Treatment for non-MS CCSVI?

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

Treatment for non-MS CCSVI?

Postby CindyCB » Tue Mar 29, 2011 10:16 am

Could anyone point me to a clinic that treats patients who have CCSVI, are symptomatic, but do not have an MS diagnosis?

I've been searching for a while and drawing blanks.

Many thanks,
CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Cece » Tue Mar 29, 2011 11:19 am

American Access Care in Brooklyn with Dr. Sclafani.
Also Dr. Sinan in Egypt...he has treated some ALS patients, anyway.
Dr. Hubbard's group in CA.

If you don't mind telling, which ones have required a MS diagnosis?
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Postby CindyCB » Tue Mar 29, 2011 11:37 am

Hi Cece,
Thank you for the reply and answers.

I live in the UK, so far have tried Essential Health Clinic, in Scotland (they were the ones who scanned me) and The Belgian Clinic, Private Scan.

Both are not currently treating non-MS patients with CCSVI - which is quite disappointing as they obviously believe CCSVI causes MS, so I guess I have to wait until I actually develop it before I can be treated. Madness.

I've also tried to make contact with an interventional radiologist in the UK who was reported to be carrying out the procedure but he's not accepting new patients at this time.

I've contacted other clinics in Europe but have not heard back as yet.

I've been turned down by my local hospital too as they say my neurological symptoms are nothing to do with both my IJVs being stenosed, with faulty valves.

Problem is I have had a very hard time getting anyone (neurologists) to accept my symptoms as my MRIs are clean (MRVs however are a different story but deemed to be a 'normal variation').

I will try contacting the doctors you have suggested. Thanks again.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Cece » Tue Mar 29, 2011 12:27 pm

Could evoked potentials tests or a spinal tap be helpful in getting an MS diagnosis? It's a shame, I've heard good things about Dr. Reid, and that would be close-by.

If you are in the very early stages and get CCSVI treatment now, maybe you'll never have anything but a clean MRI. :)
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Postby CindyCB » Tue Mar 29, 2011 12:47 pm

Well that's my worry - the longer it's left, the more chance I have of developing MS. The last neurologist basically wanted to 'wait and see' for it to develop in me.

Have had the evoked potentials and lumbar puncture, all clean. This was almost a year ago now though, along with my last brains scans, so who knows.

Yeah, I was really hoping I would be able to get this sorted out closer to home but seems I am in the awkward position of falling through the cracks.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby IHateMS » Tue Mar 29, 2011 1:24 pm

my mris r clear. my ver was not. i have an ms dx. i am in a chair. in usa
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Postby fogdweller » Tue Mar 29, 2011 2:33 pm

CindyCB wrote:Well that's my worry - the longer it's left, the more chance I have of developing MS. The last neurologist basically wanted to 'wait and see' for it to develop in me.

Have had the evoked potentials and lumbar puncture, all clean. This was almost a year ago now though, along with my last brains scans, so who knows.

CindyCB


The definition of CCSVI is not real clear. Do you have reflux? If you just do not quite have as good a venous drainage as most people, maybe you are not at risk for any chronic problems at all. Since you are symptom free and the treatment of CCSVI is getting better and more precise all the time (the right size balloon, to stent or not to stent, the anti-thrombotic regime, the use of IVUS, etc.) it would seem to me to be advisable to wait. Most MS patients don't immediatel go dramatically downhill so you would probably have time after Dx before any permanent damage. What's the rush?
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Postby CindyCB » Tue Mar 29, 2011 2:55 pm

Hi Fogdweller,

Thanks for the reply.

Actually, the problem is I am very symptomatic of something neurological and have been for about 3 years now.

Problem is I've had LOTS of testing so far and no answers (except hypothyroidism, just to add to my problems).

I am currently housebound and pretty much disabled by my symptoms but I do appreciate what you're saying about new developments - I can see by watching the forums and news reports that things are changing literally week on week.

It's come to a point where I cannot live a normal life and so far the only thing I have been able to find is CCSVI.

I have a certain amount of reflux back into the IJVs but not all the way back up to the brain (presumably why I don't have any lesions?) but both the flow and volume of blood down my IJVs are markedly reduced on both sides.

I think this probably means my symptoms are coming from this (fatigue, dizziness and sensory deficit to name but a few) as it's the only thing that makes any sense to me.

Thank you for your thoughts though.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Cece » Tue Mar 29, 2011 3:33 pm

CindyCB, you are our "healthy" control!! (Would love to hear from the actual "healthy" controls found to have CCSVI.) I shall take your health issues into evidence that healthy controls with CCSVI but no MS diagnosis are anything but healthy.

I am less familiar with the European docs, does anyone know of doctors in Europe that will perform the CCSVI venoplasty on patients without an MS diagnosis?
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Postby EJC » Tue Mar 29, 2011 3:46 pm

Cindy,

I'm reasonably sure the EHC in Glasgow stopped scanning non MS diagnosed people as a result of a Journalist going for a scan then producing a non to flattering documentary on the subject.

It's a case of self preservation probably.
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Postby CindyCB » Tue Mar 29, 2011 4:00 pm

Yes, I wonder how healthy the healthy subjects actually are.

That programme really didn't help things in this country. I was unfortunate enough to have asked the vascular doctor in the programme for help (before I saw it of course).

He told me my scan results were like those of the reporters. I watched the programme and saw that while she has valve malformations, there wasntvany stenosis, like mine.

I do appreciate why EHC wouldn't wantvto treat me as things stand. Besides, they have a priority to their MS patients and they don't have any evidence e as yet about the procedure helping non-MS patients.

Still frustrating though of course!
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby DrCumming » Tue Mar 29, 2011 5:27 pm

Cindy,

Sorry to hear about your problems.

As I am sure you know, the diagnosis of MS can be difficult. I have met many patients that once diagnosed with MS realize that they have in fact been having symptoms for many years prior.

We have much to learn about CCSVI and the diseases it is associated with. CCSVI seems to be strongly associated with MS and probably plays a role in the development of MS. (This is still controversial and the final word is not out).

So, if we assume that CCSVI plays a role in the development of MS, then CCSVI should be present prior to the diagnosis of MS. This might be where you are at. Or, you may have another neurological process that is caused by CCSVI or your symptoms may have nothing to do with CCSVI.

Its a difficult spot to be in and there are no good or easy answers. Only you can decide what is going to the right way to deal with your CCSVI diagnosis.

I will be treating a patient next month with CCSVI and a diagnosis of clinically isolated syndrome. I do not know if this is a good idea or not. We just do not have enough information.

Take care
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Postby Cece » Tue Mar 29, 2011 7:04 pm

DrCumming wrote:I will be treating a patient next month with CCSVI and a diagnosis of clinically isolated syndrome. I do not know if this is a good idea or not. We just do not have enough information.

I used to have a diagnosis of CIS. It developed into MS. It seems logical that I'd have been better off getting treated for CCSVI back when I only had CIS than later as it worsened. So, I vote for "good idea." :)
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Postby CindyCB » Wed Mar 30, 2011 12:47 am

Dr Cumming,
Thank you for the reply - I completely agree with all you have said there.

I had an episode very much like a stroke initially but no mass on CT etc. and symptoms resolved for a little while. Then started coming back, subtly at first, getting worse over time.

When I first started getting symptomatic everyone initally thought MS. I've seen 3 neurologists and 1 neurosurgeon (long story) and all think MS until they get clean tests coming back.

The last neurologist said it was going to be a case of watch and wait. I do realise that symptoms can go on for years before MS is confirmed and that the criteria for it can miss cases.

I've literally had all sorts checked, vitamins, minerals, hormones, allergies, infections, diseases, fungal, bacterial and not coming up with anything apart from hypothyroidism (treated well). There is still some question over Lyme disease for me but I am not convinced.

I do wonder if perhaps the hypothyroidism in some ways has stopped the problem becoming MS - lower BP and slower pulse, lower iron etc.

The nature of my sensory problems pretty much rules out anything but a problem with the brain as I have pain, numbness and altered sensations head to toe on the right side of my body.

While I have some problems on my left, it's most pronounced on the right.

I think this is a route I have to follow as it's not getting any better, in fact it's slowly getting worse and I can't find either a medication that helps or a doctor that is willing to trial medications with me because I can't prove I have a problem to most of the medical world.

Cece - That's very interesting! While treating CCSVI is very much about limiting symptoms and preventing further problems I do think there's cases (perhaps like mine) when it can be used as a prevention to developing MS.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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