This Is MS Multiple Sclerosis Knowledge & Support Community

nancymno wrote:

drsclafani wrote:

TMrox wrote:Dear Dr Sclafani,

I'm posting these questions on behalf of Tim. He has tried to open an account in the forum on several occasions, but for some reason it has not worked.

"Hi Dr Sclafani

I had the CCSVI procedure done in Providence, RI on September 23, 2010. He found my left jugular vein 75% blocked, right jugular vein more then 50% blocked, azygos vein over 50% blocked, and the iliac vein under 50% blocked.

He did angioplasty on both jugulars and the azygos, but not the iliac. Have you seen the iliac vein blocked in any of your patients? If so, what percentage and what did you do for them?

Tim, it is detected from time to time. I do not treat it if there is no symptoms from it.

Ultrasound on September 24 showed right jugular vein open and flowing, but left jugular vein closed due to a blood clot. I am currently on lovenox 60 mg and coumadin 7.5 mg. I had my second blood test today to see if I am on the correct dosage of coumadin to stop the lovenox.

were you on blood thinners during and after the procedure??
so sorry this happened to you. It is pot luck whether the clot will spontaneously dissolve. The coumadin prevents new clot but doesnt really do anything for the old clot.

I am scheduled for another ultrasound on October 14, 2010 to see if the clot has dissolved. He wanted to stent after the clot on the next Monday to open the vein, but I declined the stent.

{quote]Have any of your patients clotted after the angioplasty? If so, what was your procedure and how long did it take for the clots to dissolve? Did all of the patients with clots have them dissolve through blood thinners or did you use other procedures as well? Is they still have clots do they have to stay on blood thinners for life?

i have had one patient develop blood clots in the vein. We spent three days in the hospital dissolving the clot but as soon as we dissolved it all, it clotted again. We eventually gave up and put the patient on coumadin for 3-4 months. After that the vein was permanently occluded by clot.

To let you know I am between diagnosis. At the age of 14 in 1971 I was diagnosed with Transverse Myelitis. In 2009, I was diagnosed with Optic Neuritis. I do not have lesions on the brain or cervical spinal cord so MS has not been diagnosed, but not ruled out. NeuroMyelitis Optica has not been diagnosed, but not ruled out. Having two demylinating diseases with both TM and ON have not been ruled out either. I also had a heart attack in 1996 at the age of 38 and a discectomy and spinal fusion at L5-S1.

Thanks for you listening and your advice.
Tim"

hang in there tim, and I hope that this works out for you

My left iliac vein has a "substantial" blockage. The IR said she would treat it if I lived closer to her area. I have had swelling for the last year in my left ankle. More recently I have had a slight swelling in my right ankle. Could the left iliac blockage account for this swelling?

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

sbr487 wrote:Dr. S, thanks for answering my previous set of questions.

Dr. S, given stenosis in both the IJV, do you think it might be prudent to first open up either one of the IJV and see if that helps and then take a call on the other one?
Someone brought up this point that Dr. Vogl in Germany treats both the veins but with a gap of a week or so, since that would reduce the chances of restenosis of both the veins at the same time. My question is really an offshoot of that.

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

belsadie wrote:Dear Dr. Sclafani.
I am wondering just what implication this finding after an angioplasty has on my persistent Left sided disability : "No anatomic continuity could be established between the upper Right internal jugular vein and sigmoid sinus. The upper Right internal jugular vein appears narrowed but was not treated since continuity cannot be established."
I'm going for a f/u this month....Can you give me some insight before our meeting .
Thanks for being so smart................................................

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

Cece wrote:

1eye wrote:I don't know why nobody has tried what my brother has had in his jugular for nearly 50 years: a plastic shunt. Restenosis and clot-occlusion are I think much less likely.

1eye, wasn't this for hydrocephalus? This was a shunt outside of the jugular, draining the CSF from one end and depositing it into the jugular in the other? What's interesting is that you and your brother both had cerebral drainage issues.

DrSclafani, here was a question someone asked you, although it didn't land in this thread:
http://www.thisisms.com/ftopicp-137569.html#137569

My question: you once brought up the need for doctors to catch a restenosis or clotting when the vein had only narrowed rather than closed up completely. All I can think of is hypervigilance to any return of symptoms. Did you have any ideas? If this happens, is it safe to wait weeks for a follow-up or is a more immediate response going to be better for outcome?

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

Cece wrote:24 hours without a post!

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.

Jugular, to get up to speed on the drsclafani story, try this post:
http://www.thisisms.com/ftopicp-136517.html#136517
or
http://www.thisisms.com/ftopicp-136770.html#136770

We are discussing elsewhere on the forum if a hemosiderin urine test would be of use in CCSVI, as it is in CVI. Zamboni did some research on CVI in the early 2000s that showed the hemosiderin test in CVI was useful in making the diagnosis and in testing afterwards to see if the surgical procedure had been successful. Possible use in CCSVI or false analogue?

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

Donnchadh wrote:Cece,

Dr. Sclafani is getting fitted for his Ferrari wheelchair team racing jacket.

Donnchadh

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

QueenMum wrote: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

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

drsclafani wrote:

QueenMum wrote: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

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

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

drsclafani wrote:...
2. They wanted a double blinded study....i think that is premature, but probably needs to be done once we have figured out safety and best practice issues.

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

jak7ham9 wrote: My humble opion a large dose of NAC (n-acetyl cysteine) taking continuously forever.

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.

drsclafani wrote: whoa pardner!

They are just good men and women, trying to assure confidentiality and safety of the volunteers.

i did not appeal because of two insurmountable difficulties in the short term:
1. they wanted this funded by a grant, not paid for by patients.....good point, ideal actually, but i do not see pharma offering to fund this and the catheter manufacturers do not have adequately deep pockets

2. They wanted a double blinded study....i think that is premature, but probably needs to be done once we have figured out safety and best practice issues.

in the meantime, i have been continually exploring all kinds of alternatives, none of which has reached fruition. I am hopeful now, tho

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:

CureOrBust wrote: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)

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