Gibbledygook's Stents

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

Postby mrhodes40 » Thu Aug 13, 2009 3:34 pm

Again, if Zamboni and Dake are truly finding occluded veins in the majority of MS patients tested (blinded, in Zamboni's tests), then "this theroy has nothing to do with ms" is indeed a statement to take issue with.

I agree and in my case the occlusions were very clear. The MRV showed big fat jugs that dwindled away to nothing and many spider web veins near the area instead (collaterals). On the neck MRI the slices of my neck showed big fat jugs until you got level with my jaw and there the "pancake" effect was clear, the jugs which are about the size of a finger up until that area, were suddenly a tiny slice, as if a finger pushed on the vein from the front and only a little slice was left open. The occlusion was 80-90%

In the operation, during which I was awake, and during which I talked to the doctors and looked at the venogram screen and was able to see what was happening, the second the stent was open the collaterals disappeared on the venogram meaning that they stopped carrying blood because the path of least resistance was now the jugs through that wonderful stent. My body did not want to send blood through that constricted collateral network. It wanted to use wide open jugs.

This is my reality. There is no way any skeptic can make the case there is anything questionable about the effective use of stents in my case ...
FOR BLOOD FLOW.

I do not know what it will do for my MS. I have no idea. I am a progressed person and do not expect recovery. My spasms have drastically reduced, and my heat tolerance is better, but I do not expect much otherwise, though I am open to anything.

But what I do know is that to the extent better blood flow can help me cope with my disease or aid in healing I will get help from the stents having done this and I am better off now. To make the case that it will make no difference or that to leave such an obstruction would have been somehow "benign" is to ignore basic physiology.

If such physiologic signs, occlusion above 50%, collaterals, and signs of problems in the organ involved, were in a cardiac patient, stents would be used and covered by every insurance company as necessary.

Furthermore no one would question this stent placement or suggest that we need more work or more replication of anything to prove it is good to restore bloodflow this way. These are the recognized physiological symptoms of vascular impairment and the things vascular surgeons look for to know they need to do surgery to restore blood flow.

SO I want to go on record --again--to say that we do not know what this surgery will do for MS. There are some reasons to believe it will help to restore blood flow from basic physiology, but no proof.

prof8 said:
In short, he said he did not know what to expect after the surgery as of yet and that he could not say if improvement was due to the surgery or the placebo effect. Yes, he actually used the words "placebo effect" unprompted by questioning from me.

BUT obviously he feels strongly enough that there is a connection and a physical defect in the body (stenosis) should be corrected because it might just help MS.

exactly my point.

I'm glad I did it, but if other people want to wait for more proof I do not blame them. There is no need to agree or not at this point... no one has to do this. But I think people have a right to hear about it.

BTW my GP has seen my records and scans from Stanford and agrees that this was the right thing to do. She would have done it herself she said... I have not taken it to a radiologist
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 CureIous » Thu Aug 13, 2009 3:42 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:15 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Thu Aug 13, 2009 4:44 pm

I feel myself qualified however for limited commentary on the whole flow thing
My husband is an engineer and he was making the same calculations. He is obviously not a radiologist but he agreed with Dr Dake and his assessment based on principle.
I truly appreciate ALL the reports, good and bad, and am wary to rush to judgement and say "see it works" and "see it doesn't!". My thinking is more towards the tail end of this year when we'll be able to get more of a grasp on the REAL effects or lack thereof of the stenters
well said.
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 patientx » Thu Aug 13, 2009 5:44 pm

mrhodes40 wrote:If such physiologic signs, occlusion above 50%, collaterals, and signs of problems in the organ involved, were in a cardiac patient, stents would be used and covered by every insurance company as necessary.

Furthermore no one would question this stent placement or suggest that we need more work or more replication of anything to prove it is good to restore bloodflow this way. These are the recognized physiological symptoms of vascular impairment and the things vascular surgeons look for to know they need to do surgery to restore blood flow.



But you aren't a cardiac patient. And so far no vascular surgeon has demonstrated that MS is caused by vascular blockages, or that the disease is stopped by installation of stents. Whereas, I think it has been shown that such a situation in cardiac patients can lead to heart attacks.
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Postby CureIous » Thu Aug 13, 2009 5:55 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:25 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Just my opinion

Postby lyndacarol » Thu Aug 13, 2009 6:03 pm

Because I feel I am among friends who allow me to express my unconventional opinions without repercussion, I will add my two cents here. Robbie, you opened this up when you said,
could also be that this theroy has nothing to do with ms.


In fact, I seem to agree in part with many members here.

If we accept the finding of stenosis frequently in people with MS, we can acknowledge an association between the two -- stenosis and MS; rather than the cause for MS, perhaps this stenosis could be the result of MS.

In the same way, perhaps lesions in the CNS are the result of MS, and not the cause.

Perhaps MS is NOT an autoimmune disease, NOT even a neurological disease, not even a vascular disease. Could these aspects be manifestations of a disease with an entirely different cause?

As you know, I vote for an endocrine problem (excess insulin) to be at the root. At a minimum, the recent interest in stenosis and venous insufficiency may spur researchers to look in new directions.
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Postby bestadmom » Thu Aug 13, 2009 6:49 pm

There is an easy way to know for sure if stenting will cure MS - stop the autoimmune attacks.

My MS specialist gives me a spinal tap every 6 months. He cultures the fluid and quantifies the amount of macrophage cells, and fetuin and osteopontin levels. It gives him a clear picture of disease activity and whether the treatments he's using are working.

With CCSVI, a pre-op baseline can be established, with every 6 month post-op follow-ups to see if there is still an autoimmune response. If your local doctors are on-board with CCSVI, there's no reason why this line of anaysis can't be done now in concert with Dr.Dake.
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Postby Jamie » Thu Aug 13, 2009 7:33 pm

Lets not be knee jerk either way.

Things are borne out with thousands of people not individuals.

These people are the first, and sharing - that's all.
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Postby CureOrBust » Thu Aug 13, 2009 7:44 pm

What were we talking about? That’s right, gibbledygook. :)

Anyways, not wanting to sound like a thread Nazi, there is already a thread for skepticism (I also find myself treading water in both camps, but that’s for another thread :oops: just found it, it was WAY down... http://www.thisisms.com/ftopicp-64685.html#64685)

gibbledygook, on following your history, I have always noticed you were someone prone to radical changes in your status at any one time. Previously, you would / could relate it to a trigger in a change in your regimen.

I think with your history of little stability, maybe you in particular are someone who should be monitored on an "averaged" basis. For example, in the weeks preceding the stenting, did you take spasm medication less or more nights per week copared to after?

Also because you are more in the progressive phase, maybe the stenosis is no longer "driving" your progression, so when you can get back to supplements, I also think, that as you seem to expect, you will possibly see greater benefits.
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Postby ErikaSlovakia » Fri Aug 14, 2009 1:12 am

At the moment I do not care if it has something to do with MS or not.
I just want it helps my symptoms. I also understand if somebody wants to wait for more trials.

In my case the fact is I have stenosis and reflux. I just want somebody to fix it. If I break my leg I also want some doctors to fix it. I feel better without broken leg.
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Postby Loobie » Fri Aug 14, 2009 5:24 am

Erika,

That was exactly my position when I made my decision.
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Postby gibbledygook » Fri Aug 14, 2009 6:56 am

Wow! What a great message board!

I'm sad that I haven't had a consistent reduction in spasms as those 7 weeks without medication after the operation were just wonderful. And I still think that these spasms had something to do with a sudden change in the load in the collateral channels owing to a clot or problem with the stents. The next scan will provide better evidence, I hope.

Interestingly I HAVE had a change in regimen. On Sunday my partner and I vowed not to have any alcoholic drinks for 6 months!! We usually have a few drinks every few days and although post-op I had a week or so off the sauce, I've had a regular few drinks since then.

ALSO on Friday when I had the follow-up CT venogram done I was nervous about cancer triggers from the x-ray so I took one broccoli extract pill. I had one broccoli extract pill a day until Wednesday when I remembered that I wasn't meant to eat green veg as it interferes with warfarin. Indeed my INR from Thursday is still only 2.0 so I think the broccoli pill may well have increased my coagulation. Could broccoli extract be the trigger for the spasms and deterioration in symptoms? It just seems so far-fetched. Still I didn't have spasms yesterday night so I'm going to stay off the broccoli extract! Interestingly in the past anti-oxidants, such as superoxide dismutase, seemed to cause relapses. I also recall taking broccoli extract with other vasodilators and my walking getting worse. So maybe the broccoli extract caused, via vasodilation, blood to flow back into the collateral channels or caused a clot or something. :?
So much for healthy anti-oxidants/fruit and veg! Pah, I'm going to eat saturated fat from now.
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 skydog » Fri Aug 14, 2009 7:20 am

As I have said before right wrong or indifferent none of us will get out of this alive. Fix what we can at the moment and get on with life. For me just being able to push a little further physically every day is truly a big plus. Keep on charging ahead till the next fix comes along. You Guys ever sleep? And thought I was the early bird. Maybe just the time diff... Cheers, Mark
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Postby gibbledygook » Fri Aug 14, 2009 7:34 am

And maybe it's just an up and down thing; two steps forward, one step backwards. After the operation and returning to the UK my walking got worse but then it got better...so maybe the same is happening with the spasms. I'll keep updating.
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 skydog » Fri Aug 14, 2009 7:51 am

I wouldn’t get too worried about what you eat interfering with the warfrin just don’t overdue the supplements. I have stopped all supplements, but hope to add back a few that will help in keeping the blood flowing freely. Now six weeks out from surgery. Eating mostly raw foods and not stressing over what every little thing will do for the blood thinning. I have also stopped all alcoholic beverages, but love to smell the Corks !!! I know this is only for awhile and for my own good. I have also had some muscle spasm and felt like things weren’t going as good as they should. I am looking further down the road to where I want to be and try not to stress over a few setbacks. Two steps forward and one back = one ahead... Peace and Health, mark
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