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Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 3:49 pm
by drsclafani
Hooch wrote:The patient that Dr Sclafani treated for only Nutcracker Syndrome this time (jugulars and azygous were running freely from a previous procedure) was thought to have Chronic Fatigue before she received her MS diagnosis. This is all getting even more interesting!
hooch, why is it that you know that and I dont. :sad:

Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 3:56 pm
by drsclafani
NZer1 wrote:This was posted on Dr. Flanagan's thread and I think it of interest for us all;

http://www.rush.edu/webapps/MEDREL/serv ... se?id=1527

September 01, 2011
Signs of Aging May be Linked to Undetected Blocked Brain Blood Vessels

Many common signs of aging, such as shaking hands, stooped posture and walking slower, may be due to tiny blocked vessels in the brain that can’t be detected by current technology.

In a study reported in Stroke: Journal of the American Heart Association, researchers from Rush University Medical Center, Chicago, examined brain autopsies of older people and found:

Microscopic lesions or infarcts — too small to be detected using brain imaging — were in 30 percent of the brains of people who had no diagnosed brain disease or stroke.

Those who had the most trouble walking had multiple brain lesions. Two-thirds of the people had at least one blood vessel abnormality, suggesting a possible link between the blocked vessels and the familiar signs of aging.

“This is very surprising,” said Dr. Aron S. Buchman, lead author of the study and associate professor of neurological sciences at Rush. “The public health implications are significant because we are not identifying the 30 percent who have undiagnosed small vessel disease that is not picked up by current technology. We need additional tools in order to identify this population.”

In 1994, the researchers began conducting annual exams of 1,100 older nuns and priests for signs of aging. The participants also donated their brains for examination after death. This study provides results on the first 418 brain autopsies (61 percent women, average 88 years old at death).

Although Parkinson’s disease occurs in only 5 percent of older people, at least half of people 85 and older have mild symptoms associated with the disease.

Before the study, researchers believed that something more common, such as microscopic blocked vessels, might be causing the physical decline. The study’s autopsies found the small lesions could only be seen under a microscope after participants died. The lesions couldn’t be detected by current scans.

During the annual exams of the nuns and priests, researchers used the motor skills portion of a Parkinson’s disease survey to assess their physical abilities. Researchers observed and rated the participants’:

Balance
Ability to maintain posture
Walking speed
Ability to get in and out of chairs
Ability to make turns when walking
Sense of dizziness
“Often the mild motor symptoms are considered an expected part of aging,” said Buchman, who is also a member of the Rush Alzheimer’s Disease Center. “We should not accept this as normal aging. We should try to fix it and understand it. If there is an underlying cause, we can intervene and perhaps lessen the impact.”

Co-authors from Rush are Sue E. Leurgans, PhD; Dr. Sukriti Nag, PhD; Dr. David A. Bennett, and Dr. Julie A. Schneider, MS. The National Institutes of Health and the Illinois Department of Public Health funded the study.
This looks like it is the result of atherosclerosis. Either du to atherosclerotic plaques in the carotid arteries or other vascular lesions in the heart or further up the line toward the brain

This is not the same as the vascular injuires of MS and CCSVI which are venous

Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 7:39 pm
by Cece
I ran across a discussion of twisted jugulars, which I thought might be along the lines of so-called candy-wrapper twists in the azygous, until your name was mentioned in the comments as having diagnosed a patient with a twisted jugular!

http://ccsvi-ms.ning.com/forum/topics/twisted-jugulars

What would cause a twisted jugular? Can it be treated by ballooning or would it retwist? Is this an extremely rare finding? I haven't heard it mentioned before.

Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 8:12 pm
by David1949
There are several types of MS. The symptoms and rate of progression can vary widely from one type to the next and even within one type. So maybe what we call MS is actually several different diseases. Perhaps some are related to CCSVI and will respond to venoplasty. Maybe others are due to blockages in the arterial side and will not respond to venoplasty. Maybe some are due to blockages in the flow of CSF.

Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 9:37 pm
by NZer1
I agree David1949, the challenge is to be able to measure the flows of all three at a reasonable price, that is accurate across test centers.

Check the flows of normals and us.

It would help to differentiate disease types and PTA outcomes.

If I knew what was happening, and where I would feel more confident spending my life savings on a 'HOPE'.

And then trying to finance more procedures to maintain the 'HOPE'!

Its great/fantastic that the PTA's are happening, it needs other specialties to stand along side and find out 'why' there are changes in symptoms. If we knew why then we will be streets ahead on this issue.

Regards Nigel

Re: DrSclafani answers some questions

Posted: Sun Nov 06, 2011 9:55 pm
by Cece
I originally expected there to be a really obvious difference in presentation of CCSVI abnormalities in RR vs PP, such as azygous malformations only in pwPPMS, but this has not turned out to be the case.

Re: DrSclafani answers some questions

Posted: Mon Nov 07, 2011 12:08 am
by Cinna
Dr. Sclafani, I am the patient who you treated for nutcracker syndrome but did no further treatment in July as my jugulars had remained open from the 1st treatment. Hooch is a friend of mine, and yes I did have a diagnosis of chronic fatigue syndrome for about 2 years (and was receiving long term disability because of it) prior to my MS diagnosis.

I am still doing well and as you know have recently been diagnosed with extensive venous incompetency in both my deep and superficial veins in both of my legs. I am trying very hard to walk more to build up my leg muscles and that, together with compression stockings, is helping my legs somewhat. I'm on vacation now and am walking further and with less pain. Most importantly my recovery time is much quicker-- very sore legs at night but able to walk as far again the next day. Better balance, gait, fewer spasms and my legs don't give way as I've already reported. Stenting the renal vein has definitely helped me.

DrSclafani answers on Dural Sinuses

Posted: Mon Nov 07, 2011 3:08 am
by MarkW
Hello Dr S,
Many thanks for your reply.
I am simply trying to make sure that pwMS ask their doctors for a complete diagnosis of CCSVI syndrome using the best tools (reason for my gold standard thread). For me diagnosis is a vital first step and unless all CCSVI doctors conduct a complete investigation then pwMS was wasting their money.
I look forward to reading how you visualise the dural sinsuses in the future. I fear that when you say that instances of problems in this group of veins is low then some doctors will not investigate them at all.
I hope your paper/presentation goes well, it is an important step for pwMS. I dream that a future CCSVI conference agrees a list of veins to be investigated and how to treat them.
Best wishes,
MarkW

Post history:
MarkW wrote:
Dr S,
Thanks for the info below. I have dural sinuses on my list. I checked where these
veins are and see that 'dural sinuses' are many veins, which are close to the brain.
Should I keep them on my list of veins which should be investigated for a full
diagnosis ??? These veins do not have valves according to the textbook, are you
checking that septa/webs are present ??? Is is possible to investigate any of the
dural sinuses using IVUS ???
Kind regards,
MarkW
PS I agree that investigating 3 veins 'does not cut it'. I am less polite and say
that doctors who check only 3 veins are cheating pwMS by offering just this.
--------------------------------------
Dr S posted:
There is no correlation between location of stenoses and symptoms that i can detect.
There are about 20 veins that can be involved in ccsvi
right and left transverse sinuses
right and left IJV
right and left vertebral veins
right and left innominate veins
Azygous vein
Hemiazygous vein
left renal vein
left iliac vein
ascending lumbar vein
and eight lumbar veins
Each is either an inflow vein or an outflow vein depending on circumstances.
A three vein interrogation just does not cut it.
--------------------------------------------
Dr Sclafani replied:

Dear Mark
there are better ways to visualize the dural sinuses and the likelihood of CCSVI is low. My number one reason for putting the catheter or wire up there is to make sure that i am truly in the IJV. it is possible to be in a parallel vein rather than the IJV if you do not put the catheter through the foramen. so that is #1 reason for me to catheterize the dural sinues. I havent found many problems, just a few, so i will make a decision if i need to actually do a dural venogram on January 1 when I make my next iteration of my diagnosis and treatment protocol. I do so every couple of months. As I promised cece (and you) there are other fish to fry and VV comes to the front of the list.
=================================

Re: DrSclafani answers some questions

Posted: Mon Nov 07, 2011 10:48 am
by THEGREEKFROMTHED
I recall you telling me I had a septum in my vetebral vein. What is your assesment of that at this point in your treatment and diagnosis? Does it influence any flow? Man i have some crazy shit...no wonder I am so goofy.

Re: DrSclafani answers some questions

Posted: Mon Nov 07, 2011 11:54 am
by NZer1
Hi all,
If there are unknown outcomes from PTA then are we looking at the wrong end of the problem.

The flow in has been studied and my recall is that there is less flow in and greater volume of blood in the brain of PwMS.

Checking the outflow veins is one area that problems can delay etc flow.

If the other aspects eg supply and transit within the brain are not known aren't we assuming too much and expecting to much from PTA?

Some of our problem is definitely in the outflow veins, and for some it is not the whole picture. Sure there is a factor of damage over time and the unknown or the cause in symptom change because of flow improvements, some immediate and some over time.

There is many studies that could be started now to help answer these questions. Some of the outcomes may require drugs to modify the course of recovery.
All of these questions and ideas need to be directed to someone who can move this ahead. The load at present seems to be on the wrong people, imo.

Its time for the other specialties of Medicine to step up, the time for knocking the theory of blood flow causation in de-generative diseases has gone.

Where can we find more inquiring minds and funding?

Regards Nigel

Re: DrSclafani answers some questions

Posted: Wed Nov 09, 2011 10:30 am
by NZer1
Comment Mike Arata put on FB; https://www.facebook.com/Dr.Arata

Mike Arata
"Looked at almost 50 renal veins now. Finally an abnormal one. Interestingly enough the flow obstruction is not clinically significant since it is decompressing via a venous loop."

Dr S I have asked Mike if he uses IVIS, it will be interesting to see his reply. When I have asked questions about his findings and if he used IVIS in the past he does not reply for some reason!

Some of the comments Mike makes about 'his' treatment of valves gives the impression that PTA for CCSVI symptoms is different to what you are looking for and treating (and also why) when you are treating people.

Is there a difference? It seems to be splitting the CCSVI movement!

Are people finding that they are going for further treatments (after seeing some treatment providers), because they feel they have not been assessed accurately by some IR's?

Regards Nigel

Re: DrSclafani answers some questions

Posted: Wed Nov 09, 2011 11:32 am
by Cece
Here's a quote from Dr. Harris's statement on Montel William's treatment at an American Access Care center (not Synergy) in California:
Synergy Health Concepts, as well as several other centers, have found that blockages within the veins are caused by abnormal valves in the lower portion of the jugular veins. The CCSVI treatment is focused on opening these valves and restoring normal blood flow from the brain.
It is about time that they acknowledge that what they are doing is similiar to what any IR is doing. This is contrary to what their patients are saying or have been told in the past, which is more along the lines of this:
I chose them because they approach the procedure in a way no one else in the world does
http://ccsvi-ms.ning.com/forum/topics/p ... tionalists

Nigel, you should ask Dr. Arata if he knows that looking at the renal vein, and especially 50 renal veins, has been compared to a violation of standard of care....
http://www.thisisms.com/forum/chronic-c ... ml#p169961

But now I am just cluttering up Dr. Sclafani's thread. Apologies....

Re: DrSclafani answers some questions

Posted: Wed Nov 09, 2011 12:09 pm
by Squeakycat
Cece wrote:I am terribly behind on the videos.
Cece,

All the videos are available as they are being released at the SUNYRadiology Channel on YouTube. Further, the YouTube versions are not subject to the time limit that has forced the Facebook versions to be broken into smaller segments.

Re: DrSclafani answers some questions

Posted: Thu Nov 10, 2011 12:43 pm
by drsclafani
Cinna wrote:Dr. Sclafani, I am the patient who you treated for nutcracker syndrome but did no further treatment in July as my jugulars had remained open from the 1st treatment. Hooch is a friend of mine, and yes I did have a diagnosis of chronic fatigue syndrome for about 2 years (and was receiving long term disability because of it) prior to my MS diagnosis.

I am still doing well and as you know have recently been diagnosed with extensive venous incompetency in both my deep and superficial veins in both of my legs. I am trying very hard to walk more to build up my leg muscles and that, together with compression stockings, is helping my legs somewhat. I'm on vacation now and am walking further and with less pain. Most importantly my recovery time is much quicker-- very sore legs at night but able to walk as far again the next day. Better balance, gait, fewer spasms and my legs don't give way as I've already reported. Stenting the renal vein has definitely helped me.
cinna

I am dealing with many patients with renal vein stenosis so this isnt the best way for me to do followup with your username instead of your real name. I am pretty sure of who you are but do not want to make that assumption. CAn you please email me at ccsviliberation@gmail.com so that I know which of my patients with Nutcracker syndrome you are and who actually had a diagnosis of chronic fatigue syndrome.. if you you are the patient i am imaging you to be, then a more significant bit of history that you can imagine.



DrS

Re: DrSclafani answers some questions

Posted: Thu Nov 10, 2011 12:46 pm
by drsclafani
THEGREEKFROMTHED wrote:I recall you telling me I had a septum in my vetebral vein. What is your assesment of that at this point in your treatment and diagnosis? Does it influence any flow? Man i have some crazy shit...no wonder I am so goofy.
i dont recall that. perhaps i saw a valve but a septum is unlikely