Roadblocks to early diagnosis & treatment in the US

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

Roadblocks to early diagnosis & treatment in the US

Postby Johnnymac » Thu Dec 31, 2009 11:39 am

I just got off the phone with a nurse in the Neuroradiology field who I am working with to try and get an appointment for my wife.

Got some good information and insight that anyone else trying to push for diagnosis and treatment may be able to use…..

First, she said the Stark laws prevent radiologists from performing diagnostic procedures on their own with no existing evidence/diagnosis. I’m sure there are loopholes in this as there are with most laws, but part of any hesitation you may get from contacting radiology professionals directly may very much be due to these laws (which are much tougher on Radiologists than any other profession). Now, she said if we had already had a diagnosis of venous stenosis then there would be no problem getting a consult and appointment with additional diagnostics tests as needed. Kind of a catch 22.

So, we must get our general practitioner to order the MRV, and if stenosis shows up on the MRV then we can get an appointment with an Interventional Radiologist and take this to the next level.
It was recommended to have the MRV done at an actual hospital, not a standalone imaging center as ‘most’ hospitals will have much better equipment.

Secondly, she stated that the FDA has approved the use of stents in the head area in only a few conditions, but that there are no FDA regulations on angioplasty. This means the longest wait will most likely be on the approval of stents; however, patients who are candidates for angioplasty will have little in their way in terms of the FDA.

Insurance is a whole different problem. She said that just because the FDA approves a procedure for a certain condition (lets say stents in MS patients), that doesn’t mean that insurance will pay for it. To keep your best chance at insurance coverage you’ll need to treat this venous stenosis as a completely separate condition from your MS. If getting angio/stents improve your MS, awesome. But you need to approach it carefully if you are looking for early diagnosis and treatment.

We have an appointment with our general practitioner next week, lets pray she is open to ordering and MRV.
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Postby MaggieMae » Thu Dec 31, 2009 11:59 am

Don't forget. Not all hospitals (let alone a standalone clinic) can do the MRV of the neck properly or at all. We already went through this with my husband and the hospital could not do the MRV of the neck, only of the brain.
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Re: Roadblocks to early diagnosis & treatment in the US

Postby cheerleader » Thu Dec 31, 2009 12:07 pm

Johnnymac wrote: To keep your best chance at insurance coverage you’ll need to treat this venous stenosis as a completely separate condition from your MS.

Johnny...I cannot stress how important this is. Venous occlusion beyond 50% is covered by most insurance, because it is a recognized fact that impaired venous drainage damages the organ the veins should drain. This is why I keep saying to take it to the vascular docs, interventional radiologists and neuroradiologists. They understand this fact.
Good luck getting the MRV, dear heart. Hoping for a better 2010 for you and your wife,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby ikulo » Thu Dec 31, 2009 4:10 pm

If one were to experience symptoms of internal jugular vein occlusions, what would such symptoms feel like (aside from typical MS symptoms)? :wink:
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Possible Reasons for MRV

Postby MarkW » Fri Jan 01, 2010 5:02 am

I am not allowed to invent symptoms but for example
1-Repeated headaches maybe localised to an area of head or neck
2-Stiffness/reduced movement to muscles of neck or head
3-1+2above on waking which reduce during day
4-Effect of ibuprofen (single dose) on symptoms (reduce then return)
5-Knocked head (back or side) in a fall
Could be reasons for asking for an MRV.
This only applies if you are a private (paying) patient in the UK and not for NHS referrals.

Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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