Bad News --All Dake surgeries canceled even w/ appt.

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

Postby shoshin » Tue Dec 08, 2009 5:42 pm

I was just at Stanford last Thursday and Friday and my heart goes out to those who had their appointments canceled. I just cannot even imagine the disappointment. It’s not only the money and the arrangements, but the emotional investment--the wanting to hope, the fearing to hope, the trying to quash too much hope. It reminds me of Dostoevsky before the firing squad with their guns aimed and ready when he received a last minute reprieve, only in reverse.

This is hard for me to read since I was just there and had balloons put in my jugular valves. I feel like I have received an incredible gift. I have not felt this clear, awake, alive, and energetic in years. Even if nothing else comes of this and even if it doesn’t last, that alone makes it all worthwhile.

Although my brain understand the logic of the cautionary comments posted here, from the heart, words fail me.

sho
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Postby ozarkcanoer » Tue Dec 08, 2009 6:00 pm

shoshin, I am incredibly happy for you. It takes courage to try something new. Please come back and keep us updated on your progress !!

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Postby Ruthless67 » Tue Dec 08, 2009 6:05 pm

Thanks shoshin for entering your info on the tracking sticky and this additional post. It's wonderful to hear you've had positive results so soon from the balooning. Please keep giving us updates, it's food for our hope! :lol:

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Postby Shannon » Tue Dec 08, 2009 6:26 pm

Those veins serve a function. Barring being able to satisfy that function, one would think something is going to wrong. In this case, blood not getting back to the heart from the brain should over time cause neurological damage. I don't "believe" this, as in having blind faith that it may be true, I consider it to be an educated hypothesis. Thanks to the research that's already been done, we have seen proof of the potential damage.

Likewise, saying that having MS means that nothing is "broken" is putting one's own spin on the analogy given!
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Postby ozarkcanoer » Tue Dec 08, 2009 6:34 pm

Shannon... As a medical research outsider (actually I was involved in molecular modeling for drug design for awhile), it is amazing to me no one ever asked the question "I wonder what happens if the veins of the brain don't drain well ?". Are the jugular and azygous veins just "there" for all anatomists and physicians. Has no one outside of Rindfleish, Fog, Scheller and Zamboni ever considered what would happen if something goes wrong with venous drainage ? Scientists are talking about immortality, but no one has ever considered the "sewers of the brain", the veins. I guess we all take our sewers for granted. No one wants to pay their sewer bills, LOL.
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Postby Shannon » Tue Dec 08, 2009 7:07 pm

ROFL! I love that. :D I know, right? Those veins must be like the appendix of the vascular world. I think maybe us MSers don't cry loud enough that "My brain is broken!"
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Cancelled appointments.

Postby Brynn » Tue Dec 08, 2009 7:52 pm

Hey Shou, it is wonderful that you were able to get your procedure done...good for you. Certainly don't feel badly! Just to clarify, did they just do the angio on you or did you also get a stent? I was wondering whether Dr. Dake would consider just performing the ballooning because of the recent issues with the stent. I managed to get an MRI last Wednesday and went to a vascular institute today to begin talks about an ultrasound. I got an initial warm reception and hope to expand on that soon. I am meeting with my neuro tomorrow to go over my MRIs. I think that all of us need to talk to whomever will listen and pass the CTV interview series around to everyone! Keeping the education ball rolling and gathering as much info on your condition will only be a benefit! We all need to hang in there! :P Take care all, Brynn
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Postby patientx » Tue Dec 08, 2009 8:15 pm

whyRwehere wrote:
patientx wrote:Scut,

Very well written. I have raised just that problem with the broken leg analogy. Like you wrote, surgery generally isn't required for a broken leg. But beyond that, if I break my leg, I can't walk, regardless of my MS. If I have clogged jugular veins, I can still function.


patientx, you are lucky to still function even though you have MS. My husband functions less and less. He can't pee and he practically can't walk. I don't consider that functioning and at the same time I know for fact that he has blockages and missing veins. When a doctor says, "oh, that doesn't really have any effect on a person," I think that doctor is so wrong!
So, I agree with the analogy.


whyRwehere,

You're right. Right now I am pretty fortunate that the MS hasn't hit me as hard (yet) as your husband or many of the members here. But, while I don't suffer as much as many with MS, I am not totally unscathed. And I understand completely the feeling of wanting to do something. Shortly after being diagnosed, I was all set to enter one of the Campath trials, even knowing the reported complications.

I just don't think there is conclusive proof yet that blocked veins cause MS, and even less that taking care of these veins should be done for its own sake. However, I do think enough evidence has been presented that it should be investigated.

But, if I was in your and your husband's position, I would probably pursue this more vigorously.
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Postby patientx » Tue Dec 08, 2009 8:24 pm

Shannon wrote:Likewise, saying that having MS means that nothing is "broken" is putting one's own spin on the analogy given!


I never said, with respect to MS. nothing is broken. No one knows right now exactly what is broken

Shannon wrote:Those veins serve a function. Barring being able to satisfy that function, one would think something is going to wrong. In this case, blood not getting back to the heart from the brain should over time cause neurological damage.


One could argue that if the blood truly was not getting back to the heart, then more immediate effects would be noticed, like severe edema, stroke, etc, and these would happen right away. But MS, on average, take time to develop and rears its ugly self in middle age.

I don't "believe" this, as in having blind faith that it may be true, I consider it to be an educated hypothesis. Thanks to the research that's already been done, we have seen proof of the potential damage.


Fair enough, but on what is the educated hypothesis based? And the research so far can hardly be called proof.
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Postby Johnnymac » Tue Dec 08, 2009 8:40 pm

patientx wrote:
I just don't think there is conclusive proof yet that blocked veins cause MS, and even less that taking care of these veins should be done for its own sake.


I agree with the first part there, but not with the second. Venous Stenosis from what I'm learning is not new to the brain, and its well known that this stenosis can cause significant damage. Regardless of MS, I think if ultrasound and MRV can show significant problems in the veins draining the blood from the brain it should be fixed. Who knows how this may end up tying to MS, but its hard to argue with black and white images that show a patient that they have a real problem in their veins.
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Postby thornyrose76 » Tue Dec 08, 2009 8:44 pm

I was 19 when symptoms began and diagnosed at 23. I have progressed quickly and continue to, and at 33 Ihave been in a wheelchair 7 years and my hands are going...Dake, Zamboni and whomever else has and is doing this work has given me REAL HOPE. Nothing and no one else has...watch the CTV W5 REPORT THAT IS ONLINE... Are these people imagining all this?
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Postby cheerleader » Tue Dec 08, 2009 9:06 pm

In Bologna, Dr. Byong Boong Lee, a vascular surgeon and professor at Georgetown University, discussed how the typical "symptoms" of MS, if created by CCSVI, would most likely not be noticed until 20s or 30s. He used the model of Budd Chiari (liver venous reflux disease) as an example. Patients with Budd Chiari don't notice symptoms until it's often too late (and a liver transplant is needed) in their 20s and 30s. Dr. Lee said that other venous diseases often show up later as well, like chronic venous insufficiency in the legs.

Venous reflux disease slowly creates damage in the area it drains. There is proof in the liver, kidney, spine and legs...now we are seeing "proof" in the brain. No one has studied this before, but that doesn't mean it isn't real. The body is one body.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Tue Dec 08, 2009 9:11 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:34 pm, edited 1 time in total.
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Postby MS_mama » Tue Dec 08, 2009 9:28 pm

Lyon wrote:
cheerleader wrote:Venous reflux disease slowly creates damage in the area it drains. There is proof in the liver, kidney, spine and legs...now we are seeing "proof" in the brain.
I'm not disagreeing. That might well be proven in the future and "seem" obvious now, but at this time it remains to be proven.


I think that's why she used quotes. :wink:
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Lyon » Tue Dec 08, 2009 9:49 pm

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