This Is MS Multiple Sclerosis Community: Knowledge & Support

Bad posture can certainly restrict veins and increase the pressure causing them to swell. Sitting in a wheelchair for example hardly speeds up recovery does it? I believe wheelchair posture makes sure people stay in wheelchairs, and that sitting in an inclined posture, rather than the bucket seat type posture found in most cars and closely resembling the poor wheelchair posture with knees higher than the seat is compromising not only the circulation in the arteries and veins but also the cerebrospinal fluid circulation, the lymphatic circulation and the peripheral nerve circulation.

Furthermore, sitting for too long on a firm chair will undoubtedly increase blood pressure.

Having the hands at the keyboard for example with them raised slightly higher than the elbows will induce numbness in fingers, tingling, and even some loss of function in healthy people. I have experienced this and experimented with posture.

So according to my own research at least, your seat should be at least level with your knees. A foam wedge cushion can be purchased to take the dip out of the bucket type sitting position and used in cars. I am sitting on one right now typing this.

Andrew

Cheer, you are an inspiration! I can't believe you have achieved positive results with seemingly no effort. I hit a brick wall in London.

Do you think that I could contact Dr Dake and make a similar appointment to Jeff? I certainly don't want to disturb his researches...

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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,

Terry...
No worries!!! I was ROFL when I read your trumpet comment. Hilarious!...don't fear, I won't tell the grandkids, your history is safe with me

Gibs-
I don't know if Dake is able to see and treat folks from overseas. I suppose an email might be fine. But I really think you'd be best to find someone in your town, maybe check and see who attended the Charing Cross Symposium? It was in London just this month, info is online. Maybe Zamboni would be a better contact for Europe? I'm fearful of overwhelming the couple of docs we have. Let's help them out...

We'll need to establish a vascular doctor resource, once we get enough interested. Look to your local universities, find out who are the vascular doctors who research venous insufficiency, cerebral thrombosis, jugular vein stenosis, and which schools have magnetic resonance venography technology. Let's cast a bigger net, and get more research done. The more docs involved, the harder it will be to discredit the findings.

-I also have to say...I appreciate the kind words and thanks- but finding Dr. Dake was either pure luck, or God's providence. (Jeff and I believe deeply in the latter) I "just happened" to e-mail a colleague of his at Stanford regarding endothelial research. When Zamboni's research was published, I sent it to him and he referred me to Dr. Dake. Dake "just happened" to meet Zamboni at Charing Cross, and they "just happened" to hit it off and spend some time together. Jeff "just happened" to have reflux and stenosis, and Dake "just happened" to want to pursue this. Jeff and I are very thankful, but we realize it's always been out of our hands. Credit where credit is due...
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

hey there hub - nice addition to the file i don't think you've duplicated anything
i went through the earlier pages of this thread, to sort of get the zinc info in one place:
on CCSVI page 3..

couple more from CCSVI page 7..

and CCSVI page 10...

CCSVI page 16...

LOL peek - what the heck would the pied piper do in a WORLD WITHOUT ZINC...

ha, i wondered when my thought processes about the zinc link to uric acid had started and after that CCVI-zinc review, it looks like it was dec '08 - here's me thinking out loud on page one of the thread (WW had wondered about varicose veins in pregnancy and how would that jive with suppressed ms activity during pregnancy.. i went over the d3 aspect in the 3rd trimester then this:)
turns out the answer is YES! before zinc, my uric acid was always 188-194.. i fixed my zinc deficiency and my latest uric acid result was ***255 umol/L***! saaa-weet, only 35 more umol/L to go

Thanks for putting all the zinc info in one place, Jimmy!! Nice work-

Hey Marie....found an interesting study from 2004 on Developmental Venous Anomalies and MS. Think it might be one for the CCSVI research thread? Check this out....They only had a 1.5Tesla, but they found multiple DVAs in MS patients.


http://cds.ismrm.org/ismrm-2004/Files/001503.pdf
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

'hypoxia-like metabolic injury,' 'intrauterine accident' - hmm, I was born with my umbilical cord around my neck and leg, choking me ... wonder if that's a factor!

Yes! And if anyone has trouble finding someone locally interested, Dr Dake's work when it comes out will be a big help in getting other doctors interested and doing MRV to see what is there in individual MSers.

At that point it will be Zamboni x 3 huge good studies and maybe even the Liberation 100 findings, Simka with replication, and Dake with his results including the MRV showing clear blockage and repairs. This cannot be more than a year or so and it will be accepted that AT LEAST it is true that MS patients often have these venous issues and checking for them makes sense.

America in particular has so many loonies suing for malpractice every time MD's turn around they do not like to go outside the "safe" box. It is safe to do what everyone else is doing and risky to do new things with too little research out for the governing body (ie American Collge of Whatever Doctors) to have come out with guidelines endorsing something.

This is unproven and experimental so it is not unreasonable to have hard time at this point getting people to signup and do it ot of the blue, but it will not always be that way... and the change is not far off

I like the DVA one, interesting material. It makes you wonder if the congestion makes them show up more. but I hesitate to add it to our research thread--I know from experience with the CPn Help research pages that if you include everything they get too cumbersome and people give up.

Ken
the altered hemodynamics causes the loss of shear stress which means that the normal flow of blood makes the BBB and the endothelium--the "skin" of the blood vessels-- strong but when there are eddies and chaotic currents the altered flow causes the endothelium to break down (this is shown in animal models) and this means he vessel becomes leaky and fluids from the blood, inflammatory cells etc, goes through into the tissue. In an ankle with a blockage above it this makes a puffy swollen ankle and it may eventually become a venous stasis ulcer where the tissue changes in many predictable ways

Repairing the blocked vein results in healing see this here: watch it all so you see the open ulcer back of the leg.......
http://www.youtube.com/watch?v=1N68W5I0xgA

Ya think that'd bother a brain if it was going on there instead of the ankle?

please read the schelling book, pages 28-31 speifically for the myelin and how it is the damaged party in this model. The book has a nice table of contents on the left side and you can go to the subject that interests you. He covers the research known at that time--roughly '83--and how this new venous idea accounts for the same material. Essentially the myelin is fragile and the pressure is hard on it and the oligodendrocytes.
A
As for healing if you relieve the blockage the blood flow is returned to normal and the leaking through the endothelium BBB is stopped. The area can heal normally without that problem going on. If you watched that whole you tube video the doctor is showing a healed venous ulcer on the front of the leg that has closed up after surgery to relieve the blockage, and at the end of the video he turns the ankle around and shows you one that is still open but healing.
You can see how scarred, hard and damaged even the "healed" area is.

Multiple sclerosis means many scars, but it got that name because when they autopsied the brains of MS patients they found these hard areas that thye could see and feel. Nt the hard scarred tissue in the ankle.

Venous pathology causes issues that are very similar to MS lesions and the Zamboni 'o6 paper "The Big IDea..." has a table that shows the similarities. I won't paste it in again, but you can see it that paper.

Cheer,

I have not had much time to read all of the CCSVI thread and I am so excited for your husband.

I have a comment about the venous thing. I had an AVM (arteriovenous malformation) in both lungs during my first year of life. It was called Multiple Fistula of the Lungs back in the early 60's. Several surgeries later and part of both my lungs removed before the age of 2. Then my son had an AVM in his left lung in his 20's, a year later another one in his right lung. I have never been checked again but they keep a check on Dustin once a year. He had another scare about 4 months ago.

Anyway, this is a hereditary condition and I wonder if there is any connection.

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Cat Thank you for your post, very interesting. According to my research, the lungs exhaling are the driving force for circulation. When we are first born and take the very first breath releasing solutes down the arteries, the blood flow changes direction and closes the hole in the heart.

Removing part of the lungs would undoubtedly have a knock on effect for the circulation, not only in the blood but also in the nervous system. Reducing the surface area of the lungs as was the case with yourself would reduce the lungs capacity to alter the density of the solutes in the fluids that coat the surface of the respiratory tract.

Without sufficient density changes, the fluids in the lungs may also stagnate and become susceptible to infection. Inclining the bed would greatly assist your ability to keep the lungs clear.

This point is certainly worth remembering with the impending flu pandemic!

Andrew

Hi Cat-
Sorry I missed your question- lots going on.
From a quick google search I learned that AVM (arterio venous malformation) is an abnormal collection of blood vessels that creates a short circuit or blockage- because a specific area of the body lack capillaries. It can happen anywhere in the body, not just the lungs. It appears to be congenital, but not hereditary.
Do you see a vascular doctor regularly to keep an eye on this? Might be a good question for a doc...perhaps your son's or your doctor would be interested to read Dr. Zamboni's research, and test you for CCSVI.
I'm not qualified to give you the answer on this....but if I were you, I'd find a good vascular doc to look at the connection to your MS-
all the best,
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

OK so I may have found a doctor who can do this but he needs to know what equipment he needs to get, or find to do it.

Can someone give me a list of the tests that are needed to be preformed. Not an article I need to weed through 5 pages to find what I need, just the tests.

TY so much.

Well, I will be making a trip to San Francsico to see Dr. Dank. I called his office yesterday just to see if they could recommend someone in the Denver area. To my surprise I was connected directly to Dr. Dank. We spent the next half hour to forty-five minutes on the phone discussing the tests, the procedure (if needed) and my MS history. He encouraged me to go see him to get the testing done and since he is familiar with Zamboni's research, I decided to go California for a few days. He is very interested in getting as much data as he can on MS patients and the coincidence of venous insufficiency. At some point in time he hopes to have a written report to hand to the neurologists.



I would suggest that if you have problems trying to find someone in your area to contact Dr. Dank - he is willing and ready to see you.

Gibbledygook

Yes, call him.

To Cheer and Marie - again, thank you for all your research - you are amazing! Also, Dignan

Sharon

Cheer,

We were told it is also hereditary as well as congenital. It forms prior to birth and affects a person in their 1st decade of life or their 3rd decade of life. I fell into the 1st decade and my son was in his 3rd decade (20's). Both of ours was in our lungs. They checked Dustin to make sure he had none in his brain and since I have an MRI every 6 months I know I don't.

I worry about him having MS someday. Crazy to worry about something that may never happen.

Thanks for the research!

Cat.

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.