Stanford Relapses?

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

Postby Katie41 » Sat Feb 20, 2010 1:25 pm

Joan, I'm so sorry to hear about your dad. So glad you were able to be with him at the end. Those can be very special times and memories. Take care, Katie41
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Postby catfreak » Sat Feb 20, 2010 4:22 pm

Hey all,

I am also a Stanford stenter of Dr Dakes. I have had no relapses or progression. I too will say I still have MS but I am so much better than before stents. I will be 6 months out March 3rd.

I have had more issues with Tysabri than MS to I had my last infusion February 1st. No more of those for me!

Joan, we are sorry about your Dad. Please take care of yourself.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mrsilkykat » Sat Feb 20, 2010 9:47 pm

Joan, our deepest sympathies go out to you. I hope your dad's final days were easy and peaceful for everyone.

Re: Stanford: I just had an MRVenography at Stanford last Tuesday using Dake's Protocol with a radiologist who worked with Dake on stenting. I haven't seen the report yet but he said the intracranial looked clean. Just a flattening of the LIJ at C6-7 and some collaterals at the back on the right. He said compared to the patients they have operated on, my case is mild. :( And the azygous was difficult to see. He said that's not unusual in a lot of patients. He was very clear that he could only give me a descriptive account-no diagnosis-said they don't know how much blockage is involved with "normal" patients.

This was email. I'll have an appointment with him in early March where I hope he can be more candid. Anyway, I'll learn more about my own situation and can at least ask some questions about Stanford's current thinking.

I think they are being very circumspect right now. They may be waiting for Buffalo's report before making any commitment. Or there may be a lot of internal politics. I know my neuro who is tight with the UCSF docs ridicules CCSVI and Zamboni, Dake & Zivadinov. I won't even talk to her about CCSVI. I have another neuro for that.
Kat
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Dr. at Stanford

Postby sk8ter » Sun Feb 21, 2010 2:04 pm

Can you tell me or PM me the radiologist that just did your ultrasound that worked with Dr. Dake? Is there anyone in Southern California that does this at USC or UCLA< UCSD, UCI? I had Dr. Collins test that is a MRV,MRN,MRA for Thoracic outlet syndrome and it showed a much smaller internal left juglar thatn my right. Compression of azygous vein too. They just say do PT....huh?.....I am losing my hands and ability to walk..... Any help is appreciated.
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Postby SammyJo » Sun Feb 21, 2010 8:05 pm

No relapse since my stent procedure at Stanford 10/29/2009, just steady progress on recovery.

I just posted a status update in my blog, and got the email subscription & RSS feed working. http://healingpowernow.com/blog/

I'm committed to keeping my case history in the tracking thread I've got here at TIMS updated once a month, and hope everyone that feels up to it does as well, no matter where they get the procedure done.

I hope that my status will not matter once everyone with MS has access to the procedure, but in the meantime I want to share my details in case it helps others who want to know how this treatment works for MS.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby MrSuccess » Sun Feb 21, 2010 11:24 pm

As far as we know Dr. Dake's team has performed around 65 :idea: or so CCSVI investigations and corrective repair procedures. There would have been more had that stent not migrated . I am not sure exactly what caused this to happen. I suspect a faulty stent . It could happen.

In the rush to judgement , our hero Doctor Dake took some severe criticism by certain people here at TIMS. :evil:

Stopping the program and taking a hard look at all the data at that point has turned out for the better.

Blending Stanford , Buffalo , Ferrara , Poland , and others data and CCSVI results together only strengthens the concept. :idea:

It is imperative that these investigators continue to collaborate and advance Dr. Zamboni's BIG IDEA. Other brilliant research scientists seem to be joining them in a slow but steady stream.

Relapses are unfortunate but needed to prove the CCSVI-MS connection.

Dr. Zamboni records in his report the 4 hours to 4 day's it took those who relapsed ... to recover . This is the most incredible information in my opinion. Did I not read of Dr. Dake performing followup stent or angio repairs that produced good results ? :?:

It does piss me off to read comments posted slagging Dr. Dake , Dr. Zamboni , and Dr.Zivadinov or other CCSVI researchers , who deserve better. :evil:

Two things to remember , TIMS members. First thing is to accept that each CCSVI-MS investigator has a TEAM of professionals assisting them in their research . The roll call of CCSVI-MS researchers is large.

Two. When the Health Insurance people start to show up and ask questions ....you know you really have something at hand.

THEY not you , pay for those expensive MS drugs. And you can bet they are following this CCSVI-MS story with great interest . And they want nothing better than something to come along that gets them out of buying expensive CRABS.

That's how I see it at least .......


Mr. Success





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Postby gibbledygook » Mon Feb 22, 2010 6:44 am

It's been 8 months since I had the stent operation and I am now 21 weeks pregnant. Since conception I have felt worse in my walking, bladder and bowel. Indeed my walking is now worse than it was before the stent operation. However since conception I switched from drinking several cafe lattes a day to cacao. I probably consumed about 60grams of 100% cacao daily until about a week ago. As soon as I stopped the cacao my symptoms improved and my walking has slowly been getting better as has my bladder control despite my expanding uterus. When you look at cacao on pubmed you will find articles discussing its immune-modulating qualities, its iron richness and its considerable actions on the vasculature. Pregnancy itself has a very significant effect on the vasculature. I think for these reasons my progress since the stenting is very atypical! If anyone is planning on getting pregnant I would not consume large quantities of cacao/chocolate, particularly 100% cacao. Having one cafe latte a day isn't so very dangerous to the foetus. :?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby prairiegirl » Mon Feb 22, 2010 10:33 am

I just want to thank the CCSVI "pioneers" for continuing to take the time to post information for others, even though you might well have chosen to simply move away from these forums. Your updates and the information you share is so valuable! Thanks to all of you!
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Postby Arcee » Mon Feb 22, 2010 10:42 am

7 months out for me and no relapse. My symptoms have nearly totally disipated as well. Still early to know for sure, but really, really good so far!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CRHInv » Mon Feb 22, 2010 12:08 pm

As far as we know Dr. Dake's team has performed around 65 or so CCSVI investigations and corrective repair procedures.


When I was talking to Dr. Dake for my two month followup he told me that I was patient #40 out of 46. This was 1/21/10.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby MrSuccess » Mon Feb 22, 2010 7:38 pm

Hi CRH - I read on here 65 . Let's go with 46. Maybe 65 was the goal ???

Regardless .....Dr. Dake has plenty of case studies in his possession .

Next time you see Dr. Dake can you ask how many restenosis he has handled ?

Any inkling from Dr. Dake & Team what's next ? I understand he has applied for CCSVI funding .

I think those that hope and wish for CCSVI failure are going to be sadly disappointed when Dr. Dake and Dr. Zamboni get their study funding . :!:

Keep us posted CRH



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Postby Rose2 » Fri Feb 26, 2010 4:47 pm

Great!!
I was just looking around for someplace to post how well I am doing. THIS IS JUST UNBELIEVABLE!!!!!!
I never think MS anymore. That is the truth. I am stronger everyday, which has more to do with me having sat on my butt for 10 years and being out of shape.
Honest! I am so grateful to have gotten in under the wire.
The long term MS issues I did still have after CCSVI, like my burning right cheek, that have been there since 2001, are better if not gone.
This is God's truth.
I figured it was damage done and never expected it to go away.
Well, guess what. I don't have anymore MS symptoms.
AND YES, KNOCK ON WOOD. But I am also not waiting for them like before cuz I never think about them.
My mind is free of it. And this is a huge statement!
I never think of MS first and I never turn down an invitation.
Another big BD party tomorrow and I have known for weeks that I WILL be there. No more worrying about the day to day crap. No more waking up feeling like crap. No more crap!!!!!!
I feel as free as a bird. I pray for this to continue and for everyone who wants this procedure to have the availability.
Sincerely, Rose
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wow report

Postby jak7ham9 » Fri Feb 26, 2010 5:26 pm

rose your trpoert is heaven to me! zFabulous
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Postby CRHInv » Fri Feb 26, 2010 5:43 pm

Rose! I am so happy to hear your news!
I was talking to another patient the other day and we agreed on the same thing. It is amazing to be able to plan!
Again, I am so pleased to hear all of your improvements!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby shye » Fri Feb 26, 2010 7:13 pm

I join with prairiegirl in expressing gratitude to all of you who are continuing to post about your current experiences re: liberation.
It is a generous gift to the rest of us. Thanks..
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