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thank you trish 317, i used to say my prayers once a day but now i say them all day long. i have never cursed and prayed so much as since i got this miserable disease. it can play some real mind games on a person. yet, i like to think i am still sane. but if that space ship wants to land and take me back to where i know i had a life before ms my bags are packed. seriously, wouldn't it be great to get dr.'s like zambonni, scalfino, mehta, noda, castilleo, combineing their knowledge of ccsvi, ctos, tos all in one operating room. HEY DOCTORS I'D BE A GREAT CANIDATE AND LAB RAT--I'M VOLUNTEERING TODAY!! I FIT THE PROFILE I'M A WEIRD CASE NONE OF THE DOCTORS WOULD LISTEN AND NOW IT LOOKS LIKE YOU'RE LISTENING----HERE I AM!!!! """ TALK ABOUT A DREAM TEAM"""

hope the great dr.'s that are testing and treating ccsvi take a look at this. maybe they are

Yes, they are. Dr Haacke has made mention of the need to expand examination of the vascular system for neurologic disorders beyond MS. And hear is what Dr Zivadinov said in the webbinar hosted by the National MS Society, about other disorders:

"...iron is storing not just in MS patient but in Alzheimer, in Parkinson, and in normal people. My personal interest in this new type of research is really beyond MS because I would like to understand the venous function of the central nervous system in relation to aging, in relation to number of neurodegenerative diseases, and my research on iron might be very helpful. Now, the reason, one of the principal reasons why the iron is building in certain structures, nobody knows really the answer but it seems to be that the highest concentration of the ferritin receptors is physiologically present in those structures, and so well, there is excessive iron, that there it's a primary secondary phenomenon or result of, you know, just mitochondria dysfunction and oxidative stress."

http://www.nationalmssociety.org/ccsvi

On the page right is the link to the transcript.

SammyJo wrote:

hope the great dr.'s that are testing and treating ccsvi take a look at this. maybe they are

Yes, they are. Dr Haacke has made mention of the need to expand examination of the vascular system for neurologic disorders beyond MS. And hear is what Dr Zivadinov said in the webbinar hosted by the National MS Society, about other disorders:

"...iron is storing not just in MS patient but in Alzheimer, in Parkinson, and in normal people. My personal interest in this new type of research is really beyond MS because I would like to understand the venous function of the central nervous system in relation to aging, in relation to number of neurodegenerative diseases, and my research on iron might be very helpful. Now, the reason, one of the principal reasons why the iron is building in certain structures, nobody knows really the answer but it seems to be that the highest concentration of the ferritin receptors is physiologically present in those structures, and so well, there is excessive iron, that there it's a primary secondary phenomenon or result of, you know, just mitochondria dysfunction and oxidative stress."

http://www.nationalmssociety.org/ccsvi

On the page right is the link to the transcript.

Thanks, SammyJo! I watched the webinar but, at that point, I was just beginning my research into it all.

Bloody interesting. Excellent find!

[quote="Boreas"][quote="SammyJo"]I have friends with Parkinsons who are getting scanned per Dr Noda's theroy about CTOS. Will post everyone when I hear the results.[/quote]

What I'd like to know is: Do people ever suffer from both conditions? MS [i]and[/i] Parkinson? Has ever anybody heard about a person as unfortunate as that?[/quote]


YES, I HAVE A FRIEND WHO HAS BOTH. IT IS VERY UNFORTUNATE SHE SHAKES ANDS NEEDS 24 HOUR CARE BECAUSE SHE CANNOT FEED HERSELF. BUT SHE IS VERY ACTIVE. SHE BELONG ON SEVERAL BOARDS AND TRAVELS TO ALBANY AND WASHINGTON AND ADVOATES FOR YOU AND ME.

sammy jo, i have been following the iron overload research. even had my iron levels tested. my pcp said they were ok but the iron overload inst. said they were a little high. best way from what i read is old fashioned blood lettting. tried to get a doc that treats hemochromatosis to do it but he said my levels were not high enough. wherever you have iron dep. that's where you have trouble. if in liver -liver goes bad-pancrseas -pancreas goes bad etc. our deposits are in brain and probably spine thus neuro. problems. i think they said vericose veins in legs have iron dep. so to me it seems wherever you have slow or messed up blood flow whether it is a genetic mess up or an accident related or muscles too tight it seems to leave iron and who knows what else. bad blood flow anywhere is no good. so it could be many problems could be called ccsvi in a sence. we have ccsvi or ctos that is causeing our bad stuff. this is just what i think doesn' make it true. i think zambonni opened a can of worms but they are very good worms!!

I wrote this in another thread:


Acheron
Getting to Know You...


Joined: Jan 10, 2010
Posts: 15

Posted: Sun Apr 11, 2010 1:22 pm Post subject:

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Last Friday my sister visited Dr.Castillo in Madrid, who performs surgery to correct CTOS. I was there with her talking to him. As he explained to us, his theory is the one developed by Dr.Fernández Noda.

In the last 20 years, he has found that 70% of the MS patients that he has evaluated using eco-doppler technology, have a vascular CTOS, where the muscle scalene push the vascular structure (especially the vertebral artery) and causes blood flow problems to and from the brain.

To solve the problem, they perform surgery to cut part of the scalene muscle to liberate the opresion to the vascular structure. Many patients have been treated using this technique, I tracked and talked to some of them and the results are astonishing for most of them.

I don't know if this doctor's theory is correct, buy I think he is onto something. Besides, he seemed honest. He checked my sister's neck and diagnosed a clear CTOS, but he didn't recommend surgery as she is in good shape and has no symptoms of ms at the moment (dx 10 years ago).

Acheron wrote:I wrote this in another thread:


Acheron
Getting to Know You...


Joined: Jan 10, 2010
Posts: 15

Posted: Sun Apr 11, 2010 1:22 pm Post subject:

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Last Friday my sister visited Dr.Castillo in Madrid, who performs surgery to correct CTOS. I was there with her talking to him. As he explained to us, his theory is the one developed by Dr.Fernández Noda.

In the last 20 years, he has found that 70% of the MS patients that he has evaluated using eco-doppler technology, have a vascular CTOS, where the muscle scalene push the vascular structure (especially the vertebral artery) and causes blood flow problems to and from the brain.

To solve the problem, they perform surgery to cut part of the scalene muscle to liberate the opresion to the vascular structure. Many patients have been treated using this technique, I tracked and talked to some of them and the results are astonishing for most of them.

I don't know if this doctor's theory is correct, buy I think he is onto something. Besides, he seemed honest. He checked my sister's neck and diagnosed a clear CTOS, but he didn't recommend surgery as she is in good shape and has no symptoms of ms at the moment (dx 10 years ago).

Do you have MS? Are you looking into this too?

Sounds interesting

Has he published on this?

Vascular reflux in MS patients! Imagine that!!

Daisy3 wrote: Do you have MS? Are you looking into this too?

Sounds interesting

No, I don't. My sister does. Many patients are reporting excellent results from CTOS surgery in Spain. I believe that some people have jugular veins stenosis, others CTOS and some have both conditions. Probably that's the reason why there was a group that tested negative at Buffalo Study; this group should have been tested for CTOS.

We spoke of that a few weeks ago. In 2002, I was on two forums where people talked of the scalene surgery. I've lost the link of the Argentinian forum, but I still have the link of the balearic one. There are good explanations in the second message. It's almost all in Spanish, but there is a paragraph in English at the beginning of the message.

http://abdem.mforos.com/474058/2065490- ... leno-ctos/

In that time, the surgeries were done in Madrid by two surgeons. 1600 persons had been operated. The surgery existed since the beginning of the 1980's. Look at the references at the end of the 2nd message. There are many papers in English.

I cannot remember what happened exactly, but the surgeries were stopped.

Since last March, CTOS surgery is offered in Chile (Santiago). A number of Chileans have already been operated, but they have accepted too patients from Spain and from other south-american countries. It seems that the CTOS surgery is also offered in Japan.

I have read a text written by one of the surgeons yesterday night. He says that some MS patients are dx'd with refluxes because of a stenosis of a jugular vein; others have arterial problems. He says say that the CTOS surgery is more invasive, but permanent. It's very interesting to read. It's on Facebook, in the discussions of a group launched by the first man that has been operated last March. That group has now 2080 members. There is a lot of interesting information in their discussions.

From what I have read there, all MS patients tested have CTOS. I'm now trying to find news of people that have been operated at the beginning of 2000's. If there were 1600, it should be possible.

An interesting fact : people have CTOS surgery and say they have been liberated. They say they still don't have the CCSVI treatment in Chile.

Acheron wrote:

Daisy3 wrote: Do you have MS? Are you looking into this too?

Sounds interesting

No, I don't. My sister does. Many patients are reporting excellent results from CTOS surgery in Spain. I believe that some people have jugular veins stenosis, others CTOS and some have both conditions. Probably that's the reason why there was a group that tested negative at Buffalo Study; this group should have been tested for CTOS.

Now I am really confused. But at least there is another option if CCSVI does not work.

i totally believe that we could have ctos or ccsvi or both. it just makes sence. bad blood flow whether artery or veins is not good. i am still trying to get tested and treated for ccsvi as many many others. it's been a yr. since i first started pursuing this. i am a good bit worse. it's not like a lot of us are physically and financially able to hop on a plane and go all over the world to get treatment. i did send the info. about ctos to one of the doctors that is doing the ccsvi about 2 mo. ago. hope he got to look at it. i just talked to another place about it. my biggest fear as others have is that this total bs that is going on to keep the treatments from us is going to make it too late for many of us. but, i just keep praying something gives soon. then i pray that there are some doctors that are gonna pop up and say this all makes sence and we should testing for both ccsvi and ctos and treating them both if needed. it could and should be done anywhere. it's not like we are trying to get a brain transplant.

sonia52 wrote: In that time, the surgeries were done in Madrid by two surgeons. 1600 persons had been operated. The surgery existed since the beginning of the 1980's.

I cannot remember what happened exactly, but the surgeries were stopped.

Sonia, one of these two spanish surgeons is still performing the CTOS surgery in Madrid.