JCB's Liberation Journey PPMS

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

Postby prairiegirl » Thu Sep 23, 2010 7:34 am

JCB wrote:

I have an appointment with Neuro in Oct., I want to wow him.


Hope you do-- keep us posted!
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Postby JCB » Fri Sep 24, 2010 8:49 am

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Postby JCB » Mon Sep 27, 2010 6:17 am

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Postby JCB » Mon Oct 04, 2010 7:16 am

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Postby JCB » Mon Oct 11, 2010 7:38 am

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Postby Jugular » Mon Oct 11, 2010 8:37 am

If you recovered two years in 4 weeks that's pretty huge.

I have a similar presentation as you with right sided problems. I used to be strongly righthand dominant and have had to recruit my left hand for everything. I always thought that if I ever did recover function in my right hand I'd be ambidextrous.

I have a severe stenosis of my right IJV.

I wondering though if you have any spinal lesions. I have a big one at the C2 - C3 level. Reading Zamboni's paper, poor lumber venous drainage and azygous stenoses were involved in spinal lesions.
For instance, PP course, characterised by a slowly progressive syndrome with spastic paraparesis and MRI demonstration of MS plaques in the spinal cord,20 30–32 was significantly associated with obstruction at several levels of the azygous vein and of the lumbar plexuses (type D pattern, fig 3, table 4). In this situation, venous blood of the spinal cord can be drained only in an upward direction and is shunted toward the venous plexuses inside the spine (​(figsfigs 3, 4), thus helping to explain the correlation between type D and spinal cord involvement in PP patients.
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Postby JCB » Mon Oct 11, 2010 9:08 am

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Postby Jugular » Mon Oct 11, 2010 10:28 am

At some point they'll get better at relating lesion location to blockage location. I asked Dr. Sclafini how occluded jugulars could cause a spinal lesion. Here is his reply:
The theory is that outflow obstruction of the cerebrospinal venous flow results in luxuriant vicarious collateral perfusion through vessels not developed to handle such flow. This may result in loss of integrity of the small veins and result in "backwash" damage to the spinal cord.

That's freaky that we have the same type of lesion and similar symptoms. I haven't had treatment or a venogram yet so hopefully they'll be able to look at my lumber plexus and have a good look at my azygous.

I tried IBT for 4 months. It had great effect in straightening my spinal alignment which had gone out of whack due to over a decade of AFO use. It was neutral on my MS and if anything it seemed to make it a bit worse. The deal breaker for me was that it was giving me a big gut. It's pretty unlikely to cause any harm so you may want to give it a try.

Your results are very encouraging to me and represent what one should expect if CCSVI theory is valid - attack the attack mechanism and give damaged nerves a chance to heal.

We may need remyelination drugs to get us the rest of the way. Apart from that I am hoping Ampyra makes it to market soon in Canada (it's available in the US) as it is supposed to improve damaged nerve function, albeit only temporarily.
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Postby fogdweller » Mon Oct 11, 2010 11:09 am

JCB wrote:I was surprised that there wasn't blockage in the azygous, but the cd of images I have cofirm what the Dr. said. With my symptoms and diagnosis I was confident that they would find azygous problems. I've been wrong before, just add this to the list.

It's possible that the MS diagnosis that each us have as a label are incorrect. Not afraid of being wrong again, I believe that CCSVI (still in its infancy) will redefine the types of MS.


I was just treated, and I too had very significant blockage in the left (75%) some in the right jugular (50%) and aleggedly none in the azygous vein, which is not what I was expecting. I too have PPMS, but very very slow. (35 years and I still don't use a cane very often. My problems are neuropathic pain, balance, total morning weakness and balance). I wonder if I had very mild, almost unnoticable Relapses, perhaps very often, and that gets labled as PPMS?

I did not expect any symptom improvement, just joped for ceassation of progression, but I noted surprising immediate improvements. I had not been able to stand on one leg and lift the other into my pants leg for 10 years. Getting my pants on in the a.m. was quite a procedure, usually sitting down. The first day I stood on one leg and lifted the other all the way knee high and slid it smoothly into my pants leg! then repeated, the other side. As I said it had been over 10 years.

However, the effects have faded somewhat, especially the a.m. improvement and I suspect very rapid, (a few dalys) restenosis.

The mental effects (including optical processing... I could drive much more comfortably in busy traffic for example, or scan grocercy store shelves for a product, which I could not do at all pre treatment) were also notable, but they had never been quantified so I can't "prove" anything. However, they too have faded somewhat although not completely, again I suspect restenosis.

Your experience sounds so much like mine that I will be interested in hearing how things go. Especially with your local IR and his reevaluation over time.
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Postby fogdweller » Mon Oct 11, 2010 11:17 am

Jugular wrote:We may need remyelination drugs to get us the rest of the way. Apart from that I am hoping Ampyra makes it to market soon in Canada (it's available in the US) as it is supposed to improve damaged nerve function, albeit only temporarily.


One of the exciting things to me is that if CCSVI treatment stops progression and further relapsese, the pharmaceutical billions will refocus on remylination instead of reducing the # of relapses, and that should result in some pretty quick progress there. There was alot more money to be made reducing relapses which did not cure the disease or stop progression, and if that changes, the golden fleece will be remylinating and restoring function. I am not cynical, they don't do this out of evil greed, they just naturally do this out of the way our system works.
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Postby JCB » Mon Oct 18, 2010 6:29 am

Update
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Postby Trish317 » Mon Oct 18, 2010 9:50 am

JCB wrote:Update:

Five weeks post liberation. Not much good to report on CCSVI, not such a good week. I was in a car accident on Thursday, no injuries that I can tell but my weak shoulder is sore and Plavix works. I am black and blue in perfect lines with the seat belt. Shoulder is black and blue from not staying together because of muscle atrophy. On Saturday and Sunday I had a fever, so nothing was working very well on my right side. Feel pretty good this morning no fever and heading to work.

I only have two weeks to get my shoulder loosened up before my Neuro appointment, so that will be my focus. One positive note, I rode my bike 25 minutes without my AFO and did not have the hitch in my knee that I used to have pre-liberation. I used to have to ride with my AFO and focus on pushing down with the front of my foot.

It's going to be a better week.


I'm sorry to hear about your accident. Sending you prayers and good thoughts for healing and more improvements.
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Postby Fernie12 » Mon Oct 18, 2010 12:17 pm

Sorry to hear about your accident. Just keep focusing on your health - you can prove the damn neuros wrong anytime. Focus on you. Heal well!
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Postby JCB » Mon Oct 25, 2010 10:34 am

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Postby JCB » Wed Oct 27, 2010 12:16 pm

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