DrSclafani answers some questions

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

Postby drsclafani » Thu Oct 14, 2010 8:50 pm

magoo wrote:
I think Dake's follow up plan has been very beneficial. In addition, he is always available via email for any questions or concerns. He responds within minutes in most cases. :D I have been in constant contact with him over the past year. We also send progress emails to him. I am most excited to see the comparison in MRI from my treatment to now. The baseline was charted for us, so we will be able to measure the progress or regression.
I wish everyone had a follow up care plan. It is not a one shot deal at this point for most. Our results unfortunately will not be in medical publications because they were not in trial form. (I think :? )

mike is a good doctor. we did well to have him trailblaze in the states.
now that he has some funding, i look forward to his moving forward
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Re: restenosis cell proliferation

Postby drsclafani » Thu Oct 14, 2010 8:53 pm

fogdweller wrote:
drsclafani wrote:my biggest concern about stents is that when they fail, there is not much that can be done for them. When angioplasty fails, it can be repeated.

Recurrent symptoms really bothers me. The ideal strategies for effective angioplasty probably has not been fully worked out. Might several dilatations over a few months improve the remodeling of the abnormal collagen in the areas of obstruction?

What do you think about using heated balloons? That was played with a bit years ago in coronary angioplasty, and it didn't work, but that is a different kind of restenosis. Maybe if remodeling the abnormal collagen is the goal, a heated balloon might work.

Just brainstorming.

The heat is generally laser in origin. heat is damaging to the inner lining(intima) i worry about thrombosis when the intima is damaged.

Such trials are secondary trials. we are not ready for them yet.
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Postby Cece » Thu Oct 14, 2010 9:19 pm

drsclafani wrote:I am sorry that i have been hampered in retreating my patients who were managed six months ago. I never expected to be stopped like i was.

I can count the number of doctors who were shut down and the list does not begin or end with Sclafani.

I am sorry to have mentioned follow-up care, that did not need to be said.
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Postby bestadmom » Thu Oct 14, 2010 9:41 pm

How about starting a list of drs that began and were shut down and started up again? I'd like to see Sclafani start that list.

Dr. S, I know you do too!
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Postby David1949 » Thu Oct 14, 2010 10:45 pm

There is a new treatment for clearing plaques from arteries called laser angioplasty. There is a video of it here:
( Sorry but you have to sit through a dumb commercial before the laser story)

Is it possible this technology might be able to clear blood clots from veins?
According to the audio, the laser disintegrates plaques down to the molecular level so they can be dissolved in the blood and carried away.
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Postby Cece » Fri Oct 15, 2010 7:33 am

drsclafani wrote:Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.

You know we have spent the last year scouting out doctors. Do you need a list of names of doctors who are doing the Doppler ultrasound for CCSVI? Do they need to have had specific training? Or is this not the right approach? Do you have particular cities you need?

I have a CCSVI question but I have forgotten it three times.

bestadmom, I like your idea!
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Postby tzootsi » Fri Oct 15, 2010 8:09 am

Hi Dr. S,

I posted this question out on the boards, but I thought I'd also put it here for your thoughts:

It's pretty much a no-brainer that veggies like broccoli, kale, swiss chard, and spinach are very good for you. In fact Dr. Wahl's ms regimen calls for lots and lots of them in your diet since they benefit mitochondria. However, these veggies are loaded with vitamin K, the blood clotting vitamin. I wonder if eating them after stents were put in might not be a good idea.?
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Postby elliberato » Fri Oct 15, 2010 2:53 pm

Dr Sclafani,
there is so much talk on here about the etiology and pathology of veins and such. We are all desperate to do something and CCSVI makes sense as well the procedure is so minimally invasive. What I fail to see however is results?! There are lots of videos about people who say they now have warm feet or can lift a toe or whatnot. I know anything is better than nothing. My question is this. Does this thing really work? Are pwms much better off with the procedure? Did you see that while you treated? Are the patients you treated improving clinically? Have you seen it in your travels and all the people you are learning from? Do pwms really get better from this procedure or what?!
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Re: restenosis cell proliferation

Postby 1eye » Fri Oct 15, 2010 3:27 pm

drsclafani wrote: A high volume infusion of fluid with sodium bicarbonate seems to be more effective in reducing the risk of the constrast media. Certain types of xray dyes have virtually eliminated this risk in most patients.

Probably silly, but why not saline?
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Postby Cece » Sat Oct 16, 2010 11:33 am

My remembered question:

In the early days last winter, it was a big question if the travel posed a risk post-procedure.

I've dug up research that shows that oxygen levels of people flying commercially will drop to levels that might prompt a doctor to put an oxygen mask on them if it were in a hospital setting. Presumably post-procedure the patient's oxygen levels are healthier, so it would be when traveling in that this would be an oxygen-deprivation event.

Travel itself is a big stress to the system of an MSer. That a patient last summer passed away on the plane ride home could be a coincidence, as it was attributed to the multiple blood thinners.

How difficult would it be when doing data collection to include a column for whether the patient had traveled or not for the treatment? Then when doing the data analysis it could be checked to see if the travel itself had any detrimental effect on the outcome. This would be of immediate use to people choosing between going local, traveling a little, or traveling far.

( references:
1. http://tinyurl.com/25ao9z5
2. http://www.ncbi.nlm.nih.gov/pubmed/8239156
3. http://tinyurl.com/2foczp9 )
(note that these are oxygen saturation figures for the body at large, in an MSer the brain would have even less oxygen)
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Postby fogdweller » Sat Oct 16, 2010 12:22 pm

Dr. S. , I am looking for follow-up treatment to angioplasty I recieved September 27, 2010. It was in So. Cal. and that is about 11 hours drive from my home.

I suspect restenosis. Original effects faded after about a week, and I am now experiencing greater leg pain and recovery time after exercise is much longer (3 days instead of 1/2 day.) I still hve sore and stiff neck which may or may not be related. I am interested in following up.

My question: what do you suggest? Doppler? MRV? Venogram? If in order (e.g. MRV and only if it shows a problem, venogram.)?

Is it likely that the stiff neck is related? I had verly sore jugulars after angioplasty; they wer stretched as mluch as they could.
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Postby Squeakycat » Sat Oct 16, 2010 12:23 pm

drsclafani wrote:i think i am almost ready...but finding neurologists to partner with has been challenging.

Don't you already have a neurological partner in each patient's neurologist?

They may not think much of CCSVI, but if you provide them with full information about the procedure as far as their patient and ask for their cooperation in administering the MSQLI, I would be surprised if most neurologists would not cooperate rather than fire their patient.

Since the main question is whether treating CCSVI has benefit to people with MS, by cooperating using a neurology-blessed tool such as the MSQLI, they can help us all get an answer to that question sooner rather than later.
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Postby NZer1 » Sat Oct 16, 2010 12:29 pm

This is a rather large post that I believe has allot of answers to the differences in CCSVI treatment outcomes. At present we are focused on Vascular involvement in MS and need to understand that Vascular involvement is only part of the picture. The Vascular system interlinks with many systems and its link to the CNS is where we need more focus and understanding.
Dr. S can you pass this on to as many people as you can in your search for answers and Supporters please. It could even be the way Neurologists re-enter the quest for answers in MS. If for instance Neuro's can see a place for themselves in the Vascular involvement in MS, there will be many wanting to be 'on board' with the new direction (reconnecting their blockages to current knowledge).
I am also of the view that Dr. Zamboni and also others involved with MRI type studies will salivate at this insight by Dr. Flanagan, which is in alignment with Prof. Schelling and others from the good old days in research of MS.
Enjoy, Nigel.

Posted on September 22, 2010 by uprightdoctor
The term CCSVI implies there is insufficient capacity in the venous drainage system to sufficiently drain the brain. The source of the CCSVI is currently attributed to stenosis in distant jugular and thoracic veins that cause backups in the brain. While I believe that many cases are in fact caused by an insufficiency in drainage capacity, I don’t believe the vast majority of these cases are due to stenosis in jugular and thoracic veins.

Instead, I believe the insufficiency in most cases lies in less than perfect drainage designs of the brain inside the skull. The case on the left is supposedly caused by stenosis of the left internal jugular vein in front of the first and second cervial vertebral of the upper cervical spine. The problem is that many people are simply born with variations in design such as significantly smaller size in one of the transverse sinus to sigmoid sinus to internal jugular vein routes inside the skull. You can see the major drainage routes of the brain in the previous post. As an aside, the white you see in the scan are the spaces and chambers of the brain filled with water for cushioning and protection. The large chambers in the middle of the brain are where the water is produced.

It doesn’t matter though whether it is due to stenosis in the jugular and thoracic veins or a case of inherent insufficiency due to design problems. The good news is that in either case, regardless of where the insufficiency is found, the liberation procedure most likely works by acting like a siphon to assist in draining the backup in the brain. But knowing the precise location of the insufficiency could influence the decision as to where to do the angioplasty or to place the stents to be the most effective in future operations.

In this regard, I believe that the vast majority of cases of venous drainage problems in the brain, however, are not caused by insufficient drainage capacity. In contrast to insufficiency, I believe, most cases of venous drainage problems in the brain are due to chronic craniocervical venous back pressure or CCVBP, which is acquired through trauma, aging and degenerative conditions of the cervical spine. There is plenty of physical anthropological forensic evidence to support my theory which can be seen in normal, pathological and artificially deformed skulls. Further anthropological studies should be done. I discuss the topic thoroughly in my book in the chapter called “Acute Versus Chronic Back Pressure.” There are several scenarios that can cause CCVBP.

The brainstem passes through the foramen magnum in the base of the skull. The base of the skull in humans is bent, which puts the foramen magnum directy beneath a large portion of the mass of the brain and brainstem. This puts the brainstem in a very precarious position in humans perched above the foramen magnum below it, and beneath a large portion of the mass of the brain above and bearing down on it. In this regard, a significant portion of the drainage system of the brain is found on the base of the skull near and in the foramen magnum making it especially susceptible to compression.

The Cisterns, Brain Flotation and Chiari

To keep it in proper position the brainstem floats in a water jacket. The water around the brainstem and cerebellum near the base of the brain is contained in several large collapsible wells called cisterns. Because of the way this particular brain scan was done, in contrast to the preceding image, in the image above the cisterns are the shadows surrounding the brainstem and cerebellum that are filled with water. It’s the complete opposite of the other image where the water is white. As in the preceding image, the shadows in the middle of the brain and in the cerebellum are the chambers of the brain called ventricles. The ventricles are connected to the cisterns but that’s another topic.

The cisterns are large dilations in the middle space of the protective coverings of the brain called the meninges. The space inside the protective coverings is called the subarachnoid space. The cisterns are part of the subarachnoid spaces that contain cerebrospinal fluid (CSF) and surround and protect the brainstem and cerebellum from banging into the hard bones of the base of the skull. More importantly, they protect the brainstem and cerebellum from sinking into the foramen magnum, which is called a pressure conus or a Chiari malformation.

The shadow you see beneath the frontal lobe is the notch in the base of the skull for the pituitary gland. The crossing of the optic nerves lies just above the notch. Additionally, there is another important cistern that lies beneath the frontal lobe of the brain. It’s job is to protect the optic nerves from compression by the forebrain against the base of the skull. Compression of the optic nerve is most likely one of the primary causes of optic neurtitis, which I will discuss further in future posts.

Getting back to the brainstem, a Chiari malformation can cause catastrophic consequences. Among other things, besides compressing the cord and potentially depressing all vital functions in the body, it can also block both venous blood cerebrospinal fluid pathways that pass through the foramen magnum and into the spinal cord at this point.

The Occiput and Drainage Routes

Let’s forget about CSF for now and just focus on the venous outlets as they pertain to CCSVI. The sketches below are of the occipital bone which forms a large portion of the rear part of the base of the skull. It is also contains the attachment points for the upper cervical spine to the skull.

The sketch below is of the inside of the occipital bone. The transverse sinus, the internal occipital protuberance and occipital sinus inside the occipital bone are like dry river beds. The dural sinus veins of the brain channeled these courses into the bone just like a river cuts through earth and rock. The transverse sinus drainage routes head for the jugular veins. You can see the jugular notch which forms part of the jugular foramen.

Lower down, the occipital sinus system in the middle flows into the lowest drainage veins in the brain, which I called the basement veins. The best basement veins used by humans tend to be located in or near the foramen magnum. Two important outlets often used are the hypoglossal and condyloid canals. You can see the condyloid canal on the left. Notice how close it is to the jugular outlet.

In addition to the vertebral vein connections, these outlets also contain important cranial nerves. One particular cranial nerve is called the hypoglossal nerve that goes to the tongue. Another cranial nerve is called the vagus nerve. Vagus means a wanderer like a vagabond. It called the wanderer because it wanders out from the brainstem to every organ in the chest and abdominal cavities and plays an important role in their function and regulation. Rubbing the carotid sinus to the side of the Adam’s apple for example will cause a vasovagal response that lowers blood pressure.

Chiari Conditions, CCSVI and Nerve Compression

Chiari conditions can compress these and other cranial nerves just like the optic nerve mentioned above. Among other things, compression of the hypoglossal nerve can cause slurred speach. Compression of the vagus nerve can cause nausea, vomiting and feelings of fainting. Higher up in cranial vault, compression of the optic nerve causes pain and blindness. Among other things, nerves do not like compression. Picture hitting your not so “funny” elbow bone and recall what that feels like. It’s like pressing on your eyeball or pinching your skin. It hurts. Nerves are meant to be highly sensitive. It’s there job to be sensitive. That’s why the brain is surrounded by water to protect it from compression against the hard walls of the cranial vault as well as from itself.

The hypoglossal and condyloid canals exit the skull near the condyles on the bottom of the base of the skull. The condyles are large kidney shaped knuckle type joints that link the skull to the first cervical vertebra called atlas or C1.

The Upper Cervial Connection to Chiari and CCSVI

The ridges and circles you see on the sketch are for the attachment of the neck and special upper cervical muscles. I will be discussing misalignments of the upper cervical spine so it is important to understand the relationship of the atlas vertebra in the upper cervical spine to the jugular foramen and the hypoglossal and condyloid canal outlets. As you can see in the sketches above, they are all located close to the atlas vertebra. The transverse process of atlas extends out toward the jugular notch. Because of this close arrangement it only takes micro plastic miniscule misalignment type strains to cause compression of the soft tissues surrounding the openings in the base of the skull and subsequent back pressure against their veins that can have a major impact on fluid mechanics in the brain.

Back pressure against the veins of the brain near the base of the skull can cause venous congestion called edema inside the brain. It can also decrease the passive CSF production pressure gradient used during upright posture for brain support. This would cause a decrease in CSF volume in the cisterns thus raising the risk of a pressure conus or Chiari type conditon. Chiari conditions in turn further plug the foramen magnum and consequently the hypoglossal and condyloid canals further complicating problems with back pressure and venous backups. They also trap CSF in the cisterns and ventricles, but again, that’s another story.

I will be discussing the arterial arrangement of the posterior blood supply to the brain in future posts. I will also be covering misalignments in the upper cervical spine. After you understand the arrangement of these arteries and veins it will be easy to see how small misalignments in the upper cervical spine can have a major impact on the health of the brain. They can also affect the spinal cord, but we aren’t even close to covering issues related to the cord at this juncture. The brain is complicated enough for now.
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Postby Cece » Sat Oct 16, 2010 12:35 pm

I have also been wondering what happens if the jugulars are cleared but an azygos stenosis is missed. Would the jugular stenoses, before they were cleared, have been holding back the traffic a bit? With them cleared, would the traffic jam at the missed azygos stenosis actually be worse than it had been to start?
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Postby NZer1 » Sat Oct 16, 2010 12:43 pm

In addition to Squeakycats (Hi Ed) note I think that it would be extremely important to involve the Neurological Specialty in this way. As we said when designing the survey there are many poor surveys used in the past, and we have used 'their' survey to hopefully stop 'them' from discrediting results.
If there is any issues with the form of surveying the 'right' team of people are there to work on improving the shortfalls, we need to drag them onside how ever we can. Getting their support to redesign or invent, rather than us/you.
As well as that, to find a prexisting survey that we have not known of as yet. :lol:
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