CCSVI and CCVBP

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

Postby costumenastional » Thu Oct 14, 2010 1:40 am

Cece wrote:I checked back to see if drsclafani had weighed in on the idea of overdraining, this was what I found:
http://www.thisisms.com/ftopicp-99978.html#99978

I would have to research exactly what keeps CSF separate from the regular blood stream. In CCSVI the blockages are abnormal and the venoplasty restores them to what is normal. The normal state of free-flowing cerebral venous drainage does not negatively impact CSF in healthy individuals. Also in a spinal tap, some CSF is removed. After I had this, I developed the really painful post-lumbar headache that goes away as the CSF restores itself. If this were truly a concern, I think we'd be hearing a lot of reports of that sort of headache. It's a rather unmistakable headache.

This is meant in all due respect and in hopes of figuring this all out.


Cece, this is interesting to say the least. Thanks for digging it up!
It surely indicates that we are in the middle of different opinions and even more, the need for solid conclusions. This can only happen when physicians collaborate and the way I see it, Dr Flanagan's initiative to talk with Haacke is a step to the right direction.
As for Dr Sclafani's note, I am not sure what brain's over drainage might or might not result into. I know that some of us got worse after the angio though and it's kind of difficult for one not to start wondering. And I am not talking restenosis but immediate worsening. Rici's case comes in mind for instance. His wide jugular is giving him "turbo ms" as he says. Of course his valve has been destroyed also during the angioplasty and this might be the real issue. Whether there is over drainage, back jets or both remains to be seen after his vein replacement surgery.

Maybe it has something to do with already damaged nerves being affected by the altered blood flow. I must admit that Dr Sclafani's statement sounds logical though and this is giving me a headache. Everything sounds logical!!!!

drsclafani wrote:
But then if stents are placed in jugular(s); too much blood (?) is drained out of the brain during daytime (standing/seated), stents preventing their collapse Question (not sure I express myself correctly here, pardon me)


you express yourself quite clearly to me, thank you very much.
i would not worry about blood draining too fast from the brain. the limiting factor of draining the brain is what goes in. the capillary between the artery and the vein is the limiting factor in getting the blood out.
Also the stent is placed where the n arrowing of the veins is. the remainder of the vein, i would presume, will still collapse when you stand up.

hope this helps


uprightdoc wrote:over drainage of the brain can be even more catastrophic than a clogged brain. The brain needs water for cushioning and support. The impact of venous drainage on CSF volume and brain support is in fact one of the issues I would like to discuss with Dr. Haake. In certain cases the CSF pressure gradient can be improved by angioplasty and stents. In other cases it may be impaired or made worse. Even so, it appears to be helping more people than not, and while it may be contraindicated in certain cases, I don't think we are far from figuring out which ones. We just need to put all our heads together and work through all this new information. We are on the right track.
Last edited by costumenastional on Thu Oct 14, 2010 4:01 am, edited 2 times in total.
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Postby uprightdoc » Thu Oct 14, 2010 3:39 am

NZer1, you have a truly fascinating case history. You have done extensive damage to your spine. Like CCSVI, the connection to the spine is vascular in nature but in addition to venous flow it also affects arterial and CSF flow. Give me a little time to go through your complicate history and then I will give you my impression. You can definitely do better getting your spine fixed. Again full spine chiropractic is great but very few chiropractors do upper cervical specific and it makes a world of difference.
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Postby uprightdoc » Thu Oct 14, 2010 3:53 am

I would have to respectfully disagree with Dr. Scalafani. I will be discussing the issue further with Dr. Haake. I will also discuss it Dr. Noam Alperin of the Universtiy of Florida Dept of Radiology. Dr. Alperin is doing upright MRI and angiogram studies on cranial hydrodynamics. It is a complex subject and I have been studying it for decades. Passive CSF production is dependant upon the difference between pressure in the ventricles where CSF is produced and superior sagittal sinus venous pressure (SSVP) where it is absorbed. Theoretically speaking, opening the jugular veins should increase the pressure gradient and passive production of CSF. If it doesn't then the brain will sink into a pressure consus or Chiari 1 malformation. My concern is despite opening the jugular routes that an increase in vertebral venous pressure can put back pressure against the superior sagittal sinus and decrease the CSF pressure gradient and passive production of CSF thus comprimising brain flotation and support. In order to improve the success rates and reduce failure rates of the liberation procedure I think it is important to consider. I think we can develop screening protocols to rule out potential Chiari complications.
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Postby costumenastional » Thu Oct 14, 2010 4:13 am

uprightdoc wrote:I would have to respectfully disagree with Dr. Scalafani.


I am pretty sure that different opinions, healthy skepticism and the will to explore new avenues of research can only help at this point. Lately I feel like the cure for MS already exists but all the pieces are being held from all kinds of different specialists who until now, wouldn't cooperate.
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Postby uprightdoc » Thu Oct 14, 2010 4:47 am

The battle between chiropractors and medical doctors is a big part of the problem and has been going on for over one hundred years now. The battle within the chiropractic profession between the upper cervical and full spine camp is another serious roadblock.

The other problem is simply that this is all new to everybody. I started looking into it thirty years ago. Schelling started before that. I can't imagine his frustration. The problem was that the technology wasn't available to go much further. Today's imaging techniques are incredible and they keep getting better. Today's minimally invasive surgical procedures, such as angioplasty and stents, are likewise opening completely new possibilities. I believe that angioplasty and stents will be an alternative to CSF shunts in certain cases.

Believe it or not, the pieces are actually all starting to come together. Zamboni fired the first shot heard round the world. Now we just have to put all our heads together and figure out the rest of it.
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Postby costumenastional » Thu Oct 14, 2010 5:30 am

I believe it. The problem is that time is of great essence.
Battles, battles, battles... wish Zamboni had opened Pandora's box 10 years ago. We would have gotten over this by now...
Anyway, no complains whatsoever. It was only a few months ago when I thought I had no chance.

Thank you for everything.
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Postby silverbirch » Thu Oct 14, 2010 9:49 am

Apoligies in advance xxxx can a lovely person in the forum please explain

"CSF Shunts"
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Postby uprightdoc » Thu Oct 14, 2010 10:38 am

I am far from being lovely but I am willing to explain. To keep it simple, CSF shunts are drainage tubes surgically inserted into the lateral ventricles of the brain where CSF is produced. They are used to drain off too much CSF which results in hydrocephalus in children or normal pressure hydrocephalus in adults.

Because the brain floats inside the cranial vault and needs CSF for support, cushioning and protection it is a delicate balancing act. Too much CSF causes hydrocephalus. On the other hand, an insufficient amount causes the brain to sink toward the foramen magnum in the base of the skull causing a pressure conus conditions or a Chiari malformation.
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Postby NZer1 » Thu Oct 14, 2010 12:32 pm

Thanks Dr F. for your reply. I will happily wait and read more of your book. :D
Thankyou also to Spiros for bring us all together to discuss this whole picture and for the PM message.
I am beginning to have the opinion that the blood flow is effecting the whole MS disease in more ways than one.
The flow of blood has many implications and the areas of the brain that are effected may be from differing aspects of blood flow, cooling, oxygenation, removal of by products, controlling CSF pressure, flushing and flow direction, flow design, pressure and vacuum balance of the blood system, effects on the CNS from altered blood flow and drainage and also CSF flow and drainage.
The more the specialties in medicine can maintain dialog the more we can all learn and work towards longterm outcomes.
As well as the MS knowledge there is going to be huge implications for other diseases that have been labelled with names like Auto-immune and Cancer.
I hope that everyone can learn from the experience of the Neurological Specialties behavior towards the Vascular involvement in MS and keep open, honest, emotion free, unbiased by conflict of interest and professional discussions flowing and support each to find the answers.
Regards to all,
Nigel
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Postby uprightdoc » Thu Oct 14, 2010 3:21 pm

Just to let you know Nigel I'm still working on it. I may be up all night. Basically, as you surmized, you did some bad things to your body. But that doesn't mean you can't take some of the dents out.
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Postby HappyPoet » Thu Oct 14, 2010 10:03 pm

Hello Dr. Flanagan,

Sorry for the delay in getting back to you. Thank you very much for recommending Dr. Craig Wehrenberg. On-again, off-again ISP connection problems and a new relapse kept me off the computer this week.

My relapse happened on Sunday just before a previously scheduled Monday appointment with Dr. Wehrenberg. X-rays and measurements were taken, and I was given an Atlas Orthogonal adjustment of my C1, Atlas bone. Dr. Wehrenberg is excellent, and the treatment is working! :)

The X-rays show that I have two old neck fractures that never received medical attention which could be responsible for my: 1) Foramen magnum being tilted, 2) Atlas bone being tilted, 3) Neck having the opposite curve it should have, 4) Thoracic spinal cord having some scoliosis (curvature of the spine), and 5) Posture being poor.

His treatment was quick, painless, and 100% of the numbness in my R foot remitted overnight! In the past, numbness would remit very slowly over weeks to months. The Atlas recheck the next day showed the adjustment was still holding. :)

Today is another recheck, and I go back with a new improvement! The numbness in my L foot, which was far worse than in my R foot, has remitted fifty percent! Now I can walk without using the walker or cane. :)

Do I believe the Atlas Orthogonal adjustment is why the numbness remitted? Absolutely! Do I believe being again able to balance on each foot, feel the floor beneath my feet, and actually walk on them is a placebo effect? Absolutely not!

I found that Atlas Orthogonal treatment is fast, easy, painless, and comparatively very inexpensive. And the treatment actually works, as you knew it would. :) I now believe every person diagnosed with MS/CCSVI should have spinal X-rays taken before ever being given the diagnosis of MS.

Your meeting with Dr. Haacke will be interesting for both of you -- I can't wait to learn about your time together. I gave the Roundtable information to Dr. Wehrenberg, and hopefully he'll be able to attend, too. I won't be there because of family reasons, so I hope someone can record the presentations for all of us.

Thank you, Dr. Flanagan, for all your time and help -- I never would have been able to find Dr. Wehrenberg through all my brain fog... sometimes, especially in a new exacerbation, the simplest tasks to do can seem like the tallest mountains to climb.

~HappyPoet
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Postby costumenastional » Thu Oct 14, 2010 11:14 pm

Need I say how happy I am for you Poet? I wish you my best and hopefully this will give you some real answers down the road friend...
Dr Flanagan has some serious connections and when it comes down to finding a specialist worldwide he is the man.

Nigel, you are welcome ;)
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Postby uprightdoc » Fri Oct 15, 2010 2:18 am

Hello Cece, you keep slipping in and out of the conversation and I didn't get to say hello. Your Betty Boop like Avatar, however, catches my eye and makes me weak in the knees. That's something I won't explain.
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Postby uprightdoc » Fri Oct 15, 2010 2:24 am

Hello Poet, That's great news. If you don't mind sharing them could you photograph your x-rays like Mark, Barbara and Lora so that I can see them. You can PM and email them to me.
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Postby silverbirch » Fri Oct 15, 2010 4:55 am

happypoet

thankyou for the update it makes me feel good about my app on the 26th with Dr Heidi Grant again a lovely referal from Dr Flanagan xx

Im more nervous attending this appointment and for the life of me I can not work out were this fear is coming from

Ive had ccsvi procedure and was not one bit nervous.
I had the spinal tap ( it took three Dr's and six attempts ) and I would have in again with out a thought...

So why the hell have I got the collie wobbles ??? I think some were along the line Ive got it into my head if the click goes wrong Im in trouble

Anyways I will keep the forum posted
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