This Is MS Multiple Sclerosis Community: Knowledge & Support

i havent noticed such posts to understand the implications of your statement.

Some of the trials have excluded patients with high EDSS. REasons are that recovery is less likely.

each doctor must decide with patient input of course, whether he or she is willing to undertake a higher risk procedure. That was my initial opinion.

However after meeting some ohese most unfortunate, i could not withho,d treatment to those in most need. Even slowing the disease means the most to these patients.

who am I to not try?

in terms of liability, i must declare that I am not a lawyer and would not want to talk about liability. I think decisions like this are very personal. Patients at the extreme do not have reserve, they cannot easily fend for themselves. Many of these are vulnerable in breathing.

in the end , if the notes reflect that the patient understood the risks and still agreed to treatment, some liability risk is reduced. Unless it could be proved that the doctor callously disregarded all the recommendations of his or her peers.

can you post an image? It sounds like intimal hyperplasia. how long after stent placement was it ? Stent extension? covered stent? repeat angioplasty/

i hate stents

You recommended that my local doctor monitor my blood coagulants and hemoglobin and I just got a lab slip. Here's what my neurologist checked off:

CBC with/DIFF
PTT, Activated

1) This is a language that I'm just learning and am wondering if this sounds like the right stuff to be monitoring.

2) Does it matter if I have blood drawn soon after my injection of Enoxaparin or do I need to wait to inject until after the lab takes my blood? Thanks.

Patrice

I agree with this, it seems the most decent and human thing to do.

Repeat angioplasty, covered stent, not an extension

My follow-up was 3 weeks after stent placement but I really think restenosis occurred 3 days after (I had a momentary tweaking pain in my neck and none thereafter. I was walking much better the day before!)

I did not get an image copy. When I asked the doctor about the narrowing, he dismissed the image as possibly being taken during breath expiration and that's why it showed narrowing. (which is a possibility) I think he had reached the edge of his comfort zone with this and was trying to pass me on to someone else.

I had seen temporary improvements after each of my prior 2 procedures and was desparate to get this vein back open, and this doctor could do the procedure within a week so I did it - wish I didn't!

He also told me that he could not get into my azygos or up my right jug. I think lack of persistance might have been an issue. I believe he was scheduled for something else right after my procedure and since the prep nurse had a flat tire, we started late!

I am working on getting a procedure date with you and wanted to run this all by you beforehand

Unfortunately now, I realize convenience is no substitute for CCSVI expertise and experience! I feel like an idiota!

Thanks!

AlmostClever

_________________
If you can't explain it simply, you don't understand it well enough. - Al Einstein

Dear Dr. Sclafani,

thank you very much, for me this is 'big' thing and hope.
Next week I will be in Sofia and I'll be really happy to mention Dr. Petrov our conversation and your opinion.
I sincerely hope that you do not mind.

give ivor my best wishes

however please note that it is my opinion. there is no clear fact on what represents a significant amount of stenosis

Wouldn't expiration do the opposite and draw blood into the IJVs? So it would be distended, not narrowed, during expiration. It's a minor point.

I hope it turns out to be nothing, AlmostClever. Or treatable if it is something.

Dear Dr. Sclafani,

I have PPMS for about 4 yers ago; however, I can still walk a few hundred meters at a normal pace at one time and can be in a motion for the whole day. I already had a CCSVI procedure about a month ago. They found a long, medial stenosis in the right IJV that was dilated. The left IJV and the azygos was fine. Unfortunatelly, I just found out a month after the operation that my right IJV got restenosed in a 1 cm long section. As my condition continued deteriorating I am just wondering if the deterioration could be due to restenosis or some veins other than IJV and azygos are also stenosed. Why do no one check other veins for these patients at most of the hospitals? Dr. Salvi, a neurologist working with dr. Zamboni, said clearly that they found a sort of ABSENCE of VENOUS OUTFLOW from the SPINAL CORD in case of PPMS patients and in most cases there was NO problem with IJVs. PPMS patients have laesios in the SPINAL CORD not only in the brain. Are interventional radiologists considering these facts when doing the CCSVI procedures? Is there a relation between the location of the laesios (e.g. brain, thoracic, lumbar or cerical part of the spinal cord) and the veins stenosed? What is your view on the veins that could potentially play a role causing laesios in the different part of the spinal cord and therefore at PPMS patients?

Look forward to hearing from you.

Hi Dr. Sclafani,

CONGRATULATIONS on your busy morning today at ISET.
Hopefully, we won't have long to wait for you to tell us all about it!

• Hi Dr. Sclafani,
I would like to know your opinion about the following questions, what makes me a little bit confused after reading about the technique, what is used by Dr. Sinan, and Dr Arata. ( Larger balloons, and destroying the valves)
In my knowledge the jugular vein valve is the only valve between the heart and the brain, which has a significant role in the prevention of venous reflux and plays an important role in preventing retrograde blood flow to the brain.
Are they really “destroying” the valves or restoring the original normal function?
If these velves are permanently destroyed then it does not affect the intracranial pressure?
If they are destroyed what is the long-time effect of that? Does it increase the chances of transient global amnesia?
What happens with the remaining pieces of the valve?
Could transient blood reflux up into the brain cause MS lesions and damage, if valves are not there any more?

Sorry if any of these were questioned before, but I was not able to find the answers.

Thanks

Dr. Sclafani, did you ever get any good IVUS images of a valve after it has been destroyed?

Not sure if we'll hear from you tonight or not! Did anything from the other doctors' presentations change the way you think on any aspect of CCSVI?

patrice, as my patient, i would prefer to have this conversation with you via my cell phone. but as you ask me,

THE PT and PTT are not useful for monitoring LMW Heparin, or lovenox.

there really isnt any practical testing for enoxaparin. therefore it really isnt going to matter when you take the test.

the only test that is reliable is an antithrombin assay. An anti-Factor Xa level is the ONLY reliable way to monitor LMW Heparin
The anti-Xa level should be drawn 4 hours after the 2nd or 3 rd dose. In fact, most patients do not
require any monitoring. only in patients with associated conditions that increase bleeding risk, such as kidney failure, prior strokes, gi bleeding, or patients about to undergo surgery, should be tested. if you are also taking another anticoagulatnt such as aspirin or plavix, that is another story.


so take the tests but ask you doctor what he is going to do with the results.

i wished you lived near me. nyc is a nice plalce

This was discussed at ISET: who should be treated. I was a lone voice for treating high EDSS patients on humanitarian grounds. I think they got the point.

could it be spasm or pressure on the stent? could the stent have bent by the forces of the neck? could thrombus have formed at the edge of the stent.


actually the vein distends during expiration

might these be occluded or restenoses?

there is always stress when doing procedures. its too bad there are patients on the other side of that stress. We are, afterall, all human

around ccsvi, we all feel like idiota sometimes. whenever you think you have finally figured it out, something new pops up.