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Kleiner wrote: Dr. Sclafani,

Thanks for that list of considerations, I am very comfortable with almost all of the issues above. However, one more question...then I will leave you alone!! The only thing really holding me back right now is the risk of actually being worse after the procedure. Is this, in your mind, a valid concern? I have no qualms about trying something, knowing that I may receive no benefit, but I am 35 and have a 2 and a 4 year old to worry about, I would hate to do something that jeopardizes my ability to care for them...and enjoy all of the things I should be able to enjoy with them. Once again, I know this is a personal decision and you can't tell me what to do but hoping that you can confirm or refute my fear of this procedure actually making me worse than I was going into it.

Thanks again for all of your help and advice it truly is amazing to have someone like you to help us all through this challenge.

let me say, i understand the concerns and hesitation you feel. its first and foremost a balance of risk and benefit. Afterall if you are not "that bad" then risk should be minimal. But if there is a minimal risk of getting worst, is it worth it?

your call.

Eyal wrote:Dear Doctor,
I had a venography in June 2010, here in Israel, showing numerous collaterals in both my JV.
In November 2010 I had an MRV and a venography in Katowich, Poland in which they saw a collateral in the RJV which they opened with a balloon with mild results.
My questions:
1. Are you willing to have a look at my my Israeli venography and Polish MRV photos and how can I send them to you?
2. How can I convince my Israeli IR that he is wrong and my veins are not normal?
Thank you from burning Israel (the fire is 10 minutes away from here, but, hey, I have MS, so no time to deal with that).

eyal
i speak neither polish nor hebrew, but radiology is a universal language.

1. i am currently unable to read more scans. each one takes about an hour and some longer as the software is not universal. Get back to me in march, we will see whether i have caught up to all the backlogged cds. I have to now focus on my own patients.

2. i think is getting harder to change the mind of someone who does not believe in ccsvi. i think only data will change that opinion, or overwhelming consensus

The good Dr. wrote;
"2. i think is getting harder to change the mind of someone who does not believe in ccsvi. i think only data will change that opinion, or overwhelming consensus"
How true is this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Its not even about the people who are anti CCSVI knowledge there are as many pro CCSVI people that are not listening and blindly having faith in a possible QOL improvement that is still being developed.
What are the chances of better outcomes in six months from now, with the centers of excellence that are coming on line next year?

If people are not willing to listen to 'all' that has been presented on CCSVI how can they ever assimilate an answer into their understanding of Vascular Involvement in MS or other neuro-de-generative diseases?
Have a thought filled day,
Nigel

Most of us are counting down to Xmas, Dr. I would guess you are counting till your next CCSVI patient.
I have a question for you if I may. Currently should a person be thinking about how often they might require angio treatment?
I have been noticing that two or three treatments is not uncommon. In my part of the world where knowledge and experience is very thin on the ground (probably not that different to some of the Medical Tourism Hospitals around the globe) and I am becoming concerned that cost is going to cripple some people. We have in NZ some lucky people who have had treatment several months ago and they are now aware they have lost benefit. I am concerned that they are in a more difficult position now that finances are the reason they can either have treatment or not, and risk going backwards like some reports circulating.
The risk for many and myself is that multiple treatments would financially cripple my family more so than my being crippled by MS.
Regards Nigel, counting down, how many more sleeps?

NZer1 wrote:Most of us are counting down to Xmas, Dr. I would guess you are counting till your next CCSVI patient.
I have a question for you if I may. Currently should a person be thinking about how often they might require angio treatment?
I have been noticing that two or three treatments is not uncommon. In my part of the world where knowledge and experience is very thin on the ground (probably not that different to some of the Medical Tourism Hospitals around the globe) and I am becoming concerned that cost is going to cripple some people. We have in NZ some lucky people who have had treatment several months ago and they are now aware they have lost benefit. I am concerned that they are in a more difficult position now that finances are the reason they can either have treatment or not, and risk going backwards like some reports circulating.
The risk for many and myself is that multiple treatments would financially cripple my family more so than my being crippled by MS.
Regards Nigel, counting down, how many more sleeps?

thus the need to prove this is compelling. forcing people to pay out of pocket is cruel, in my opinion. if you have claudication in your legs thhat makes it hard to walk, the insurers pay for your treatment even when you keep smoking the poisons that caused the arteriosclerosis in the first place BUT if you cant walk because your legs are stiff from ms, then you have to mortgage your first born grandchild

Lets hope that the studies answer questions as soon as possible, although it does seem to take a long time for these processes to occur

off my polemics


yes this is tragic. lets hope that we can figure out a way to increase the time to restenosis.

Hi Dr Sclafani
As one who has been lucky enough to get another procedure soon, should we be asking our IR to go through the left side to check for May Thurner? Are you still of the opinion that cutting balloons shd be used? Any other techniques that you would use that may have changed in the last 6 mths?
I realise that you are unable to advise how another surgeon shd operate but wd appreciate your input
Thank you

kiwi wrote:Hi Dr Sclafani
As one who has been lucky enough to get another procedure soon, should we be asking our IR to go through the left side to check for May Thurner? Are you still of the opinion that cutting balloons shd be used? Any other techniques that you would use that may have changed in the last 6 mths?
I realise that you are unable to advise how another surgeon shd operate but wd appreciate your input
Thank you

There is no association between may thurner syndrome and ccsvi.however there is significance of a outflow obstruction of the iliac vein WHEN the azygos vein is obstructed. One could easily look for that by going into the left femoral vein and looking on the way up to the neck veins or one could defer and study if azygos vein obstruction was vound.

I used cutting balloons for a while when i realized that the obstructed veins were very difficult to angioplasty and that they seemed to have a lot of elastic recoil. I hoped that the cutting balloon will be useful in opening the valvular obstructions. Unfortunately the balloon size is only 8 mm, too small in may circumstances to make much of a difference. Besides it did not stop the restenosis, only made it easier to blow up the balloon. Theswe catheters are also very expenseive and would raise the cost of the procedure by about 10%

i have found that i get better venographic results from high pressure large diameter balloons. I will see when my followups start

we have heard a lot about skepticism regarding the presence of narrowing of the veins, and about how these abnormalities are seen all the time in healthy patients. I recently came across a case of really awful stenosis

in fact not only have i never seen such a venogram among healthy persons, i have never seen this before amont patients with ccsvi.

61 year old male presented with fatigue, slight cognitive dysfunction, decreased sensation on the right side, heat intolerandce, bladder problems,difficultly swallowing, painful feet, vertigo, and right sided paralysis. An MRV showed absence of the right jugular vein

venography was performed after a positive doppler ultrasound exam.

images are below




so all you amateur IRs, what do you think?

Am definitely not an amateur IR - But why: on the middle image one can see the (maybe) successful grow of a big collateral; although the catheter seems to go right throughout the jugular (thin black line?). Would it mean that the jugular is not "absent" but rather 100% (if there is such thing) occluded? The very opaque contrast would indicate that the juice was given just at the collateral branch....

There seems to be a "crossing" collateral too; but I'm probably fabulating here

Apparently the other jugular took over and I assume the bulge at the bottom was created by years and years of "1 side flow" at confluent between the jugular and the sub-clavian

Thinking loudly again; don't bother too much

Dr. Sclafani,

I have not yet received a diagnosis of MS since I have not developed white matter lesions. Symptoms accumulated over a few months beginning in AUG 2009. It started with an oddly warm sensation at the back of the throat in the region of the soft palate. A month later slight numbness on tip of index finger and thumb on right hand and very low tinnitus in left ear only. The ache at the clavicle on the right side started. My feet started feeling unusually cold, focused attention and concentration difficulties developed. I had none of these symptoms before AUG 2009.

Here is a list of the symptoms that developed over a few months and the MRV/US Study Results…..

Unusually warm sensation in the back of the mouth (soft palate area).
The sensation is like I’ve just taken a drink of a warm beverage (very odd). Started EARLY AUG 2009

Localized pain at the clavicle and a couple inches lower on the right side. A dull ache in upper right chest area in the region of the subclavian.
Started LATE AUG 2009

Tinnitus that is low and in left ear only a couple days, louder the next couple days,and in both ears for several days (I can make it louder and in both ears by putting my chin to my chest). Started EARLY SEP 2009

Numbness noted on right hand (index finger & thumb)
EARLY SEP 2009

Bottoms of my feet became cold or a little numb.
MID OCT 2009

Bladder problems no explanations found.
LATE OCT 2009

Slightly light-headed and dizzy.
NOV 2009

Stiff and weak feeling legs (comes & goes)
Calf muscles feel stiff at times and tensed for no reason.
NOV 2009

Thinking not clear, processing information seems altered, easily overwhelmed with too much mental activity requiring extended attention and concentration.Reading and group conversations are where this really shows up.
DEC 2009

Exhausted (used to only need 7.5 hours sleep and felt rested and energized) started needing to sleep 10-12 hours and would wake up feeling tired.
DEC 2009

Hyper-sensitive to some sounds & smells on occasion (very odd).
JAN 2010

A sense of not sweating normally (head didn't seem to sweat normally).
Wouldn’t even get oily around the edges of my nose or on my forehead.
Even through this past summer with 85 F sunny weather.
Really noticed this starting in MAY 2010

I was tested for CCSVI in JUNE 2010.

MRV
Right side cerebral drainage is dominant (superior sagittal, transverse, sigmoid sinuses and right IJV dominant).
Little to no flow in the left IJV. Facial vein on the left and the vertebral plexus on the left appears to predominately drain the head and neck on this side. The morphology of the facial vein on the left changes from ellipsoid to flattened, to pinpoint at C6.

The morphology of the right IJV takes on a flattened appearance from the level of C6 through C7 posterior to the sternocleidomastoid muscle.

MRI Iron accumulation and cerebral volume reduction. No T1 hypointense lesions.

US Septum and stenosis in left IJV (0 and 90 degrees) Flap and stenosis in right IJV (at 90 degrees)


Dr. Sclafani, any insights or thoughts are much appreciated.

There was in fact a right jugular vein, that cathether is going through something. (?) And level with the chin as seen in the image, there is a blockage. (?) The dye is very opaque, as Algis noted, indicating very limited flow. (?) The patient is very fortunate to be in the hands of someone who can treat him. (!)

pairOdime wrote:Dr. Sclafani,

I have not yet received a diagnosis of MS since I have not developed white matter lesions. Symptoms accumulated over a few months beginning in AUG 2009. It started with an oddly warm sensation at the back of the throat in the region of the soft palate. A month later slight numbness on tip of index finger and thumb on right hand and very low tinnitus in left ear only. The ache at the clavicle on the right side started. My feet started feeling unusually cold, focused attention and concentration difficulties developed. I had none of these symptoms before AUG 2009.

Here is a list of the symptoms that developed over a few months and the MRV/US Study Results…..

Unusually warm sensation in the back of the mouth (soft palate area).
The sensation is like I’ve just taken a drink of a warm beverage (very odd). Started EARLY AUG 2009

Localized pain at the clavicle and a couple inches lower on the right side. A dull ache in upper right chest area in the region of the subclavian.
Started LATE AUG 2009

Tinnitus that is low and in left ear only a couple days, louder the next couple days,and in both ears for several days (I can make it louder and in both ears by putting my chin to my chest). Started EARLY SEP 2009

Numbness noted on right hand (index finger & thumb)
EARLY SEP 2009

Bottoms of my feet became cold or a little numb.
MID OCT 2009

Bladder problems no explanations found.
LATE OCT 2009

Slightly light-headed and dizzy.
NOV 2009

Stiff and weak feeling legs (comes & goes)
Calf muscles feel stiff at times and tensed for no reason.
NOV 2009

Thinking not clear, processing information seems altered, easily overwhelmed with too much mental activity requiring extended attention and concentration.Reading and group conversations are where this really shows up.
DEC 2009

Exhausted (used to only need 7.5 hours sleep and felt rested and energized) started needing to sleep 10-12 hours and would wake up feeling tired.
DEC 2009

Hyper-sensitive to some sounds & smells on occasion (very odd).
JAN 2010

A sense of not sweating normally (head didn't seem to sweat normally).
Wouldn’t even get oily around the edges of my nose or on my forehead.
Even through this past summer with 85 F sunny weather.
Really noticed this starting in MAY 2010

I was tested for CCSVI in JUNE 2010.

MRV
Right side cerebral drainage is dominant (superior sagittal, transverse, sigmoid sinuses and right IJV dominant).
Little to no flow in the left IJV. Facial vein on the left and the vertebral plexus on the left appears to predominately drain the head and neck on this side. The morphology of the facial vein on the left changes from ellipsoid to flattened, to pinpoint at C6.

The morphology of the right IJV takes on a flattened appearance from the level of C6 through C7 posterior to the sternocleidomastoid muscle.

MRI Iron accumulation and cerebral volume reduction. No T1 hypointense lesions.

US Septum and stenosis in left IJV (0 and 90 degrees) Flap and stenosis in right IJV (at 90 degrees)


Dr. Sclafani, any insights or thoughts are much appreciated.

sounds like ccsvi to me.

however your description of the US only mentions Bmode abnormalities. Perhaps you just did not mention them. Was their reversal of flow? a negative delta, etc

also you did not mention whether you had a spinal m ri with gadolinium

Dr. Sclafani,

B-mode abnormalities were the only ones noted. I have had a couple spinal MRIs with contrast and no lesions were noted.

I tell you what I think...I think there is a nasty bacteria of some kind that is an endothilial fanatic and like the pac-man game devours veins and leaves us with disability...

Algis wrote:Am definitely not an amateur IR - But why: on the middle image one can see the (maybe) successful grow of a big collateral; although the catheter seems to go right throughout the jugular (thin black line?). Would it mean that the jugular is not "absent" but rather 100% (if there is such thing) occluded? The very opaque contrast would indicate that the juice was given just at the collateral branch....

There seems to be a "crossing" collateral too; but I'm probably fabulating here

Apparently the other jugular took over and I assume the bulge at the bottom was created by years and years of "1 side flow" at confluent between the jugular and the sub-clavian

Thinking loudly again; don't bother too much

havent i taught you well algis?

yes the catheter can get through the "virtual lumen" but flow does not come down because the catheter is occluding the lumen.

i am not sure about the bulge. I think that jugulars can expand to large size when flow increases. Ever notice the bulging veins in the neck of someone lifting something heavy or working out? I think that it is true that with all the flow going through the left side the vessel is bulging EXCEPT near the clavicle where it is unable to do so.....i consider that a problem because flow can only go through at a rate to accomodate the smallest pipe

so i would say there is a problem with both jugular veins