This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Sat Jan 22, 2011 5:41 pm**

Dr. Sclafani has explained his observations concerning malformed valves and annular constrictions impeding cerebral venous drainage via the internal jugular veins. He has discussed this many times and repeatedly noted that the valves are not normal and they are not functioning properly.

Posted: **Sat Jan 22, 2011 9:01 pm**

Suzq77, yes, I completely understand your position.

Very glad to hear that the u/s shows good blood flow!

Posted: **Sun Jan 23, 2011 11:35 pm**

suzq77 wrote:
eric593 wrote: Suzq77 - was that risky to balloon not only your RIJV but the collateral as well given that the other side and your azygous were blocked too? Did the doctor think it was risky to interfere with the only blood drainage route and its collateral since treating the other side and your azygous had resulted in.even worse blockages?
What's not risky? Walking out my front door is a risk. Taking four years of Novantrone, increasing my chances of heart damage and leukemia, was a risk. But I did it. I'm dealing with a lot of unknowns, that's just the nature of the cards I've been dealt. I think we're all just trying to do what we can to fight a disease that successfully dodges almost every bullet aimed in its direction.

I'm not being flippant or making rash decisions. I'm trying to do the best I can with the information I have. I trust my doctor. I just had a few questions regarding Dr. Sclafani's opposition to stents. I want what everyone else wants: to get better.

And the right side has always been the least troublesome. As of my 2 week follow up ultrasound (which my IR orders for the day after and 1, 2, 3, 4 etc weeks post) it looked great.

No offense to the good doctor, as he has selflessly devoted countless hours of time and energy to this cause for no personal gain of his own, but his is just one opinion. Certainly not the final one. The one that matters the most to me? Mine. It's my body and I decide what I'm going to do with it. I only get one; might as well make the most of it.

no offense taken.
in desparate situations, we make desparate choices all the time.

true that you take risks going out your door, but you dont necessarily do that when there is a hurricaine or a m ass murderer walining around

my concerns for stents are my own concerns and only time and evidence will determine if i am unduly concerned or not. the truth is the n atural history of stents in veins is not that great or durable and that is my concern. i havent put one in for ccsvi yet and i dread the time when i will feel it necessary

Posted: **Sun Jan 23, 2011 11:39 pm**

suzq77 wrote:
drsclafani wrote:
suzq77 wrote:Dr. S,

I noticed in an earlier response on this thread you said, "I hate stents."

Do you mind me asking why? After 2 venograms (1st to treat stenoses, 2nd to treat valves with larger balloons opened for longer) I restenosed - worse than ever - and all improvements regressed with a vengeance. In fact, my left IJV is completely occluded with a clot and my azygous is almost completely occluded as well.

During 3rd venogram in the 2nd week of January, doctor was unable to get to either occlusion - neither via femoral/lower approach nor via neck/higher approach with left IJV. Currently my right IJV is "big enough to drive a truck through" to quote the ultrasound tech, accommodating 75% of the blood flow. There's even a collateral on the right side (almost as big as right IJV( that needed ballooning, along with the right IJV). Both responded well.

I am scheduled for a 4th venogram with planned stent placement in a little less than 2 weeks. He doesn't like to use stents in someone my age (33) but it appears there are no other options.

Your thoughts and feedback are, as always, very much appreciated.

Thanks!
i hate them for many reasons
1. they are not designed for repeated rotations
2. they are not designed for the jugular vein
3. thombosis
4. intimal hyperplasia
5. they are used for failures of angioplasty
#1: do you mean movement in the neck?
#5: would you consider my situation a failure of angioplasty? It seems like a last resort treatment.

Thanks!

yes, the neck is always m oving and wires tend to fatigue and fracture. this will only increase intimal hyperplasia
possibly. it might be a failure to diagnose, a failure to treat properly, it might be about stent selection, anticoagulation choices and time and it might be about the pathology you had.

at the moment i am opinioning blindly without knowing the circumstances, your clinical state, etc

Posted: **Sun Jan 23, 2011 11:47 pm**

eric593 wrote:Wouldn't it also be considered experimenting on humans to destroy people's valves when, as you say, you don't know what the outcome is, only that 'some' people are born without jugular valves without apparent problems? Shouldn't more be known about outcomes before valves are routinely destroyed? Especially when people are paying for procedures like destroying valves where no data on safety much less efficacy exists? Could you possibly speak about the ethics of this kind of treatment that seems to go much further than performing an established procedure (angioplasty) for a different medical situation (symptoms of fatigue, cogfog, etc)?

eric
dr zamboni did a safety study and did not have complications. we know they would occur but they did not in the safety study.

i would never destroy normal valves, but these are not normal: they are stenotic, fused, misplaced etc.

we each have our own ethidcs. we look at the circumstances, we assess risks, we discuss those risks and options with my patients, and i act based on best understandings and intentions. i do not do this for my own agrandisement or financial gain. if i did, or if i misled my patients, or if did this for my own gain, i would consider that unethical.

with regard to whether angioplasty and valvuloplasty are different, i want you to understand that from day 1 of this journey, dr zamboni and most of us have treated the area of the valves. it is only through ivus that i learned that it was the annulus of the valve or the leaflets of the valve that were being treated. it was not anything different except our understanding of this.

we are almost always treating disease valves. Surprise!

Posted: **Sun Jan 23, 2011 11:48 pm**

drbart wrote:Hi Dr S,

Is it feasible to replace a long, thin IJV that has a long, thin (8x80!!) stent?

I see articles on bovine replacements.. has this work progressed to be useful to humans?

yes it could be done. the problem is the durability of those stents.

Posted: **Tue Jan 25, 2011 3:29 am**

Hi Dr Sclafani,

I know some may consider this question not relevant to ccsvi but I think it might. Would you recommend use of the vibrating/power plate as part of an exercise plan or do you think that the vibrations may damage further already compromised veins. (Have tried it once and it feels like even one's brain is vibrating) Research indicates that it is helpful to pwms. My local team asked me to be involved in a research study which is why I would like an opinion.

I had the testing in Poland last June and the Doctor diagnosed slow blood flow in the left jugular. I chose not to proceed with any procedures at that time due to concerns over sticky blood syndrome.

Sorry if this question has been asked before as I know you are busy and involved in a few threads on here.

Thank you again for all your help.

Regards
Mary

Posted: **Tue Jan 25, 2011 6:49 am**

Hi Dr. Sclafani,

Thanks again for all your work for us on this. Just a quick question that nobody has managed to resolve for me yet....

I was diagnosed with MS in July '09 with right sided weakness being one of my primary symptoms. I was treated for CCSVI in July '10 having been found to have stenosis in the left jugular vein. I have recently been re-scanned and my left jugular appears to have re-stenosed. I am trying to decide whether to go for treatment again very soon, or to wait a while.

My question is this... In recent months, I have been constantly noticing that my right arm and hand are very cold, and less frequently my right leg, whereas my left side is warm, particularly after lying down. The difference is very tangible to my husband too. I often wake in the middle of the night with my right arm feeling completely dead.

Does the left jugular vein impact the right side of the body more than the left? Do you think this is a circulatory issue? Or is it more likely to be due to prior nerve damage affecting my right side?

Thank you so much for your help.

Posted: **Tue Jan 25, 2011 1:39 pm**

drsclafani wrote:
Cece wrote:Dr. Sclafani, have you seen any patients yet who have had something that is untreatable as a result of a prior procedure? I'm thinking of an undersized stent, a clotted-off jugular, anything like that? If you haven't yet, will you let us know if you do? This has been a concern of mine for some time now, it is upsetting if any of our pioneers suffer as a result of getting treated while the doctors are still working everything out.
Yes, cece. can you hold this thought for a week until i return home. i will look for the example of a problem with stenting that made it impossible for me to attempt anything
s

still holding this thought! ;)

Posted: **Tue Jan 25, 2011 4:32 pm**

irishmum wrote:Hi Dr Sclafani,

I know some may consider this question not relevant to ccsvi but I think it might. Would you recommend use of the vibrating/power plate as part of an exercise plan or do you think that the vibrations may damage further already compromised veins. (Have tried it once and it feels like even one's brain is vibrating) Research indicates that it is helpful to pwms. My local team asked me to be involved in a research study which is why I would like an opinion.

I had the testing in Poland last June and the Doctor diagnosed slow blood flow in the left jugular. I chose not to proceed with any procedures at that time due to concerns over sticky blood syndrome.

Sorry if this question has been asked before as I know you are busy and involved in a few threads on here.

Thank you again for all your help.

Regards
Mary

I must admit mary that i am not particularly informed about this vibratory therapy. I cannot imagine how vibrations would affect flow of blood in patients with CCSVI

i want to inform you that flow problems identified on ultrasound in one vein does not fully describe whether one or all three relevant veins are affected.
what do you mean by sticky blood syndrome?

Posted: **Tue Jan 25, 2011 8:02 pm**

Hopeful123 - I had a very similar presentation and history (mostly right sided symptoms, but azygos and left internal jug initially treated). Turns out the doc missed a less obvious problem low down in my right jugular. I used to get a dead right arm at night too. Since my recent balloon angio on the right side, I dont get the dead arm at night. So my guess is it's circulation!

Posted: **Wed Jan 26, 2011 5:15 am**

hwebb wrote:Hopeful123 - I had a very similar presentation and history (mostly right sided symptoms, but azygos and left internal jug initially treated). Turns out the doc missed a less obvious problem low down in my right jugular. I used to get a dead right arm at night too. Since my recent balloon angio on the right side, I dont get the dead arm at night. So my guess is it's circulation!

Thank you hwebb! That is very interesting and encouraging.... Need to get these jugulars looked at again so!

Posted: **Wed Jan 26, 2011 9:47 am**

drsclafani wrote:
drbart wrote:Hi Dr S,

Is it feasible to replace a long, thin IJV that has a long, thin (8x80!!) stent?

I see articles on bovine replacements.. has this work progressed to be useful to humans?
yes it could be done. the problem is the durability of those stents.

I have some questions about stents in veins. Is there any history of stents collapsing/cracking/squezzing patially shut in veins? Is a series of short stents back-to-back sometimes used instead of a long stent?

and most importantly, If one is damaged and closed up, how can it be treated? (Vein surgery involving incision?)

Posted: **Wed Jan 26, 2011 10:29 pm**

fogdweller wrote:
drsclafani wrote:
drbart wrote:Hi Dr S,

Is it feasible to replace a long, thin IJV that has a long, thin (8x80!!) stent?

I see articles on bovine replacements.. has this work progressed to be useful to humans?
yes it could be done. the problem is the durability of those stents.
I have some questions about stents in veins. Is there any history of stents collapsing/cracking/squezzing patially shut in veins? Is a series of short stents back-to-back sometimes used instead of a long stent?

Hi fogdweller,
I posted a link to a pdf a while back which discussed stent fracture in the superficial femorial artery (SFA).

http://www.thisisms.com/ftopicp-141085.html#141085

There are some photos of fractured stents that I think everyone contemplating stents should take into consideration. Essentially, the longer the stent the greater the risk of fracture and complications. However, there was still a high rate of fracture even with the shorter stents in this study. Moreover, the jugular veins being located in the neck likely experience a great deal of torsional and compression/extension movement as the head is turned side-to-side and up and down respectively. Such stress would increase the chances of fracture.

NHE

Posted: **Thu Jan 27, 2011 5:47 am**

Hi Dr.Sclafani,
I had a venogram done recently. My Azygous vein was called normal.
This is the picture.

to me there might be a possible narrowing at the beginning of the arch, to the left of the words I typed. Since I have PPMS this would be in agreement with Zamboni findings in those patients.
Please let me know what you think.
Thanks a lot.

This Is MS Multiple Sclerosis Knowledge & Support Community

DrSclafani answers some questions

Re: What's the deal with stents?

Re: grafting to replace a long, thin jugular?

Cold right side

Hopeful123

Re: Hopeful123

Re: grafting to replace a long, thin jugular?

Re: grafting to replace a long, thin jugular?