DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby drsclafani » Sat Oct 15, 2011 9:14 pm

LiveFree wrote:Hey Dr. Sclafani

I'm relatively new here. Have been a lurker since being diagnosed w/MS in May 2011.

Anyway, I hopefully have a real simple question for you.What percentage of patients that you've treated have had issues with their Azygous?


welcome

my data shows about 50%, other reports are higher,others lower
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Oct 15, 2011 9:25 pm

NZer1 wrote:Thanks for your Magic with Frances Dr.

Now I'm nosey and don't want to pester her with my questions so I thought I would ask you instead :lol:

*It sounds like a 'standard' case in regard to Jugs and a twist with valves for the Azygos?

*Were there other areas that were of interest/concern?

nigel
it is a federal crime to divulge personal medical information without written consent. so unless you want me in the slammer, accept my apologies

*The work done here (NZ) I am guessing will have not had detrimental effect being under ballooned?

*Big question now, what is the likely hood of needing further treatments?

*I am guessing that you get an indication of difficulty to correct that correlates to need for retreating?

i cannot predict who will restenose. not enough experience with restenosis

*How much effect on overall drainage will there be with what you have found and is it likely to be a case of wait and heal for improvements?

it is always a case of waiting and HOping that improvements will occur

*Verts and Lumbars OK? My interest is how one flow eg. suprine can be delayed and the other must surely be hindered as well by the compensation, or bypassing, even if there is no visible obstruction, the extra volume due to compensation must have an effect on through put in general.

nigel vertebrals will have to wait until next year. I have already bitten off quite a bit, focusing on three veins at the beginning to eleven veins now has been enough for one year. I am thinking that study of the vertebral veins is going to be not very revealing. Lumbars are difficult to see in many procedure.

*Did using IVUS make the difference in this case?

it always makes the difference. in detecting azygous disease, in sizing balloons and in evaluating treatments IVUS is king

Thanks Dr., it's a great feeling to know you have given her your best!


quite a lovely person

Regards Nigel[/quote]
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Re: DrSclafani answers some questions

Postby LiveFree » Sun Oct 16, 2011 11:25 am

drsclafani wrote:
LiveFree wrote:Hey Dr. Sclafani

I'm relatively new here. Have been a lurker since being diagnosed w/MS in May 2011.

Anyway, I hopefully have a real simple question for you.What percentage of patients that you've treated have had issues with their Azygous?


welcome

my data shows about 50%, other reports are higher,others lower



Thanks Dr Sclafani

The reason I asked the question was because the doctor I had for CCSVI treatment said that he saw azygous problems in only about 10% of his patients. My gut told me thatthis was too low based on Dr. Zamboni's following research:

======================================
"In particular, the azygous vein in the MS group was affected in 86% of cases.
Most cases involved membranous obstruction of the junction with the superior
vena cava, twisting, or, less frequently, septum and atresia, as can be seen
in the x rays in fig 2A (b, c, d); in 12 cases the azygous system presented
stenoses at several points up to even atresia of the lumbar plexuses (18%)
(fig 2C (j, k, l))." ---(pg 395)(pg.4)

SOURCE:
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2009 Apr;80(4):392-9

LINK: http://jnnp.bmj.com/content/80/4/392.full.pdf
======================================

Despite my reservations, I decided to trust the judgement of the doctor since what the heck do I know right? I genuinely like the doctor too. This doesn't necessarily translate into results though

I thought with my symptoms and with the way MS took me down (Fast & Hard w\ lesions in my lower spine) I thought there certainly would be some issues with the Azygous. So I recently went through the procedure
and afterward the doctor mentioned that he found nothing with the Azygous

The preliminary results from the procedure have left me as one of the non-responders (kinda). The spasticity in my left leg has been ratcheted up quite a bit. And the tension in my back and abdomen (MS Hug) has also increased considerably in intensity. I kinda went the wrong way. crap!

I knew the risks going in so I accept my fate. It does make me sad though. I tried to guard against this by thinking I was prepared for anything going in. It it still hard to accept though when your the one who is getting his "Azygous" kicked.

Anyway, thanks for listening to the ramblings of a disappointed man. Also thanks for everything you are doing to help people with MS. You are a rare man indeed Dr. Sclafani.

Take care,
-LiveFree
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Re: DrSclafani answers some questions

Postby Cece » Sun Oct 16, 2011 2:50 pm

Sundays are often a wonderful day for posting case studies.... :wink:

LiveFree, when you said newly diagnosed, I assumed that you would not be as affected as you are. Do you know if your IR checked the renal or the iliac veins or the ascending lumbar veins? If not, and if he didn't use IVUS, there might be more to explore in terms of your CCSVI.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Oct 16, 2011 7:26 pm

LiveFree wrote:
drsclafani wrote:
LiveFree wrote:Hey Dr. Sclafani

I'm relatively new here. Have been a lurker since being diagnosed w/MS in May 2011.

Anyway, I hopefully have a real simple question for you.What percentage of patients that you've treated have had issues with their Azygous?


welcome

my data shows about 50%, other reports are higher,others lower



Thanks Dr Sclafani

The reason I asked the question was because the doctor I had for CCSVI treatment said that he saw azygous problems in only about 10% of his patients. My gut told me thatthis was too low based on Dr. Zamboni's following research:

======================================
"In particular, the azygous vein in the MS group was affected in 86% of cases.
Most cases involved membranous obstruction of the junction with the superior
vena cava, twisting, or, less frequently, septum and atresia, as can be seen
in the x rays in fig 2A (b, c, d); in 12 cases the azygous system presented
stenoses at several points up to even atresia of the lumbar plexuses (18%)
(fig 2C (j, k, l))." ---(pg 395)(pg.4)

SOURCE:
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2009 Apr;80(4):392-9

LINK: http://jnnp.bmj.com/content/80/4/392.full.pdf
======================================

Despite my reservations, I decided to trust the judgement of the doctor since what the heck do I know right? I genuinely like the doctor too. This doesn't necessarily translate into results though

I thought with my symptoms and with the way MS took me down (Fast & Hard w\ lesions in my lower spine) I thought there certainly would be some issues with the Azygous. So I recently went through the procedure
and afterward the doctor mentioned that he found nothing with the Azygous

The preliminary results from the procedure have left me as one of the non-responders (kinda). The spasticity in my left leg has been ratcheted up quite a bit. And the tension in my back and abdomen (MS Hug) has also increased considerably in intensity. I kinda went the wrong way. crap!

I knew the risks going in so I accept my fate. It does make me sad though. I tried to guard against this by thinking I was prepared for anything going in. It it still hard to accept though when your the one who is getting his "Azygous" kicked.

Anyway, thanks for listening to the ramblings of a disappointed man. Also thanks for everything you are doing to help people with MS. You are a rare man indeed Dr. Sclafani.

Take care,
-LiveFree


I think that the azygous is the really challenging part of diagnosis. I dont agree with all the diagnoses described by zamboni and galleoti. I think that what looks narrowed changes considerably depending upon the phase of respiration the images are taken in. I ama very unimpressed with most "candywrapper" and stenoses at the arch/ascending azygous junction. stenoses imaged in deep inspiration enlarge everything, in deep expiration makes a lot of things look like stenoses.

also, while you can keep your jugular veins from moving by holding your neck still, the heart continues to beat during imaging of the azygous. this can lead to misregistration of the subtraction images and really obscure the accuracy of the azygous images.

That is why i believe that ivus is the gold standard for looking at the azygous. In my own study venography only found 75% of the azygous problems seen by IVUS

So at this point, I think that we are not seeing enough written about studies of the azygous vein.
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Re: DrSclafani answers some questions

Postby LiveFree » Sun Oct 16, 2011 8:34 pm

Cece wrote:Sundays are often a wonderful day for posting case studies.... :wink:

LiveFree, when you said newly diagnosed, I assumed that you would not be as affected as you are. Do you know if your IR checked the renal or the iliac veins or the ascending lumbar veins? If not, and if he didn't use IVUS, there might be more to explore in terms of your CCSVI.



Hi Cece,


Cece wrote:LiveFree, when you said newly diagnosed, I assumed that you would not be as affected as you are.

The attack I had absolutely beat the tar out of me. In about a month I went from a guy with an EDSS of 0 to a guy with an EDSS of 6.5 (spiked at about 8.5)--all self assessed. Of course I was probably was a little slower getting to the doctor than I should have been. I simply didn't have the desire or time to be sick. At the time I was just going to walk it off. I'm a bit stubborn (or dense :? ). Been told its a guy thing

Cece wrote:Do you know if your IR checked the renal or the iliac veins or the ascending lumbar veins?

I know for sure he checked the renal. I'm not sure on the others. I have a followup in Nov so I will ask. But as Dr Sclafani said in his Pitfalls of Venography video (http://www.youtube.com/watch?v=dhmgv4sPlUc) that anyone who has been treated needs to be skeptical that everything is found


Cece wrote:If not, and if he didn't use IVUS, there might be more to explore in terms of your CCSVI.

He did use IVUS.

I was just recently treated so I probably just need to be a little more patient. The increase in my spasticity has me spooked a bit though.You'd think that I'd be getting used to this roller coaster ride by now. I'm willing to get off at any time :-D

Anyway Cece thanks for being a tenacious advocate for CCSVI and us MSers

Take Care,
-LiveFree
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Re: DrSclafani answers some questions

Postby LiveFree » Sun Oct 16, 2011 8:50 pm

drsclafani wrote:
I think that the azygous is the really challenging part of diagnosis. I dont agree with all the diagnoses described by zamboni and galleoti. I think that what looks narrowed changes considerably depending upon the phase of respiration the images are taken in. I ama very unimpressed with most "candywrapper" and stenoses at the arch/ascending azygous junction. stenoses imaged in deep inspiration enlarge everything, in deep expiration makes a lot of things look like stenoses.

also, while you can keep your jugular veins from moving by holding your neck still, the heart continues to beat during imaging of the azygous. this can lead to misregistration of the subtraction images and really obscure the accuracy of the azygous images.

That is why i believe that ivus is the gold standard for looking at the azygous. In my own study venography only found 75% of the azygous problems seen by IVUS

So at this point, I think that we are not seeing enough written about studies of the azygous vein.



Thanks for the answer Dr Sclafani. One last question.
Does IVUS give you better structural information and the venography give better flow information?
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Re: DrSclafani answers some questions

Postby Cece » Sun Oct 16, 2011 10:13 pm

LiveFree wrote:He did use IVUS.

Unless he was inexperienced with it, I would trust the gold standard of IVUS. Jugular stenoses could contribute to lower spinal lesions, although I am not sure exactly how.
I hope the spasticity is temporary and that things turn around. Keep us posted.

edited to add: that's not right, is it. Even if Dr. Sclafani and Livefree's Doc both use IVUS, the discrepancy in percentages (50% vs 10%) indicates that they are in disagreement on what they consider a stenosis.
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Re: DrSclafani answers some questions

Postby pelopidas » Mon Oct 17, 2011 7:59 am

I would like to ask what are your steps, what do you suggest for the treatment of a post - op thrombus
It appeared on the second post op week in the left jugular and it seems rather occlusive
The patient is a friend and the treating doctor in Italy could not reply immediately.

Dr Sclafani, we all thank you for the time you spend for our questions, and they are a lot!
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Re: DrSclafani answers some questions

Postby bruce123 » Mon Oct 17, 2011 11:01 am

Hi Dr. Sclafani,

Could you comment on if you are seeing an increase in the duration of symptom relief?

I know that you are constantly refining your technique in an effort to improve the results for your patients so we are dealing with a moving target, but are you seeing symptom relief times increasing with your patients?

Bruce.
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Re: DrSclafani answers some questions

Postby drsclafani » Tue Oct 18, 2011 12:02 pm

bruce123 wrote:Hi Dr. Sclafani,

Could you comment on if you are seeing an increase in the duration of symptom relief?

I know that you are constantly refining your technique in an effort to improve the results for your patients so we are dealing with a moving target, but are you seeing symptom relief times increasing with your patients?

Bruce.


Yes, i think the overall trend is to more positive effects lasting longer in more patients. Unfortunately, there are still those who have short term positive effects that recede. I wish it were financially possible to pursue these setbacks but most patients just cannot afford the efforts it would take. We will have to wait for wider insurer acceptance so that we can better explore how to address the non-responders and the early return of symptoms.

Another thing i am noticing is an absent of frequent relapses in the RRMS group. Perhaps it is poor recording. Time will tell.
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Re: DrSclafani answers some questions

Postby drsclafani » Tue Oct 18, 2011 1:01 pm

I wanted to share an added value of our discussions here!

i received this email today from one of my patients: I was in regards to Lymes disease

Good Morning Dr. Sclafani,

Thanks for helping me to help another!!

I have some very interesting news to share with you. Based on your comments a few months ago, when you treated a fellow TIMS member (can not remember their user name, but the person who had very nice veins that you recommended to get tested for Lymes....)!?! There is a young man in our lives that was dx'd with MS before I was. He was in his graduation from high school year when he was dx'd with MS & was my youngest son's best friend through school, spent lots of time at our home and has deteriorated so badly over the past few years. He went to the Hubbard Foundation to be tested & treated early this year. They found nothing wrong with his veins. After your statement, I convinced them to go to a NDMD that I have seen personally, that is an expert in Lyme disease here in Alberta. They are very introverted people and the young fellow was so afraid of another disappointment, after his CCSVI procedure, but after all that has been said about Lymes on TIMS, I pushed his Mom to leave no stone unturned and she finally convinced him to go to this specialist in Calgary that I found for them! I learned minutes ago that he has a Lymes diagnosis!! In Canada, Lymes is not recognized as it should be. There are horror stories of people who find they have a dx of Lymes after being so disabled that they are on disability from work! Steve, the young man I'm telling you about has been on long term disability for 2+ years at this point!

I felt a need to share this news with you, because it was your statement about the patient you treated that I used to convince this family to look at this option. I feel so good to have helped them learn what is really going on. He is almost like a son to me because he & my son were together so much, growing up! Maybe he has MS too?? But he now knows he has to be treated for Lymes and maybe he will function again! Thank you for vocalizing to the forum about the importance of considering Lyme Disease. It has helped one person for sure!

As for me.... this is actually my 3 month anniversary since my treatment on July 18, 2011. I have no changes to report. Still good heat tolerance - spent a week in Kona, HI and a week in Phoenix, AZ. Lots of heat & lots of perspiration. I was able to navigate escalators with luggage in both hands w/o using the railings. my husband was SHOCKED that my balance allowed me to do this!


Thanks for everything you do....


Thank you all for the interesting conversation we had here about the possibility of LYME disease in a patient who had only mild abnormalities on his venogram. The lack of venous abnormalities made me suggest that perhaps the diagnosis of MS was incorrect. I brought up the possibility of Lyme because he had grown up on a farm in michigan.

I regret that I could not help him, but i am thankful that we had that discussion. Perhaps we helped someone else

s
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Oct 19, 2011 10:37 pm

pelopidas wrote:I would like to ask what are your steps, what do you suggest for the treatment of a post - op thrombus
It appeared on the second post op week in the left jugular and it seems rather occlusive
The patient is a friend and the treating doctor in Italy could not reply immediately.

Dr Sclafani, we all thank you for the time you spend for our questions, and they are a lot!


seems to me like the questions are slowing down greatly. Should I consider this a success?
but perhaps i should branch out to other media....

the treatment starategy of thrombosis depends upon
1. clinical effects
2. location of the thrombus
3. whether thrombus is occlusive or not
4. how old the thrombus is
5.how long the thrombosis is
6. whether there is room to manipulate catheters above and below the thrombus
7. whether there is an inherent coagulopathy
8. what caused the thrombus
9. what was the prognosis for the vein before the thrombosis
10. what are the risks of the intervention

as you can see this is going to be a long discussion.

Lets see if anyone is reading.
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Re: DrSclafani answers some questions

Postby munchkin » Thu Oct 20, 2011 5:19 am

I'm reading. Just hoping these aren't repeat questions and are of the type you were looking for.

How much of the above information can be determined by the U/S?
If there is coagulopathy how can that issue be mitigated?
How many of your re-treatments have required stents and have you seen a decrease in the rate of clotting or intimal hypoplasia?
Have you noticed if there is a gender or age susceptibility to thrombosis?
How do you determine the prognosis for the vein before the thrombosis?

Thanks for your time.
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Re: DrSclafani answers some questions

Postby ada » Thu Oct 20, 2011 6:05 am

dear dr S
we are non-stop readers.
we learn so much from you all this time that you can not imagine.
agni and mixalis from greece
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