DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: DrSclafani answers some questions

Postby Robnl » Sat Jan 12, 2013 5:08 am

Ms is multi factor, one thing leads to another, in this thread anything That is related to, or can influence the vein can be discussed.

My 2 cents

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Re: DrSclafani answers some questions

Postby dlynn » Sat Jan 12, 2013 8:09 am

This thread is where I learned of PCS/NCS (pg.472&473) And was treated for them recently, thank you Dr. Sclafani.
Both venous issues
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Re: DrSclafani answers some questions

Postby Robnl » Sat Jan 12, 2013 11:23 am

Doc,

How plausible is it that valves are stuck/damaged by bacteria and virus?

I read about a small study that suggests a protein, cytokine, to be the cause of vein problems. Because a higher percentage of cytokines were found in the jugulars in MS-patients than in healthy persons
As far as i know, cytokines are the transporters of T-cells and only created by specific cells, so i suppose there are also more cytokines in the veins in my toes..(as my immune system is pretty active).

Regards,

Robert
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Re: DrSclafani answers some questions

Postby Cece » Sat Jan 12, 2013 2:11 pm

drsclafani wrote:personally, i would be more fulfilled if there were more questions, especially from newbies who are trying to work their way through the tall grass of ccsvi. Sometimes those who have benefited the most during the years, may be inhibiting those who have much to learn because their knowledge base, much to my satisfaction, is quite sophisticated

:oops:
I'm willing to participate to whatever extent helps the thread.
Though I can't promise not to get excited when a case study is posted.
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Re: DrSclafani answers some questions

Postby HappyPoet » Sat Jan 12, 2013 7:03 pm

Hi Dr. Sclafani,

* What percentage of your patients have had the same, new, or no symptom improvement(s) after a second venoplasty?
* On average, do improvements from a second venoplasty last as long as from the first venoplasty?
* Which is the most common cause of restenosis two years post-venoplasty? Scar tissue? Or scar tissue and intimal hyperplasia? Or scar tissue, intimal hyperplasia, and blood clots?
* Are you more conservative during a second venoplasty than a first venoplasty, i.e., do you use less pressure, less time of dilation, and/or smaller balloons for the second venoplasty?

Thx!
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Re: DrSclafani answers some questions

Postby NZer1 » Sat Jan 12, 2013 8:41 pm

Thanks for this HappyPoet,

*I would add why is the second treatment or multiple treatments less likely to improve symptoms compared with the first treatment?

*Could this issue with multiple treatments be causing inflammation that is based on the vein having an infection rather than the vein healing process?

*If a vein was dilated in an area that had 'healthy' valves several times is it going to make it become thrombotic and stenosis occur?

*If an Artery was PTA'ed several times is there the same risk issues as you are finding or hearing about with CCSVI Veins?

*Does using anti-coagulants/thinners alter the healing process?

Thx,
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Re: DrSclafani answers some questions

Postby Cece » Sun Jan 13, 2013 10:53 pm

https://www.facebook.com/notes/ccsvi-iv ... 9535683434
"DR SCLAFANI AND I ( by Francine Deshaies)"
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Jan 13, 2013 11:28 pm

HappyPoet wrote:Hi Dr. Sclafani,

* What percentage of your patients have had the same, new, or no symptom improvement(s) after a second venoplasty?
* On average, do improvements from a second venoplasty last as long as from the first venoplasty?
* Which is the most common cause of restenosis two years post-venoplasty? Scar tissue? Or scar tissue and intimal hyperplasia? Or scar tissue, intimal hyperplasia, and blood clots?
* Are you more conservative during a second venoplasty than a first venoplasty, i.e., do you use less pressure, less time of dilation, and/or smaller balloons for the second venoplasty?

Thx!


nzer1 wrote:Thanks for this HappyPoet,

*I would add why is the second treatment or multiple treatments less likely to improve symptoms compared with the first treatment?

*Could this issue with multiple treatments be causing inflammation that is based on the vein having an infection rather than the vein healing process?

*If a vein was dilated in an area that had 'healthy' valves several times is it going to make it become thrombotic and stenosis occur?

*If an Artery was PTA'ed several times is there the same risk issues as you are finding or hearing about with CCSVI Veins?

*Does using anti-coagulants/thinners alter the healing process?

Thx,
Nigel

Firstly, I must admit that i have not had that many second treatments of my own patients. So the data set is not really very large. I have far more repeat procedures of patients who had their first, second or third procedure done somewhere else or by someone else. Of my own patients whom i have retreated, the results are currently pretty good, having gotten a lot of experience. Only a very small number of my patients have come to me for a third procedure. I am only aware of one who had another procedure elsewhere. That doesnt mean there havent been more, i just think that patients might now want to talk to me about it. I just do not know.

The indications for a repeat procedure can fall into a few categories and the outcomes of these second procedures depends very often on the indication for the second treatment.

1. The best results occur in patents with RRMS who had good improvements of clinical symptoms or reductions in the number of exacerbations after treatment and then deteriorated by developing new or recurrent symptoms or developing relapses. Most commonly results of second procedures are comparable to the initial treatments with improvements of similar clinical symptoms, but sometimes with added benefits. It is true that some do not regain all the improvements but many do.

2. Results in progressive MS are usually more modest during the first procedure, things such as reduced fatigue, improved balance and cognition can be regained but paralysis and weakness, ataxia, neurologic pain syndromes often do not respond as well to repeated procedures. I expect that this is the result of further progression of the MS.

3. Another category of repeat procedures involves clinical improvements in patients who have a long standing occlusion that occurred in 2010 and 2011. These lesions cannot easily be corrected. However I often find that patients have other lesions that were unrecognized, untreated or under-treated. These are associated with very resistant valvular lesions, often in patients who also have atypical non-valvular lesions superimposed on the valvular lesions. These are quite challenging. Treatment of these may give improvements , modest in nature, despite failure to recanalize the initial occlusion.

4. Many patients have come to me for a repeat procedure who just were not satisfied with the results of treatment elsewhere. These patients often show continued stenosis. Whether it is restenosis or under-treatment or under-recognition of the lesions is speculative. I often have patients attain improvements upon re-treatment, especially if there were short term improvements on prior treatments. As stated above, RRMS does better than progressive disease; imbalance, fatigue, cognition and memory, heat intolerance, improve more than other symptoms.

5. Finally, there are repeated treatments for severe long standing MS in patients who are really debilitated. Generally these treatments give little or modest clinical improvements. However in these situations, i do not make judgments about the quality of the improvements. I leave that to the patient and family to decide.

I know that is not a perfect answer but it is the one I can give right now.

With regard to the lesions detected on second procedures, the most common lesion is recurrent valvular stenosis or persistent valvular stenosis. It is not uncommon to find that the initial treatment seemed to use too small a balloon or that the waist on the balloon never was completely eliminated (inadequate pre, most likely).

A much smaller percentage of patients seem to have developed stricture of the vein, that is previously normal sized vein was now narrowed. These may be intimal hyperplasia but IVUS seems to show mostly just a narrow vein without much thickening of the intimal layer.

A still smaller percentage of patients develop stenosis around the prior angiopastly site but there seem to be webs or other echogenic material in the area that easily dilates with small amounts of balloon pressure. I am thinking that this represents some scar tissue or organized thrombus.

I generally treat my patients the second time around the same way i treated them the first time. Usually less pressure is needed to open the stenosis. I do not use smaller balloons.

I now anticoagulate my patients better with the newer oral thrombin A inhibitors and aspirin. I really think it is important to protect the wall from injury.

Nigel, why would anyone dilate a normal valve?

That is a long answer to long questions. I guess i deserved that for asking for questions.

for those who have not been reading this thread for a long time, please do not hesitate to ask for clarifications. No one will think less of you. As I have said in the past, the only dumb question is one that wasnt asked.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Jan 13, 2013 11:36 pm

Cece wrote:
drsclafani wrote:personally, i would be more fulfilled if there were more questions, especially from newbies who are trying to work their way through the tall grass of ccsvi. Sometimes those who have benefited the most during the years, may be inhibiting those who have much to learn because their knowledge base, much to my satisfaction, is quite sophisticated

:oops:
I'm willing to participate to whatever extent helps the thread.
Though I can't promise not to get excited when a case study is posted.

cece
i am close to completing a very interesting case study that i will share shortly
DrS
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Jan 14, 2013 12:07 am

Sorry Dr S my question should have read,

I am interested in the effects on the healthy portions of a vein wall when there is a web or septum needing PTA treatment, how much PTA can a healthy vein wall withstand before it is 'effected' or at risk of healing issues?

And reworded to hopefully clarify my previous questions,

*Could multiple treatments be required because of issues with the vein healing process, eg clotting and thrombosis actually be caused by an ongoing or persistent infection such as CPn or Lyme that is causing the inflammation/blocking problems?

*Does using anti-coagulants/thinners alter the healing process, eg speed it up/slow it down/assist in any way?

Sorry for the confused questions I shouldn't post when I am cognitively effected by this damn treatment!

Regards
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Jan 14, 2013 12:06 pm

Hi Dr S,
thinking through your replies above I am wondering what you thoughts are on the CCSVI and MS connection.
It appears that the general day to day flow of people with CCSVI is not the issue in MS and that extremes caused by movements/exercise, as one example, are what is causing the severe reflux/back jets that cause BBB breaching.

The theory of Dr Mike Arata about CCSVI and dysautonomia seem to be related to the everyday flows.

It appears that slow flows and reflux/back jets seen on doppler, MRV and also IVUS are minor compared with the extremes that occur off the test bed/chair/table.

Dr Zamboni's collar for testing flows in and out over time may be all that is required in future to indicate who will benefit for very thorough IVUS inspection and PTA by an experienced IR?

,
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Re: DrSclafani answers some questions

Postby HappyPoet » Mon Jan 14, 2013 10:07 pm

Dr. Sclafani,

Thank you so much for your reply about second CCSVI procedures. I believe it's time to schedule my second procedure with you--the past two golden years of priceless, blissful silence that you gave me from the constant high-pitched noises of my tinnitus are ending, and the timing isn't great because in two weeks, I have a surgical consultation for:

*Cervical bone spurs that are indenting and flattening my cord (two levels).
*Severe cervical spinal canal and foraminal stenosis (three levels).
*Cervical retrolisthesis (two levels).
*Cervical disc herniation (one level, posterior).

Coincidentally or otherwise (???), there happen to be demyelinated cord lesions at all levels mentioned above. Would you like a CD of my cervical MRI sent to your office? I also need to have my Atlas/Axis adjusted (leg-length difference is 1/2").

Even though I don't yet know what type of cervical surgery I'll have (hoping for endoscopic), can you at this time give an opinion on what would be the best order for me to have the three procedures (CCSVI, cervical surgery, Atlas)? Is there a reason why I shouldn't first try to save my cord and nerve roots by having the bone spurs removed and stenoses widened? Or would restoration of proper blood flow and CSF through my IJVs help me heal better and/or faster after cervical surgery? Are there other considerations I should think about regarding the order?

You mentioned relapses in your reply. I had a major symptomatic thoracic attack last January (one-year post-procedure), and I was thrilled to learn that all the lesions shown on my January '12 MRI have healed and don't appear on my December '12 MRI--I do, though, still have pain and flares (intercostal nerve block injections help) which I assume happen because once the delicate tissue of the cord is damaged, the cord is never as strong and as healthy as it was before the attack (???).

Thx again!

Edit:

During my first procedure with you, a vein wasn't investigated that you have since included in your protocol, but I can't remember which vein. If you can recall the vein, can it be imaged by US? Are there specific symptoms related to blockage of this vein? Or can the blockage affect flows in veins above, such as the azygos and hemiazygos? My azygos did not have any stenoses. How far could such a blockage theoretically affect flow? Could refluxed blood go back up an unblocked IJV, through the brain and/or dural sinuses, and then down the VVs where thoracic lesions could then form per Dr. Schelling's theory?

I guess I'm looking for a reason for past thoracic lesions where there isn't any spinal trauma (as opposed to my cervical lesions where there is trauma)... structural trauma (cervical cord) and CCSVI trauma (thoracic cord)... different types of trauma that both create lesions. Seems I've rambled, sry. Hope some of this makes some sense!
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Re: DrSclafani answers some questions

Postby allynz » Tue Jan 15, 2013 1:59 am

My opinion is that this thread is fairly self managing in that when people veer into areas outside of your comfort zone you make that known and the conversation self-terminates. It is your thread and I think you should be able to govern the topics covered. I agree that some people are very well informed which can leave others of us a bit overwhelmed but I just skip over those comments - I don't need that much detail for myself but that is no reason why others shouldn't be able to enjoy that level of complex discussion. I do like the fact this thread is quite active and given how inter-related so many symptoms and treatments are and how varied this condition is a fairly broad discussion seems to be what is keeping things moving and introducing new lines of thinking and exploration and introduces new ideas and concepts to a broader audience without having to trawl the whole of TiMS for new lines of inquiry to pursue.

My question is what is PTA? - seen it mentioned lots and keep meaning to ask.
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Re: DrSclafani answers some questions

Postby drsclafani » Tue Jan 15, 2013 2:25 am

allynz wrote:My opinion is that this thread is fairly self managing in that when people veer into areas outside of your comfort zone you make that known and the conversation self-terminates. It is your thread and I think you should be able to govern the topics covered. I agree that some people are very well informed which can leave others of us a bit overwhelmed but I just skip over those comments - I don't need that much detail for myself but that is no reason why others shouldn't be able to enjoy that level of complex discussion. I do like the fact this thread is quite active and given how inter-related so many symptoms and treatments are and how varied this condition is a fairly broad discussion seems to be what is keeping things moving and introducing new lines of thinking and exploration and introduces new ideas and concepts to a broader audience without having to trawl the whole of TiMS for new lines of inquiry to pursue.

My question is what is PTA? - seen it mentioned lots and keep meaning to ask.


P ercutaneous
T ransluminal
A ngioplasty

i just say angioplasty now. surgical angioplasty isnt very common
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Re: DrSclafani answers some questions

Postby Squeakycat » Tue Jan 15, 2013 2:45 am

drsclafani wrote:
P ercutaneous
T ransluminal
A ngioplasty

i just say angioplasty now. surgical angioplasty isnt very common
Per cutaneous = through the skin
Trans luminal = through a vein or blood vessel
Angio plasty = blood vessel mold or form with a balloon

:lol:
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