This Is MS Multiple Sclerosis Knowledge & Support Community

It didn't show it for me because it is a closed group...

i'm sorry i can't open this, and i'd love to read it, as i amplannig to go there...

esta, if you are planning to go there, and are on facebook yourself, you can click 'join' on the main page of that costa mesa page as linked.

Sorry. here it is.

From Dr Arata

CCSVI is an abnormality of the jugular or azygous veins. It can involve all or just one of them. It is caused by abnormal valves in the primary form. Secondary CCSVI is a result of compression of one or all of these veins by adjacent structures. Azygous valves can be very difficult to detect which is why we often empirically treat the azygous.



Additional veins such as the vertebrals, lumbars, renals etc do NOT cause CCSVI. The do serve as collateral veins. Proper treatment dictates correction of the jugular or azygous problem. NOT Venous agioplasty of Collaterals.



I would like to take the opportunity to reinforce what I tell every patient of mine. If at anytime you have questions or concerns please contact me. I cannot discuss individual patient care issues in this forum. I am however always available to communicate with any patient directly.



I would prefer patients to have this procedure once and only once. That is why I THE most important thing when choosing a center is the quality, based on experience and outcomes, NOT the proximity or ease of scheduling. Patients have to understand that their first treatment is their best opportunity for a good result. Even when going to the best physician second, third or fourth procedures will not generate as good a response as the first treatment. I will continue to do the best I can to help people who have been treated elsewhere. Waiting a specified period of time, despite what happens to the ccsvi symptoms, is a simplistic and antiquated view of CCSVI. Retreatment is indicated anytime after complete relapse of ccsvi symptoms is present.

Flow is everything. CCSVI is not about narrow veins!

Question someone asked was "if the azygous vein is blocked off does this usually mean the jugulars are too? is it more common that way or is it usually just one set thats bad?"

Answer from Dr Hewett

There is really no predicting who will have a problem with any given jugular or azygos. Certainly the majority of patients have a problem with the azygos but not all. I think the most important considerations are that about 90% of patients with MS will have a venous abnormality, that the azygos should be thoroughly checked in all of them, and that many azygos veins look normal from a superficial inspection but upon closer evaluation a large number of these veins have a functional/treatable obstruction (we see a lot of these).

How many People have been treated in Canada and seen some Benefit?

Answer From Dr.Arata



I do not have exact numbers off the top of my head. I personally average 20 CCSVI procedures a week. I have been doing it for over a year. If not the most, certainly one of the most experienced in the world.

Benefits have to be define carefully. Many people speak in terms of MS. Despite patients often experiencing relief in MS symptoms we are treating CCSVI. A venous disorder with its own symptoms. Improvements in CCSVI symptoms occur in over 90% of patients after treatment. The non-responders are becoming more predictable. For example if severe compression of both jugulars is seen at the C1 level this is increased risk of lack of response.Additionally, rapid restenosis often occurs when the jugular valve is to small.



Question Someone Asked

Do people here take baby aspirin post angio? My friend who had her treatment else where was recommended it and I keep hearing more about this and am curious about this. Just started to research it more tonight. Curious about thoughts around this.



Answer from Dr.Arata

Anti-platelet agents, aspirin being one of them have not been shown to prevent venous clotting. This has been studied far more than ccsvi itself. The available evidence would suggest increased risk of bleeding if anything. Recommending them following treatment for ccsvi would be counter to available data.

Question; Do you check for the Iliac

We screen patient for it and if symptoms we do venogram. Treat all US patients and ask all others if they want to be treated.

What we don't do is radiate the pelvis of patients without symptoms.

Question:I have purple feet "Iliac"

Purple feet are typically the result of autonomic dysfunction. It is usually accompanied with coldness of the extremity. It is a symptom of CCSVI. When CCSVI is treated it responds. Cold purple extremities can be caused by other diseases also. When isolated to the left leg it can be secondary to iliac vein compression however this is not associated with CCSVI in any way.

Question:My titinus is loader then before treatment

Tinnitus is often described by patients with CCSVI. It typically resolves like other CCSVI symptoms when the jugular valves are treated. It also can return if a patient experiences a CCSVI relapse. Involvement of the sinuses is actually quite rare. The presence of tinnitus doesn't mean you have sinus vein issues.

i'm going in februar. that's our chosen date. this is my third time, and i think this wll be way better.
i had a consult with dr hewett and he looked at all my CD's and pointed out the valves as the problem and i saw what he s saying...i feel very confident i'm makng the right choice...

Azygous valves can be very difficult to detect which is why we often empirically treat the azygous.

Dr. Sclafani was just saying in another thread that azygous valves are very difficult to observe on venography but show up on IVUS. I wonder what is different about azygous valves as compared to jugular valves to make this so? Perhaps they are smaller? His solution is to use IVUS, Dr. Arata's solution is to balloon the azygous in the usual spot even when he does not see anything? This would cause intimal damage to patients who do not have azygous issues but it might keep some azygous issues from going untreated.

Additional veins such as the vertebrals, lumbars, renals etc do NOT cause CCSVI. The do serve as collateral veins. Proper treatment dictates correction of the jugular or azygous problem. NOT Venous agioplasty of Collaterals

Vertebrals and lumbars cannot be treated. It's only the renals in this list that can be treated, as well as the iliac. Unless Dr. Arata is claiming a 100% success rate, there is a subset of patients who will experience restenosis after the procedure. If these patients have their collateral veins blocked as well, then they are right back where they started. I believe it is good care to treat the renals and the iliac. If the renal vein is blocked, it adds 500 ml of blood to the cerebrospinal drainage, wihch is already draining 750 ml.

Patients have to understand that their first treatment is their best opportunity for a good result. Even when going to the best physician second, third or fourth procedures will not generate as good a response as the first treatment.

There is no research to back this statement up, but he must be speaking from his own personal experience. Many times when a patient comes in for a repeat procedure it is because of a complication from the first procedure. If there has been clotting or intimal hyperplasia or a stent gone bad, this in itself might cause issues. Does anyone have other ideas as to why he would be observing not as good of a response in repeat procedures?

dania wrote:Sorry. here it is.

From Dr Arata

Secondary CCSVI is a result of compression of one or all of these veins by adjacent structures.

Just curious. For secondary CCSVI can this be treated by angioplasty?
What are the options for somebody who has secondary CCSVI?

Thanks,

Bob

cEcE
I think it is personall experience..second time round was sure less improvement for me, and i just had the same vein done, no complications... so third i can only pray. its the valves, not the vein rang home as he showed me on my CD's.
i believe dr hewet explained the azygos is sandwiched between the spine and the chest bone, but don't quote me...

dania wrote: Answer From Dr.Arata

For example if severe compression of both jugulars is seen at the C1 level this is increased risk of lack of response.

C1 is that the top of the spine?

orion98665 wrote:

dania wrote:Sorry. here it is.

From Dr Arata

Secondary CCSVI is a result of compression of one or all of these veins by adjacent structures.

Just curious. For secondary CCSVI can this be treated by angioplasty?
What are the options for somebody who has secondary CCSVI?

Thanks,

Bob

It might depend on what the adjacent structure is. A year ago Dr. Sclafani introduced the concept of leave-me-alone-lesions if it is the carotid artery impinging on the jugular. Not a good place for stenting or ballooning because of the carotid. Other places like in May thurners it fits the definition of this secondary CCSVI (with the iliac vein compressed between the iliac artery and the spine) and that is treated by stenting. If it's a jugular and it's a muscle compressing it, then Dr. Sclafani talked about stenting only if the patient failed to respond to a first procedure.

One of the first CCSVI images I saw back in late 2009 was this one:
www.thisisms.com/ftopicp-71888.html#71888

The bone appears to be compressing the jugular. It's possible upper cervical chiropractic care might be of benefit or that opening a lower issue such as a the usual place in the valves would improve the flow higher up so that it would no longer be compressed.

One of the 'wow' impressions I had from that image was that CCSVI is varied, but that what it has in common is that the veins are obstructed and we end up with MS, no matter if it's a bone impingement or a hypoplasia or your standard jugular valve stenosis.

thanks cece

thats one reason why i try to push people to just get atleast tested for UCC misalignment, maybe then will they be able to get the ccsvi surgery and benefit from it

It's a great post from Dr. Arata. A lot packed into it.

Waiting a specified period of time, despite what happens to the ccsvi symptoms, is a simplistic and antiquated view of CCSVI. Retreatment is indicated anytime after complete relapse of ccsvi symptoms is present.

Anyone know if there is a minimum amount of time needed between venoplasties to allow the intima to heal? Or if intimal hyperplasia is more likely with repeat balloonings?

Flow is everything. CCSVI is not about narrow veins!

I agree with him on this. CCSVI = outflow obstructions.

Certainly the majority of patients have a problem with the azygos but not all.

Majority? Back when my azygous did not have any issues, I questioned that because of my belief that most people with CCSVI had azygous issues, and if I recall correctly, Dr. Cumming and Dr. Sclafani both said their percentage was much lower. Maybe 25% for DrS and 10-15% for DrC? I would have to look that up again.

I personally average 20 CCSVI procedures a week. I have been doing it for over a year. If not the most, certainly one of the most experienced in the world.

Those are good numbers.

Additionally, rapid restenosis often occurs when the jugular valve is to small.

hypoplastic valve? Or just small valve?

Anti-platelet agents, aspirin being one of them have not been shown to prevent venous clotting. This has been studied far more than ccsvi itself. The available evidence would suggest increased risk of bleeding if anything. Recommending them following treatment for ccsvi would be counter to available data.

Is this true, that there is research showing antiplatelets to be ineffective against venous clotting? There is an additional benefit in the antiplatelet in that it may reduce intimal hyperplasia, as there is an early stage in intimal hyperplasia in which platelets glom on to the injury and release platelet-derived n. factor, which is one of the things that signal the smooth muscle cells to grow (which is what intimal hyperplasia is, a solid overgrowth of the smooth muscle cells in response to injury, and it grows inward and disrupts some flow).

From this, it sounds like PI is not prescribing any antiplatelets or anticoagulants.

We screen patient for it and if symptoms we do venogram. Treat all US patients and ask all others if they want to be treated.

What we don't do is radiate the pelvis of patients without symptoms.

Most pwMS with May Thurners are asymptomatic for it. This method would miss the majority of MT cases. I believe it was Dr. Siskin's interview on CCSVI Alliance where it was discussed that when he found patients with MT they were asymptomatic; this was part of his reasoning for no longer looking for it and he may have missed the point, we are not so concerned about symptoms in the leg, we are concerned about the rerouting of flow that would have gone through the iliac and instead goes through the diseased azygous.

Anyone still reading?

Purple feet are typically the result of autonomic dysfunction. It is usually accompanied with coldness of the extremity. It is a symptom of CCSVI. When CCSVI is treated it responds.

He is using the same definition of what is a symptom of CCSVI as we have talked about here (If it responds immediately to CCSVI treatment, then it is unfathomable that nerves remyelinated or the autoimmune system righted itself in minutes, therefore it is a CCSVI symptom.)

When isolated to the left leg it can be secondary to iliac vein compression however this is not associated with CCSVI in any way.

There is no increased incidence of MT in MS. This does not matter. When it happens to occur, it impacts the flow of blood to the azygous. That is what is signicant, not whether or not it is associated with CCSVI.

He did mention the concern of radiation to the pelvis. How big of a concern is this?

civickiller wrote:thanks cece

thats one reason why i try to push people to just get atleast tested for UCC misalignment, maybe then will they be able to get the ccsvi surgery and benefit from it

Enough of my friends have tried it that I will be giving it a try too. Just not this year, because I feel I've had enough radiation this year from the procedures, and UCC does require xrays? I also need a bit of a break. But next year, I'll give it a try.

Cece wrote:

I personally average 20 CCSVI procedures a week. I have been doing it for over a year. If not the most, certainly one of the most experienced in the world.

Those are good numbers.

I disagree with myself, on second thought. 20 per week, if he is working five days a week, means four procedures a day. He may not be spending enough time on each patient.