This Is MS Multiple Sclerosis Knowledge & Support Community

fogdweller wrote:

drsclafani wrote:
you will have to wait. because there is a confidentiality agreement pending publication some time in the future.

I just saw this on another thread. Can you report on general info, not papers to be published, or is there a cone of silence over the whole thing?

Another impatient patient.

There is nothing substantive to report. my prior email tells you what happened. Trust that there was nothing finalized at that meeting

Donnchadh wrote:Dr. Sclafani,

After watching Dr. Sinan's impressive presentation at your conference, I am wondering if you are planning to adopt his "aggressive" techniques?

I just got the IR's records concerning my second procedure, and he recorded that he inflated the balloon to 7mm x 20mm. If remember correctly he just tried 3 inflation cycles. So I am thinking he was being extremely conservative; especially compared to what Dr. Sinan is doing.
I was amazed when he said that he used cutting balloons, and in some cases, inflations of 14mm, 16mm, and even 23mm!

Donnchadh

I am going to be more aggressive when i return to the battlefield. I was previously using 12-14 mm balloons.Going forward i will dilate longer and increase sizes until the collaterals are no longer filling. but no stents

CCSVIhusband wrote:Dr. Sclafani ... I think this has probably been answered before (if it has can someone point me in the right direction) ... but can you tell us the diameter of the following veins (an approximation is fine)

internal jugular veins eight to fourtenn m m

azygous vein 6-10 mm

hemi-azygous vein 4-6mm

vertebral veins 4-8 mm

lumbar veins 2-3 mm

left common iliac vein 10-20 mm

inferior vena cava 15-40 mm

... just for reference since not many of us (other than you) have ever seen the inside of these veins to know how big or small we're talking about.

internal jugular veins eight to fourtenn m m

azygous vein 6-10 mm

hemi-azygous vein 4-6mm

vertebral veins 4-8 mm

lumbar veins 2-3 mm

left common iliac vein 10-20 mm

inferior vena cava 15-40 mm

msgator wrote:Hi Dr. Sclafani,

I had the pleasure of having my two stenosed jugular veins angioplastied last Friday by an amazing team of Dr., nurses and ultrasound techs. All had taken the time to really educate themselves about CCSVI, and this was in the States.

As I was waiting the two hours post procedure for the incision to heal sufficiently to let me go some interesting ideas were discussed and I would love to get your take on them.

1. MS patients response to sedatives and painkillers. The nurse said they are finding that they have to use higher doses on CCSVI patients to get the same effects they would have with a non CCSVI person. What they thought should knock out a person of my size did next to nothing. (Fine with me, I wanted to be with it) At first they thought LDN in the system might have something to do with it, but they are finding that is true for non LDN users also. (myself included)

However, I could barely keep my eyes open at the end of the two hour supine period, slept all the way home (1 hour 15 mins) and then slept all afternoon.

What are your thoughts??

Firstly, I do not use sedation routinely because i think it is important for the patient to partner with me and advise me if there is any pain. and for the patient to follow my instructions. If they are groggy, patients tend to move unintentionally but that really screws up the images, requiring additional injections and more radiation exposure to repeat.
I do not use analgesia since balloon dilatation has been well tolerated by my patients. If my patients told me otherwise, i would surely give them pain medicaitons.
So why would patients with MS not respond to pain killers and sedation? because many of the patients used sleeeping aids, codeine and other narcotic medicaitons for painful spasms etc.

They are not, as we say, narcotic and anxiolytic naive patients. Doses are higher in non naive patients.

SoIf you have lots of adipose, ie fatty tissue, these medications get absorbed into fat cells and then "leach"out as the blood level goes down. When those meds come out of the fat, you get sleepy.

2) Reflux. Most of my MS problems are on my right hand side so I assumed that my worst stenosis would be on the LEFT doing the damage to that side of my brain. Well I was WRONG. My left IJ was 50% stenosed and opened with a crackling noise and took no time, my right IJV was 75% stenosed and required in the end an 18mm balloon and is still not completely smooth, but the flow is good. However the stenosis in my right IJV caused blood to reflux into one of my facial veins AND the left IJV, which could explain more brain damage on the left hand side could it not???[/quote]

The blood backs up into the dural sinuses which are connected to both sides of the brain. So i do not think that the side of "worse" jugular stenosis correlates with the symptoms.

NZer1 wrote:Dr. have you seen this?
Two new papers from Dr. Chung--
by CCSVI in Multiple Sclerosis on Wednesday, October 20, 2010 at 4:11am

Extract from Joan's article;
Cerebral venous outflow insufficiency via the internal jugular vein (IJV) is associated with several neurological disorders. However, a normal reference set of IJV hemodynamic parameters derived from a large, healthy population over a wide range of age has, until now, been lacking. Color-coded duplex sonography was performed on the IJVs of 349 subjects (55.60 ± 17.49,16 to 89 y; 167 M/182 F). With increasing age, increased lumen area and decreased time-averaged mean velocity of bilateral IJV and a decreased proportion of total flow volume, drainage in the left IJV were found. The frequency of left jugular venous reflux (JVR) also increased with aging. We report IJV hemodynamic parameters across a large population, which could be used as a normal reference for clinical and research purposes. Furthermore, we found a decreased proportion of venous drainage, increased JVR prevalence, dilated lumen and slowed flow velocity in the left IJV, all of which suggest increased left IJV outflow impedance with aging. (E-mail: hhhu@vghtpe.gov.tw)
http://www.ncbi.nlm.nih.gov/pubmed/20800950

i would have to read the entire article to see their techniques and logic to make any comments.

Cece wrote:

msgator wrote:1. MS patients response to sedatives and painkillers. The nurse said they are finding that they have to use higher doses on CCSVI patients to get the same effects they would have with a non CCSVI person.

Just to chime in, this has been true for me too. My theory is that it's that MSers have an overexpression of sodium channels. (The 'boosts' in the nerves, like driving over an acceleration square in a racing video game.) Only a theory.

I pm'd newfie-girl, we have seen people restenose while on blood thinners.

a previous comment on webs:
http://www.thisisms.com/ftopicp-113632.html#113632

drsclafani wrote:i imagine that a web is really a valve leaflet that may be like the lid of a trashcan. depending upon circumstances it might cause terrible flow limitation, but a catheter can push it out of the way and lead to a missed diagnosis. I have found one that was really thin, almost imperceptible and seen on only one of four views. The other was really thick and shocking in its appearance. The part that was attached to the wall was like a pinky jutting into the lumen of the blood vessel. Angioplasty may or may not work. I just do not have sufficient long term experience to know yet.

Dr. Sclafani, any idea if these azygous webs are relatively rare or relatively common? If you found two out of twenty patients, that would be 10% right there. I know it's too early to run with that figure but ... catch me if you can ... that would mean that 10% of people treated by the typical methods have a missed azygous web. I think it may well be higher than that but even going with that figure, that is a huge number of people who are not fully treated!

Yes, i think it is the big enigma

Cece wrote:

msgator wrote:1. MS patients response to sedatives and painkillers. The nurse said they are finding that they have to use higher doses on CCSVI patients to get the same effects they would have with a non CCSVI person.

Just to chime in, this has been true for me too. My theory is that it's that MSers have an overexpression of sodium channels. (The 'boosts' in the nerves, like driving over an acceleration square in a racing video game.) Only a theory.

I pm'd newfie-girl, we have seen people restenose while on blood thinners.

a previous comment on webs:
http://www.thisisms.com/ftopicp-113632.html#113632

drsclafani wrote:i imagine that a web is really a valve leaflet that may be like the lid of a trashcan. depending upon circumstances it might cause terrible flow limitation, but a catheter can push it out of the way and lead to a missed diagnosis. I have found one that was really thin, almost imperceptible and seen on only one of four views. The other was really thick and shocking in its appearance. The part that was attached to the wall was like a pinky jutting into the lumen of the blood vessel. Angioplasty may or may not work. I just do not have sufficient long term experience to know yet.

Dr. Sclafani, any idea if these azygous webs are relatively rare or relatively common? If you found two out of twenty patients, that would be 10% right there. I know it's too early to run with that figure but ... catch me if you can ... that would mean that 10% of people treated by the typical methods have a missed azygous web. I think it may well be higher than that but even going with that figure, that is a huge number of people who are not fully treated!

What i was speaking about there , cece, is a different kind of web than that in the azygos. The azygos webs are like like spider webs forming small compartments. The semantics is pretty primitive so far

drsclafani wrote:

Donnchadh wrote:Dr. Sclafani,

After watching Dr. Sinan's impressive presentation at your conference, I am wondering if you are planning to adopt his "aggressive" techniques?

I just got the IR's records concerning my second procedure, and he recorded that he inflated the balloon to 7mm x 20mm. If remember correctly he just tried 3 inflation cycles. So I am thinking he was being extremely conservative; especially compared to what Dr. Sinan is doing.
I was amazed when he said that he used cutting balloons, and in some cases, inflations of 14mm, 16mm, and even 23mm!

Donnchadh

I am going to be more aggressive when i return to the battlefield. I was previously using 12-14 mm balloons.Going forward i will dilate longer and increase sizes until the collaterals are no longer filling. but no stents

And adopting Dr. Sinan's approach for the azygos vein?

Donnchadh

Hi Dr Sclafani,

I have a question,
Could it be possible, if someone fall very hard, to break azygos or lumbar veins?

5 years ago, I fell very hard with my snowboard, by back bent at the limit and did a huge CrAcK!!!! it wasnt very painful so I didnt go at the hospital, but at the end of the day, a 10''x8'' bruise appeir on my back.

and in the past 5 years, the symptoms of MS appeired slowly. only in the past 2 years it affect me(difficulty to walk, stiffness in the legs, dropfoot, LOTS of fatigue, numbness in the legs and lowerbody).
I have a little numbness in the left hand, but nothing to compare with my feets.

their is no case of MS anyway in my family, so I'm wondering if maybe I broke a veins that clog or badly repear itself, or something like that.

I think I have a picture of the bruise somewhere, I will try to find it...

have you ever seen this kind of case?

Donnchadh wrote:

drsclafani wrote:

Donnchadh wrote:Dr. Sclafani,

After watching Dr. Sinan's impressive presentation at your conference, I am wondering if you are planning to adopt his "aggressive" techniques?

I just got the IR's records concerning my second procedure, and he recorded that he inflated the balloon to 7mm x 20mm. If remember correctly he just tried 3 inflation cycles. So I am thinking he was being extremely conservative; especially compared to what Dr. Sinan is doing.
I was amazed when he said that he used cutting balloons, and in some cases, inflations of 14mm, 16mm, and even 23mm!

Donnchadh

I am going to be more aggressive when i return to the battlefield. I was previously using 12-14 mm balloons.Going forward i will dilate longer and increase sizes until the collaterals are no longer filling. but no stents

And adopting Dr. Sinan's approach for the azygos vein?

Donnchadh

yes, i am going to evaluate that idea. Gently

Mathd wrote:Hi Dr Sclafani,

I have a question,
Could it be possible, if someone fall very hard, to break azygos or lumbar veins?

5 years ago, I fell very hard with my snowboard, by back bent at the limit and did a huge CrAcK!!!! it wasnt very painful so I didnt go at the hospital, but at the end of the day, a 10''x8'' bruise appeir on my back.

and in the past 5 years, the symptoms of MS appeired slowly. only in the past 2 years it affect me(difficulty to walk, stiffness in the legs, dropfoot, LOTS of fatigue, numbness in the legs and lowerbody).
I have a little numbness in the left hand, but nothing to compare with my feets.

their is no case of MS anyway in my family, so I'm wondering if maybe I broke a veins that clog or badly repear itself, or something like that.

I think I have a picture of the bruise somewhere, I will try to find it...

have you ever seen this kind of case?

i have not. i would not exclude a contributory effect, but would be surprised if it was the cause

Mathd wrote:Hi Dr Sclafani,

I have a question,
Could it be possible, if someone fall very hard, to break azygos or lumbar veins?

5 years ago, I fell very hard with my snowboard, by back bent at the limit and did a huge CrAcK!!!! it wasnt very painful so I didnt go at the hospital, but at the end of the day, a 10''x8'' bruise appeir on my back.

and in the past 5 years, the symptoms of MS appeired slowly. only in the past 2 years it affect me(difficulty to walk, stiffness in the legs, dropfoot, LOTS of fatigue, numbness in the legs and lowerbody).
I have a little numbness in the left hand, but nothing to compare with my feets.

their is no case of MS anyway in my family, so I'm wondering if maybe I broke a veins that clog or badly repear itself, or something like that.

I think I have a picture of the bruise somewhere, I will try to find it...

have you ever seen this kind of case?

First of all, I am not a doctor nor play one on TV.

However, I also suffered a bad fall and had neck and head trauma. I have corresponded with about two dozen other "MS" patients with histories of trauma. What you describe is typical. I doubt if you "broke" a vein as the resulting internal bleeding would have been noticeable. I suspect that there is stenosis somewhere and possible internal vein scar tissue formation.

Your description of consistent, progressive appearance of "MS" symptoms is also typical. I doubt if you will get any better unless you take action.

You best course would be to have a color echo Doppler ultrasound done by technicians trained for scanning CCSVI. If anything is amiss, find a competent IR who can do a venogram to identify exactly what is wrong.

My opinion only, but your case is very much like others with a history of trauma.

Donnchadh

Hi. Dr.S. I am the father of a 14 year old boy, who March of this yearl had a we were hoping ADEM episode. He made a full recovery with the 5 day's of steroids. He had around 10 lesions mostly in the periventricular area. Our Neuro wanted to do a MRI every 3 months for the next year. June we had a MRI and the lesions were getting smaller in size, he was happy. Oct 6th another MRI, this one showed a new lesion. He has no disabilities and is a normal athletic young boy. I know there isn't much info or testing for pediatrics, I was wondering if you or anybody else has heard if the trials in Buffalo for the pediatrics are looking promising? We have a Neuro appt. in 6 months, in the meantime we are doing the paleo diet and vitamins and see what happens. The Neuro we have is very open minded and looking at all the options.

Thanks Dr.S for all the hard work and dedication you have shown to all on this site.
Jimmy.

drsclafani wrote: The blood backs up into the dural sinuses which are connected to both sides of the brain. So i do not think that the side of "worse" jugular stenosis correlates with the symptoms.

A slightly different take. My stenoses turented out to be in my jugulars; one 70% stenosed and one 50% stenosed. My azygous appeared clear. I have very mild symptoms during the day, very severe at night and first thing in the morning til I move around. I can hardly walk 20 feet to the master bathroom if I get up in the night, but have no problem with two blocks during the day. I even started a thread about this diurnal pattern.

Since my understanding is that the jugulars are promarily responsible for blood drainage when you are lying down (e.g. during the night), do you think my pattern might be due to the location of the stenoses?

I think I will start a thread for people who have had diagnosis and compare their night and early morning experience with day. It might end up being a diagnostic aid.

drsclafani wrote:What i was speaking about there , cece, is a different kind of web than that in the azygos. The azygos webs are like like spider webs forming small compartments. The semantics is pretty primitive so far

Is this sort of web found elsewhere in any other veins of the body? Why would this sort of web be found in the azygous and not the jugulars? (Or can these spiderweb tangles form there too?)

I had assumed you wouldn't be trying the azygous ballooning diagnostic method, since you had IVUS. I don't suppose we know yet which is better. That was a good question, Donnchadh. Would the 'gently' be because the ballooning could cause damage to the venous wall in a perfectly good azygous (assuming no webs found)? Or are these such small balloon sizes that there is little risk?

Flashover81, it might be possible to talk an IR into doing the doppler ultrasound on a minor, since that is noninvasive. It could not hurt to ask. Are there any ccsvi docs near you?