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CCSVI (Chronic Cerebrospinal Venous Insufficiency)

  • By Gwen

    Hi, this is my first post. I just wanted to share my story, or rather my husband’s story. My husband suffered with migraines from an early age…probably since 10 years of age. They were very debilitating and he’d often have one or two a week. He somehow worked through them, but struggled for many years. In 2009 he was diagnosed with MS. That year we heard about a new treatment for MS called CCSVI, but it was considered experimental for MS patients so we could not have it done here in Canada (however it has been used for years and is not considered experimental…only if you have MS). We went to a clinic in Poland in 2010. On the day of surgery he had to fast and ended up being the last person out of 8 to have the procedure. Finally he went in to the operating room around 6pm, with a raging migraine. He was in complete agony with the hospital lights! He was fully awake for the procedure. During this procedure they open up any blocked veins, especially looking at the jugular/azygous veins. He had severe blockage in his left jugular vein. When they did the angioplasty on that vein, his 8 hour migraine disappeared…like “poof”, gone! It is now 4 years later and he rarely get a headache, and never a migraine. I just wanted to share this with you because if you have MS in our country they will not allow you to have the procedure, but if you don’t have MS they will do the procedure – I’m sure this is the case around the world. My question is…how many migraine sufferers seek out a vascular specialist to check for blocked veins? My husband’s vein was so blocked that the blood couldn’t drain properly from the brain so was shot back up creating lesions on his brain (from iron deposits), which lead to the MS diagnosis. The ancillary veins that developed were trying to pump the blood out of the brain but couldn’t, resulting in intense migraines. Doctors just keep prescribing pain medication but you may have a chance at discovering why it’s happening. I don’t know if this has been mentioned on the forum but just wanted to share my husband’s story.

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  • By Nancy Harris Bonk Moderator

    Hi Gwen,

    Thank you for that information, I’m happy to hear your husband benefited from that procedure. Migraine-like headaches are often found in people with ms. You may want to share this information on our sister site; http://multiplesclerosis.net/.

    I’m not aware of any correlation between CCSVI and migraine nor was I able to find any research. We do know that migraine is a genetic neurological disorder and ms is a central nervous system disorder. Each of us experience these diseases differently and what works for one of us may not work for another.

    I’m glad you shared your story with us, it may help others!
    Nancy

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