This Is MS Multiple Sclerosis Community: Knowledge & Support

hi,

i'm currently searching for someone who can diagnose ccsvi. i'm in germany and have a referral from my GP to a vascular surgeon to do an US. I can't find someone who is familiar with the "zamboni method". what are your experiences in untrained vascular surgeons/radiologists to diagnose ccsvi or rather problems in the jugular veins?

btw: i'm just searching for a diagnosis. Treatment would be an option in the next few years because my ms is very mild and i'm very young. I only had one relapse (one lesion in the spinal cord/two in the brain (periventricular))

johnny

Hello Johnny21,
Why travel to the USA? The diagnosis and treatment is available in Germany, Poland, Belguim and UK, much closer than USA.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

US means ultrasound in this case. Of course, i'm planning to get the diagnosis in germany. But prof. vogl in frankfurt doesn't work with refferals/NHS so i would have to pay for it.

I think it's hit-or-miss with the untrained surgeons. False negatives being more likely than false positives, so if an untrained IR can find CCSVI, it's probably pretty obviously there, and if he can't, then a second opinion from someone experienced is a good idea. Best of luck Johnny!!

Hello Johnny21.
It did not cross my mind that any state/country health cover would pay for a doppler scan. You will get something that very few people receive, if you do. I suggest you try the German forum for help with this.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

In Frankfurt, there is Dr. Vogl which uses only MRV, but he is in contact at least with two ultrasound doctors. They are Dr. Schmitz-Rixen and Dr. Meyn. I do not know exactly how they are organized, but I think the "entry point" is still Dr. Vogl.

You can search for his email in this forum. Somebody posted it long time ago.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info