Bufallo and Albany - experienced both

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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mohzi
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Bufallo and Albany - experienced both

Post by mohzi » Fri Sep 10, 2010 10:11 pm

I have been lurking with very few post. I was recently treated in Albany.

Buffalo - A few months ago I did the self-pay at BNAC in Buffalo. The Doppler found a reflux problem in my right jugular and that my brain contained a high amount of iron. The MRV showed part of my left jugular partially closed.
A Doppler, MRI and MRV were done. I only met one of Zamboni's five criteria points for CCSVI. Therefore, I didn't have CCSVI according to BNAC.


Albany - A few weeks ago, I had a catheter venography done. They found a 60 to 70% blockage of my left jugular and ballooned in three places. (Venoplasty). My right jugular was approximately 50% stenosed, they ballooned in two places.

Within hours after the procedure most of my cognitive fog was gone and more than 5 people have told me I sound different while talking on the telephone. They said I sounded clearer and more focused. When I exercise I start sweating within a few minutes, whereas before it would take about 30 minutes. Not sure if the sweating is related to CCSVI or not. The neuropathy I had before is the same. My EDSS score is about a .5 or a 1. Only time will tell, but it was sure worth it just to have a little bit of my cognitive ability restored. Time will tell any other improvements and I will post.

I am glad I followed through with it. It was completely painless procedure a toothache is worse and have no regrets having it done.

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CureIous
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Post by CureIous » Fri Sep 10, 2010 10:49 pm

Hi Mohzi. I remember you posting about the 1 criteria only from bnac. So glad the veno found the real deal of what was happening, and you saw some improvements. Thing about all that cog fog stuff you like need it every second of every waking hour! Fog be gone! I had noticed some weird sweating stuff too immediately post op (first few weeks). It was as if my body was relearning how to regulate itself, but this was only an issue working outside in the sun or whatever not when idle, in fact didn't consider it much of an issue per se, seeing that you are supposed to do that in the heat, but after awhile things got back to what seemed to be normal.

Hard to say what normal is anymore after feeling abnormal for so long.

Keep us posted Mohzi the lurker...

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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Donnchadh
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Re: Bufallo and Albany - experienced both

Post by Donnchadh » Sat Sep 11, 2010 1:47 am

mohzi wrote:snip

Buffalo - A few months ago I did the self-pay at BNAC in Buffalo. The Doppler found a reflux problem in my right jugular and that my brain contained a high amount of iron. The MRV showed part of my left jugular partially closed.

snip
This is a very important consideration for a couple of reasons. First, it gives credence to Dr. Zamboni's CCSVI theory that venous disorders cause the deposition of iron, which is the real culprit causing the resulting cascade of symptoms we call "MS."

The IR who did my second liberation procedure was stymied by the lack of observable, measurable standards to determine whether the liberation procedure was indeed effective or not. This work in showing iron loads is something which satisfies this research requirement-it's something which is objective and completely free of any claims of placebo effect. The iron load can be observed and measured. It also means that post-procedure levels can be monitored, and correlated to any changes in "MS" symptoms. It also opens up the way to determine if any proposed iron removal protocols are indeed effective or not.

If I were setting up an IRB proposal, this would be at the heart of my research efforts: following up on the pre- and post-procedure levels of iron. It's my "hunch" that the amount and location of iron loads in the brain and spinal cord are directly correlated (if not cause-and-effect) with
the nature and severity of "MS" symptoms. I doubt that anyone who has "MS" does not also have above normal iron loads; this correctness of this idea should be relatively easy to determine by research.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Donnchadh
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Re: Bufallo and Albany - experienced both

Post by Donnchadh » Sat Sep 11, 2010 1:48 am

mohzi wrote:snip

Buffalo - A few months ago I did the self-pay at BNAC in Buffalo. The Doppler found a reflux problem in my right jugular and that my brain contained a high amount of iron. The MRV showed part of my left jugular partially closed.

snip
I would be very, very curious to know if other patients who have been tested for iron loads at BNAC would share their results?

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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mohzi
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chart

Post by mohzi » Sat Sep 11, 2010 7:12 am

I was given a graph with 1000 normal people and 1000 MS diagnosed people and their iron load. From the chart some MS people did have less iron than the normal controls and vice-versa. But overall MS patients had more. My particular iron load was high for my age. I was diagnosed about 4 years ago.

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sbr487
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Post by sbr487 » Sat Sep 11, 2010 8:22 am

Not a good sign given that we are pinning our hopes on Buffalo study.
There is always some doubt lingering whether they have got their protocols right :?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

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Re: chart

Post by Rokkit » Sat Sep 11, 2010 8:57 am

mohzi wrote:I was given a graph with 1000 normal people and 1000 MS diagnosed people and their iron load. From the chart some MS people did have less iron than the normal controls and vice-versa. But overall MS patients had more. My particular iron load was high for my age. I was diagnosed about 4 years ago.
That's interesting. It's too bad they can't look at iron in the spine yet. That some MSers have less iron than controls could mean that their brain is basically normal and the iron is actually in their spine, especially if they're PPMSers. Maybe when the study comes out it will split the numbers out among MS categories.

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cheerleader
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Post by cheerleader » Sat Sep 11, 2010 11:03 am

mohzi---
1. congrats
2. increased sweating seems to be occurring in many of those who have had angioplasty. Here's a thread from last year on this very topic.
http://www.thisisms.com/ftopicp-68537-s ... html#68537
3. iron deposition. The Haacke protocol will follow iron amounts in the brain before and after angio. Dr. Hubbard is utilizing this protocol. Speaking of iron and Hubbard...today marks the day a patient with Parkinsons was diagnosed with CCSVI. Will we see more of a correlation with neurodegenerative disease, iron deposition and CCSVI? More to come....
4. Venography is the final word. As long as testing is relegated to MRV and doppler, we don't know the complete picture. Sadly, the external tests only give a partial picture. Catheter venography is where it's at.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Post by CaptBoo » Sat Sep 11, 2010 11:18 am

An "alternative" doctor sent me for blood tests earlier this summer. I came back with very high ferritin, a marker for iron storage. My blood iron was normal. I went back over all the blood tests my neuros have ordered and not one had tested my ferritin.

Cheerleader-Do you have a source for more info on the PD and CCSVI thing you mentioned? I need to pass it along to a good friend with PD.

Boo

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cheerleader
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Post by cheerleader » Sat Sep 11, 2010 11:37 am

CaptBoo wrote: Cheerleader-Do you have a source for more info on the PD and CCSVI thing you mentioned? I need to pass it along to a good friend with PD.

Boo
Devin Hubbard posted it on the Facebook wall I admin....CCSVI in MS (click on blue letters in my sig to get there)
The Hubbard Foundation has IRB approval to test for CCSVI in all neurodegenerative diseases:
Hubbard Foundation link
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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mohzi
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Papers soon

Post by mohzi » Sat Sep 11, 2010 12:04 pm

From what I understand some of the Doctors performing Catheter Venography in Albany will very soon publish a paper. They are finding more than 80% of the patients they are doing catheter venography on having stenosis.

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Re: Papers soon

Post by Rokkit » Sat Sep 11, 2010 2:18 pm

mohzi wrote:From what I understand some of the Doctors performing Catheter Venography in Albany will very soon publish a paper. They are finding more than 80% of the patients they are doing catheter venography on having stenosis.
Hopefully they have controls, too, or everyone will just say 80% of the population has stenosis.

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annad
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Post by annad » Sat Sep 11, 2010 4:14 pm

I was treated in Albany as well.

I think as doctors gain experience and also learning from us, they adjust what the 'criteria' is that gets treated. Both my jugulars were mildly stenosed at about 40% and I was still treated. My azygos was also ballooned. He doesn't wait for the 50% stenosis mark or more. I have seen some pretty great improvements. Yes, it's anecdotal. . . not evidence. . . blah, blah that's exactly what I'm thinking when my quality of life has improved so much. . . NOT! :lol:

I've heard that others don't treat unless it's a 50% or greater stenosis.

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