Parkinson and MS cured by surgery (but not CCSVI)

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

Postby Algis » Wed Aug 11, 2010 8:55 pm

The Doppler technician will also be using the Noda-Recarte Doppler protocol for CTOS/CTNVS which Dr Recarte emailed to me.


Is this protocol available somewhere?

Thanks :)
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Postby UncleB » Wed Aug 11, 2010 9:26 pm

Algis,

Here is the protocol that Dr Recarte sent me. It was translated from Spanish by a friend of mine..

“You must do a vascular doppler of both vertebral arteries looking for the difference in flow between the positions with arms along the body and with arms above the head.
Ideally the patient would be seated but it's a difficult technique because of the position of the probe; so one explores the patient lying down with the head semi-elevated (anti trendelembourg position) since this position is easier for the patient, the exploring-doctor and the placement of a vascular doppler probe..
We chose the power doppler mode because it is more visual, and then we went to the normal mode for the evaluation of changes in flux.
One must look at and evaluate especially the change in velocity in the flow of blood in both positions of the arms since those are the positions that close the thoracic operculum (opening).”

Here is the original Spanish:
Hay que realizararm un doppler vascular de ambas arterias vertebrales viendo el cambio de la velocidad de flujo entre las posiciones de brazos a lo largo del cuerpo y con los brazos elevados por encima de la cabeza.
Lo ideal seria realizarlo con el paciente sentado, pero es una tecnica muy difícil por la posición de la sonda, con lo que se explora al paciente tumbado en una posición semielevada la cabeza (anti trendelembourg), ya que esta posición es mas facil para el paciente, para el medico-explorador y para la colocacion de una sonda vascular doppler.
Nosotros elegimos el modo power doppler por ser mas visual, y después pasamos al normal para evaluar si hay cambios de direccion del flujo.
Hay que ver y valorar, sobre todo, los cambios de velocidad de flujo de sangre en ambas situaciones de los brazos, ya que esas posiciones son las que cierran el operculo toracico.
Un saludo.

Here is what my Doppler technician replied to Recarte’s protocol:
“The translated protocol you have provided seems like something similar to a traditional TOS (thoracic outlet syndrome) test we commonly provide except: this protocol looks at the vertebral arteries instead of arteries in the arm. It makes sense and of course we can to that test.”

Bruce
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Postby Algis » Wed Aug 11, 2010 9:32 pm

Thank you Bruce :) I'll ask to try this next time.
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Postby whyRwehere » Wed Aug 11, 2010 11:58 pm

I took my husband to see Dr Recarte in early July. Basically, he found a problem, mainly in the right side (as opposed to my husband's original left Jug problem, which was ballooned last Autumn). He felt this could be operated on, but since we lack 10,000€, we will have to stick with his other suggestions, which were eating fresh fruit, taking the usual supplements (C, D, Omega 3's) and doing repetitions of exercises to keep the legs moving.
My husband already does that stuff, plus he has started seeing a chiropractor, but I have not found a chiro who is an upper cervical expert in France, so I am still working on that. The one he does see, is very nice and relaxing, so I think it is money well spent...
I would say yes, the protocol is probably very similar to the normal TOS tests. When my husband's right arm was held high, his pulse in that arm dropped significantly. The doctor ran a lot of blood tests, which were all fine and did several dopplers in the office. He was very nice and seemed to know what he was doing.
Does anybody know how the people who had this operation in Chile are doing? Not that I am planning to go there, I just want to know the effect of the surgery on their MS.
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Postby Zeureka » Thu Aug 12, 2010 6:15 am

Thanks a lot for all of you here about this interesting info.

When I see my CCSVI Dr for check-up end September in Belgium I will try to ask him if he has heard about these CTOS developments in Chile. And lets see whether they could offer (and whether he thinks worthwile) if I ask to pay for a standard TOS doppler test of the neck arteries. They might at this stage not know or recommend in relation to CCSVI / MS but always good to ask.
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Postby frodo » Thu Aug 12, 2010 7:20 am

whyRwehere wrote:I took my husband to see Dr Recarte in early July. Basically, he found a problem, mainly in the right side (as opposed to my husband's original left Jug problem, which was ballooned last Autumn). He felt this could be operated on, but since we lack 10,000€, we will have to stick with his other suggestions, which were eating fresh fruit, taking the usual supplements (C, D, Omega 3's) and doing repetitions of exercises to keep the legs moving.
My husband already does that stuff, plus he has started seeing a chiropractor, but I have not found a chiro who is an upper cervical expert in France, so I am still working on that. The one he does see, is very nice and relaxing, so I think it is money well spent...
I would say yes, the protocol is probably very similar to the normal TOS tests. When my husband's right arm was held high, his pulse in that arm dropped significantly. The doctor ran a lot of blood tests, which were all fine and did several dopplers in the office. He was very nice and seemed to know what he was doing.
Does anybody know how the people who had this operation in Chile are doing? Not that I am planning to go there, I just want to know the effect of the surgery on their MS.


There is a facebook group about CTOS in Chile, but as far as I have read, there are more questions than answers. Maybe you can try to read it with an automatic translator:

http://is-is.facebook.com/topic.php?uid ... opic=14604

EDIT: By the way, if you write on google "syndrome de traversée thoraco-cervico-brachiale" you will find a lot of people in France fixing normal TOS. Maybe some of them can help you, and your insurance will pay for it.
Last edited by frodo on Thu Aug 12, 2010 7:33 am, edited 1 time in total.
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Postby whyRwehere » Thu Aug 12, 2010 7:26 am

frodo wrote:
There is a facebook group about CTOS in Chile, but as far as I have read, there are more questions than answers. Maybe you can try to read it with an automatic translator:

http://is-is.facebook.com/topic.php?uid ... opic=14604


Yes, I've seen that and google translated it, but they seemed to stop talking about it months ago...I was wondering what happened.
I found this link interesting
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Postby frodo » Thu Aug 12, 2010 7:47 am

whyRwehere wrote:
frodo wrote:
There is a facebook group about CTOS in Chile, but as far as I have read, there are more questions than answers. Maybe you can try to read it with an automatic translator:

http://is-is.facebook.com/topic.php?uid ... opic=14604


Yes, I've seen that and google translated it, but they seemed to stop talking about it months ago...I was wondering what happened.
I found this link interesting


why do you find it interesting? they speak about the normal TOS and there is a lot of places with that information, even inside France. Take a look here:

http://www.maitrise-orthop.com/viewPage.do?id=1057
http://forum.aufeminin.com/forum/sante2 ... hiale.html
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Postby eyebrow » Thu Aug 12, 2010 7:49 am

I have only just started reading this thread, although its been here for some time. A very interesting link. I have MS. My father had Parkinson's.
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Postby whyRwehere » Thu Aug 12, 2010 9:43 am

frodo wrote:
why do you find it interesting? they speak about the normal TOS and there is a lot of places with that information, even inside France. Take a look here:

http://www.maitrise-orthop.com/viewPage.do?id=1057
http://forum.aufeminin.com/forum/sante2 ... hiale.html


Interesting, because it has some good diagrams and talks about TOS, which is pretty much the same idea: compression by a rib or the scalene muscle. I think the difference comes to realising how much the compression affects the patient, as in NOT only the arm.
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Postby NotFound » Thu Aug 12, 2010 11:59 am

sbr487 wrote:
You must have seen posts that compare CCSVI to bee sting etc.

.

He-e-y! As somebody who had bee stings I can attest - they DO indeed relieve the inflammation!

As far as CTOS - thank you to all who contributed. I am an MSer with no CCSVI, so could CTOS be my answer?

I sure hope so. It's better to hope than not :)
Last edited by NotFound on Thu Aug 12, 2010 1:33 pm, edited 1 time in total.
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Postby Nunzio » Thu Aug 12, 2010 12:30 pm

I noticed Dr. Sclafani in his last video from the conference in MI presented a case were there was an indentation on the jugular vein due to a muscle pushing on it.
He mentioned that a stent should work in that case or surgery to release the muscle.
You can see this in the following video at min 2:30.
http://www.youtube.com/watch?v=8RSs30vjKv8&feature=channel
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Postby frodo » Thu Aug 12, 2010 2:19 pm

Nunzio wrote:I noticed Dr. Sclafani in his last video from the conference in MI presented a case were there was an indentation on the jugular vein due to a muscle pushing on it.
He mentioned that a stent should work in that case or surgery to release the muscle.
You can see this in the following video at min 2:30.
http://www.youtube.com/watch?v=8RSs30vjKv8&feature=channel


Wow. It would be nice to see both worlds joining forces. Has anybody made Dr. Scalfani aware of the CTOS theory? Maybe it could be worth it to post it in his thread.
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Postby Zeureka » Thu Aug 12, 2010 3:22 pm

frodo wrote:
Nunzio wrote:I noticed Dr. Sclafani in his last video from the conference in MI presented a case were there was an indentation on the jugular vein due to a muscle pushing on it.
He mentioned that a stent should work in that case or surgery to release the muscle.
You can see this in the following video at min 2:30.
http://www.youtube.com/watch?v=8RSs30vjKv8&feature=channel


Wow. It would be nice to see both worlds joining forces. Has anybody made Dr. Scalfani aware of the CTOS theory? Maybe it could be worth it to post it in his thread.
Yep, Dr Sclafani is aware of Dr Noda and very interested :)
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Postby Mutley » Fri Aug 20, 2010 12:43 pm

Nunzio wrote:You can see this in the following video at min 2:30.
http://www.youtube.com/watch?v=8RSs30vjKv8&feature=channel


Hi Nunzio,

Thanks for the link.

Any idea why I can't it to work though? it comes up and says that the video is private....
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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