This Is MS Multiple Sclerosis Knowledge & Support Community

sbr487 wrote:Dr. S hope you are doing good!

I have just couple of questions.
Please ignore them if these have been already discussed (and I will understand and search around)

it is ok. i do not mind answering questions more than once. Hopefully my answers are consistent

- There have been some reports of people having worsening of symptoms for a brief period (this is post procedure) only to recover within a day or two. Can you bring up this point with your colleagues when you happen to participate in CCSVI discussions?

yes, this is true. There are many possible causes, including stress, dehydration and inadequate caloric intake prior to and during the treatment. But yes this is a subject that warrants analysis

- Generally, venogram is considered as a gold standard to study ccsvi. We have also discussed about how stenosis can be present without reflux and intervention is warranted only if reflux is seen.

I cannnot agree with that. I would not suggest that stenoses without reflux should not be treated. Reflux is best seen on ultrasound but nno test shows everything. If there is an outlet obstruction, i think it should be corrected except if the patient had no symptoms and no lesions on MRI.

There are also two types of reflux

ccsvi reflux where there is outlet obstruction and the blood is redirected upward toward the brain

incompetent valve reflux where blood from the heart is redrected up through valves that are not functioning to maintain flow down toward the heart. This results in short term upward flow but not redirection up into the brain

Does venogram also show reflux? If not, can one depend on it alone to make a decision about venous correction?

Thank you ...

it can show reflux when the contrast slowly drains after the dye is injected upward. The decision to treat is based on obstruction caused by stenosis and by valve abnormalities. The decision to continue dilatation may result from continuing to see reversal of flow

David1949 wrote:When the angioplasty balloon is inflated in a vein does it temporarily block the blood flow? If it blocks blood flow through portions of the brain would the brain cells begin to die? Is there a time limit on how long the balloon can remain inflated without doing damage?

yes there is temporary stoppage of venous flow when the balloon is inflated but arterial flow is not stopped. thus there is blood flow to the brain. The balloon is inflated for up to two minutes and then deflated to allow return of venous return. I do not think there could be brain damage in such a short time

drsclafani wrote:

The theory is that outflow obstruction of the cerebrospinal venous flow results in luxuriant vicarious collateral perfusion through vessels not developed to handle such flow. This may result in loss of integrity of the small veins and result in "backwash" damage to the spinal cord.

I get it. The main road's blocked and the side streets can't handle the traffic resulting in damage to the adjoining properties. Could a particularly large lesion located in say at the C2-3 level be a typical consequence of a IJV occluded at a lower level?

I cannnot agree with that. I would not suggest that stenoses without reflux should not be treated. Reflux is best seen on ultrasound but nno test shows everything. If there is an outlet obstruction, i think it should be corrected except if the patient had no symptoms and no lesions on MRI.

I sure hope your views on this prevail as I think a lot of the confusion evident in replication studies seems to be caused by searching for elusive reflux rather than venous abnormalities which are easier to define and detect.

Dr Sclafani,

Because of the difficulties detecting azygos problems, I'm starting to hear of routine ballooning of the azygos during the procedure, even when no problem is seen. Do you think this is a good idea? Are there any negatives?

drsclafani wrote:

David1949 wrote:When the angioplasty balloon is inflated in a vein does it temporarily block the blood flow? If it blocks blood flow through portions of the brain would the brain cells begin to die? Is there a time limit on how long the balloon can remain inflated without doing damage?

yes there is temporary stoppage of venous flow when the balloon is inflated but arterial flow is not stopped. thus there is blood flow to the brain. The balloon is inflated for up to two minutes and then deflated to allow return of venous return. I do not think there could be brain damage in such a short time

Dr. Sclafani, it seems to me that blocking the vein during ballooning cannot be a good thing; this is something I've been wondering about for some time. I've read accounts of patients feeling uncomfortable pressure or pain during ballooning (even without stents), and wonder about the back pressure/backwash that may be occurring, and possible damage. As you note, the arterial flow continues, so wouldn't pressure keep building up?

Do you know if anyone is trying to develop a balloon that wouldn't block the flow? One design that comes to mind would be like a tire's inner tube with a hole in the center (through which the blood could continue to flow during the inflation).

Liz

PS Thanks very much for your response/clarification on the "MS causes CCSVI" question. Whew.

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?

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.

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.

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?

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"

Is there any prize for waiting the longest? It was recently batted about that there is no prize for posting the most posts, either. My heart breaks….

I posted this yesterday, but took it back while I reconsidered. I do not know what I will do. I am considering local treatment (no stents) with the expectation that I will do a follow-up second procedure with you when you are available again. Is this something you would recommend against?

Cece wrote:Is there any prize for waiting the longest? It was recently batted about that there is no prize for posting the most posts, either. My heart breaks….

I posted this yesterday, but took it back while I reconsidered. I do not know what I will do. I am considering local treatment (no stents) with the expectation that I will do a follow-up second procedure with you when you are available again. Is this something you would recommend against?

this warrants a PM

Go to the Headmasters office Cece.

NZ, I might have to write out a hundred times:

Waiting ain't so bad
Waiting ain't so bad
Waiting ain't....

Cece wrote:NZ, I might have to write out a hundred times:

Waiting ain't so bad
Waiting ain't so bad
Waiting ain't....

Cece fully understand, I havn't been able to wait...but now realise that waiting a few months more wouldn't have been too bad for several reasons...but these things you can never know before. Would certainly redo the CCSVI intervention. But to get something positive out of the frustration of waiting: keep in mind that (apart from procedure costs) the quality of intervention due to increased experience of the docs with time generally increases! I mean this, since for example in Belgium it is now standard by the doc during the CCSVI intervention to check the iliac vein in addition, and could maybe have got partly reimbursed by my health insurance. So if one is relatively OK, a few months waiting can sometimes be worthwile. But all this said by s.o. that was not able at all to wait and knowing me would probably just do the same again...

and very sorry doc that this isn't a question...now better to PM in fact...

tzootsi wrote:Dr Sclafani,

Because of the difficulties detecting azygos problems, I'm starting to hear of routine ballooning of the azygos during the procedure, even when no problem is seen. Do you think this is a good idea? Are there any negatives?

its just the truth, every good has a bad, every light casts a shadow

yes, there are risks in everything. you just have to balance and see which way the scale tips

there are challenging abnormalities in the azygos veins that defy detection by venography. Some inflate low pressure balloons to look for indentations that indicate a web that reduces flow. Using the low pressure balloon diminishes risk of damage but may not have sufficient pressure to fix the problem. In such situations a higher pressure balloon can replace the low pressure ballon. On the whole, i think this is a good strategy

MS_HOPE wrote:

drsclafani wrote:

David1949 wrote:When the angioplasty balloon is inflated in a vein does it temporarily block the blood flow? If it blocks blood flow through portions of the brain would the brain cells begin to die? Is there a time limit on how long the balloon can remain inflated without doing damage?

yes there is temporary stoppage of venous flow when the balloon is inflated but arterial flow is not stopped. thus there is blood flow to the brain. The balloon is inflated for up to two minutes and then deflated to allow return of venous return. I do not think there could be brain damage in such a short time

Dr. Sclafani, it seems to me that blocking the vein during ballooning cannot be a good thing; this is something I've been wondering about for some time. I've read accounts of patients feeling uncomfortable pressure or pain during ballooning (even without stents), and wonder about the back pressure/backwash that may be occurring, and possible damage. As you note, the arterial flow continues, so wouldn't pressure keep building up?

Do you know if anyone is trying to develop a balloon that wouldn't block the flow? One design that comes to mind would be like a tire's inner tube with a hole in the center (through which the blood could continue to flow during the inflation).

Liz

PS Thanks very much for your response/clarification on the "MS causes CCSVI" question. Whew.

i think the discomfort that one experiences from balloon inflation is stretching of the vein and its nerve fibers. I do not think that two minutes of inflation is going to cause significant or lasting injury.

i like your donut balloon. Things like this have been tried. I used something like this thirty years ago to maintain flow past injured veins but they are difficult to design, test, get approved and have difficulties with the materials used.

keep up your ideas!

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?[/quote]
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

Zeureka wrote:

Cece wrote:NZ, I might have to write out a hundred times:

Waiting ain't so bad
Waiting ain't so bad
Waiting ain't....

Cece fully understand, I havn't been able to wait...but now realise that waiting a few months more wouldn't have been too bad for several reasons...but these things you can never know before. Would certainly redo the CCSVI intervention. But to get something positive out of the frustration of waiting: keep in mind that (apart from procedure costs) the quality of intervention due to increased experience of the docs with time generally increases! I mean this, since for example in Belgium it is now standard by the doc during the CCSVI intervention to check the iliac vein in addition, and could maybe have got partly reimbursed by my health insurance. So if one is relatively OK, a few months waiting can sometimes be worthwile. But all this said by s.o. that was not able at all to wait and knowing me would probably just do the same again...

and very sorry doc that this isn't a question...now better to PM in fact...

with all due respect, i think on our side of the fence, mike dake and I have had to wait the longest....but does that mean we will get back sooner? or does it mean anthing at all

go yankees