What a wonderful trip!

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

What a wonderful trip!

Postby Jamie » Sun Sep 27, 2009 8:26 pm

Hi All!

We went to Stanford on Thursday. Mel had her MRV, MRI. No need for an ultrasound now apparently.

Blood work too.

Met with Dr. Dake, he was just back from Lisbon and is heading over to Liverpool (my home town) in October.

Mel's stents look great, the flow is good and she can stop all the drugs apart from a baby aspirin forever.

Mel still feels great, so much so when she had to fill in the MS quality of life questionnaire she really couldn't think of anything negative to put in. Plus, and more importantly in my mind she said 'it's weird usually I can real off a list of things or am very aware and mentally logging each twinge but I've stopped doing that - so really had to think hard'.

It's all brilliant news.

Dr. Dake and Zamboni have applied for a grant that is for transatlantic cooperation - $5m ! Which will help a study they are trying to put together.

They are taking outside advice but they are recommending a 'fake' stent install with the control group but Dake (rightly in my opinion) thinks that is unlikely to work especially with the internet and 'that site you are all on!'. It would be obvious if you'd have had the intervention or not, mostly to the excruciating pain!

He is finding dramatic results with all 'Mel-type' patients. It's not so good for SP/PP but no one seems to have progressed since intervention but its so early and he makes no claim to being an MS expert. He's desperate to get Neuros on board.

Both in Europe and with him people are getting 'trapped nerve' type pain after the op. It's a real issue and painful. The good news is eventually the nerve seems to grow round the opened vein and the pain goes away. This can take weeks or even months.

It is so hard because everyone is learning as they go along.

Dake did say that its puzzling him that he's not finding the azygous issues that Zamboni is but is now more aware of 'flow' than blockages and he did say that the European ultrasound/doppler technology is 'far ahead' of what is in the US so its a hinderance to us here.

He's hopeful that the transatlantic grant can help with knowledge and technology share (his advanced stents/technique, Zamboni's knowledge of flow, doppler and diagnostics).

It's all very exciting but no miracles are on offer.

So, celebrating the good news (and some professional good news with our company, with yours truly in charge of the bid, winning our biggest ever contract - the award was announced the same day!) we headed up to Napa for a bit of wine tasting and then to San Francisco to wander round and watch the sun go down over the bay with a glass of wine or ten.

Well wishes to everyone.

P.S

No MRI results back in time, I'll follow up but don't expect changes, Mel's been stable since HiCy.

P.P.S

Lew - the technique worked!!
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Postby cheerleader » Sun Sep 27, 2009 9:00 pm

Jamie...
thanks for taking the time to fill us in. I'm just so happy for you and Mel...really ecstatic. It's all well-deserved, and we celebrate with you both.

Glad Dr. Dake and Dr. Zamboni are going to apply for that grant together...between the two of them, there's a winning combination of endovascular expertise and flow knowledge. I love it when the docs work together! I also agree that a blind trial seems difficult, if not impossible...and kind of cruel (to undergo the venous catheter without treating? Yikes!) I think a study combining SWI-MRi and oligoclonal banding in CSF before/after will provide the "proof" everyone wants.

The Mel and Jeff types are the most affected early by stenting...because they had the least amount of brain tissue damage...(worth noting that both Jeff and Mel had 20 lesions each, yet hardly any disability-it's not about the lesions, people!) BUT I know Zamboni's team has seen healing in those further along. Jeff's our oldest stento-teer at 4 months. That's nothing in MS time. Zamboni's team saw changes after 18 months in the more progressive patients.

The accessory nerve pain is going to be an issue. It's been bad for the folks with high stents in C1-3, because that's where the accessory nerve travels across the IJV. If the area is tight enough to constrict a vein, opening the vein takes away space from other residents. Jeff had bad pain for a month or so, but others like Marie and Lew have had more serious issues. Dealing with this will have to become part of the protocol. We all owe Marie, Lew and those with complications our heartfelt thanks. The doctors will learn from their bravery.

wow...it's only been since April when we first met Dr. Dake. Imagine where this may be in another 6 months.
...whatever technique Lew shared with you...glad it worked :wink:
congrats,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Sun Sep 27, 2009 9:06 pm

Cheer, you're absolutely right, and that was what I was trying to (unsuccessfully) say - Dake's been doing this since when, April?

Impossible to see what's what.

I also suspect like in stroke patients, recovery will be different for all.

But please please remember, the chance of 'just' halting progression is far ahead of anything on offer for PP or SP patients right now and I'm sure in the coming months and years the data and truth will out one way or another.

Lets all hope for the best!!

P.S

Thanks! ;)
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Postby MrSuccess » Sun Sep 27, 2009 10:12 pm

thanks for the trip report , Jamie. This is great news. It is so very good to hear how well your Mel is doing.

What great news to read that Dr.Z and Dr.D are teaming up ! Let's hope they get their funding ASAP , and keep the ball in the air.

That reference to SP/PP is good news ...but ...as with the RR patients , has enough time elapsed to state....no further progression ?

That is what I'm looking forward to reading when Dr.Zamboni provides the full Liberation results. Those patients are the well ahead of Dr. Dakes.

Personally , I think the recovery process will mirror the disability process. Ever so slow. But going in the right direction . Just as when you suffer a bad cut or a broken bone ....your body will repair ...but never as fast as you would like.

Press On



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Re: What a wonderful trip!

Postby Loobie » Mon Sep 28, 2009 3:48 am

Jamie wrote:P.P.S

Lew - the technique worked!!


Glad to hear it..told you I was devious!
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Postby CureOrBust » Mon Sep 28, 2009 5:04 am

Jamie wrote:... but they are recommending a 'fake' stent install with the control group but Dake (rightly in my opinion) thinks that is unlikely to work especially with the internet and 'that site you are all on!'. It would be obvious if you'd have had the intervention or not, mostly to the excruciating pain!

cheerleader wrote: I also agree that a blind trial seems difficult, if not impossible...and kind of cruel (to undergo the venous catheter without treating? Yikes!) I think a study combining SWI-MRi and oligoclonal banding in CSF before/after will provide the "proof" everyone wants.
I personaly agree with both of you, however...

When I was looking into Campath as a posibility, there was a blinded trial, where 1 arm got campath, 1 arm got rebif and another arm got saline solution. When I scoffed at the idea that the patients wouldn't be able to tell they were on saline, the researcher said I would be suprised how many in the saline arm had injection reactions that would be expected with Rebif.

AND I personally think its cruel to make someone inject 3 trimes a week with the placebo.

So, I wouldn't put anything past a trial design.
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Postby Rokkit » Mon Sep 28, 2009 7:02 am

I'm trying to figure out why someone would be motivated to participate in such a trial. If the stenosis needs to be fixed on it's own merit, then I think people will just find someone to treat it and skip the whole sham stent idea.
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Postby Loobie » Mon Sep 28, 2009 7:29 am

It will get 'better legs' if it has a blinded trial as evidence that it works.
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Postby magoo » Mon Sep 28, 2009 9:56 am

Such great news! Congrats and enjoy Napa:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mrhodes40 » Mon Sep 28, 2009 1:15 pm

Jamie, oh my I am so pleased for you. thank you so much for taking time to report to us how things are going with Mel. Suppose she could get the gang at the office in charge of the high t MRI to do another picture?

Congrats on the big contract!! You can put something in the baby fund, eh? :wink:

I was so upset when I read of sham surgeries I wanted to weep.

Cheer said
I also agree that a blind trial seems difficult, if not impossible...and kind of cruel (to undergo the venous catheter without treating? Yikes!) I think a study combining SWI-MRi and oligoclonal banding in CSF before/after will provide the "proof" everyone wants.
I second that. It is not usual to placebo control surgical trials because you can't really do it well-- it is difficult to make someone feel as if they had an operation when they did not-- so usually surgical procedures are just done to see if they work perhaps comparing an old technique to a new one.

Generally there is some kind of agreement that the issue is not "do we restore function to this (whatever) with surgery or not"....

the issue is usually "does technique A restore the function better than technique b"

It begs the question: was there ever a trial on heart patients where some had balloons in their clogged arteries and some had "sham" procedures?

would the cardiovascular community sanction such a trial?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Jamie » Mon Sep 28, 2009 4:52 pm

I know, the good thing is Dr. Dake agrees.

He said 'how could I go in, find something and leave it there?'
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Postby CNClear » Mon Sep 28, 2009 10:03 pm

Good to hear Mel is doing great! :D

As far as the trial goes, I would think that would violate the part of their oath that says, "...first, do no harm..." I cant imagine anyone participating or a dr 'just looking.' I dont think that would be protocol, in any case...

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Postby MrSuccess » Tue Sep 29, 2009 8:51 am

Placebo surgery ? 8O

I think something got lost in translation between the doctor's office and this message board.

If not ........I'm hoisting a RED FLAG. And ringing a bell.

Perhaps our intrepid researchers can get confirmation or not on this important issue.

Where is ' the devils advocate' when you need him ?




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Postby Jamie » Tue Sep 29, 2009 12:45 pm

It didn't get lost in translation, hence me bringing it up.
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Postby Cyclops » Tue Sep 29, 2009 12:49 pm

Jamie,

Great news that Mel is doing so well - long may it continue.

You mentioned Dr D is off to Liverpool - any idea who he's off to see? It would be great if we had some British docs on board.

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