DrSclafani answers some questions

[joana123]

Thank you for your reply.
I don't know what to do, the doctor did not want to redo the balloon angioplasti: said that it makes no sense, and sent me home. I am desperate, is there any hope for me?
What can be done in my case?

With respect.
A.

He has not been back to answer this but he will be. I am pretty sure the answer is YES there is hope for you. Your doctor did right to not stent there. Dr. Sclafani is saying that it is not where the blockage is. The blockage is lower down. This blockage still needs to be found.

What country are you in? Do you know of any docs with CCSVI experience in your country?

A blockage lower down causes low flow in the vein. This low flow allows the artery to press on the vein. But if the not-yet-found, lower-down blockage is fixed, the vein will be stronger and have better flow. Then the artery will not be a problem for it.

There is lots of hope for your case. Best wishes.

Dear Cece and Dr.Sclafani,
Thank you for your reply. I am from Bosnia and Herzegovina, and balloon dilatation have made in Serbia, in Belgrade Dedinje hospital. I'm sending you a discharge summary from the hospital, which is visible from my situation.

This is a letter from the hospital
43 years old patient, admitted for additional evaluation.
In June this year was the hospital treated at our institute, when the planned flebografy dilatation and eventual left jugular vein. Then, after ultrasound and scanner processing, and made diagnostic and partial dilatation, ie. venous confluence of both sides were dilated, and the middle segment of the left jugular vein was not successfully dilated due to anatomical anomalies, or pressure on the veins of the bulbus of the carotid artery.
During the procedure, then, there was bradycardia and hypotension. The patient is in serious condition, it is about multiple sclerosis, slowly progressive type, can not to independently walk.
Upon receipt at our institution, patients and exposed to an extended vascular-neurological council, where it was decided to further interrventne procedures do not try because the above-mentioned position bulbus carotid artery and jugular vein to the left keeping in mind that during the last dilatation occurred hypotension and bradycardia.
Therefore, forgive the patient departments.

[lifeisgood]

Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

I think this might get lost in all the postings that will be happening since the symposium is today., but I'll still try...

Here is our story:
About two years ago, on a typical Saturday afternoon, my husband (RRMS for about 20 years) had been sitting for a short while when he noticed for some reason his numbness in his legs felt much better. I was in the room with him and it was somewhat eery, because he had this confused look on his face. He shook his legs, stood up and walked around to experience the feeling of normalcy return to his lower legs. He walked around the house, went up and down the stairs (which he could do before, but he was trying to "test" things out) all very confused about what he was feeling. At the time, he told me that his legs felt normal. It gave me goosebumps watching him experience it. It was shortlived though, and within an hour, as I remember, he was back to 'his' normal.

Could his veins somehow have moved or twisted so that bloodflow was able to make it through? It was a very "out of body" experience for him. Anyone else ever experience a drastic temporary improvement like this before?

Thanks Dr. S - You're the best and good luck today! Go show 'em!

[LadyGazelle]

Is it Multiple Sclerosis or CCSVI? Get tested!
ThisIsMS forum: http://tinyurl.com/25ks43k

When people go to that link it will take them here, plus the place where they land is the link to ENDOVASCULAR TODAY.

Or to go directly to the link, http://tinyurl.com/24qs4vj

This morning I have given the link OVER THE PHONE - (easy)
to the supervisor of the radiology department where I got my MRV so she (#1) knows what everyone will be doing in the future, she is going to give it to the IR (#2) who didn't know how to read it, and also the director (#3) of the IR department I spoke with also.

I also called the doppler technician (#4) and asked him to give it to the vascular surgeon (#5) who is in his department at the hospital plus he will mention the magazine to others because they of course have a physical copy.

Then I called the TRANSRANIAL doppler technician (#6) in another department (Neurology) and gave it to the secretary who I am thinking she may go there too (being nosey?) (#7).

I also had checked into another imaging facility associated with another hospital who do transcranial dopplers and angioplasty and I called back with this TINY URL for the supervisor but I had to leave it with their secretry (#8 ) to give to her (#9). The surpervisor told me when I met with her last week that the group of IR's are mostly doing arteries but she was going to discuss CCSVI with them so she should give it to them also (#10, etc.)

All this with one TINY URL over the phone! All I say is "tinyurl.com/24qs4vj" and everyone knows it's a website - so the http:// will pop in there automatically when they type it in.

If you have anything you would like to shorten to a tiny url, just go to www.tinyurl.com and you will be given a shortened version. I've said this in another thread, but I messed up copying and we can't edit our posts here.

BTW - I print tags on cardstock and hand them to people or stick them up around town with adhesive stickers. They also say, "Is it Multiple Sclerosis or CCSVI? Get tested!"

But the good part is, on that same tag I also say "Questions & Donations: Page 800-245-1323" and I will be putting a message on there sometime today. Call back if it's not on there yet. (I've gotta think how to say it.) I want to explain that donations will be given to others as they help meet the needs of each pwMS who leaves their contact information with me. (Something like that.)

[Rompers]

Dear lifeisgood,

I know what you are talking about!! I too have had 2 repeats of that same type of situation. Mine occurred after sitting through a local theatre (two hour) production. These instances were times that I did not stand/leave for the intermissions.

It seemed miraculous that my legs (right one is more challenged) were actually capable of walking fairly normally. (with my husband arm) We would arrive home and we would go for a walk down our street! But I also knew after the first time, that the ability would be gone in the morning....

This is the first post I have noticed, where someone has related this same type of occurrence, but these occurrences for me was why CCSVI made a whole lot of sense!!!

Note: I have tried to recreate the sitting, looking for another occurrence, but with no luck. Will hope during the next season of plays!

Rhonda

[MS_HOPE]

lifeisgood, I can relate also. Many years ago, on one occasion only, I was able to actually "hop" down the stairs rather than going slowly one step at a time. In more recent months, when I'm really tired and feeling brain fog and lie down to rest, sometimes after just a few minutes I'll feel a very abrupt clearing of my mind, and more energy, almost as if someone had turned on a switch.

[sbr487]

Doc, a very basic question probably -

1) Is it possible to measure the total outbound (from heart) and total inbound (to heart) blood?
2) If yes, there would probably be a certain ratio between inbound and outbound (assuming de-oxygenated blood would have less volume compared to oxygenated)
3) This ratio might be different in healthy persons vis-a-vis MS patients

Your thoughts?

[prairiegirl]

[quote="lifeisgood"]Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

...interesting question!

Hope the symposium is going well-- am following girlgeek33's reports, but looking forward to hearing the discussions in detail. Thanks Dr. S!!!

[Cece]

Dear Cece and Dr.Sclafani,
Thank you for your reply. I am from Bosnia and Herzegovina, and balloon dilatation have made in Serbia, in Belgrade Dedinje hospital. I'm sending you a discharge summary from the hospital, which is visible from my situation.

This is a letter from the hospital
43 years old patient, admitted for additional evaluation.
In June this year was the hospital treated at our institute, when the planned flebografy dilatation and eventual left jugular vein. Then, after ultrasound and scanner processing, and made diagnostic and partial dilatation, ie. venous confluence of both sides were dilated, and the middle segment of the left jugular vein was not successfully dilated due to anatomical anomalies, or pressure on the veins of the bulbus of the carotid artery.
During the procedure, then, there was bradycardia and hypotension. The patient is in serious condition, it is about multiple sclerosis, slowly progressive type, can not to independently walk.
Upon receipt at our institution, patients and exposed to an extended vascular-neurological council, where it was decided to further interrventne procedures do not try because the above-mentioned position bulbus carotid artery and jugular vein to the left keeping in mind that during the last dilatation occurred hypotension and bradycardia.
Therefore, forgive the patient departments.

Dr. Sclafani is busy today with his symposium. I hope there is more he can tell you. His response is worth ten of mine. He's a great guy, you came to a good thread. Take care.

[L]

Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

After a transatlantic flight I felt like I was cured! I was amazed at how I could stride through the terminal. I started a thread on this ages ago and most who replied said that flights seemed to bring on relapses but for me the improvement was quite amazing. I wonder if the altitude could have opened up my veins?

[CCSVIhusband]

I've read a lot of similar stories LifeIsGood ...

I wonder what there is to it - especially because most of the people I've heard it about have had MS (I mean CCSVI) for many many years ... and then all of a sudden boom ... they're fine, for some short time.

The only explanation I have is the open veins for just some short period of time ... BUT if that's the case, how is the nerve damage caused by all that time with MS (I mean CCSVI) overcome?

interesting indeed ...

[Cece]

"Symposium on CCSVI
State University of New York Downstate Medical Center
395 Lenox Road
Brooklyn, New York 11203
Monday July 26, 2010
9:00am-4:00 pm"

9:00-9:30 Fabrizio Salvi Ferrara Italy Clinical Manifestations of CCSVI
9:30-10:00 Sal Sclafani Brooklyn, NY An overview of CCSVI for Interventional Radiologists
10:00-10:15 David Hubbard San Diego, Ca Delayed fMRI BOLD venous undershoot in cerebral cortex of patients with multiple sclerosis.
10:15-1045 Mark Haacke Detroit, Mi Characterizing the Manifestation of CCSVI with MR Venography and Flow Quantification:The role of MRI in treatment planning
10:45-11:15 Sal Sclafani Brooklyn, NY IVUS: the role of intravascular ultrasound in understanding the disease
11:15-11:30 Michelle Brown Connecticut Patient activism
11:30-1:00 Lunch in Cafeteria or on your own
1:00-1:30 Tariq Sinan Kuwait Initial Experiences in the Kuwaiti Trial
1:30-2:00 Ivo Petrov Bulgaria Initial Experiences in Sofia, Bulgaria
2:00-2:30 Gary Siskin Albany, NY Initial Experiences in Albany, NY
2:30-4:00 Audience and Faculty CASE REVIEWS. Audience cases welcome

bumping this forward
It is currently 1:16 in NY, so Dr. Sinan is speaking on his experiences in the Kuwaiti trial.

[KDGO]

So how do we deal with restenosis.

There are drugs that can reduce the inttimal hyperplasia. Some (serolimus) are placed on the surface of the stent to reduce ithat response. Other techniques include freezing the endothelial cells, platelet inhibition can be accomplished by anticoagulation, antiplatelet agents such as aspirin and plavix, reangioplasty is done sometimes, covered stents reduce the risk as well.

in CCSVI we are dealing with abnormal tissue development so restenosis can occur because of elastic recoil of that tissue. also restenosis can result when the valve that is pushed against the wall of the vein, begins to return to its original shape and orientation.

What have the various post procedure protocols been? Heparin or Plavix or aspirin or? Has or is there a standard here after angio or stent?

[Rosegirl]

I accidentally created a new post called "sudden but short remissions". Maybe it's just as swell since this thread has become so long and all-encompassing.

[Cece]

What have the various post procedure protocols been? Heparin or Plavix or aspirin or? Has or is there a standard here after angio or stent?

Dr. Sclafani answered this in part in his EVToday article:

The procedure is performed under local anesthesia in an ambulatory setting. Most patients are kept in the hospital for 1 or 2 hours and then discharged. Most physicians treat patients with clopidogrel or short-term anticoagulation with heparins, enoxaparin, or fondaparinux. Clinical and imaging follow-up varies among investigators.

http://bmctoday.net/evtoday/2010/07/art ... ufficiency

[KDGO]

Cece
Hot off the press..thank you for your response. I wish that there was some quantifying of the last paragraph's points after the known procedures. Noted the PP wondering about SP? I understand that this is all so new but with info from a year I wonder what it might be.
Again thank you for more pieces to the puzzle.