hours and costs around $550.

This CCSVI procedure is being used with great success on chronic Lyme/TBD patients, especially those with neurological involvement. However, in our case, the disease must be somewhat under control before the procedure is done, to avoid a major release of the
organisms back into the circulation. you CAN however get the evaluation done so that you know if blocked veins are part of the problem. I will be getting the evaluation as soon as possible, as I have a long history of migraines, tinnitus, and dizziness----all involving the right side.
Hope this info helps someone in the MS community!
Linda L.

Beverly Cody said...

Upright MRI had a Major MS Breakthrough http://www.fonar.com/news/100511.htm

Anonymous said...

There has been much more research on CCSVI and many patients have gotten relief from MS symptoms that they previously had. I really hope MS patients take advantage of this opportunity. There are many clinics around the world that offer the treatment and I just found about a new close to where i live in Dayton, OH. Its just amazing.