Hi from Jeff, re. my stent treatment at Stanford

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

Postby IHateMS » Tue Jul 07, 2009 12:48 pm

rssugg wrote:Hey yall - is there anyone on the East Coast doing these procedures?


Here is a thread on braintalk http://brain.hastypastry.net/forums/sho ... hp?t=61363
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Postby cheerleader » Tue Jul 07, 2009 1:00 pm

OK...got the official word. Jeff's MRIs look very similar...no progression or new lesions, and not alot of change. Will it take longer for any differences or healing to be seen?...only time will tell.

As far as the stents, we just heard right now that the CT scan picked up some mild narrowing at the bottom of the left stent...so, Jeff will have to remain on the blood thinners until Dr. Dake can see him again in 3-5 weeks for a possible balloon procedure. Jeff's attitude is great, he'll go ahead with the follow-up, but this is a cautionary tale. His right jugular is flowing freely, but the left still has an issue. Jeff is not in danger of clotting, but the left side just isn't doing its share yet. Dr. Dake called it a "tune up." We're glad we live close enough to do this.

Really important to let folks know this...we promised the good, bad and ugly. This isn't a done deal, and there's still alot we don't know about how the individual body will react to a venous stent. This is why followup will be so important. We're not out of the woods by any means. Jeff's venous flow is still much better than before, but it's not perfect. Can it ever be? Maybe yes, maybe no.

wish I had better news, but we need the truth more...
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Tue Jul 07, 2009 1:16 pm

Joan, this is good truth. Jeff is feeling a lot better. Stent tune ups (from my understanding) are fairly common in the cardiac world. And while we all hoped the MRI would look different immediately, people's predictions on this site were pretty tempered. Overall, seems positive and realistic.
Here's wishing Jeff additional progress in the days ahead, and ease as you continue this journey. And continued thanks that you and he took the lead with all of this.
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Postby Ernst » Tue Jul 07, 2009 1:31 pm

This all is so new, so I quess there will be surprises and things to learn - even for top scientists too. In my opinion at least ms research / treatment is on right track. I'm feeling very positive about the future for ms patients.. and positive for Jeff's condition too, no worries :D

best wishes from Finland = santa-claus home :lol:
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Needled » Tue Jul 07, 2009 1:49 pm

Ditto to everything Arcee and Ernest said. And as you said, it's important to know the reality of what's happening. None of us here are interested in the glossy sales brochure version of this. We want to hear real information, and you and all the other Stanford-ers have given that to us. Thank you.
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Postby LR1234 » Tue Jul 07, 2009 1:54 pm

Thanks Joan for the honesty..I agree we want to know the truth for better or for worse. I look forward to hearing the next updates and I hope Jeff continues to feel better and improve symptom wise.
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Postby mrhodes40 » Tue Jul 07, 2009 4:49 pm

Everyone here is being reasonable. Two months is early for changes in the MRI. Cheer, this is what it is.... To me it just means there is more to know. We all appreciate the honesty!

I know for sure they left "some" stenosis on mine already from the get go. they thought they'd have good enough drainage from there. It may have stenosed further, we'll see! Repeat visits for tune ups is fine with me, better that than no treatment at all, my other option.

In my opinion at least ms research / treatment is on right track. I'm feeling very positive about the future for ms patients.. and positive for Jeff's condition too, no worries
Ernst I agree with this assesment 100% This is just the breaks and difficulty of figuring out a new treatment paradigm.

if you started copaxone and 2 months later had no change it'd be like "so?".......................... :lol:
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Tue Jul 07, 2009 4:57 pm

Two months feeling a lot better with no progression is more than any CRAB has given Mel!

This not bad news, this is a good update.

Party at my mansion in a year to follow up with everyone. I'll fly you all in on my jet*!






* note to self, win lottery.
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Postby Sharon » Tue Jul 07, 2009 5:55 pm

Joan and Jeff - sorry for the delay in posting a reply

I have just returned from a relaxing six day vacation in our beautiful Colorado mountains. We stay in an area which has no cell phone coverage, no TV and no Internet. I decided against fly fishing in the river because of the blood thinners -- but, I had just as much fun wormin' my grandkids hooks and fishing with them from the bank.

The result of Jeff's follow-up images is great news - no new progression and he is feeling better than he has in years. In my opinion, he hit a home run. YIPEE!

I am thrilled to think we might not need to take the Plavix for the rest of our lives - this is an unexpected surprise.

Gee, a lot has gone on TIMS since my last login - I have some catching up to do.

Sharon
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Postby javaneen » Tue Jul 07, 2009 6:31 pm

Hi Joan and Jeff. I agree with what everyone is saying. This is all so new and we all knew that there were going to be bumps and possibly detors in the road ahead. To me this all sounds like good news. No progression of the disease, Jeff is feeling great and he will be able to stop the blood thinners soon. I am glad you guys are close enought for follow up and committed enought to make this work and stay on top of things. Stay strong...stay positive. We are all praying for continued healing.
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Postby MaggieMae » Wed Jul 08, 2009 5:54 am

So what does this say for Zamboni's patients since they do not receive the stents?
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Postby mrhodes40 » Wed Jul 08, 2009 6:45 am

There are several pathologies that can block blood flow, stenosis which is hardening and narrowing of an area, twists of the vein, atresia or a blockage that is otherwise built in, pressure from an outside structure.

Treatment is based on the pathology. One of the liberation people who was treated had a twisted vein, they opened it up by operating inside the vein, no stent. They told him it may stay good for 6 months or 6 years they did not know. If a stent was placed in such an area it would need to be rechecked with time also. You don't just throw these in there and then ignore them. Anyone who knows an elder with heart disease and the need to investigate that and intervene is familiar with this.

This is going to be a disease that needs management. I've said many times we'll need to monitor the stents and to get tested--every 6 months? once a year? any time there seems to be a progression or reurn of old nasty MS symptoms? to see if the veins are patent and make sure we are staying on top of it maintaining good blood flow.

If your stents block up unnoticed you may find yourself "suddenly" realizing that you've been feeling fatigued for the last 4 months and slowing down--only to discover that you have re-stenosed on a formerly repaired vein and a new lesion has formed.

Anyone who thought this was going to be a magic one time bullet or that MS would be gone as if it never was is not understanding the long term consequences of this.

I still think this is the real pathology of MS, that this treatment will make it possible for people to be well managed and that they will find very minimal or no progression is possible. And I think, once it is known as "the" cause of MS it will mean newly diagnosed people will never have issues like we have had, those of us who've had refluxing veins for 18 years or more.... They just never will accumulate that kind of damage even if they get a little along the way.
that's MHO about how this may be
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby chrishasms » Wed Jul 08, 2009 7:09 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:32 pm, edited 1 time in total.
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Postby peekaboo » Wed Jul 08, 2009 7:50 am

Marie wrote;

This is going to be a disease that needs management


I can't think of very many deseases that don't require management, I'd rather have stent watch than CRAB's, Chemo, etc.

Javaneen wrote:
This is all so new and we all knew that there were going to be bumps and possibly detors in the road ahead.


Exactly, If one is worried about any consequences, CCSVI I believe are minimal compared to other choices and diseases. For those of us who have been or are going to Stanford and receive intervention know that we are pioneers and alot can happen. Getting stents is a familiar intervention/practice so there is a body of knowledge to build from.

Thanks Jeff and Joan for reminding us of this...Jeff is the poster man for the cause :wink:

Holly
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Postby mrhodes40 » Wed Jul 08, 2009 7:55 am

Right on Holly! :D
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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