DrSclafani answers some questions

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

Postby garyak » Fri Jun 04, 2010 7:28 pm

fogdweller wrote:Are all these tests fopr permanent optic nerve damage? Which ones might reflect reversable deficiencies?

Looking for immediate improvement with immediate improved vascularization.


The first four tests are all tests that can assess loss of ON function whether it's permanent or just compromised function from inflammation . So it would be interesting to see if they demonstrate improved function post liberation.
In lots of cases there may be some permanently damaged optic nerve fibres , but if the ON function improves post liberation these tests will
accurately reflect that.
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 3:00 pm
Location: grande prairie , alberta,canada

Advertisement

Postby Nunzio » Sat Jun 05, 2010 3:45 am

fogdweller wrote:Are all these tests fopr permanent optic nerve damage? Which ones might reflect reversable deficiencies?

Looking for immediate improvement with immediate improved vascularization.

The first four tests can be reversible; we know that because after Optic Neuritis resolves they all improve.
The OCT might not be because it measure the thickness of the nerve fiber layer which , once is lost, cannot regenerate.
Another very important test, probably the most important screening test is to check the pupils. It is called APD or RAPD and it compares the size of the pupils in darkness and light. It can be quantitated by using different gray filters.
User avatar
Nunzio
Family Elder
 
Posts: 254
Joined: Thu Jan 14, 2010 4:00 pm
Location: South Florida

Postby garyak » Sat Jun 05, 2010 9:29 am

Nunzio wrote:
fogdweller wrote:Are all these tests fopr permanent optic nerve damage? Which ones might reflect reversable deficiencies?

Looking for immediate improvement with immediate improved vascularization.

The first four tests can be reversible; we know that because after Optic Neuritis resolves they all improve.
The OCT might not be because it measure the thickness of the nerve fiber layer which , once is lost, cannot regenerate.
Another very important test, probably the most important screening test is to check the pupils. It is called APD or RAPD and it compares the size of the pupils in darkness and light. It can be quantitated by using different gray filters.

I am amazed as to how knowledgeable members of this forum are-you are so right in all your comments. The Afferent Pupil defect will show up only if there is enough damaged ON axons. The Visual evoked potential test is way more sensitive though.
Last edited by garyak on Sat Jun 05, 2010 3:55 pm, edited 1 time in total.
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 3:00 pm
Location: grande prairie , alberta,canada

Postby NZer1 » Sat Jun 05, 2010 1:13 pm

Once again, we in the MS community have reason to celebrate the amazing genius of Professor Roy Laver Swank.


http://www.takingcontrolofmultiplescler ... icleID=117
User avatar
NZer1
Family Elder
 
Posts: 1504
Joined: Thu Feb 18, 2010 4:00 pm
Location: Rotorua New Zealand

This is criminal.

Postby 1eye » Sat Jun 05, 2010 3:34 pm

girlgeek33 wrote:
Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!

<tears>


These people are being murdered. For whatever reason. If it is a buck, or an ego, or bureaucracy, or scientific stubbornness, whatever it is. If in law it would only be malpractice, or manslaughter. Whatever. It is still a crime of omission. It is still deliberate. It is still murder. Your friend was murdered.

And not by you. Dr. Sclafani!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2852
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby scorpion » Sat Jun 05, 2010 6:21 pm

What is being murdered is science and common sense. Back to the general forum for me where logic still exists.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby L » Sat Jun 05, 2010 6:37 pm

scorpion wrote:What is being murdered is science and common sense. Back to the general forum for me where logic still exists.


Bye!
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Re: This is criminal.

Postby Cece » Sat Jun 05, 2010 7:54 pm

1eye wrote:It is still a crime of omission. It is still deliberate.

I think this only applies if the liberation treatment were a proven treatment...otherwise not many doctors would try this on someone in very bad shape...but it is very, very, very tragic. Condolences, girlgeek33.

I think we are convinced, because we are immersed in this and have read all there is to read, but the average doctor hasn't, at all...so maybe we need our spouses or loved ones to be advocates, in this situation...or have a living will...I don't know. :(
"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
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Zeureka » Sun Jun 06, 2010 1:30 am

NZer1 wrote:Once again, we in the MS community have reason to celebrate the amazing genius of Professor Roy Laver Swank.


http://www.takingcontrolofmultiplescler ... icleID=117
That's very intersting to hear, NZ ! In fact Swank is in my view another heroe that should have had a noble prize - and I'm on the Swank diet since diagnosis. I eat nearly no meat, except chicken/turkey breast there and then (butter and cream are banned, only fish and vegetables/fruit/cereals/potatoes/low-fat milk products/vegetable oils rich in omega-3 and 6) - and have impression that it helped me a lot!

My family follows nearly same diet - the kids get their meat at school...it's actually not too complex as a diet and certainly healthy for everyone, also for cardiovascular issues (if one manages to find alternative treats, but there are!). And lets let obesity...I need to eat double in order to keep my weight...in fact at hotel in Poland they were wondering when saw my tons of fruit and smoked salmon/fish plates of breakfast in mornings...:)

And where's the question to Dr Sclafani? Ah, yes, maybe to ask what do you think about this Swank diet?
User avatar
Zeureka
Family Elder
 
Posts: 481
Joined: Thu Jan 14, 2010 4:00 pm
Location: Italy

Postby Cece » Sun Jun 06, 2010 11:45 am

Zeureka wrote:And where's the question to Dr Sclafani? Ah, yes, maybe to ask what do you think about this Swank diet?


from March 31st:
drsclafani wrote:
Also when I was on the diet I lost 25lbs which is good, but I was light headed all the time, now that I'm not on the Swank diet I'm no longer light headed. Would you have any idea why?
Thanks again Dr Sclafani for all your time & effort to help us, I wish there were more doctors like you around willing to help.


I wish there were more doctors like me too.your unquenchable thirst for understanding and knowledge is sometimes overwhelming.

to answer your question, i must admit that i am not a dietician. I can't even think about a diet.

let alone one named for hillary swank
"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
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby garyak » Sun Jun 06, 2010 7:06 pm

One of the neurologists I have seen for my M.S. told me last week that " one of the big holes in Dr. Zamboni's theory is in regards to the source of iron found in MS brains". This neurologist claims ( through his own research ) that " increased iron in the MS brain is an accumulation ( for some reason ) of iron normally found in the brain and is different than iron that would be found there if it's source was reflux of blood from jugular veins".
Now, does anyone know what this difference might be?
I had so many questions for him I forgot to get him to clarify what he felt was different . Dr S. any thoughts here?
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 3:00 pm
Location: grande prairie , alberta,canada

Postby bestadmom » Sun Jun 06, 2010 7:23 pm

Dr. S is in Italy with Paolo Zamboni for the week with no internet access. We probably won't hear from him until next weekend.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby dlb » Sun Jun 06, 2010 7:29 pm

Hi garyak,
There are some on this forum (and elsewhere) that believe that iron loading in the body may have something to do with hemochromatosis &/or iron loading anaemia. Ck out the "phlebotomy anyone?" & "iron metabolism panels should be first" threads. There is also lots of info on the hemochromatosis.org & ironloading.org sites. This intrigues me a little for reasons I won't bore you with! But have a look - maybe your doc might have an interest in some of this??
I used to live near GP, in fact I saw an optometrist in GP...
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

Postby Cece » Sun Jun 06, 2010 7:49 pm

garyak wrote:This neurologist claims ( through his own research ) that " increased iron in the MS brain is an accumulation ( for some reason ) of iron normally found in the brain and is different than iron that would be found there if it's source was reflux of blood from jugular veins".

Here's what Dr. Sclafani had to say about iron on April 11th:
drsclafani wrote:The theory, and only a theory, about iron deposition in ccsvi is that the luxuriant vicarious redistribution of blood flow away from the obstructed veins through the brain and out collateral veins is such that the blood brain barrier is compromised and rthis results in leakage of red blood cells (iron richc blood vessels) into the brain. Theoritically these lead to iron deposits and hemosiderin depositis in his brain. . This iron ultimately breaks down and leads to iron deposits.

So the type of iron in the brain left by blood would be hemosiderin...which is not the form of iron found in the brain in MS...but there is a way for hemosiderin to break down and become the type of iron deposits found in the brain in MS? Any hematologists here, by chance? Anyone know what form of iron IS found in the brain in MS?

Ok, he addressed it again a few days later, at 3 am in the morning, which would get him the award for dedication if he didn't already have it just for being here:
drsclafani wrote:i like the concept that iron gets into the brain via diapedesis of red blood cells across the venular walls that are damaged by vicarious luxuriant perfusion that occurs with ccsvi. When red cells die, they leave behind hemoglobin that gets degraded into hemosiderin that ultimately also breaks down. ADmittedly there are probably other reasons that iron gets in to the brain too.

hard to remember at 3 in the morning!

So: hemoglobin breaks down into hemosiderin which breaks down into...?

edited to add:
from wikipedia: "Much of the resulting important breakdown products are recirculated in the body. The heme constituent of hemoglobin are broken down into Fe3+ and biliverdin. The biliverdin is reduced to bilirubin, which is released into the plasma and recirculated to the liver bound to albumin. The iron is released into the plasma to be recirculated by a carrier protein called transferrin." http://en.wikipedia.org/wiki/Red_blood_cell

FE3+ is ferric iron, Fe2+ is ferrous iron.

So the hemosiderin breaks down into ferric iron...
Last edited by Cece on Sun Jun 06, 2010 11:01 pm, edited 1 time in total.
"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
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Jun 06, 2010 8:12 pm

Sorry to double post but I need to credit AlmostClever's excellent thread index or I wouldn't be finding any of this!!
"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
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users