This Is MS Multiple Sclerosis Community: Knowledge & Support

[ksue1214]

I'm sorry if this has been discussed somewhere before. I searched insurance and came up with all kinds of posts that didn't directly answer this, so thought I would just ask it.

I have not been diagnosed with MS, but had a couple of doctors mention that all my symptoms sound like MS. I saw that CCSVI can produce "jugular dysautonomia", which almost all of the areas of dysautonomia are areas I have issues with. So, if I have this "dysautonomia" disorder, does insurance pay to have the veins opened if testing shows an issue with them?

[Cece]

It depends on your insurance provider. Yes, insurance has paid for angioplasty for central venous stenoses for many people. But there have been some denials too. If you find an IR with CCSVI experience, which is important because there is a learning curve to the procedure, then their office would also have experience with billing for CCSVI procedures and can take care of getting it preapproved.

The 'jugular dysautonomia' idea is very interesting. I don't know if our CCSVI blockages are leading to dilatation that compresses the vagus nerve, as has been a suggested cause of jugular dysautonomia, or if the slowed outflow is leading to impaired circulation of cerebrospinal fluid, impaired glucose delivery to the brain, impaired clearing away of toxins, hypoxia, etc, and all of that leads to the dysautonomia. Some of my best improvements were autonomic nervous system improvements. I would think it's well worth pursuing especially with insurance coverage.

[ksue1214]

Thank you so much for your response! I hope you can answer, what is the best way to find a doctor who would know how to do this under insurance? I have access to the Houston medical system, but I cannot find anything there (googling) except for one doctor that did a CCSVI study in 2010. I can't find any concrete info for any doctor that specifically addresses this. Any ideas?

Odd you should mention glucose to the brain. I have a many year history of hypoglycemia, but in the last year or so, I get the symptoms of hypoglycemia, but when I check it, it is in the low-normal range. It seems like my brain "thinks" it has low glucose, but the body is not. I could almost understand that the glucose is not being delivered in a "timely" pulse as the rest of the body. Ultimately, the brain is the one that senses glucose needs and causes the body to panic if it is low, so maybe that is why the unneeded symptoms.

[Cece]

ok this is not a recommendation because I don't know this group but this came up on a google search:
http://www.houstonvir.com/
Opening in Nov 2012. Dr. Doe trained under Dr. Siskin who is well regarded in the CCSVI community. No mention of insurance though. Maybe start there?

Yeah, I think the transit time of flow through the brain can be slowed due to extracranial outflow obstructions, and this can reduce the availability of glucose, and also that the capillaries' endothelium across which the glucose must be transported into the brain can be affected by the conditions caused by the outflow obstructions and this can reduce the transfer of glucose to the brain. But this is hypothetical.

http://www.vascularaccesscenters.com/Pu ... uston.aspx
That's Dr. McGuckin's page. He has a center in Houston but may have stopped offering ccsvi treatment there.

[ksue1214]

Thank you so much for the link! I think I'll find out soon if insurance can cover a visit.

[1eye]

...capillaries' endothelium across which the glucose must be transported into the brain can be affected by the conditions caused by the outflow obstructions and this can reduce the transfer of glucose to the brain. But this is hypothetical.

I don't think it's hypothetical when Dr. Zivadinov found in CCSVI patients a shortage of capillaries altogether. They might have died of glucose starvation, or low oxygen, or both. They're definitely gone. I think this may be one of the reasons MN-166 has an effect, reducing axonal loss. It is used for cerebra-vascular treatment, possibly resulting in protection against this loss. Having seen the abundance of holes in my head, that is one reason I am considering re-treatment for CCSVI. I also benefited in the area of autonomous function, although I would have liked to see some return of my breath and singing voice, and my heart did not noticeably improve. Hope my stents stay patent...

[Cece]

I don't think it's hypothetical when Dr. Zivadinov found in CCSVI patients a shortage of capillaries altogether. They might have died of glucose starvation, or low oxygen, or both. They're definitely gone.

really good point, 1eye

[ksue1214]

Found out it is not covered by insurance. I saw you (CeCe) mentioned in another post about Dr. Arati(?)'s story in the NYT Magazine. That is what made me try and track down someone in my area that has experience with CCSVI. I have been diagnosed with dysautonomia, and the thought of having a simple procedure that could possibly[i] get rid of all or most of the symptoms is just awesome. But, I have no extra money to pay for the procedure outright, so would love to find it done with insurance or a clinical trial in the South somewhere.[/i]