Relapse....try again.

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

Relapse....try again.

Postby Donnchadh » Wed Mar 31, 2010 8:21 am

After achieving some dramatic improvements in my MS symptoms within only 5 days of my liberation procedure, starting on the 6th day it reversed. I have had secondary progressive MS for twenty years.

Presently all of my pre-procedure MS symptoms have returned. The exact same problems, with the same degree of severity. It's as if the procedure didn't happen.

My suspicion is that the internal jugular veins have collapsed back into bilateral re-stenosis.

If ever there was an experiment to test the CCSVI hypothesis, this has to be it. Open up the veins, and MS symptoms rapidly fade away. Close them back up, and the symptoms come roaring back.

The IR used the balloon technique only, and did NOT use stents. I am his second MS patient.

What I am facing now is another echo color Doppler ultrasound, and a MRV. The MRV was hard to set up; while there are many MRI machines in "northern" Illinois most of the radiologists do not know how to conduct a MRV exam or how to read the results. My IR contacted a hospital and gave them the specific CCSVI protocol for a MRV.

The MRV is scheduled on 5 April, the ultrasound on the 14th. I have a office visit scheduled with the IR on the 21st to review everything.

I am hoping to have him repeat the procedure but using stents this time for a lasting result.

What is a hopeful development is that the facility which gave me the ultrasound now has examined three MS patients for CCSVI, and is very interested in doing more of these tests. When I go there again, I will to attempt to talk to the chief radiologist to see if they would be agreeable to having their name revealed to other MS patients.

I would think that a referral from a GP would be good enough to get an exam, but that is something you would have to determine with your individual insurance carrier.

Dr. Zamboni considers the ultrasound the best diagnostic tool in detecting CCSVI, so having an Midwestern American-sourced ultrasound facility is an important initial step in MS treatment. At least someone would know if they have a venous problem or not. The next step would be to find a IR willing to operate on them.

Donnchadh

ETA: At least, the location of my venous problems were positively located so that isn't a concern AND I know that re-opening them will lead to MS symptom improvements.
Last edited by Donnchadh on Wed Mar 31, 2010 10:19 am, edited 1 time in total.
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Postby cheerleader » Wed Mar 31, 2010 8:46 am

Donnchadh-
Truly sorry for the return of your symptoms. If you have, indeed, restonsied, it is further corroboration of Dr. Zamboni's theory. Sorry this discovery has to come at your expense. Jeff's jugulars closed back up within seconds of ballooning on the table, which is why stents were used. We had no idea (a year ago) it would begin a firestorm of controversy...we just wanted to get his venous return going. And we trusted our doctor's opinion.

It is good to know there is an imaging facility in the midwest pursuing this. I would make sure they know about Dr. Haacke at Wayne in Detroit (ms-mri.com). He is helping coordinate many facilities around the world, collecting data, and could be an asset to them. Best of luck as you pursue this further, and please keep us posted.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby shye » Wed Mar 31, 2010 9:03 am

Thanks Donnchadh for continuing to push for everyone, despite your setback--good of you to be able to be so clear on the issues this presents, and the positive info it relays to the rest of us.
Wishing you all the best in your 2nd round....
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Postby Donnchadh » Wed Mar 31, 2010 9:04 am

cheerleader wrote:Donnchadh-
Truly sorry for the return of your symptoms. If you have, indeed, restonsied, it is further corroboration of Dr. Zamboni's theory. Sorry this discovery has to come at your expense. Jeff's jugulars closed back up within seconds of ballooning on the table, which is why stents were used. We had no idea (a year ago) it would begin a firestorm of controversy...we just wanted to get his venous return going. And we trusted our doctor's opinion.

It is good to know there is an imaging facility in the midwest pursuing this. I would make sure they know about Dr. Haacke at Wayne in Detroit (ms-mri.com). He is helping coordinate many facilities around the world, collecting data, and could be an asset to them. Best of luck as you pursue this further, and please keep us posted.
cheer


In one sense, I am not surprised as the IR and I talked over Dr. Zamboni's paper showing a re-lapse rate of 55% in the internal jugular veins post-procedure.

I gave the facility a print-out of Dr. Haacke's protocol (which I found here!!!) so they are indeed following it.

One thing I am seriously considering suggesting as an addition to this protocol is that any finding of collateral vein formation is highly suggestive of CCSVI.

Donnchadh
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Postby ikulo » Wed Mar 31, 2010 9:39 am

It would be most interesting to gather information from Zamboni's research and differentiate the patients who restenosed and those who did not. Perhaps there are common factors among each group (age, rrms v. spms v. ppms, certain vitamin deficiencies, etc).
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Postby Donnchadh » Wed Mar 31, 2010 9:50 am

ikulo wrote:It would be most interesting to gather information from Zamboni's research and differentiate the patients who restenosed and those who did not. Perhaps there are common factors among each group (age, rrms v. spms v. ppms, certain vitamin deficiencies, etc).


An interesting question....I am sure that CCSVI is going to generate decades of studies.

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Postby TFau » Wed Mar 31, 2010 10:09 am

Sorry to hear about your complication. Sorry that you have to hope for stenoses again!
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Re: Relapse....try again.

Postby Cece » Wed Mar 31, 2010 10:27 am

Donnchadh wrote:If ever there was an experiment to test the CCSVI hypothesis, this has to be it. Open up the veins, and MS symptoms rapidly fade away. Close them back up, and the symptoms come roaring back.


Yes...and it needs to be done with measureable variables so that it can't be dismissed as placebo...which I have no doubt that it is not.

It sounds like once again you are doing everything right, all the way down to having gone local in the first place so that the docs are on hand to deal with restenosis!
"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
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Postby Billmeik » Wed Mar 31, 2010 11:23 am

another interpretation than restenosis is that liberation does not and was never claimed to fix ms symptoms. Just stop progression, so any improvements you saw were placebo.

Hope this is wrong.
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Postby Rokkit » Wed Mar 31, 2010 12:39 pm

Billmeik wrote:another interpretation than restenosis is that liberation does not and was never claimed to fix ms symptoms. Just stop progression, so any improvements you saw were placebo.

Zamboni's liberation study demonstrated improvement in MS symptoms in a large majority of those treated. So I don't think we should say liberation treatment was never claimed to fix ms symptoms.
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Postby Donnchadh » Wed Mar 31, 2010 1:13 pm

Billmeik wrote:another interpretation than restenosis is that liberation does not and was never claimed to fix ms symptoms. Just stop progression, so any improvements you saw were placebo.

Hope this is wrong.


With all due respect, you are completely mistaken if you think my improvements were due to a placebo effect. Or, do also think that the collateral veins on my venogram were just an illusion?

Donnchadh
Last edited by Donnchadh on Wed Mar 31, 2010 1:44 pm, edited 1 time in total.
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Re: Relapse....try again.

Postby ndwannabe » Wed Mar 31, 2010 1:19 pm

I am sorry your symptoms are back :( I hope you get re-tested and re-liberated (or stented) soon!

Donnchadh wrote:
What is a hopeful development is that the facility which gave me the ultrasound now has examined three MS patients for CCSVI, and is very interested in doing more of these tests. When I go there again, I will to attempt to talk to the chief radiologist to see if they would be agreeable to having their name revealed to other MS patients.



This would be so appreciated!
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Postby lifeisgood » Wed Mar 31, 2010 6:00 pm

I, too, am very sorry for the return of your symptoms. It's all the learning curve, and no one would want to be "the one" it happened to.

Glad to hear about the interest of the doctors. We're in the western suburbs and my husband would jump at the chance to see what's going on in his veins!
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Postby newlywed4ever » Wed Mar 31, 2010 7:03 pm

Donnchadh - right from the get-go, I identified with you - therefore, I project my own feelings as yours...so I KNOW that you don't regret getting liberated; of course, you prefer not to have lost the gains you made but you ARE going to find a way to make this work! The glass is half full so keep that positive attitude.
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Postby elyse_peace » Wed Mar 31, 2010 8:48 pm

Donnchadh -
So sorry :( you must backtrack after such a hopeful beginning.
Thanks for posting your difficulties. I am reading as much as I can, as fast I can, trying to figure out what to do myself. This certainly makes me reexamiine the subject of stents.
Best fortune to you as you give it another go.
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