This Is MS Multiple Sclerosis Community: Knowledge & Support

it is difficult to explain the right sided swelling on a left sided narrowing, but the left sided swelling could be compatible.

it is an interesting concept, but i do not understand it. I think treating both sides makes more sense for patients, less costs, less time,

but actually there is no data on this approach. I await the paper by dr vogl

remember disability does not correlate with the sites of stenosis. At least not proven.. I am assuming that a lack of anatomical continuity means one could not get a guidewire across the obstructing vein. Just a warning....some doctors have diagnosed the vertebral vein as a jugular vein having lost continuity to the dural sinus

the reason i favor ultrasound over mrvenography is that it can be performed quickly and less expensively at regular intervals.....i use 1, 3, 6, months and every six months there after

if you identify restenosis and doppler shows insufficiency, then venography is warranted. I would not wait for symptoms to redevelop. If symptoms redevelop, i would do venography, probably after doppler

Hi Doc!
You are up late! Hope you aren't having trouble sleeping!

It's been a long time since I've posted. But, I just had to thank you again for everything you are doing on our behalf.

Are you any closer to being able to do some plumbing work??? Your anxious fans are awaiting your return!

All the best.
Mum

it seems like the questions have significantly slowed down. So I come here less frequently. I lurk a bit on the other sites, occasionally offering my opinion.



we shall see. would be nice to have such a test that was reliable, reproducible and timely

yes, i had to race two neurologists who proved to me that wheelchairs without wheels are no match

when i have something to say, i will say it....

Got it! I won't ask again. Take care.

About six months ago I put you in contact with an Australian IR you previously knew or know of. He also applied for approval for a study here in Aus (and was rejected). Last time I saw him he explained the design of the study, and it sounded pretty interesting. Maybe you could email him again for clearer details.
The basics (from memory) were:
1. About 200 Patients (all MS)
2. Split into two groups (ie A & B each consisting of 100)
3. All patients would receive a venography, under a combination of 2 anaesthesia's. I don't remember the names of them, but one caused the patient to loose all track of time (so they had no idea how long they were in the operating theatre) and the second caused them to forget what happened during the procedure, with neither actually causing the patient to black-out, so they remained responsive to the person performing the procedure (ie hold your breath etc etc)
4. Half the patients would also receive treatment on this "first" venography, but no-one would be told if they did or didn't.
5. The raters were blinded to which patients were treated, and the dr's performing the venographies were to be kept away from the patient groups and raters.
6. Two months later, ALL patients would again undergo the venography, with the second group (not treated the first time) receiving treatment this second time. The patients that were treated in the first pass would be checked and treated for any restenosis.

The thing that sounded good regarding this study, was at worst, you would be treated in 2 months.

The dr's performing the venography / treatments are kept separate to the rest of the studies participants (ie patient, raters etc etc) so it attempts to approach the double blind criteria. They also had sneaky plans to push the placebo effect, but that would be hard to explain, clearly, not that the above does it all justice. I guess I simply liked the fact that worst case you would be treated in 2 months.

They also had plans to expect a % of people they didn't find CCSVI in, and the 200 (I think) number was based on achieving a certain confidence interval, assuming they didn't underestimate the number of people not found to have CCSVI.

ok dr s. I know you are not hot to trot for stents but are the problems with them occluding caused by cell proliferation. Seems like ms folk have sticky veins(or sticky blood ) besides malformed veins. My humble opion a large dose of NAC (n-acetyl cysteine) taking continuously forever. this has been found to reduce excess cell proliferation even in cancer studies. It also is antiinflamatory and of course increases glutthione production. Hey my angioplasty from you didn't last to long I deffinately feel worse. But I also deffinately got intial improvements. So I will try again . Maybe larger ballons and web removal will be the trick. I stillthink dakes stent patiients have the highest incidents of long term improvements.But I understand your fear or worse damage. I think if you really keep an exact running chart of complaints of restenosis you are going to hear pains in neck , feeling of lack of oxygen, tiredness, cognitive fuzziness, and of course increased disability. don't ignore the aches in necks or on forehead where the veins are.these are signs. B

It could also good for people to take before a CT scan to help protect against potential negative effects caused by the contrast dye.. here is an article about it.

Hi Doc over on Dr. Flanagans thread they are talking about the effect of over draining the brain and consequent effect of CSF, do you think that there is going to be a balance in how much flow is required?
http://www.thisisms.com/modules.php?nam ... 019#138019
uprightdoc
Family Member


Joined: Oct 01, 2010
Posts: 64
Location: USA
Posted: Thu Oct 14, 2010 2:40 am Post subject:
Hello All, I am currently in communication with another angioplasty case that may be related to over draining the brain resulting in regression of signs and symptoms. Nonetheless, it is still my belief that venous angioplasty and stents will offer an alternative to CSF shunts as well as for venous drainage. However, as I mentioned previously and in my book 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.

Thinking over what jak7ham9 said, one thing that stands out for me is that Dr. Dake was able to do a two-month check-up, at which many or most patients received an additional venoplasty or stent. His results may speak to the value of follow-up care, not the use of stents.

Jak7ham9, wishing the best for you.

Obstacle 1 can be overcome by taking the Premier of Saskatchewan, Canada up on his offer to fund clinical trials (though you'd likely have to do them there).

CureOrBust below seems to have a workable solution for #2, though:

If you added a step 3.5 - all patients will be dropped off in Vegas immediately after - enrollment might improve.