DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby Anonymoose » Tue Jan 15, 2013 5:44 pm

Hi Dr. Sclafani,

Thank you for reaching out to us greenies. :) I've got a question for you.

Can you in any way substantiate or disprove the suspicion that CCSVI angioplasty renders improvement in MS patients by reducing neurovascular contact in the medulla region between veins, the rostral ventrolateral medulla, vagus, glossopharyngeal, and vestibulocochlear nerves?
Last edited by Anonymoose on Tue Jan 29, 2013 7:04 pm, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby HappyPoet » Sun Jan 20, 2013 11:32 am

Hi Dr. Sclafani,

Hope you're feeling well and haven't caught the flu.

Your questionnaire attachment that I have in email can't be opened. Could one be snail-mailed to me so you can have a thorough update?

I've decided to have the AO chiro Atlas/Axis adjustment tomorrow because: (1) I think it's best if my head is on straight for when the orthopedic neurosurgeon takes his own MRI and X-ray images next week, (2) It's the fastest way to get some CSF and blood to flow more properly, and (3) The adjustment won't worsen any other cervical problems, e.g., bone spurs, stenoses, etc.

What procedure do you think I should do after the adjustment: Cervical spinal surgery or CCSVI PTA?

Thx again!
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Jan 20, 2013 1:30 pm

HappyPoet wrote:Hi Dr. Sclafani,

Hope you're feeling well and haven't caught the flu.

Your questionnaire attachment that I have in email can't be opened. Could one be snail-mailed to me so you can have a thorough update?

I've decided to have the AO chiro Atlas/Axis adjustment tomorrow because: (1) I think it's best if my head is on straight for when the orthopedic neurosurgeon takes his own MRI and X-ray images next week, (2) It's the fastest way to get some CSF and blood to flow more properly, and (3) The adjustment won't worsen any other cervical problems, e.g., bone spurs, stenoses, etc.

What procedure do you think I should do after the adjustment: Cervical spinal surgery or CCSVI PTA?

Thx again!

There is no right answer based on evidence so
i will give some pros and cons of having cervical spine surgery first
PRO
alterations of blood flow that are corrected by the surgery will be eliminated as a concern during ccsvi treatment
assuming surgery goes well, then getting structural abnormalities permanently fixed first will eliminate them as a concern during the ccsvi treatment
get the higher risk procedure out of the way before the safer ccsvi treatment
CONS
if metal hardware is used, it may obstruct the visualization of the veins
if you have muscular spasms as a result, it may compress the veins
if you are on anticoagulation for a long time afterwards, it will delay ccsvi treatment for a long time
you may be unable to rotate your neck or flex it as part of the ccsvi procedure

and i will give some pros and cons of having ccsvi procedure first
PRO
ccsvi may show muscular and osseous caused stenoses before the surgery. might that help plan the surgery?
ccsvi treatment will improve venous outflow, improve circulation that may reduce cerebral hypoperfusion risks of surgery and anesthesia
ccsvi recovery period is shorter (one month of anticoagulation and a week wait for first ultrasound) and both procedures will be finished sooner than if surgery is done first
CON
complications of ccsvi (uncommon but certainly a possibility) may delay surgery
surgeon unfamiliar with ccsvi may not want to do the surgery


if i think about it longer i will likely come up with more but this for now

DrS
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Jan 20, 2013 1:33 pm

Robnl wrote:Doc,

How plausible is it that valves are stuck/damaged by bacteria and virus?

I read about a small study that suggests a protein, cytokine, to be the cause of vein problems. Because a higher percentage of cytokines were found in the jugulars in MS-patients than in healthy persons
As far as i know, cytokines are the transporters of T-cells and only created by specific cells, so i suppose there are also more cytokines in the veins in my toes..(as my immune system is pretty active).

Regards,

Robert

robert, i think that ccsvi in most patients with MS is likely congenital. The wall is not thickened and the tissue is quite stiff. The appearance is different from those i have seen who have lymes for example.

valvular stenosis is definitely caused by infections, however. it is possible that a congenital venous valvular stenosis may become secondarily infected but not in most PwMS.

opinon, only
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Re: DrSclafani answers some questions

Postby Cece » Sun Jan 20, 2013 6:15 pm

http://www.sirmeeting.org/index.cfm?do= ... Ev&ev=3557
Tue, 4/16: 1:30 PM - 3:00 PM
0621
Workshop
WK 21
Ernest N. Morial Convention Center
Room: 394
CME Credits: 1.5
This workshop will use a case-based interactive format to expose participants to Chronic Cerebrospinal Venous Insufficiency. CCSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty. The workshop speakers will describe clinical presentations, explain their pre-procedural evaluations and preparations and elaborate on the criteria they use to decide which patients might benefit from the procedure. Each presenter will illustrate and explain the techniques that they use to image and treat obstructions and define the end points of their treatments. Finally they will discuss follow-up schema. The types of cases discussed will include the following: Routine uncomplicated cases that illustrate the key components of each speaker's techniques; cases that reveal nuances in technique of each speaker; misdiagnoses, technical errors and complications; "re-do" and "bailout" procedures.
Objective
Upon completion of the session, the learner should be able to:
1.Describe the pathology and pathophysiology, and clinical presentation of CCSVI
2. Describe the various screening, diagnostic and surveillance approaches to CCSVI
3. Recognize the venographic appearances of CCSVI and formulate a strategy for their detection
4. Develop a coherent and effective treatment strategy
5. Recognize, reduce and treat complications of treatment
Coordinator
Salvatore Sclafani, MD, FSIR, SUNY Health Science At Brooklyn

I hope there is strong attendance at this.
No mention of MS in the description.
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Re: DrSclafani answers some questions

Postby HappyPoet » Mon Jan 21, 2013 8:30 am

Thank you, DrS, you've given me much to consider, more than I thought there would be. Will keep you updated.
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Re: DrSclafani answers some questions

Postby EJC » Fri Jan 25, 2013 12:03 pm

drsclafani wrote:
EJC wrote:Dr S.

I follow this thread, despite not understand a reasonably large amount if it, I do try.

The fact you're here and spend the time discussing this subject in such detail with your patients and anyone else wanting to ask questions is simply outstanding, like you haven't got enough on your plate already. What I'm trying to find though is an overview of your thoughts. Not particularly just medical detail, but how you feel about where you are with CCSVI and where CCSVI is with MS patients.

Do you feel you understand CCSVI more than ever or as you've delved deeper into the subject are you still raising more questions than answers?

When you see a new patient do you feel a CCSVI procedure stands a good chance of helping them?

My wife had CCSVI treatment in Scotland in Dec 2010 and had very promising results (particularly eyesight improvements) which gradually regressed over the next 9-12 months. In Dec 2011 she had jaw realignment work in London which I'm documenting on this forum, with fantastic results.

Each treatment/procedure had a direct effect on different symptoms.

CCSVI returned warmth to my wifes hands and feet, reduced cog fog and provided an instant and substantial improvement in eyesight. Much of this regressed.

Jaw realignment eradicated debilitating neuralgia in her left arm, hand leg and foot. It also has reduced substantially the amount of fatigue she suffered from a daily "battery" life of awake hours of 6-7 hours to a near normal 12-14 hours. Rather than any sign of these regressing they are continuing to improve as time passes, to a degree that phyio and physical rehabilitation has begun to get her back on her feet and more mobile (EDSS reached 6.5 but now starting to improve).

As a layman I look at these results and see two treatments offering relief of two clear sets of symptoms. These are the questions that run through my mind.

1. Was my wife under treated for CCSVI (quite rightly at the time) as we were in the early stages of the development of the treatment two years ago?

2. Have we actually found two things my wife needed treating for but gone about it in the wrong order?

3. Is there any connection at all between skeletal misalignment/TMJ disorders and CCSVI? Or have we simply discovered my wife has two separate ailments providing symptoms currently known to medicine as MS?

4. Once treatment for My wifes TMJ problem are complete would she benefit from a further CCSVI procedure based on the initial improvements of the first procedure?

I'm not actually sure I even expect an answer, I'm typing this more to share my thoughts rather than look for something definitive. But I would really like to know where you feel you are at the moment with CCSVI, globally. In laymans terms.

TIA.


That is a great question. The answer would be very complex, and require quite a bit of thought. So a pat five line answer won"t do it. Let me sleep on this one for a while. please pose the question at the new year. I think that will be a fitting time to look back. Since i do not sleep very much, i will need that much time to formulate my reply.


Well, it's January. I know you've covered a few of the topics in my questions above but I wondered if you've now managed to sleep on it for a while and come up with a global answer to "Where are with CCSVI right now Dr S?"
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Re: DrSclafani answers some questions

Postby NZer1 » Fri Jan 25, 2013 12:21 pm

Thanks EJC it has reminded of something I thought of the other day,

If 30% of PwMS are responders to PTA with good outcomes what have we learned?

If 30% of PwMS respond to Antibiotic Protocols with good outcomes what are we learning?

If MRI's are showing that the Grey Matter lesions are more common than first believed what are we learning?

If PwMS have less Blood Flow through their Brain than 'Normals' what are we learning?

If Blood is refluxing/Back jetting into the Brain what are we learning?

If CNS Lesions are changing/moving on MRI's seen by monthly scanning what are we learning?

If CSF Flow is challenged/poor in PwMS what are we learning?

If CCSVI is found in many de-generative diseases what are we learning?

If MS is a disease of exclusion and a PwMS is found to either improve their health or found to have another disease dx-ed they are told they didn't have MS, so what are we learning?

If Diet effects the disease progress of MS what are we learning?

If MS is not an Auto-immune Disease as previously assumed what have we learned?

If we are learning what is it we have learned?

Keep smilin'
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Re: DrSclafani answers some questions

Postby helenaz » Fri Jan 25, 2013 1:43 pm

Hi,

I am writing from Poland, i am here first time. I have a question to Dr Sclafani and everybody else, does exist natural treatment which works similar to ccsvi surgery? maybe some herbs or something else? thanks for answers, Luke
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Re: DrSclafani answers some questions

Postby Cece » Fri Jan 25, 2013 2:07 pm

drsclafani wrote:cece
i am close to completing a very interesting case study that i will share shortly
DrS

I am interested. :)

And welcome to the thread, Luke!
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Re: DrSclafani answers some questions

Postby CureOrBust » Fri Jan 25, 2013 9:18 pm

helenaz wrote:I have a question to Dr Sclafani and everybody else, does exist natural treatment which works similar to ccsvi surgery? maybe some herbs or something else?
Luke, you may get a better response by posting this same question in the Natural Approach forum. And by the way, welcome.

Some of the "Natural" things I have tried are B3 and Picamilon. But let me be clear, these have not been recommended by any physician (including Dr Sclafani, of whom I am a treated patient). I do not know of any published research showing they are in any way equivalent to surgery, so are not prescribed by Dr's. Although Picamilon is supposedly prescribed in Russia for "chronic insufficiency of cerebral blood flow"; which I would guess is on the artery side, not venous.
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Re: DrSclafani answers some questions

Postby helenaz » Sat Jan 26, 2013 2:38 am

CureOrBust thanks for answer. I will find out about it, and i will be waiting for response from dr. sclafani.
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Re: DrSclafani answers some questions

Postby Flashover81 » Sat Jan 26, 2013 1:22 pm

Hi Dr. S. I am the father of a 16 almost 17 year old son who presented with ataxia and nystagmus at age 14 almost 15. Diagnosed initially with ADEM, had MRI at 6 months looked good leisions starting to go away "leisions were prdominately Periventricular". Second MRI showed a new leision so he was tagged with MS. He has had no other episodes since the first one almost 3 years ago.

He is not on any DMD. We have been trying to eat healthy and taking supplements D3 5000IU a day and Protandim. I can't say if this works or not it can't hurt.

The only thing abnormal my son has is Angiodema. It can swell his lip to twice it's size or swell his eyes shut. When he swells it looks like he was in the worst fight of his life lol. I feel this is caused allergies because we treat it with Claritin. But it just seems maybe in his case there might be a correlation there.

Have you treated or heard of PWMS having Angiodema?

Thanks Jimmy.
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Jan 26, 2013 6:35 pm

Flashover81 wrote:Hi Dr. S. I am the father of a 16 almost 17 year old son who presented with ataxia and nystagmus at age 14 almost 15. Diagnosed initially with ADEM, had MRI at 6 months looked good leisions starting to go away "leisions were prdominately Periventricular". Second MRI showed a new leision so he was tagged with MS. He has had no other episodes since the first one almost 3 years ago.

He is not on any DMD. We have been trying to eat healthy and taking supplements D3 5000IU a day and Protandim. I can't say if this works or not it can't hurt.

The only thing abnormal my son has is Angiodema. It can swell his lip to twice it's size or swell his eyes shut. When he swells it looks like he was in the worst fight of his life lol. I feel this is caused allergies because we treat it with Claritin. But it just seems maybe in his case there might be a correlation there.

Have you treated or heard of PWMS having Angiodema?

Thanks Jimmy.



sorry i will answer all outstanding questions tomorrow

s
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Jan 27, 2013 11:17 pm

Cece wrote:
drsclafani wrote:cece
i am close to completing a very interesting case study that i will share shortly
DrS

I am interested. :)

And welcome to the thread, Luke!


Welcome Luke. Cece as promised:\


The patient is a 41 year old woman american of asian background who was diagnosed with relapsing remitting multiple sclerosis at the age of 26, but her symptoms began two years earlier at the age of 24. Her last relapse was in August 2010, which occurred five months after completion of 36 treatments with Tysabri. About five months after that treatment, she developed back weakness and lost movement in both legs. She was treated with steroids at that time and her spine strength improved, but her legs did not regain strength. She states that her symptoms include cognitive, motor, sensory, and autonomic abnormalities.

In Spring 2010 she became the second patient of an early adopter of interventional treatment of ccssvi

FIRST LEFT INTERNAL JUGULAR VENOGRAM
Image


Left image: catheterization of the left internal jugular vein was difficult and contrast study at its orifice does not show the vessel. The image on the right is the left vertebral vein. Since the study was called normal, it is possible that this injection of the vertebral vein may have been misinterpreted as a normal internal jugular vein.

FIRST RIGHT INTERNAL JUGULAR VENOGRAM
Image

This was interpreted as normal and no intervention was performed.

The left image is an injection below the the right internal jugular valve. The black arrow points to the location of the funnel of the stenosis of the vaalve. The orange arrows show dilatation of the area below the valve caused by pressure elevations as the flow goes through the obstructed valve, very much like the pressure of water in a hose increases when you put your finger over the end of the hose.

the image on the right shows the dilatation of of the vein below the stenosis. the pink arrow points to a large anterior jugular vein that is bridging the obstruction of the jugular valve. This vein should not be visualized so prominently in the absence of an obstruction.

-----------------------------------------------------------

After reviewing her images, subsequently, the interventionalist tried a second procedure in the Fall of 2010. She agreed to a second catheterization.

SECOND RIGHT INTERNAL JUGULAR VENOGRAM

Image

on the repeat venogram the findings mentioned above were recognized and balloon angioplasty. Look how the inflated balloon is about the same size as the vein itself. I would think that this is likely going to be too small a balloon. You can see that the stenosis was still present on the image after angioplasty (on the RIGHT). No further angioplasty was done.

SECOND LEFT INTERNAL JUGULAR VENOGRAM
Image

On this venogram of the left IJV the interventionalist finally gets the catheter across the stenotic valve. Stenosis is now seen. It was treated but there were no images of the venoplasty on the patient's CD.

SECOND AZYGOS VENOGRAM
Image

I havent shown the first azygous venogram because it was also not on the patient's CD.
This second azygos venogram shows reflux down the azygos vein (DOWNWARD YELLOW ARROW) and down the hemiazygos vein (DOWNWARD RED ARROW). Also there is enlargement and reflux in the accessory Hemiazygos vein (UPWARD RED ARROW). This could be a hemodynamic manifestation of obstruction or high flow. Perhaps there is a stenosis in the azygos arch. (WHITE ARROWS) An angioplasty was performed in the azygos vein but it was unclear where that angioplasty was performed. No definite site of obstruction was determined so i think that angioplasty of the entire azygos vein was performed.

_____________________________________________

She had symptomatic improvement after this venoplasty. Sleep was better, vision was clearer, cognition and memory were better. The left hand and arm and both legs became stronger, voice improved. These improvementsi lasted about one week. A followup ultrasound done one week after treatment showed that the left jugular vein had thrombosed. All improvements vanished and disability increased about three weeks after treatment. She was anticoagulated.

___________________________________________

In 2011 she underwent a third procedure by different interventionalist.

THIRD LEFT JUGULAR VENOGRAM
Image

the interventionalist was able to engage the orifice of the left internal jugular vein but it appears that he did not attempt recanalization of what he thought was a small vein. I think that this was unfortunate because it turned out to be the last opportunity to attempt restoration of flow through this vein.

THIRD AZYGOS VENOGRAM
Image

The azygos vein seems occluded at this time. It is shrunken, narrrowed and irregular in 2012 compared to 2010. The ascending portion does not fill like previously. Azygos arch stenosis is still present. Reflux into the accessory hemiazygous vein is still also seen.


THIRD RIGHT INTERNAL JUGULAR VENOGRAM
Image

This is a composite of the treatments of the right internal jugular vein by both interventionalists. Neither attempt to dilate this valvular stenosis was successful because neither actually showed opening of the valve on their confirmatory venogram after venoplasty. A larger balloon was likely necessary to get this stuck valve open.

The patient did not obtain noticeable improvements after this round of treatment.

_______________________________________
I consulted with this patient in early January. She presented to me with paralysis, ataxia, spasticity, chronic fatigue as her major complaints. Examination was consistent with extensive pyramidal tract as well as cerebellar disease. She underwent an ultrasound of the jugular veins and deep cerebral veins on January 10, 2013, which revealed reflux in the upright and supine positions in the right internal jugular vein and in the deep cerebral veins, as well as episodes of no flow in the right internal jugular vein. B-mode abnormalities including thickened, immobile, elongated valves and other intraluminal echogenic foci were also noted on the right side. The left internal jugular vein was thrombosed and there were large collaterals in the left side of the neck as well as prominent left thyroid veins.

FOURTH RIGHT INTERNAL JUGULAR VEIN VENOGRAPHY
Image

As you can see on the images on the left, valvular stenosis persists. I think you will be interested to see that while two angoplasties have been performed, NO stenosis of the surrounding vein has taken place. I really do not think that stenosis of the dilated segment occurs in this disease as often as in other diseases of veins. Those stenosis are usually the result of surrounding scar tissue which is not generally present in CCSVI. I think that the pathology in CCSVI is NOT similar to other causes of stenosis. Unless gross over expansion of the vein occurs, or perhaps, if prolonged dilatations are performed, stenosis of the surrounding vein is not a common or expected feature of ccsvi treatment.

I used a 14 mm balloon to perform angioplasty and the post angioplasty image looks better but still valvular stenosis remains. IVUS confirmed that the valve remained stiff and fixed. Therefore I used a 16 mm balloon and after this the vein looked wide open both on IVUS and venography.

I tried to access the left internal jugular vein in the neck but this was not possible.

FOURTH AZYGOS VENOGRAPHY
Image

These images show a lot of reflux into the intercostal veins and other collaterals. I decided to leave the naturally recanalzed ascending azygos alone. I did not think I could make it much better and actually risked making things worse. I do not know whether this is a correct decision but better to come back another time than risk making things worse.

FIRST RENAL VENOGRAM
Image

This is a really interesting finding. The left renal vein is lower than it usually enters the inferior vena cava. I thought that it was a posterior nutcracker. This is a less common varant, in which the left renal vein runs behind the abdominal aorta and the compression is between the aorta and the vertebral column. The usual compression is between the aorta and the mesenteric artery. Either way the treatment is the same.

There is reflux into the distal hemiaygous vein through the hemiazygo-renal trunk. Given the disease in the azygous itself, I imagine there is venous congestion of the vertebral plexus of veins and congestion in the spinal cord. A patient with a occlusive disease of both the azygos and the left internal jugular vein cannot adapt to the augmentation of cerebrospinal venous circulation. n the absence of jugular and azygous outflow obstructions, This renal venous obstruction really congests the spine.

it is too early to tell whether this new round of treatments will lead to a successful clinical outcome. the lessons learned are
1. balloon size seems to m atter. It is also apparent that even minor dilstations can be helpful but insufficient dilatation may lead to early loss of improvements
2. occlusion of the vein are challenging. It is difficult to predict which veins weill occlude. Certainly patients wth hpercoagulaable states, very small dural sinuses, poor flow through the upper jugular vein, and large collaterals that may continue to siphon venous blood throubh a collateral are at risk.
3. attempts are recanalization
4. IVUS is really important in discovering sites of valvular stenosis.
5. it does not appear that repeated angioplasties do not necessarily result in stenosis of the vein but rather to restenosis of the valve alone.
Nutcracker is common in patients with MS.
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