CCSVI screening in NY-7 Tesla MRI machine/NYU research

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

Postby msh » Sun Dec 27, 2009 12:33 pm

I was told that an MRA will also pick up veins on the contrast dye-I assume they use contrast as the standard protocol.
No radiologists out there on our site?
michele
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Postby MamaGirl » Sun Dec 27, 2009 1:29 pm

jenf wrote:Hi Michelle,
That's unbelievable! And here's another irony of this, which I didn't even connect until I read your post; Dr Herbert was the 3rd Neuro I went to after my introduction to this wonderful disease this past spring. I used the word "was" because I went to him once for a consult, asked him about LDN, and he chuckled and advised me with that gentle "pat on the head" approach that LDN was just "internet stuff". Amazing how this "internet stuff" has almost completely eliminated all of my MS symptoms! But he was more than happy to set me up with Rebif, which I obviously had no interest in.

The fact that he's not only aware of CCSVI, but also worked on the paper, makes me livid as well! I understand why doctors wouldn't want to tell us about CCSVI to not get our hopes up, but if he has FIRST HAND KNOWLEDGE of this, why on earth wouldn't he mention it to his patients so they could chose if they wanted to be screened? Especially if they have one of the highest power MRI's out there? I understand medicine is a money business, but what happened the the "heal the patient' ethics? I have half a mind to schedule another appointment with him so HE can read my MRV!!!
omg... I also saw Dr Herbert a few years ago and he wanted me on Tysabri right then and there and I said no, I would have to go home and discuss it with my kids and research it. He insisted it was good on his patients, though it was relatively new at the time and I stood my ground and said maybe at another time. I went home to research this new med and found out a few days later it was taken off the market due to associated deaths. I am very very upset that Dr Herbert has known about the CCSVI associations to MS... but not surprised at all. He gave me the impression right off that he was a part of the med companies...how sad. i am also trying to find out how to get tested at NYU if at all possible. My daughter has worked with Dr Herbert to approve his MS Studies, I am asking her if there are better ways to get through to NYU to get tested...
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Dr. Herbert

Postby msh » Sun Dec 27, 2009 1:50 pm

Hi!! Wow, interesting info!
I found out that he is a paid consultant for Teva pharm-would explain a lot. Someone else also said that he played down LDN. It sounds like he has his own agenda and we are not happy about it.
How exactly is your daughter involved in his studies?
Can she get thru to him and get his to move his _____ on this? NYU definitely has the equipment and he knows Dr. Haacke and the rest of them so he has to know the protocol.
There is no reason why this isn't already moving.
Tomorrow my friend is calling to discuss it with him. Perhaps some others who know him should too? They can create their own little "study" group. Dr. Grossman is a neuroradiologist who also collaborated. I emailed him and another person from NYU on the study but have not gotten a response and don't think I will.
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Postby scraps » Sun Dec 27, 2009 2:31 pm

[quote="jenf"]Hi Michelle,
Dr Herbert was the 3rd Neuro I went to after my introduction to this wonderful disease this past spring. I used the word "was" because I went to him once for a consult, asked him about LDN, and he chuckled and advised me with that gentle "pat on the head" approach that LDN was just "internet stuff".

Jenf:

My wife and I have had the same experience with our neurologist. About a year ago I was searching for anything that might be of benefit for my wife and I ran across LDN. At the next appointment with the neurologist we ask him about LDN and his response was that it was something that had been tried with little affect, and that there were no clinical trials to prove its benefit, so he did not recommend it. Since my wife is in SPMS he also told us that Tesabri would be of no benefit as well.

After reading all of these messages, I'm not what to believe anymore.
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Postby scraps » Sun Dec 27, 2009 2:51 pm

Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09

Cheerleader:

Where and who treated your husband? How did you go about the process of obtaining the procedure?
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Postby Algis » Sun Dec 27, 2009 6:45 pm

@scraps: meanwhile try to get that LDN - It worked marvels for me with no side effects. And dirt cheap.

Good luck :)
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Postby bestadmom » Sun Dec 27, 2009 7:37 pm

Scraps, if you call Skips Pharmacy in Boca Raton @561-218-0111, they can tell you who to get a script from. You should also try your gp. There are several groups on Facebook and SammyJo on this site is our LDN expert.
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Postby scraps » Sun Dec 27, 2009 10:04 pm

To All of You:

Thx for the support and the info. I am seeing my gp on Wed. Will see if I can get a scrip then. Again Thx.
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Postby SammyJo » Sun Dec 27, 2009 11:11 pm

I agree, everyone who is now in wait mode on the CCSVI procedure, LDN is your best bet to get some symptom relief, and delay damage.

What the medical experts say:

LDN fosters immune homeostasis via reduced oligodendrocyte destruction by apoptosis, reduced microglial activation, anti-inflammatory and antioxidant effects. Specifically, LDN reduces glutamate formation and accumulation, thereby reducing excitatory neurotoxicity, and oligodendrocyte apoptosis.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby jenf » Mon Dec 28, 2009 10:57 am

I agree with everyone regarding the benefits of LDN. When I was initially diagnosed, I researched every treatment option out there. LDN showed the most promise and the least discomfort. I thought it was worth a try before giving in to the medically approved "CRABs". Within DAYS I felt better. I really thought I was going to have to live my life in the new state of "yuckiness" that MS had left me in.

I found my Neuro through Crystal on the "LDN_Users" yahoo group. She's a great resource as well and has dedicated websites promoting LDN...
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby msmything » Mon Dec 28, 2009 5:47 pm

as far as the nyu stuff goes, i have contacted them at least 7-8 times over the past year or so, no replies.
I started reading more on the 7 t MRI's apparently they are not as benign as one would think, there is a recovery period. I don't know that they know what it does to the human body, messes with the chemistry set a bit.
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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Postby msh » Mon Dec 28, 2009 6:56 pm

Why are they so obnoxious at NYU that they think they are above the rest and don't have to bother replying to anyone? I still say picket them and then they will have to answer.
As for the effects of a 7 Tesla MRI, I am sure it has effects, everything does, but it is a risk vs. benefit decision. I think it is less detrimental than radiation from CT scans.
Who knows?
We have to just keep plugging away until we get what we want!
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Postby Katie41 » Mon Dec 28, 2009 9:58 pm

msmything and msh, here is an explanation of MRIs, as I understand them. MRIs of the brain pull apart the water molecules. The hydrogen and oxygen molecules then have to work their way back together to reform the water molecule. Each MRI makes it more difficult for them to do that.

The first MRI, I had, made it difficult to think clearly. I had polarity therapy and that fixed it. The second MRI I had, 15 years later, had many more side effects. The top of my head at the suture line was very hot, even 10 days later. I had difficulty sleeping, thinking, remembering. The therapist found that parts of my brain were very compressed. That would make sense since the water molecules are no longer water molecules, but individual H and O2 molecules.

I certainly agree, there are risks vs. gains; however, I'm not sure I would want a more powerful machine than the standard one currently used. Maybe they are inadvertantly doing patients a favor by not using the 7 Tesla.
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Re: MRI effects

Postby NHE » Tue Dec 29, 2009 1:39 am

Katie41 wrote:msmything and msh, here is an explanation of MRIs, as I understand them. MRIs of the brain pull apart the water molecules. The hydrogen and oxygen molecules then have to work their way back together to reform the water molecule. Each MRI makes it more difficult for them to do that.


That's really interesting. I have not of heard anything like that before. Do you have a reference for this information so that I can read more about it?

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Postby msmything » Tue Dec 29, 2009 8:40 am

That's good to know katie, as most of us are propably used to a 1.5 T MRI, it's quite a jump in intensity.
I've been so sick when i've had MRI's in the past that I couldn't tell you if I'd gotten side efects from the relapse or the MRI.
I'll be having my second MRI in 3 months tomorrow morning at Northwestern as part of the intake protocol for the stem cell study.

I wonder if I'll be facing magnetic north afterwards!LOL!
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