CCSVI - Aussie Action!

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

Dr Scaflani's Elaboration to question

Postby avantitech » Sat Mar 20, 2010 8:50 pm

Folks, in the interest of balance I thought this excerpt was interesting from Dr Scaflani's thread http://www.thisisms.com/ftopic-10680-da ... html#99231 ....an explanation of neurological and quality of life improvements experienced by venoplasty recipients.
drsclafani wrote:SLOWFLOW If there is resistance to outflow from the brain, this may lead to reduced inflow to the brain. That may lead to reduced oxygen delivery to the brain and cellular function may be compromised without oxygen. and it may ultimately be the cause of deminished brain size. Perhaps it is improvement in blood flow after angioplasty that explains the very rapid improvements in neurofunction that some patients experience. Clarity, return of sensation, etc sometimes are seen before leaving the hospital. Of course it could be placebo, but it could also be improved brain function because of improved brain flow.
QUESTION2
namely the debate of stenting and angioplasty. Firstly, we do not have ideally designed stents, there are concerns about migration because of the dynamic and considerable ability of these veins to dilate, and we do not have clarity of their long term outcome. It is therefore reasonable to attempt angioplasty first as it is safe and relatively simple. Repeating it is not a problem as the risk of the procedure is low.

Therefore I am inclined to treat by angioplasty alone first. See how things go. if symptoms recur, if stenosis recurs, then comes the decision making process that must be a plan devised by patient and doctor. If a patient's symptoms have imroved after angioplasty, cog fog, numbness, etc, then the decision is really a quality of life issue.


Folks, I am very much aware that since we as PwMS are in a way immunised against our own CNS, where activated T-cells continue to transmigrate across the deep brain & spinal cord venule epithelial layer, we therefore continue to battle the consequences of not only previous but also ongoing immunologically induced neurological damage.

However, I am confident that the venoplasty procedure is effective in improving our quality of life by increasing 1. CNS blood outflow and inflow to more normal levels; and 2. by minimising further exposure of the CNS to leaky vasculature, thereby reducing BBB compromise and therefore immunological cascades & CNS tissue damage.

I am also very much aware of the potential post-procedure placebo effect phenomenon, and whilst actively reducing my own expectation of improvements I am also asking for external observations, which would be of more significance than our more subjective self-reporting.

If we can report observations made by third parties, such as "..I can see that when you walk now you are lifting your foot higher." perhaps we can add that sort of information to the clinical notes of Prof Thomson and/or our neurologists , GP's etc to provide a clearer picture of our experiences..Just a thought.

Cheers
..Adolfo
Last edited by avantitech on Sun Mar 21, 2010 1:27 am, edited 1 time in total.
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Postby avantitech » Sat Mar 20, 2010 11:20 pm

More interesting comment from Dr Scaflani elucidating spinal venous drainage.
drsclafani wrote: The spinal cord has an interesting venous drainage. There are small veins that exit the spinal cord and enter venous plexuses that surround the spine and vertebrae. (A venous plexus is a tangle of very small venous channels and lakes. )These plexuses connect up and down the spine. Some then drain out into larger more defined veins. These veins can drain upward into the brain and then back down the venous sinues to the jugular vein. There are also veins that connect the cervical plexuses to the upper jugular vein itself. The cervical venous plexus also drains into the vertebral veins and they connect to the subclavian or innominate veins. lower down in the thoracic spine these plexuses drain into veins that connect to intercostal veins and hemiazygous and azygous veins. Lower down still there are veins that connect the vertebral veinous plexuses to lumbar veins, ascending lumbar veins, and the inferior vena cava and lots of other veins.
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Postby elaine » Sun Mar 21, 2010 3:05 pm

15 more sleeps......but hey who's counting?
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Re: Sydney CCSVI Clinic

Postby Cece » Mon Mar 22, 2010 7:45 am

vein1 wrote:The Australasian College of Phlebology is taking CCSVI seriously and is the process of organising clinics throughout Australia and New Zealand to assist patients with MS that may have CCSVI. However, due to resistance from other areas of the medical profession, it is a slow and difficult task.

Phlebologists are specialist vein doctors. Professor Zamboni, as well as being a vascular surgeon, is also a phlebologist, and this is the practice through which his work is best known. Professor Zamboni has accepted our invitation to attend our Annual Scientific Meeting in Melbourne March 2011.

Our role is to assess then advise how CCSVI is best managed. As a multi-disciplinary body, we are fortunate to have interventional radiologists as part of our membership, and these, along with interested vascular surgeons are helping to provide the early, minimally invasive, therapeutic interventions.

Melbourne patients are fortunate to have Professor Thomson already actively engaged in the treatment of CCSVI. His IR colleague, Professor Bester is also enthusiastic to provide a similar service in Sydney.

I am in the process of setting up the first dedicated CCSVI Clinic in Sydney, and I hope this to be operating by mid April. In the meantime, I am pleased to see and assess MS patients in my office in Newcastle.

Dr Paul Thibault


Dr. Thibault, thank you for posting here. It helps to have another voice saying that the interventions for CCSVI are minimally invasive, this has been a compelling point for myself personally to seek the treatment (alas, not in Sydney, I think I am about a twenty-four hour plane ride away.)

That clears up what phlebology is, too, and why it was phlebologists who vote to include CCSVI as a truncular vascular malformation.

I find it odd that there is resistance from other areas of the medical field. I suppose it is because each group knows its area best? So neurologists simply don't know the damage that a stopped-up vein can do. But if CCSVI is a vascular malformation, then it's vascular doctors that we need to go to, and thank all that there is to be thanked that there are doctors like yourself helping to make that possible.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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CCSVI

Postby Opera » Wed Mar 24, 2010 2:33 pm

Just wondering how persons who have already undergone the procedure are faring. Trust all is OK.
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Re: CCSVI

Postby kezzcass » Wed Mar 24, 2010 5:10 pm

Opera wrote:Just wondering how persons who have already undergone the procedure are faring. Trust all is OK.


Hi all, I am doing pretty well. Energy levels still at an all time high, green is amazing and still freedom of movement in the neck. I have had the pain behind my left ear slightly... not sure what that means. To say, it will be interesting when I have the doppler repeated on the 8th April to see if everything has held. A new improvement that I haven't mentioned is; I had a very hot bath last night (and normally I cannot tolerate it and I have to go to bed if too hot). But I was able to get out, have a coherent conversation with my husband and move about the house well. Just had tingling on soles of my feet (which is normally tingly up my calves after a bath). All round it's a thumbs up from me :D Kerri
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Postby Opera » Wed Mar 24, 2010 6:51 pm

Hi Kerri

Great news. Thanks and all the best. I am sure there is more to come.
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Postby elaine » Wed Mar 24, 2010 6:52 pm

Hi Kerri
good to hear that you are still doing well, not long to go before i get mine done.I am so looking forward to any improvments...12 more sleeps to go!!
Elaine
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Postby Opera » Wed Mar 24, 2010 7:07 pm

Hi Elaine

All the best for the procedure. I am sure every thing will be fine.
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Progress - What

Postby avantitech » Wed Mar 24, 2010 8:13 pm

Progress Report
Op + 21 days

G'day Folks
Well...I'm in a happy place. I've had no regression of improvements as yet.

1. Drop foot improvement still there & Walking better
2. Thinking more clearly, faster & conversing better
3. Voice remains stronger
4. Fatigue much better...doing more physical stuff therefore feel more tired before bed.
5. Sleep is good & restful
6. Very very few foot spasms - no leg spasms at all at night
7. Much reduced urinary urgency day and night - evacuating bladder more completely?
8. No sign of Right hand and foot Reynaud's...will see if it comes back in winter.
9. Am deliberately spending more time in the sun without a hat on (just sunnies and shorts) and not getting bothered after 20 minutes.

Right calf still sore from DVT op. particularly below knee entry point on stretching but no swelling or other issues.

Looking forward to see how I go energy with hosting a small party of friends tomorrow night.

Cheers
..Adolfo
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procedure next week!

Postby Nean » Wed Mar 24, 2010 9:34 pm

Hi everyone

I am having my procedure next week on Wednesday with Prof T. Thank you Adolfo and Kerri for your recent feedback, for as time goes by and Wednesday gets nearer it's great to hear that things are still positive with you guys.! I have been following everyone's comments/reports religiously for the last month. Youv'e all been so generous with your information. Thanks again.
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G'day

Postby dcalder1 » Wed Mar 24, 2010 10:48 pm

:) Been told i should be on here. My op is booked in on the 7th of April :wink:
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CCSVI Australia Facebook information

Postby bree » Wed Mar 24, 2010 11:12 pm

Don't know whether this link has been posted here but there are others that may be interested in following progress at the Facebook site

http://www.facebook.com/#!/pages/CCSVI- ... 3307140799
Good luck everyone!
Andrea
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Postby kats » Wed Mar 24, 2010 11:42 pm

Thanks for all the updates guys.
:D Adolfo & Kerry

Please keep posting your great results will give us mor hope .
My son is having his venogram this coming Wed as well.
Cannot wait to see some improvements for him as well.
I shall keep you updated on his results as well.
Just hope all goes well for him on the day.
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Postby Val1964 » Thu Mar 25, 2010 12:02 am

Hi Everyone,
All these reports are so good, I can't wait for my op. on April 13 , any improvement will be welcome.

:D Val
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