DrSclafani answers some questions

[pelopidas]

With ISNVD coming up, I am glad we have you there representing us, and representing the need for as complete a CCSVI treatment as possible! Using IVUS is about being thorough and being safe. Treating renal stenosis is about doing everything that can be done to improve cerebrospinal flow. Checking the veins into which the condylar emissary vein flows? Thorough, thorough, thorough. And it makes a difference for the patients.

Cece, you read our mind.
Dr S, in our mind we are all together there at ISNVD expecting better treatment and hope for MSers.
You are there representing all of us with your outstanding work!

[magoo]

Dr Sclafani,
After two treatments, (10-09 and 4-11) and feeling pretty darn good, this January I began to sense something was off. I had an MRI yesterday and to my shock and surprise, there is a new 8.3mm lesion. If this happened to one of your patients, what would be your recommendation?
Have you come across patients who have had new lesion activity post treatment?

[drsclafani]

The first image is the jugular, with very little flow. Are the next two the dural sinus images, shown from the side? There is a lot going on there. The third shows the jugular angioplasty, and the fourth the results, which are not ideal, but improved from the first image.

The first two ivus images show the vein, looking ok, but what is shown in the third ivus image? I find it hard to make out a lumen to the vein. It does not look like the usual valvular blockages that have an obvious vein and a little white line for the valve blockage. Could it be a recanalized thrombosis? My guess on the fourth image is that it's the jugular and the subclavian coming together, each one marked in red?

The first image is an injection at the top of the IJV. Most of the vessels with the contrast in them are the same as the second image on the left. So contrary to what we thought when looking at the frontal views and thinking that the contrast was in the vertebral vein, what is true is that this is a posterior vein draining the brain via the condylar emissary vein. THESE ARE NOT THE VERTEBRAL VEINS. They are behind the spine not in the spine. From the frontal view, far left, one would think that these are the vertebral veins.
on the second from left one sees the catheter with NO contrast. All the contrast is going posteriorly because there is total obstruction of the IJV. This is better seen on the middle image. an anterior vein is now seen, probably the anterior jugular vein or a thyroid vein. Look how well this anterior jugular vein collapses after the angioplasty. Not the best outcome but open nontheless. If symptomatic relief is not forthcoming in two months, i would retry, possibly with stent.

on the IVUS images. The first one is in the upper neck. Looks pretty good. The second from the left is lower down. The vein is of normal size but the inside is now speckled. I interpreted that as representing slow or low flow. The ghird image actually is the stenosis,. The center part represents the IVUS device, which is 2.7 mm in diameter. There just isnt a lumen worth talking about.

[drsclafani]

Dr Sclafani,
After two treatments, (10-09 and 4-11) and feeling pretty darn good, this January I began to sense something was off. I had an MRI yesterday and to my shock and surprise, there is a new 8.3mm lesion. If this happened to one of your patients, what would be your recommendation?
Have you come across patients who have had new lesion activity post treatment?

1. steroids for relapse, and thoughtful discussion about if and what dmd might be indicated. Did anyone advise you to stop meds?
2. ultrasound, to look for reflux
3. neurological examination to look for changes
4. depending on results, venography. it is almost ten months. I would have to know more.

As i am not treating MS, i am not routinely getting MRI. i leave that to the patient's neurologist.

Some patients do get relapses despite treatment, but most still have some problems with their veins, not all, tho.
how are you feeling?

s

[magoo]

I do have some neurological decline. I have been tired, dizzy and shaking. I have some cogfog and an intense feeling of pressure and pain at the base of my skull. I had a couple of months of intense chest pain after my last treatment, along with angio only for Nutcracker, so do you think these could be sources of severe reflux leading to new lesions if they closed up? I am unable to get an ultrasound here. I am going to have treatment again...but, when and where, I don't know just yet. I'm heading out to CA in two weeks, so I'll see if I can reach Dake. I'm also due to visit NYC, so maybe I'll come see you!! (I'll have to check my insurance) Thanks for the information and support Dr. S.

[drsclafani]

I do have some neurological decline. I have been tired, dizzy and shaking. I have some cogfog and an intense feeling of pressure and pain at the base of my skull. I had a couple of months of intense chest pain after my last treatment, along with angio only for Nutcracker, so do you think these could be sources of severe reflux leading to new lesions if they closed up? I am unable to get an ultrasound here. I am going to have treatment again...but, when and where, I don't know just yet. I'm heading out to CA in two weeks, so I'll see if I can reach Dake. I'm also due to visit NYC, so maybe I'll come see you!! (I'll have to check my insurance) Thanks for the information and support Dr. S.

the pain in the back of the neck may be the result of increasing flow through the condylar emissary veins. this suggests IJV outflow obstruction.

Why would you not be able to get an ultrasound? One should always worry about thrombosis if symptoms develop acutely.

[magoo]

The IR group here has a tech who was trained, but they have chosen to deny any type of CCSVI diagnosis or treatment as a group until they determine enough studies have been conducted. Really unfortunate.

[drsclafani]

The IR group here has a tech who was trained, but they have chosen to deny any type of CCSVI diagnosis or treatment as a group until they determine enough studies have been conducted. Really unfortunate.

you really do not have any need for a specialized CCSVI ultrasound by Zamboni protocol because you have already had one. The real concern now is whether you have developed thrombosis of the jugular vein because of the neck paini. This is certainly a reasonable diagnostic test in anyone who has had angioplasty regardless of diagnosis.

my diagnosis for the purpose of the test would be "thrombosis of the jugular vein after angioplasty". the test would enable me to determine whether my diagnosis was correct or not.

[msfire]

Sorry for going off topic, does anyone know Dr .Sal's facebook page? Thank you all.

[magoo]

Thank you Dr. S. I will pursue a diagnosis.

[msfire]

The IR group here has a tech who was trained, but they have chosen to deny any type of CCSVI diagnosis or treatment as a group until they determine enough studies have been conducted. Really unfortunate.

you really do not have any need for a specialized CCSVI ultrasound by Zamboni protocol because you have already had one. The real concern now is whether you have developed thrombosis of the jugular vein because of the neck paini. This is certainly a reasonable diagnostic test in anyone who has had angioplasty regardless of diagnosis.

my diagnosis for the purpose of the test would be "thrombosis of the jugular vein after angioplasty". the test would enable me to determine whether my diagnosis was correct or not.

mangoo if you have the chance to see Dr. S I would strongly recommend it, I speak from personal hands on experience.

[pelopidas]

Sorry for going off topic, does anyone know Dr .Sal's facebook page? Thank you all.

http://www.facebook.com/Sal.Sclafani.MD

[drsclafani]

Perhaps i have not clearly described how important I think the case that i have shown is. In my book it is a smoking gun, a veritable proof that venous obstructions cause symptoms in the absence of prior neurological disease. In essence what has been described is the acute volume overload of the cerebrospinal circuits resulting in neurological symptoms that respond just as as fast as they developed by improvement in venous outflow.

This patient has NO MS, has No neurological disease, No evidence of demyelination. In fact while her ccsvi venous pathology is similar to that of anyone else who has ccsvi, it did not cause symptoms until flow was increased by occluding the ovarian vein and shunting the blood into the cerebrospinal circui and it resolved as soon as angioplasty of the jugulars and stenting of the renal vein was accomplished.

in other words, it is its own symptom complex

[NZer1]

So let me put it back to you this way Sal,

What diseases have 'CCSVI' in common, such as MS, that come to your door?

Do we have a situation where the whole dx system/structure/assessment/understanding needs to be re-evaluated?

Who can help with this?

Neurology needs to get off their auto-immunity horse, Vascular Specialists need to make a stand and everyone needs smell the roses that you are offering?

Enjoy your weekend, mine has started in this part of the world,
Nigel

[drsclafani]

So let me put it back to you this way Sal,

What diseases have 'CCSVI' in common, such as MS, that come to your door?

Do we have a situation where the whole dx system/structure/assessment/understanding needs to be re-evaluated?

Who can help with this?

Neurology needs to get off their auto-immunity horse, Vascular Specialists need to make a stand and everyone needs smell the roses that you are offering?

Enjoy your weekend, mine has started in this part of the world,
Nigel

Nigel,
The overwhelming majority of the patients who have ccsvi due to venous obstructions are patients who have been given a diagnosis of multiple sclerosis. I think that many of these patients have symptoms that are due to ccsvi, but when that symptom complex has been detected, the natural assumption has been that those symptoms are due to MS. This is neither surprising nor unreasonable if one never knew that there actually were obstructions of the veins.

Sort of analogous to a 15th Century peasant concluding that the disappearance of a ship crossing the atlantic was caused by that ship falling off a flat earth. If you thought the earth was flat, that would be a very logical conclusion.

This case shows very clearly that a patient with these symptoms can exist without any neurological disease.