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EJC wrote:

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?"

helenaz wrote: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

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.

drsclafani wrote:it is too early to tell whether this new round of treatments will lead to a successful clinical outcome.

drsclafani wrote:the lessons learned are
[...]
4. IVUS is really important in discovering sites of valvular stenosis.

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.

drsclafani wrote:SECOND LEFT INTERNAL JUGULAR VENOGRAM


THIRD LEFT JUGULAR VENOGRAM

NZer1 wrote:Cece imagine what would be learned from Dr Zamboni's collar testing!

Before, during and also after tests over time...............

drsclafani wrote:

EJC wrote: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?"

still working on this. If you dont mind, i think it will be better to wait until after the ISNVD meeeting in February. There is much new material to be presented.

Anonymoose wrote: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?