CCSVI without MS diagnosis?

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

CCSVI without MS diagnosis?

Postby seabea » Wed Mar 21, 2012 1:47 pm

I do not have MS but I'm hoping someone can help me here. My doctor in Dallas has suggested getting a CT venogram to check for CCSVI. I've been searching for answers almost 15 years. I have done every test, every procedure and taken every medicine they have thrown at me over the years. I am tired of doing so and also having my hopes built up and dashed when I don't meet the latest and greatest diagnosis they come up with for me. Can you have CCSVI without having MS? I've been searching for a complete list of symptoms of CCSVI with no luck. I've spoken with Dr. Arata on the phone and he's convinced I have it and wants me to fly out for him to do the procedure. Here are my symptoms:

-increased spinal pressure
-constant headache/migraines
-muscle tension/pain in back of head, neck and shoulders
-swelling of the left leg, ankle, foot
-urinary/bowel issues
-major brain fog
-cold hands/feet
-constant fatigue
-trouble sleeping due to pressure/pain in my head
-I tend to choke upon swallowing food and pills
-ringing in my ears
-strange "sucking" feeling in my brain right before I fall asleep or just upon awakening
-major personality change over the years/mood swings
-I only sweat under my arms or behind my knees, nowhere else

Does this sound like CCSVI? Should I go ahead with the CT venogram? I have been reading that the so-called "gold standard" testing is a catheter venogram. Should I request that instead? Or should I suck it up and fly out to Dr. Arata for the MRV? I try reading all the posts on this site but they all speak above my understanding (I blame the brain fog!). I have three small children and I've missed so much of them growing up. I'm trying to build up an at home cake business since my husband is disabled and can't work. Therefore, I don't have thousands of dollars to keep throwing at different tests and procedures. Someone help?
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Re: CCSVI without MS diagnosis?

Postby Cece » Wed Mar 21, 2012 3:03 pm

CT venogram is useless. MRV is somewhat useful but expensive. Doppler ultrasound is much cheaper than MRV and at least equal or better. Catheter venogram is done as part of the procedure; since they have the catheter in your veins, they can balloon when they find a stenosis. So, doppler ultrasound is what I'd suggest for diagnosis.

Where are you located? There might be a closer doctor who can do the testing or procedure. A very few doctors use IVUS, which may improve the precision and safety of the procedure.

Here was a list of CCSVI symptoms taken from an upcoming SIR workshop on CCSVI:
CCSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6495.html#p187925

From your list, chronic fatigue is a match, as well as headaches and cogfog. Getting tested will tell you more. I was treated by Dr. Sclafani a year ago and, of the symptoms you list, I've had improvement in neck and back of head pain, urinary issues, brain fog, cold hands and feet, chronic fatigue, trouble sleeping, occasional choking on swallowing, and abnormal sweating. (I've also had improvements in balance, vision, resaturation of colors, breathing, appetite, no more constant low-grade nausea, and minor foot drop. So, y'know, the little things in life like breathing, seeing, sleeping, eating, and thinking!)

And yes, you can have CCSVI without MS.
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Re: CCSVI without MS diagnosis?

Postby seabea » Wed Mar 21, 2012 3:16 pm

Thanks for your response!
I'm in Dallas/Ft. Worth, TX. Is there someone near me? I'll ask for the doppler ultrasound but I'd like to go to someone who is more focused on the CCSVI than who I'm currently seeing. They're a pain specialist.
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Re: CCSVI without MS diagnosis?

Postby Rosegirl » Wed Mar 21, 2012 3:38 pm

You could start by searching on "Baylor CCSVI". They have a site dedicated to CCSVI. There is no indication of the number of patients they have treated, but it is a place to start. Then you can do research to compare them to other locations.
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Re: CCSVI without MS diagnosis?

Postby Cece » Wed Mar 21, 2012 3:44 pm

http://www.debakeydepartmentofsurgery.o ... ent_id=272
But I don't know anything about the techniques used at Baylor, and it can vary quite a bit between different doctors.
Another thing to think about is if you have insurance that might cover the procedure, as mine did.
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Re: CCSVI without MS diagnosis?

Postby seabea » Wed Mar 21, 2012 6:10 pm

He's in Houston but that's fine...much closer than anyone else. I also found Dr. McGuckin at Vascular Access Center in Houston. Has anyone heard of him or Dr. Paul Lin?
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Re: CCSVI without MS diagnosis?

Postby KDGO » Thu Mar 22, 2012 12:17 pm

Cece
I have some reservations about doppler. I put the cart before the horse and went for the venography first to find MayThurners, azygous, JVs in 2010.
Before the procedure I decided no stents...which I ended up needing to keep LIJV flowing. I left UMMC stentless with video showing reflux in LIJV.
In 2011 in Albany the doppler showed no reflux....but the earlier video proved otherwise.

What about getting tested in Detroit with Dr. Haacke?
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Re: CCSVI without MS diagnosis?

Postby Lauri04 » Thu Mar 22, 2012 12:33 pm

Doppler is ok but not great for dx CCSVI. Venogram or MRI/MRV is gold standard. Doppler is very operator dependent and can't see the Azygos.
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Re: CCSVI without MS diagnosis?

Postby Cece » Thu Mar 22, 2012 12:35 pm

I don't think Dr. Haacke is testing patients outside of trials.
KDGO, it's interesting to hear you had a no-reflux diagnosis from doppler when you already knew you had reflux due to the video. Albany doesn't do doppler pre-testing anymore, and I can see where it's not particularly necessary if you're going to do the procedure anyway. From Dr. Cumming, I heard that it was about an 80% match between what he saw on doppler and what he saw when he went into the veins with a catheter.

seabea, there are several people here on this site who were treated by Dr. McGuckin. He's well known. I disagree with some of his techniques, most notably not prescribing true anticoagulants and not using IVUS and possibly overdiagnosing iliac or renal stenoses, but I am always impressed with him as a person and a doctor. Very likeable and intelligent.

I am not familiar with Dr. Lin. Is he at Baylor?
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Re: CCSVI without MS diagnosis?

Postby Lauri04 » Thu Mar 22, 2012 12:50 pm

I am going to Synergy and will have the Hackke MRI/MRV (my choice) before my procedure. It is pricey but like I said, Doppler is just ok. I have had some of those done too. A venogram obviously is good.
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Re: CCSVI without MS diagnosis?

Postby Cece » Thu Mar 22, 2012 1:00 pm

http://www.ncbi.nlm.nih.gov/pubmed/20351669
Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls.

Hojnacki D, Zamboni P, Lopez-Soriano A, Galleotti R, Menegatti E, Weinstock-Guttman B, Schirda C, Magnano C, Malagoni AM, Kennedy C, Bartolomei I, Salvi F, Zivadinov R.

Source

The Jacobs Neurological Institute, State University of New York, Buffalo, NY, USA.

Abstract

AIM:

Chronic cerebrospinal venous insufficiency (CCSVI) is a vascular condition characterized by anomalies of primary veins outside the skull that restrict normal outflow of blood from the brain. CCSVI was recently described as highly prevalent in patients with multiple sclerosis (MS), and can be non-invasively diagnosed by Doppler sonography (DS) and invasively by selective venography (SV). The aim of this paper was to investigate the value of neck magnetic resonance venography (MRV) for the diagnosis of CCSVI compared to DS and SV in patients with MS and in healthy controls (HC).

METHODS:

Ten MS patients and 7 HC underwent DS, 2D-Time-Of-Flight venography (TOF) and 3D-Time Resolved Imaging of Contrast Kinetics angiography (TRICKS). MS patients also underwent SV. The internal jugular veins (IJVs) and the vertebral veins (VVs) were assessed by both MRV sequences, and the findings were validated against SV and DS. SV has been considered the diagnostic gold standard for MS patients.

RESULTS:

All MS patients and none of the HC presented CCSVI, according to the DS criteria. This was confirmed by SV. For CCSVI diagnosis, DS showed sensitivity, specificity, accuracy, PPV and NPV of 100%, whereas the figures were 40%, 85%, 58%, 80% and 50% for 3D-TRICKS, and 30%, 85%, 52%, 75% and 46% for 2D-TOF in the IJVs. In MS patients, compared to SV, DS showed sensitivity, specificity, accuracy, PPV and NPV of 100%, 75%, 95%, 94% and 100%, whereas the figures were 31%, 100%, 45%, 100% and 26% for 3D-TRICKS and 25%, 100%, 40%, 100% and 25% for 2D-TOF in the IJVs.

CONCLUSION:

The use of MRV for diagnosis of CCSVI in MS patients has limited value, and the findings should be interpreted with caution and confirmed by other imaging techniques such as DS [doppler sonography] and SV [selective venography].

There are other doctors doing comparative studies, including Dr. Simka looking at MRV, doppler, and plethysmography. This is just one study, but recommends doppler not MRV.
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Re: CCSVI without MS diagnosis?

Postby Cece » Thu Mar 22, 2012 1:12 pm

http://www.ajnr.org/content/33/1/16.short
Intra- and Extraluminal Structural and Functional Venous Anomalies in Multiple Sclerosis, as Evidenced by 2 Noninvasive Imaging Techniques

K. Dolica,
K. Marra,
V. Valnarova,
M.G. Dwyera,
E. Carla,
Y. Karmonb,c,
C. Kennedya,
C. Brooksa,
C. Kilanowskia,
K. Hunta,
A.H. Siddiquic,
D. Hojnackib,
B. Weinstock-Guttmanb and
R. Zivadinova,b

aFrom the Buffalo Neuroimaging Analysis Center (K.D., K.M., V.V., M.G.D., E.C., C.K., C.B., C.K., K.H., R.Z.), State University of New York, Buffalo, New York

bThe Jacobs Neurological Institute (Y.K., D.H., B.W.-G, R.Z.)

cDepartment of Neurology, and Department of Neurosurgery (Y.K., A.H.S.), School of Medicine and Biomedical Sciences, Millard Fillmore Gates Hospital, Kaleida Health, University at Buffalo, State University of New York, Buffalo, New York.

Abstract

BACKGROUND AND PURPOSE: Chronic cerebrospinal venous insufficiency (CCSVI) is a vascular condition characterized by anomalies of the main extracranial cerebrospinal venous routes that interfere with normal venous outflow. Research into CCSVI will determine its sensitivity and specificity for a diagnosis of MS, its prevalence in MS patients, and its clinical, MRI, and genetic correlates. Our aim was to investigate the prevalence and number of intra- and extraluminal structural and functional extracranial venous abnormalities by using DS and MRV, in patients with MS and HCs.

MATERIALS AND METHODS: One hundred fifty patients with MS, 104 (69.3%) with RR and 46 (30.7%) with a progressive MS course, and 63 age- and sex-matched HCs were scanned with 3T MR imaging by using TOF and TRICKS sequences (only patients with MS). All subjects underwent DS examination for intra- and extraluminal structural and functional abnormalities of the IJVs. Absent/pinpoint IJV flow morphology on MRV was considered an abnormal finding. Prominence of collateral extracranial veins was assessed with MRV.

RESULTS: Patients with MS had a significantly higher number of functional (P < .0001), total (P = .001), and intraluminal (P = .005) structural IJV DS abnormalities than HCs. There was a trend for more patients with MS with extraluminal IJV DS abnormalities (P = .023). No significant differences were found on the MRV IJV flow morphology scale between patients with MS and HCs. Patients with progressive MS showed more extraluminal IJV DS abnormalities (P = .01) and more MRV flow abnormalities on TOF (P = .006) and TRICKS (P = .01) than patients with nonprogressive MS. There was a trend for a higher number of collateral veins in patients with MS than in HCs (P = .016).

CONCLUSIONS: DS [doppler sonography] is more sensitive than MRV in detecting intraluminal structural and functional venous abnormalities in patients with MS compared with HCs, whereas MRV is more sensitive in showing collaterals.

CCSVI is primarily a condition of intraluminal abnormalities, which were in this research better seen on doppler than MRV. Much larger sample size in this one than the other.
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Re: CCSVI without MS diagnosis?

Postby KDGO » Thu Mar 22, 2012 1:29 pm

Cece
Yes Dr. Haacke is testing patients and would like to test more normals. So bring a friend :)
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Re: CCSVI without MS diagnosis?

Postby MarkW » Thu Mar 22, 2012 2:07 pm

Hello Seabea,
CCSVI is not unique to MS so worth getting tested. There are only 3 clinics in the USA who offer a gold standard diagnosis, see this thread for details:
post188803.html#p188803
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI without MS diagnosis?

Postby magoo » Thu Mar 22, 2012 4:29 pm

Seabea,
A lot of your symptoms were very familiar to me prior to my CCSVI treatment. I have benefitted greatly from this treatment. Dr. McGuckin did my last two procedures. (Yes, you will probably have to be treated more than once.) It was covered by insurance. He is amazing and is more thorough than many other doctors treating CCSVI. If he is nearby, I would go to him. Although Cece thinks the aftercare is insufficient, I have talked to all of my doctors and they think the protocol is correct. I feel better than ever!
I hope you find answers. Go to CCSVI.org to read the most accurate information. Be well and keep us informed.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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