This Is MS Multiple Sclerosis Community: Knowledge & Support

Have u treated or can u see a problem with treating a pwms who has a baclofen pump?

I have not treated anyone currently having a baclofen pump. If the pump is an indwelling reservoir in the chest, the catheter will go into the subclavian vein. So it is a challenge to get around the pump's catheter to get into the jugular vein. It does seem like this would be really difficult although it might entail a bit more caution. If the pump was indwelling for a very long time, its catheter could cause stenosis that might up the challenge. But no i do not think this would be a great problem

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

its like the size of a hockey puck in my skin near the abdomen, with a catheter that drips into the lumbar area....medtronic mfg...

Sounds like less of a problem than I thought

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr.S
I have just read up on others that have been treated and it seems to me to still be a guessing game from my prospective. And that must go for many others.
Cece's comments have reminded me of the learning curve and the unknowns for each individual.
Long distance, high cost packages for someone with slow progression seems to be unrealistic on a tight Budget!

*Coming over now and getting you to do your magic is still at high 'risk' of needing to have a second treatment. And in saying that, it is likely to be the way in the future as well?

*Is that how you see it as well?

Regards,
Nigel

Just had a look at the Hubbard video;
http://www.youtube.com/watch?v=bS1WYWssAkc
Very positive and very thought provoking.

**Following on from my previous question as I slowly (MS thing) get my head around the 'what seems like reality' questions, would it be a fair assumption that anyone looking at PTA should,
a. ask for IVUS treatment with a first PTA
b. be prepared for requiring more than one treatment
c. have no expectations for outcomes

**And a previous question that may have slipped through the net,
*My main point is actually regarding someone with 8 treatments. Is there risk that the point of no return has happened as the scaring for instance is still building up and issues are yet to develop?

Thank you,
Nigel

Dr S,
Sometimes, when a balloon is inflated inside a vein, two or more "indentations" are seen on each visible side of the balloon. This was seen in the RIJV of your latest case. Is this evidence of double-triple valves or something else?

I had that in my own veins: a double set of valves. Dr. Sclafani talked about it briefly here:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15421-210.html#p153823

(Although there can also be an indent in a balloon at the apex on a curve, which is meaningless and would be gone if the balloon were fully inflated:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-5475.html#p171840 )

Looking back at the image of the right jugular in this latest case, I'm going to guess double set of valves.
First image in the second row is the right jugular with the double indentations: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6780.html#p190962

Hello,
Brief history, I was treated at AAC in Towson. I was the very first patient treated there for CCSVI on January 10, 2011. AT the time 18mm balloons were used which i believe damaged the endothelium and thrombosis occurred in my left IJV. I have had 4 procedures (3.5 actually as once only one vein was treated).

The left IJV clots & a large collateral attempts to do its job. Then that failed, I felt terrible and met 3 of zamboni's criteria. Because of this, on the last procedure, I allowed a stent to be placed in the left IJV. It was open for a week, then, on double dose pradaxa, the stent filled completely with a clot. I felt good when it was open, then I felt bad again. Cog fog returned. The doctor won't do the procedure again as he feels it will just clot again.

Also, NO mention ever was made of any valve problems which is a concern and I am worried that my azygous came back "normal" each time. Especially since problems with it have been stated as very intricate to see.

I am one of a number of people that had "thrombosis" happen and the vein clot off. (another being Marie Rhodes, RN, who wrote "CCSVI as the Cause of Multiple Sclerosis".

QUESTION: A number of people are just like myself and Marie, vein thrombosed and with a stent. What developments are happening and what, if anything, can be done to clear or correct a clotting vein? Is there any hope for people like us? Are you working on solution to this problem that happens more than you all would like?

http://www.youtube.com/watch?v=qNkqZnpEMv4

Thanks!
Judy

Hello Dr Sclafani,
I was diagnosed with MS four years ago. My symptoms of fatique were profound. I also had main complaints of tingling/pain in my face, headaches, severe sinus pain, nystagmus, ringing ears. When I had venoplasty 11 months ago, these symptoms were almost gone. They have noticably returned all together. The nystagmus is difficult. How is nystagmus related to poor jugular flow and how can I prevent restenosis? Do others have similar experiences? Thank you for your work in an area where, in my experience, neurology has little to contribute.

I think it represents a second set of valves.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

To Drs Sclafani
I have had MS since 1999, have had around 10 courses of high dose iv steroids (1000mg of solumedrol per day for 5 days per course), been on Avonex for 6 years and have stage 2 osteo necrosis of the left hip, probably from steroids - I have been offered the surgery where they drill little holes into the head of the femur to encourage revascularization (forget what it is called!), but I am still thinking about it.
Regards

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Al

How long ago was this? I always advocate for people who clot to get the clot dealt with as soon as possible. A clot in the vein damages the vein while it's there.

Dr. Sclafani, last November Dr. Cumming posted case #8 on the IVUS thread. How would you interpret these images? Is it a case of lumen loss due to scarring? Would you expect this vein to open back up again to its original size if reballooned?
here are the images: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16483-90.html#p179825

Nigel
there are two issues here. Firstly recognize that MS is a neurodegenerative disease with neuronal loss. That will result in disability. This disability is unlikely to heal itself; at least in the short term.
CCSVI, an associated condition, with outflow obstructions of the veins draining the cerebrospinal venous circulation, results in altered drainage that may affect cerebrospinal arterial inflow and arterial pulsatile flow, and decreased drainage of cerebrospinal fluid with resultant hydrocephalus. Relief of this obstruction affects some neurological symptoms such as chronic fatigue, temperature intolerance, memory and cognition disturbances and vision disturbance, often quickly. Sometimes other symptoms such as spasticity, ataxia, motor and sensory abnormalities also improve, usually not so quickly.

Opening a vein can be done with precision and safety but what result you get from venoplasty likely depends to a large degree on the degree of neurodegenerative neuronal death that is present.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com