DrSclafani answers some questions

[drsclafani]

1. If an MS patient has a very high degree of disability (EDDS is well above 8 ) do you think it could be possible to only have an IJV with 50% narrowing in the proximal third (compression by the Bulbus Caroticus)?
This 50% narrowing was said not to be severe enough to treat with angioplastic. Does that mean this MS patient can forget about ever being 'liberated'?

Everything is possible. However the narrowing you describe is likely related to reduced flow througho the IJV. I suspect that a lesion of the region of the confluens has been underestimated.
you did not mention the quality of the azygous vein and you did not mention whether your narrowing was diagnosed by mrv or by catheter venography and you did not describe the results of the ultrasound.

Finally, i remind you that we are in a phase of discovery so to say that someone will never be lberated is an over-reach at this time

[drsclafani]

It is not your field of expertise maybe but can you think of a reason how and why an MS patient could benefit from stemcell therapy after angioplastic for CCSVI?

it would be irresponsible for me to respond to this question

[drsclafani]

. Can many MS laesies in/at/on the brainstem (sorry, I'm not a native speaker Embarassed ) cause a higher risk during and/or after angioplastic?

Has someone been trying to frighten you?
There is no data regarding this issue that i am aware of. It is not clear to me that treating venous obstruction would cause higher risk

[drsclafani]

The first nero specialty was for spinal issues checking for pinched nerve. He saw something in the MRI w/contrast and did not know what it was exactly. He said it could be a blockage of blood flow to the spine, but was not MS. Could the azygos blockage show up on the upper back MRI?

From the description that your first neurologist gave you, what he was mentioning could be any one of several findings. I have not been impressed with azygous imaging by mri. Dr Haacke has shown some attempts but i do not think that we are there yet

Still in discovery

[drsclafani]

When I was getting the ultrasound, the tech was looking on the right side and she had been rubbing the carotid artery and had made me very sleepy and I was nearly out. That same sudden drowsy feeling happens to me all the time. I can be awake and doing things and then I feel as if someone has slipped me something and I feel extremely drowsy. If I'm home, I will pass out for a couple of hours, sometimes fight the entire day to stay awake. If I'm not, I fight to stay awake until I am home.

My question, can this be explained by the blockages they are finding with CCSVI?

rubbing on the carotid artery reduces pulse rate by a feedback mechanism in the autonomic nervous system. . Given that MSers have abnormal autonomics, it is possible that one would not adapt to pressing too hard on the carotid. Thus the sleepiness.

just my educated guess
I do not think that pressing on the vein would cause any immeidiate effect.

Patients with nerve conduction problems like MS can have any of their nerves affected by the MS. Thus the nerves that are a component of cardiac conductivity can be affected by MS

[drsclafani]

Dear Dr Sclafani,

Two weeks ago, I had angioplasty by Dr Thomson in Melbourne, who like yourself, is a skilled, relaxed and caring IR. He ballooned at 5 points including within a stent at the valve of the IRJV, which had been placed by Drs Ludyga and Simka in Poland, in November 09. The other points of ballooning were within both jugulars and the azygos.

So in less than six months, angioplasty with stenting began to fail. Would love you to share a picture of that stenosis with us! it sounds like intimal hyperplasia to me.

For a week after the Thomson treatment there were noticeable changes similar to those experienced by many others - energy, better balance, less spasticity etc. Some of the changes have subsided and I sense this might mean that the veins have collapsed and I require a few more stents or something more permanent to keep them open.

this is going to be a big challenge. that patients feel dramatically improved early means we are doing something good but why there is a setback in some is unclear. All our anecdotal patient followup is very difficult to sort out. Is the set back because the autonomic system re-regulates itself with time after liberation? is it restenosis.....so many questions to answer!

However the most extraordinary outcome from the Thomson treatment related to my legs. For as long as I can remember I have had fat, puffy, tree trunk legs and ankles which I assumed was a deformity but worsened by 'MS'. Two days after treatment - no more tree trunk legs! Instead, shapely, normal, athletic legs that if you squinted a bit, might rival those of Michael Johnson. My wife could not believe her eyes - she clearly did not marry me for how I looked in shorts! I was walking around all day with my Jobst knee-high stockings falling down, around my ankles. The absence of edema, without a tight and constrained feeling to my legs and ankles, also made it easier to move.

Questions - have you seen similar 'leg' results in others and/or does this make 'medical sense' to you?

Sure sounds autonomic to me. i have not seen anything this dramatic yet

[drsclafani]

Someone sent me a private message asking clarification about the Zip code of my hospital

Inbox :: Message
From: hopeful2
To: drsclafani
Posted: Sun Apr 18, 2010 2:22 pm
Subject: Zip Code Wrong? Quote message
Dr. Sclafani:

The zip code you gave for letters of support (SUNY IRB, c/o ... Kings County Hospital...Brooklyn, NY) was 11215. But I thought 11203 was the zip code. (I sent the letter, with changes, to 11215.)

You may not want letters of support after all, and I won't tell a soul---but I thought I'd tell you in case this was an unintentional mistake.

Take care,

you do not need to have ms to have cog fog

i sent an incorrect zip code (home zip) instead of the correct one at the hospital

if anyone wants to rewrite write the IRB
send to
SUNY Downstate IRB
C/O
Salvatore JA Sclafani
Department of Radiology
Kings County Hospital Center
451 Clarkson Avenue
Brooklyn, New York 11203


sorry

[girlgeek33]

When I was getting the ultrasound, the tech was looking on the right side and she had been rubbing the carotid artery and had made me very sleepy and I was nearly out. That same sudden drowsy feeling happens to me all the time. I can be awake and doing things and then I feel as if someone has slipped me something and I feel extremely drowsy. If I'm home, I will pass out for a couple of hours, sometimes fight the entire day to stay awake. If I'm not, I fight to stay awake until I am home.

My question, can this be explained by the blockages they are finding with CCSVI?

rubbing on the carotid artery reduces pulse rate by a feedback mechanism in the autonomic nervous system. . Given that MSers have abnormal autonomics, it is possible that one would not adapt to pressing too hard on the carotid. Thus the sleepiness.

just my educated guess
I do not think that pressing on the vein would cause any immeidiate effect.

Patients with nerve conduction problems like MS can have any of their nerves affected by the MS. Thus the nerves that are a component of cardiac conductivity can be affected by MS

Okay, so to clarify, when I have the extreme drowsiness, at the times when I'm just living life and not getting ultrasound, do you mean that this might actually be the MS and not something to do with my veins? I do suffer severe fatigue as well as sleep issues. Mainly actually falling to sleep, Sleep specialist told me that MS has affected my "sleep trigger". Doesn't matter how tired I am at times, I will have no ability to sleep. But when I am finally sleeping, I can sleep 10-12 hours on average. So, MS has a sense of humor getting me too tired and leaving me with no ability to sleep and making me severely drowsy as if I've been drugged, just all depends on the moment...

[girlgeek33]

Another question: How often or how many times can you re-angio the veins? Thought that I read somewhere that there is likely a better chance of the 2nd angioplasty of staying open. And that with a 3rd angio required and done the best success rates for the veins to remain open. How true is this? Any concerns come to mind about doing angio a 2nd or 3rd time. Do the risks increase with each additional angioplasty. Dr. Bonn will be seeing me 1 month after, 6 months after and 1 year after.

Sleeping pill is winning this game, so I think my question is in there...
G'night all!!!

[THEGREEKFROMTHED]

It is not your field of expertise maybe but can you think of a reason how and why an MS patient could benefit from stemcell therapy after angioplastic for CCSVI?

it would be irresponsible for me to respond to this question

if its worth anything Dr Slavin from Israel was quoted by "shah" in regards to this...

[THEGREEKFROMTHED]

dr sclafani,
i have been eating a lot of feta cheese since my liberation. Do you surmise this may be counterproductive and perhaps traces have accumulated back into my IJV's? For Sparta?

dear greek
your fete of feta cheese may leave you with a fetid aroma

but George.....people take this stuff seriously

so lets be clear: the Greek is one of my patients and his rye humor has not been affected by his MS

there was a saying my grandpa used to always say....psumi, tere, ke tomato vasaliato fayee... bread, chesse, tomato, kings food....

[daniel]

you sound like one hot tamale.

i do not think that vasodilation is going to help you one bit. But i am not a dietician, just a purveyor of ccsvi, trying to put things into the context of the zamboni concepts.

I did a search of chili and cerebral blood flow and only came up with a bunch of stuff on cerebral blood flow in llamas studied in Chile

sorry i cannot be of more help.

but i say, eat what you love

Dr. Sclafani,

I too am very interested in this as I've become somewhat of a chilihead over the past few years... I do find it also helps me feel better (clears sinuses, maybe otherwise placebo effect?).

The actual active ingredient in chilis is capsicum, I did a search on google for what you said above - cerebral blood flow capsicum - and there are a few thousand matches but I do not have access to read any published papers http://www.google.ca/search?q=cerebral+ ... w+capsicum

.. I think what a lot of people are looking for are natural / alternative ways to maximize their health/blood flow while they wait for more research to be completed on CCSVI

- Dan

[cms1233]

Dr Sclafani, my sternum has always been a little deformed with the right side higher than the left and actually my ribs are deformed also with one side of my chest higher than the other. Could this have affected the azygous vein and cause CCSVI? I also find myself gasping for air or having to take a deep breath often. Thanks.

[Donnchadh]

...personally, my choice is to have stents implanted-but I appreciate that many others would be hesitant because of the dangers.

I suspect that because my veins tightened on the sixth day, the chances of migration would be lessoned after the veins start to narrow again. The veins would tightened their grip on the stent.

I felt human again after the procedure; in my mind it's worth the risks as opposed to the certainty of a horrible fate.

Each person has to make their own informed decision.

If I had what you described, i would probably also make a decision to take the risk for you sound like your options are very limited. Short term restsenosis means either that the angioplsty did not adequately treat your problem, or your problem cannot be adequately treated by angioplasty. Your conclusion that restenosis make migration less likely is possible, but migration will really depend upon how much it dilates after stenting, exactly where the stenosis is, how long the stenosis is, and a host of other issues.

While i do not want to have a migration in one of my patients, i do not think that is my greatest worry. it is more what to do if the stent clots off. will it be possible to re-established flow through the clotted stent. But for you that is a bride or stent that you havent arrived at yet.

I would love to see a picture of you pre and post procedure venograms.

I have just posted (Donnchadh's MRV) some images taken on 5 April 2010; while they are not venograms, they do show the extensive collateral veins. This test was after my venoplasty attempt.

And please I'm a happily divorced man ("bride")....I have enough to deal with MS!

Donnchadh

[drsclafani]

When I was getting the ultrasound, the tech was looking on the right side and she had been rubbing the carotid artery and had made me very sleepy and I was nearly out. That same sudden drowsy feeling happens to me all the time. I can be awake and doing things and then I feel as if someone has slipped me something and I feel extremely drowsy. If I'm home, I will pass out for a couple of hours, sometimes fight the entire day to stay awake. If I'm not, I fight to stay awake until I am home.

My question, can this be explained by the blockages they are finding with CCSVI?

rubbing on the carotid artery reduces pulse rate by a feedback mechanism in the autonomic nervous system. . Given that MSers have abnormal autonomics, it is possible that one would not adapt to pressing too hard on the carotid. Thus the sleepiness.

just my educated guess
I do not think that pressing on the vein would cause any immeidiate effect.

Patients with nerve conduction problems like MS can have any of their nerves affected by the MS. Thus the nerves that are a component of cardiac conductivity can be affected by MS

Okay, so to clarify, when I have the extreme drowsiness, at the times when I'm just living life and not getting ultrasound, do you mean that this might actually be the MS and not something to do with my veins? I do suffer severe fatigue as well as sleep issues. Mainly actually falling to sleep, Sleep specialist told me that MS has affected my "sleep trigger". Doesn't matter how tired I am at times, I will have no ability to sleep. But when I am finally sleeping, I can sleep 10-12 hours on average. So, MS has a sense of humor getting me too tired and leaving me with no ability to sleep and making me severely drowsy as if I've been drugged, just all depends on the moment...

NO i am not saying that your fatigue while living is the same as feeling very sleepy when someone presses on your carotid bulb. That is a separate refflex. that i used to try to explain why you got very tired when someone pressed on on your neck. That is not to say that ccsvi or MS cannot cause fatigue or drowsiness. Just different

I think that trying to have a unifying explanation to everything that happens is not realistic.