An MS Patient's CCSVI Treatment: Jane's story (includes updates though March 20, 2010)

Jane's story:
"As many of you know, there has been recent media coverage of a possible new theory of a causative factor and treatment for MS. Dr. Paolo Zamboni in Italy found a statistically significant number of MS patients had narrowed or blocked neck or chest veins, theoretically leading to CCSVI. Resultant iron leakage from the congested blood into the brain and spinal cord kills the myelin and then the nerve cells. Treatment is angioplasty or stenting to open the affected veins. There was improvement in many treated patients.

Because my disease is rapidly progressing, and because we feel the work done so far is compelling, we are very interested in this. In this country, no one will even consider doing the diagnostics. Correspondence with Dr. Zamboni himself, resulted in "wait for the research". Research studies are slow, swamped, and blinded so you never know your results and only involve diagnosis, not treatment, at this time.

So we went to Buffalo last month and had an exhaustive (ing) vein MRI done. My left jugular is severely stenotic throughout my whole neck; the right is for 3.6 cm. We just got back from our second trip; we consulted a vascular surgeon. As he said "I know nothing about MS. But this is abnormal and I can fix it". It's low risk and relatively cheap.

I go March 19th for angioplasty and/or stent placement for under $5,000 USD. It's done with a local and as an outpatient.

No one yet knows if this will help; it might not. But I have no time and I like to think my little boys still need me."

Jane
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Background to her story:
Jane had the MRV done at Seton Imaging. The MRV was $1,400 USD.

Medical contacts and all referrals were provided by MEDCAN in Toronto and Hamilton-Smith Consultants in Mississauga. This is the first step you would need to take. Calling the Vascular Surgeons or Seton Imaging directly will probably get you nowhere.

She was referred to Vascular Surgeons at the Vascular & Endovascular Center in Buffalo.

I simply love the Buffalo Surgeons quote: "I know nothing about MS. But this is abnormal and I can fix it"

Her CCSVI angioplasty surgery is less than $5,000 USD and is scheduled for March 19 2010 at the Vascular & Endovascular Center.

This is so wonderful for Jane to share this info with us. This is a promising Neuro-free avenue for people in the Greater Toronto Area, or for people who could get to Buffalo to consider. With any medical treatment you consider, please do your own homework. The pricing is much less than Poland, and is an order of magnitude less than treatment in India.

I want to thank Jane for sharing her personal story. She is blazing a trail for so many who are seeking treatment. She is so awesome, and I wish her the best on March 19th. We will update this story, as more good news unfolds.

I believe in Dr. Zamboni. This is real, and nearly everyone tested has a blood flow problem. We are watching history being made and the dark puzzle know as MS is being solved right before our eyes. It's simply the most amazing thing I have ever seen.

Hope you find her story informative and helpful.

WaYnE
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LINKS:

MEDCAN Clinic Toronto:
http://www.medcan.com

Hamilton-Smith Consultants Mississauga:
http://www.mridhs.com

Seton Imaging Buffalo New York:
http://www.setonimaging.com

http://www.facebook.com/pages/amherst-ny/seton-imaging/312634404829

Vascular & Endovascular Center of Western New York:
http://www.vecwny.com

Vascular Surgeons: Dr. Joseph Anain, Sr. / Dr. Paul Anain / Dr. Roger Walcott
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Update March 15 2010:
Jane also used Hamilton-Smith Consultants. They can arrange for your treatments and are networked with Seton Imaging for an MRV and Hamilton-Smith Consultants are networked with Vascular Surgeons.

From their website: "Hamilton-Smith Consultants was formed in 1994 in order to fill a void in the Ontario Health Care Sector. A requisition / referral from a Specialist or Family Physician will initiate arrangements being made for a prompt appointment. Our Diagnostic Imaging Partner facilities are located in Amherst, Kenmore, and Tonawanda NY."

WaYnE

http://www.mridhs.com


Update March 20 2010 - One day after surgery:
"So, I was Liberated Fri. Procedure went well and is not a big deal. If you scroll down to Kerri from Australia, she has a good video; mine was exactly like hers. So under local they cut down to your femoral vein and thread wires through your veins up to your jugulars and balloon them open. It just feels weird but OK. The balloon and the jugular was uncomfortable. Today is the next day and my neck is sore. Last night my chest was sore- my chest hurt but liveable.

Just to you know I've had MS for 21 years. I'm SP-MS now and pretty affected. I'm in a wheelchair, my legs are paralyzed, I can barely transfer and my hands are weak.

When the first vein opened I felt like the lights got brighter. I felt more awake. Can't say I'm running down the road, (wish I could!), but hopefully it stops progressing and I think (but I'm not sure) my hand might be stronger today and my feet might be less painful?

I am really tired today not only from the surgery but from the long drive, the trip away etc etc. Time will tell - who knows?

Doctor Walcott was great - no complaints about anything and no concerns.

Procedure took 1 1/2 hours, and then was in recovery for 2 hours. (Best to pee before you go..;) ). Was able to then get in the car and go home. (nice wait at the border....) If you are disabled, stay at the Courtyard Mariott on Sheridan Drive."

Jane

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