Hubbard's Testing Protocol

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

Hubbard's Testing Protocol

Postby selkie » Sat Jul 31, 2010 10:55 am

Sorry folks to be so slow on the uptake. I've been considering going to Hubbard Foundation in San Diego for several weeks now & have already started to apply to them.

Then I started thinking (yes, takes weeks for the brain to do that) about their testing protocol which according to their website is following Dr. Haacke's protocols.

Because I know Dr. Haacke has a great reputation, and I have family in southern California, I considered Hubbard an excellent choice.

However, Here's what it says on their website about how they do their tests after which, the patient has to wait 2-4 WEEKS for Dr. Haacke to interpret the results, then angioplasty is performed if needed.

But doesn't Dr. Sclafani say the venogram is the Gold Standard of testing and that angioplasty would then be performed on the same day as the venogram?

An MRV & dopplar might yield false negatives?

Anyway here's what Hubbard says:

spacer
Multiple Sclerosis FAQ:
Frequently Asked Questions

What is the Haacke Protocol?
E. Mark Haacke, PhD a world-renowned MRI physicist at Wayne State University has compiled a series of MRI scans designed to comprehensively evaluate the cerebral venous drainage system and the status of MS lesions. The Haacke Protocol includes:
MR venography with and without gadolinium contrast which shows the veins of the head and neck and identifies obstructions or missing veins
Flow Quantification which measures the speed and direction of flow in the veins of the brain and neck
SWI (Dr. Haacke's invention) which shows the very small veins in the cortex and also shows iron accumulation
T2 and T1 with and without contrast which identify the amount of old and new areas of inflammation ("plaques")

In addition, at AFI we are also using functional MRI BOLD to measure venous delay from the cerebral cortex.

*************

So that means they don't use the venogram as the test only the MRV & dopplar? I don't understand all the technical terms so was hoping someone could explain it better.

Or does "venography" means they do use a venogram, but if I have to wait 2-4 weeks for interpretation and an angioplasty is needed, does that mean they go into the veins TWICE? And that other places would perform the angioplasty the same day as the venography so would only go in ONCE? I'm really not understanding this!

I guess I should also call Hubbard and ask.

Now I'm beginning to think if they don't use the venogram, I may not get accurate testing results, and possibly a false negative.

Confused, selkie
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Postby cheerleader » Sat Jul 31, 2010 11:10 am

Selkie--
The Hubbards are running a very fine operation. They are utilizing MRV technology, which is how my husband and all of the Stanford patients were diagnosed. This test is like an MRI. It is non-invasive. You lie in the tube, images are taken of your veins.

The 3 week wait time is while Dr. Haacke looks at your results of your MRV and determines if there is stenosis. If so, the next step is venography, which is a catheter place inside your leg vein, up thru the body into the chest and neck. This is the "gold standard" test. If anything is seen, there will be treatment and ballooning right then and there.

Hope that explains it,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby selkie » Sat Jul 31, 2010 11:19 am

Thank you, cheerleader it does. But couldn't the non-invasive tests give false negatives, shouldn't they just go straight for the "gold standard" - going into the veins to look?

I know this is probably more risky, but I'm also afraid of false negatives.

Though I know there's so much they're learning, as I do whenever I read Dr. S's thread.

So there are some pressures on the jugular/azygos that might be external pressures and not stenosis, so in those cases angioplasty isn't indicated? (I should clarify that with Dr. S. I suppose but now I'm really confused!!)

Anyway, thanks for clearing up Hubbard's testing method for me.

Thank you, selkie
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Postby cheerleader » Sat Jul 31, 2010 11:24 am

that's just the way they do it at the Hubbard Foundation. If it doesn't work for you, you can wait for Dr. Sclafani to be up and running again.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Sat Jul 31, 2010 11:28 am

You'd be flying from Hawaii twice if you go with Dr. Hubbard? That doesn't seem...optimal. Maybe go east coast after all? There is also the Pacific Physicians that was just posted about here. They've set up on their website that they do ccsvi testing, someone here has been to them and gave them a positive review, and they are in California.

Another option is to wait, Dr. Hubbard's son posted on Facebook awhile back that he thought by August they'd have the trips consolidated down to just one trip. No idea where that stands or if that's still possible but it was something they were trying to do as of a few weeks ago.

Most docs do the MRV testing beforehand, but then review it themselves. It's sending it out to Dr Haacke for review that makes it take so long. Dr. Siskin does MRVs for people who are local, but for people flying in he goes straight to the catheter venogram.

I think DrS's opinion has been that people with CCSVI have MS and people with MS have CCSVI...so if a MRV came back negative, it's worth continuing to try for a catheter venogram, because MRVs have not been determined to be useful or not useful in any published research (Zamboni's research used the doppler ultrasound.)

Best of luck whatever you manage! It is not easy, this navigating our way to treatment, but I think it's been getting a little easier these last several months.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby selkie » Sat Jul 31, 2010 12:01 pm

Thanks, both of you, that clarifies a lot - it is confusing keeping all these tests straight when I know nothing about veins, etc.

I'll ask Hubbard when they think they could get it down to one trip & also check out the other Pacific testing place. Could someone PM me their information (name & phone #?) I do know of another doctor in Southern Calif but don't know if it's okay to mention his name. He's very expensive but a couple people here really liked him too. But I don't think I can afford him.

I'm also considering NY - but since Dr. S is in Brooklyn, to be frank, I'm terrified of NYC!! I get very disoriented with lots of noise & visual stimuli.

Thank you all again. I'll call Hubbard first and see what the status is of a one trip test any time soon.

Aloha, selkie
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Hubbard`s testing protocol

Postby lovebug » Sat Jul 31, 2010 1:18 pm

Just thought I would let you know that while I had a MRV and doppler ultrasound done in May 2010 at False Creek clinic in B.C. , I paid an extra $400.00 to have my reports sent to Dr. Haacke for review. It took almost 2 months to get a reply back and there is no mentiion whatsoever about iron levels in the brain. I have been told that Dr. Haacke does not give the iron levels! Interesting I thought since I have repeatedly read that this is part of his testing process. Well myself and another MS patient both had our test results sent to Dr. Haacke and were given the same answer. Not sure why not though. In the mean time I have also been told that False Creek clinic has increased these testing fees and Dr.
Haack`s report is part of there testing now.
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Postby gothicrosie » Sat Jul 31, 2010 2:47 pm

The tests done through the Hubbards include the iron levels and they have an arrangement with Dr. Haacke so they come back within 2-3 weeks...they are working on faster since they have trained in-house staff to eventually take over the reading of the scans. That is probably what Devin means by reducing processing time from scan to treatment.

Also, the "gold standard" is not something to hang everything on...I used to think so until Dr. Sclafani told me:
“the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. Intravenous Ultrasound (IVUS) and other tests can augment the findings of catheter venography. Also, IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography.”

This means there are a number of options out there to diagnose and a number of options to misdiagnose. There are no absolutes here, we are on the bleeding edge of innovation and discovery with CCSVI.

I received my scans at the Hubbard Foundation. I was able to take that to a local FSIR and will be able to arrange treatment with him.

I feel confident they scans are pretty comprehensive in their ability to see vein structure, flow, and iron content. Obviously there are other ways of seeing the veins that provide other details the MRV cannot provide...but they will be able to provide you some pretty good information to get going with.

Good luck.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Re: Hubbard`s testing protocol

Postby patientx » Sat Jul 31, 2010 5:06 pm

lovebug wrote:J I paid an extra $400.00 to have my reports sent to Dr. Haacke for review.

Why on earth would anyone pay to have their MRI scans reviewed by Mr. Haacke? He is not a radiologist.
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Re: Hubbard`s testing protocol

Postby selkie » Sat Jul 31, 2010 5:40 pm

patientx wrote:
lovebug wrote:J I paid an extra $400.00 to have my reports sent to Dr. Haacke for review.

Why on earth would anyone pay to have their MRI scans reviewed by Mr. Haacke? He is not a radiologist.


Well, he is a very big name in MS research and his research on iron deposits in the brain & his support of Dr. Zamboni make him a valuable asset to any medical team. He attended the symposium of NY - I'm not familiar with all his accomplishments but even my neurologist has heard of and respects him.

I'd be glad to have him look at my test results, and it does seem logical to start with a less invasive test before proceeding to the catheter in the veins. It's more information for the IR and that in itself is valuable.

I'm sure Dr. S. could answer your question a lot better, maybe check with him.
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Postby gothicrosie » Sat Jul 31, 2010 5:53 pm

I think Dr. Haacke is well qualified to review the scans...
Here is some info on Dr. Haacke:

E. Mark Haacke, PhD
Director of MR Research Facility

Dr. Haacke's research interests include: MR Angiography, Susceptibility Weighted Imaging (SWI) to study vascular disease, Stroke Imaging, Better Detection of Cancer and Brain Function. He supervises graduates students in engineering, computer science and medical physics. He and Dr. Sehgal work together to enhance current clinical methods and take research ideas into the clinical realm.

The MR Research Facility is committed to the development of the MR methods and their application in the preclinical and clinical subjects to better understand human physiology and disease. The MR Research Facility will promote the use of magnetic resonance-based methods to the WSU scientific community and support the implementation of MR methods through education, assistance in experimental design, and data collection and analysis.

Source: http://www.mrc.wayne.edu/peoples.htm
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby lovebug » Sat Jul 31, 2010 8:01 pm

I did not want anybody to misunderstand my thoughts on Dr. Haacke. He is a highly educated and respected man in his field and I applaud him for the work he has done for MS patients!!!! But the tests I/we had done in 2010 at the False Creek Clinic in B.C. do not show anything about iron levels in the brain. We waited 2 months for the reports which are comprehensive and difficult for most people to even understand (flow charts) but worth the money. The $400.00 is now included in the overall fees for the testing at this clinic. But I still cannot get an answer from them as to why we did not have our iron levels tested!!!!!
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Postby gothicrosie » Sat Jul 31, 2010 9:22 pm

lovebug wrote:But the tests I/we had done in 2010 at the False Creek Clinic in B.C. do not show anything about iron levels in the brain. We waited 2 months for the reports which are comprehensive and difficult for most people to even understand (flow charts) but worth the money. The $400.00 is now included in the overall fees for the testing at this clinic. But I still cannot get an answer from them as to why we did not have our iron levels tested!!!!!


Lovebug,
Did you get the SWI scans? Was your report on "MR Innovations, Inc." letterhead?

It is the SWI scan that shows the iron content. If they did not do that scan, there would be no report of it.

Feel free to pm me to discuss if you prefer. I have my report and would be happy to compare and contrast to solve this with you.
Let me know.
:)
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby selkie » Sun Aug 01, 2010 2:03 am

Well, upon reading these replies (thanks everyone for the input & questions), I've decided since I live in hawaii, two trips to San Diego & the expense is out of the question.

If Hubbard hopes to narrow it down to one visit, that would work, otherwise if I can't wait for that to happen I'll have to seek help elsewhere, where I won't have to make two trips just for the treatment.

I do realize there will probably have to be periodic check-ups but that the entire procedure would involve one trip for me and not two and that's about $1,000 in air fare saved.

The reality of cost is hitting home.
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Postby MS_HOPE » Mon Aug 02, 2010 2:43 pm

selkie, don't know if you follow "CCSVI in MS" on Facebook, but Devin Hubbard posted this today:

Devin Hubbard UPDATE: Hubbard Foundation will begin to do one trip scanning and treatment starting mid september. We will still need an MRI prescription/requisition, and BUN and Creatinine blood levels. We're going to finish treating those we've scanned and those we've scheduled to scan, but send us your contact info, and the abo...ve paperwork, and we'll put your name on the list for the one stop treatment.

Best of luck to you, selkie.
CCSVI:  Making Sense of MS
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