This Is MS Multiple Sclerosis Community: Knowledge & Support

i am unwilling to make decisions on zivadinov's paper until it is published and read.

Ceci,
Maybe you feel like a baby because you were defenseless!
I find your story disturbing and I feel really bad for you. I'm glad your friend was with you. You have every right to be upset! I hope you at least have some benefit from the procedure. Take care. Lisa

Ceci,

I am also very sorry for your traumatic experience. You really highlight the difficulties that can happen when in a foreign country for medical care. I imagine the doctor might have meant that everything is confirmed during the venogram itself, not strictly based on prior tests. That's my understanding how Dr. Scaflani too works, from what he's said.

Please continue to pester them for direct answers too, you deserve to have your mind eased. I'm very sorry you went through that.

I am no doctor, with no real medical knowledge, but my understanding is that the only real way to see and be confident of a flow abnormality is via a venogram; ie in the procedure. The doppler and MRV are only useful to help indicate possible locations of abnormalities, which may actually be caused by the flow restriction, and not be the source of the issue itself.

However, I do sympathise with the way you feel you were treated. They are obviously trying to help / perform as many procedures as possible, and therefore are hindered in understanding that this procedure may be the biggest medical treatment in your life. The language barrier would not help in the least, and would make it seem like they treated you as part of a production line. It then would not help you were "shipped" back at the end of production...

I am assuming you wrote to them through email...maybe an actual letter would be more likely to get a response? Or would it be possible to request your medical records from them?

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Hello, Dr. S. I am reading your thread with great interest. My wife is scheduled to have angioplasty done by a local vascular surgeon after a stenosis/collateral was detected in her right and left jugular veins. She has a pretty severe level of disability. She has been asking me to ask you this question which I am directly quoting from her words:

"Have you ever done angioplasty or stenting on an MS patient with this particular leg problem. The problem is this: when I put my feet on the floor the blood rushes to the feet and the legs and does not return. The valves in the legs are not closing/pumping the blood back up. This was shown to me on the doppler when I had my legs scanned as well as my neck. The vascular surgeon said there was nothing wrong with my legs other than the interior muscles were not functioning causing the valves to close. So when I put my feet on the floor and the blood pools, they become splotchy, purple and very painful. My legs only change to normal color when elevated. I don't have any ulcers or varicose veins because I keep them elevated all the time. My legs are numb from the knee down. Have seen and performed liberation on a person with these problems to this degree, and if so what was the outcome?"

I appreciate the time you are taking with MS patients in answering their questions regarding CCSVI. You are helping so many people who are looking to their health care professionals for answers and not getting any.

BTW our local surgeon has been practicing for 30+ years and has only performed the "liberation procedure" on 2 MS patients so far (within the last 6 months).

Thanks again,
Andrew

Dear Dr Sclafani,
I have the images of the catheter venography, but these are big negatives. Do you know a way to make digital images of these negatives? Or should the Hospital have those fotos too as digital images?

Prof. Torsello from the Muenster St. Franzikus Hospital - Germany did the catheter venography and the internal jugular vein and azygos were completely free according to his report.
Prof Torsello had the same approach as you. He did the venogram test and intended to do the treatment at the same time.
He is trying to consult with dr. Zamboni about a possible treatment of the closed left jugular vein, which could not be ballooned.

Dear Dr. S,

I have been diagnosed with Leiden Factor V, a blood clotting problem (as you will obviously know, but TIMS members might not).

My question is: could this be a problem when stents are used in The liberation treatment?

Thanks for your answer.
Inge

This is amazing...thank you for sharing...there has been a push on the forum here to go local, which makes sense if an expensive trip to Poland or India is the alternative, but the trade-off with going local is that you end up being the first CCSVI patient an IR has ever seen.

There is the risk of being underdiagnosed and undertreated, there is the risk of being overdiagnosed and overtreated...and it's all rather moot, in terms of who to choose for a doctor for this, because we are lucky to get an appointment with anyone, local or otherwise, who will take CCSVI seriously.



Can you speak to this at all? What changes have you made, what makes it difficult? The azygous has been a bit of a question mark, what with Zamboni (but no one else) finding a large percentage of stenoses there.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dear Dr Sclafani,

I have two questions for you:

Based on your knowledge of anatomy, CCSVI and its relationship to MS, if a person with MS has untreated CCSVI:

1) Would having chronically stuffy sinuses (for example due to allergies) theoretically increase reflux to the brain, and/or in some other way increase the negative effects of CCSVI?

2) Would being in a head down position, such as hanging upsidedown (using an inversion table) or bending from the waist for long periods of time, (for example to pick things up off the floor or while gardening) be something that should be avoided?

The first question came to me after reading about the affects of holding ones breath (valsalva?) and references to sinuses being one location where CCSVI related abnormalities have been found.

I thought of the second question because in my case, last year I spent four hours sifting through the dirt of a newly rototilled garden on my hands and knees on a very hot summer day, and then developed the symptoms that led to my diagnosis (incredible fatique followed by complete right arm and leg numbness).

Perhaps I am grasping at straws, but given the ratio of people with MS to doctors able to diagnose and treat CCSVI, anything that might help reduce the affects of CCSVI until treatment becomes widely available would be very helpful!

Thank you so much for taking the time to answer our questions. You are the kind of doctor that all doctors should be!

Mary Ann

RRMS DX 6/09

Dear Dr. Sclafani,

I know that you confer with Drs Zamboni, et al, but I wonder if you are open to conferring with other doctors involving themselves in CCSVI interventions. For instance, if I could find an IR, or CV surgeon close to home (BC), who had not a lot of experience, could I suggest they contact you? Would that be an insult to a doctor? I am greatly intrigued by your innovative approach - such as using cutting balloons, etc.

I have the strong sense that you view your relationship with your patients as a partnership, which is how I see it too. I have the arrogant expectation that I can be involved in my own care. I have had a lot of doctors step away, and drop their voices as they talked about my case - so that I could not hear. They seemed greatly annoyed when I asked to be included in the conversation. Perhaps I am just one of those precocious patients who is a pain in the professional posterior?

Thanks again for all of your time here, Doc.

_________________
My name is not really Johnson. MSed up since 1993

Thank you Dr Sclafani, I think it is immensely important and encouraging to know that you and these key CCSVI scientists/experts cooperate and share their experience!

Indeed researching with passion for the same cause and all of you trying to help people with your latest knowledge of research (within the possibilities of the research framework each country permits) !
Thank you!!!

many hospitals can copy your images on to a cd. you should ask. those big negatives are really a drag to look at. At our hospital they disappeared eight years ago

Leiden factor V is a congenital defect that is associated with clotting propensity. I think that this could be a factor with the use of stents, definitely

firstly, there is a learning curve. Things that do not seem so narrow on first look. After consultation with the master, it became clearer to me that i was underestimating narrowing. We usually analyze arterial narrowings but after further discussion it was obvious: that lower pressure vessels are more affected by narrowing of less degree.

Secondly i was told that the vessel wall was stiff and noncompliant (ie, could not distend. So i wanted to prove that and used intravascular ultrasound to prove it. that led to some interesting discoveries about the valves that were interpreted as noncompliant vessel walls.

The azygous finding was quite interesting. We were looking at chest ct scans to understand the variations in the course of the azygous vein. when we studied that we realized that we were not imaging it on catheter venography is an ideal way. We changed the orientation and all of a sudden, we have found abnormal valves in three of the last four patients.

I am looking forward to publishing on this.