Finding A CCSVI Trained IR Closest To You/Me

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Finding A CCSVI Trained IR Closest To You/Me

Postby Patient105 » Wed Dec 12, 2012 4:49 pm

Hello to all on the TIMS forums. This is my first post and I'm sure that it has been discussed before either in a related topic or with a topic designated for it. I tried my best to utilize the search bar within the CCSVI forums and was given impertinent topics and messages so I figured I'd try to post my own topic.

If it gets taken down as a repost then I apologize and hope a moderator will at least point me in the right direction within the CCSVI forum.

To try and summarize, I'm a Lyme disease patient and for the past four years I had a increasing nature of symptoms that were neurological in nature. It got to the point where my cognitive function was so bad I felt like what is described as "dementia-like" but a neuropsychiatric evaluation said that I actually was average to above average in most areas. I'm a 27 year old male who's had to put his college and career on hold because of this, and now I'm unemployed and waiting with a lawyer group to hear about disability compensation.

Well I'm 27 and my neurologist at the time suggested I might have MS and I began researching on my own since all the EEGs, MRIs, and Spinal Tap procedures had turned up very little other than a developmentally narrowed spinal canal with some disc height loss and dessication. A neurological finding but nothing that suggests or fits within MS. I found some information on CCSVI and went to CCSVI Atlanta for a screening and I was found to be within two of the five parameters for CCSVI.

Subsequently, not getting answers I went to the Mayo clinic, after deferring the CCSVI treatment since I was not diagnosed with it and had heard about Lyme but hadn't done anything to pursue finding out whether I had it. After a completely feckless evaluation in Jacksonville, I came home and immediately went to work looking for more information on Lyme disease and had implored my neurologist to have an Igenex test done for Lyme disease. It came back indeterminate which as I've found out now is in most cases a positive. I now have physicial visual evidence from seeing my blood under a phase contrast microscope that I have Lyme disease with a co-infection.

WITH THAT SAID (much apologies for the back story), I've seen three doctors and the last one was very expensive and treated me for Lyme with a heavy, multi-antibiotic/anti-microbial regimen for ten months and I've yet to get but just a few days that were light breaths of fresh air and then back to normal negative symptoms. So now, he's looked at the CCSVI issue, along with other patients, many of which who came to him after being diagnosed with MS, and has decided to have the ultrasound test done, and if I still fit the parameters to go ahead with CCSVI treatment.

Now me and my father have spent over $50,000 throughout the past two years for my Lyme treatment to turn up nary a big sustained amount of good health and this last possibility is starting to look like the "last chance, no breaks" portion of my Lyme treatment, in regards to this doctor. His idea is to do an oral antibiotic regimen then have the procedure done, and as soon as it has concluded immediately inundate my body with heavy, multi-spectrum antibiotics to which he says he's had varied success.

After looking up doctors, and knowing how my insurance coverage resets in the new year when I plan on getting it, does anyone have any experience in finding various IRs who are trained in this? I've done a modest to moderate amount of research on CCSVI, minus testimonials and I don't know if a local IR would be able to do the procedure or not. If so, it would save us $5,000 not to mention the travel and lodging costs. I'm in Virginia Beach, VA and my many searches with terms, etc. has proven to bring up no one near me.

So, my further questions would it be wise to have a non-CCSVI trained IR do this procedure (IF they would even consider to do it) or are the most well known in the United States really the only options for me? (most of whom I'm sure many of you have already either dealt with or had your CCSVI procedure done by).

I apologize for the length and I'm greatly appreciative of any thoughts on my situation, and to any moderators, I apologize if this is either a repost or an "off limits" topic. Thank you for your time.
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Re: Finding A CCSVI Trained IR Closest To You/Me

Postby NHE » Wed Dec 12, 2012 7:26 pm

Patient105 wrote:So, my further questions would it be wise to have a non-CCSVI trained IR do this procedure (IF they would even consider to do it) or are the most well known in the United States really the only options for me? (most of whom I'm sure many of you have already either dealt with or had your CCSVI procedure done by).


In my opinion, no, it would not be wise. You want someone with experience. The doctors that treat CCSVI state that it takes approximately 50 cases to get comfortable with the procedure. You don't want to be patient #1. The costs of a mishap, e.g., potentially losing a vein, are too high. The balloon needs to be correctly sized for the vein. It has to be big enough to dilate the vein, but not so big that it causes excessive injury to the vein. The only way to size the balloon is to measure the cross sectional area of the vein. This is done with intravascular ultra sound (IVUS). There are several doctors now using IVUS. See this thread Gold Standard Tools. Dr. Sclafani in New York would be a good choice.

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Re: Finding A CCSVI Trained IR Closest To You/Me

Postby Cece » Wed Dec 12, 2012 7:56 pm

I second what NHE said. But it is sometimes possible to have the treatment done under insurance and that might mean looking for local options. The closest CCSVI specializing IR to Virginia might be Dr. McGuckin in North Carolina. Not sure if that minimizes any of the travel expenses. http://www.vascularaccesscenters.com/St ... tions.aspx

Back in 2010, we heard from a number of patients who were the first to have CCSVI venoplasty at their IRs. In general it did seem like there was greater risk of complications from IRs without experience in CCSVI. 'Learning curve' is the phrase that gets mentioned but it seems to be true. A newbie IR is more likely to miss stenoses or underdilate leading to the veins closing up again or overdilate leading to possible vein injury.

You might check with your IR, once you find one, to make sure he is ok with your lyme doctor's plans to treat with the antibiotics immediately after the procedure. There could be an effect of the antibiotics on vein healing or on clotting or drug interaction with the anticoagulant. We once had a Lyme patient who said he went into a major Herxheimer reaction immediately after the CCSVI venoplasty, if that were to happen, would the onslaught of antibiotics make it worse?

Yes, there are people here who sent off letters and made contact with 100+ IRs trying to find one who would treat, back in the early days. If you are set on getting a local IR, you just need to make contact and see if they're interested.

Oh and if you went to CCSVI Atlanta for diagnosis, then is Atlanta an option for treatment? There's Dr. Sullivan in Atlanta.
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