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Any of this may be subject to suggestions specific to EDS/POTS that I don’t understand yet, maybe Dr Diana can weigh in on this overlap. always start with the least invasive approach, which might be the medications she suggests.
I am coming at this from an MS perspective, and have been treated 4 times w/ stents. I started early with the first group treated at Stanford in 2009, and now there is better understanding, so it takes fewer treatments now, depending on your tendancy to re-stenose. Also, they try to steer clear of stents now if possible.
Here is the info published by CCSVI Alliance on diagnostics
http://www.ccsvi.org/index.php/the-basics/diagnostic-approaches
They have lots of CCSVI info, and also check for interviews w/ the experts at the Feb 2012 conference,
http://isnvd.org And more education at http://thinkccsvi.comThe non-invasive doppler is the best way to start, $500-900. Best place for this is http://ccsvi.azdoppler.com They are trained in the Zamboni protocol. They also travel to other cities too. This can see jugulars, renals, iliac, cerebral veins, but not azygos.
If you get a hit via doppler, I would just go for the venogram, because then they fix it if they find anything. The Haacke MRI is nice to have, but more expensive. Work with the provider on insurance coverage, let them contact your insurer for pre-authorization etc.
For the venogram, stick with an interventional radiologist clinic who is part of an IRB approved trial/registry, like the Hubbard ccsvi registry, they have a map http://www.hubbardfoundation.org/CCSVI_locations.html
An IRB approved trial offers better patient protection, and benefits future patients because your results are tracked and compiled into a study that will be published.
Last thing, an interventional radiologist is not trained to treat the deep cerebral veins, that is reserved for an endovascular neurosurgeon, and so far we don’t have any treating CCSVI. Keep your results if this is the case, get the veins treated you can, and we’ll have to wait on the cerebral veins for now.
I’m not a ccsvi expert, but I’ve had the treatment 4 times, so I know where you can get it done. It will probably involve travel, if you want to go to one of the doctors with experience. If you must go with a local interventional radiologist, look for one who has specialized in treating diabetics, specifically central vein stenosis, diabetics also get stenosis in places like the jugulars.
If you want to get a Zamboni style doppler before going in for a procedure, you can check with http://ccsvi.azdoppler.com/ and see if they are travelling to a city near you, or go to AZ.
Lastly, if you can travel, you could go to the Hubbard Foundation in San Diego, and there you can get very good CCSVI MRI. The have several associated IRs. Dr Haacke also has an MRI facility in Las Vegas, and works with IRs.
My last 2 treatments were with Dr McGuckin, he has done 500 procedures now, and has extensive experience treating diabetics. He is quite the master at treating veins, has very good results. His CCSVI program specialist has an educational blog, http://thinkccsvi.com with a map of clinics around the country he travels to, and tons of info on CCSVI. You can talk to the intake nurse. Get their instructions first on referrals if needed, and they will handle the insurance part.
Dr Diana,
What do you think about the information presented at ISNVD 2012 Patient Day on dental therapy, Dental health and vascular healing (David Williams, CANADA). Would this be helpful when the jaw muscles are being tightened by the cranial nerves?dawnrulost,
Good job at holding your own! If you can’t find a reasonable doctor, I could PM you the list of low dose naltrexone doctors in your State. You would have to call and confirm that they understand your condition and have the expertise to treat you, but at least you could be reasonably assured that they are capable of thinking outside the box, and are used to patients that have had the run around with doctors who don’t respect them.
