This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. S., Thank you so much for hanging in there for/with us. I hope you get back to plumbing ASAP!!!!!!

Question: Are the other doctors in NY learning from your experiences? Is there a sharing of information between those who hope to start/continue testing/treating for CCSVI in the NY and surrounding states? It seems that you've already learned so much in the short time you had to do this and it would be so wonderful if the other NY docs starting this learned from your experience. More pointedly...do you-all chat on the phone comparing notes...getting advice?

Also, if you know of a doctor getting involved in this who is from the eastern OH or western PA area...could you pm me? I hope to stay 'local' but don't know where to start....

Thank you!

loobie, thanks for the thoughts

i have now been at this for two and a half hours. and need to take a break.

after breakfast i will work further on IRB refinements and finish a chapter for a trauma textbook

its raining in new york, so i can live with it.

have a great day

Thanks for the message doc.

Another poster on here recently reported improvement of symptoms by doing Valsalva. Could this be a dangerous thing to do repeatedly? What's your take on Valsalva as therapy?

Dr. Sclafani,

Do you think it is really possible to do a truly blinded study of balloon angioplasty in MS patients? I see a number of obstacles that may be difficult to overcome. Ballooned patients seem to feel the ballooning procedure which would decrease the effectiveness of blinding. Deep consious sedation could potentially alleviate this problem, but I suspect this is probably not ethical as it may increase the procedural risk. Another way around it would be to balloon a normal portion of the vein in controls so they feel the procedure, but again I suspect this is not ethical.

Another problem I forsee is that sham patients would want to know if they were sham. They could always get a doppler done on their own to see if they still have any decreased flow. I suspect you will gradually lose your control group over time. One answer to this problem would be to to do a short term study, eg 3 months and look at variables that respond immediately to angio such as fatigue, cognition and perhaps immediate improvement in strength, vision etc. By doing a short term study, you can offer the sham group balloon angio after the 3 months and use them as your treatment arm. This way anyone entering the study would be offered ballooning within a 3 month period. If results are convicing and are shown to be safe, for eg in reduction of fatigue, that may provide sufficient evidence for the medical community to condone this procedure.

Curious to hear your thoughts on this.

North

Good morning Dr. S.

I've asked Dr. Bonn about this but chooses at this point to only work with patients already dx with MS. But I'd like to ask you your opinion...

My daughter, who is 20 and in college, is experiencing MS type symptoms. It is not the first time. When she was 14 she was also experiencing things, fatigue, pain and clumsiness among some others. At 14, we went to a great pediatric neuro at UMDNJ and he ran tests and found no lesions, therefore no MS. Now, she's older, seen me go through tougher times and she's scared. For 6 months we've been talking about he getting tested, and the sooner the better since she would be offered a better chance at a very normal life with treatment. Now, more than ever considering CCSVI. I've given her a neuro's name in Philly where she is, but part of me feels like why should we have to start with that route? It took me 3 years of pushing my Drs telling them something was wrong to even get a symptom for them to look at MS. Then it took 6 months to finally have MS dx once they started looking for it. Once I can actually get her in the door with a Dr, I don't want to have her go through 6 months to get an MS dx and then however long it might take to get her seen by someone for CCSVI.

Any suggestions on moving forward to go straight for the CCSVI testing and deal with what might be the true problem in the first place?

As a mother, I want her to have her best chance at never dealing with any of the things that I have. She's scared, and I think it is keeping her from moving forward to get any dx. Especially knowing the extent of what I have gone through.

If the doppler ultrasound or MRV indicated CCSVI, could a doctor even do a venogram or angioplasty on a child, absent the m.s. symptoms to justify it?

You are right, though, the logjam of current m.s. patients need treatment first. But I will be seeking diagnosis or treatment for my kids whenever such a time comes that it's seekable. I have three kids and one of them, my four-year-old, I think may have some symptoms...I myself had definite symptoms by age nine.

It is wonderful to think of you bringing this up to other doctors and researchers, spreading those seeds of interest...I had never known to love or not love academic medicine, but now I love it....

(Back to reading...I have a lot of catch-up to do...)

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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

To CeCe's point, I was dx at 32 but can trace MS back to my early 20's. I am not the only family member with MS, my cousin (our mothers are sisters) has been dx when he was about 20. I also have a son, almost 14, no signs with him...

Hi there Dr. Sclafani. I am curious about the comments made regarding hypercoaguable blood and the potential for an effect on malformed veins. Here is my experience, for what it's worth. I saw Dr. Dake for testing in December. Before seeing him I had blood work including a d-dimer.

When my primary care doctor got the results of the d-dimer, he called me up immediately, very concerned, and made me go right to the ER because he said the d-dimer was so high he thought I had an embolism or blood clot. After a thorough workup, I was declared clot-free, although I was definitely having an MS flare-up.

Dr. Dake told me he was following d-dimer in people. I have also seen papers that showed a correlation between high d-dimer and MS flare-ups.

Aside from telling you this anecdote, I do have questions. My doctor wanted me to take daily aspirin because he was still concerned about the high d-dimer. So is it a problem to be taking daily aspirin if you're going to have a venogram? When would you have to stop daily aspirin to make sure it wouldn't affect any invasive procedure? What do you think about tracking d-dimer -- do you use this test?

Beyond this stuff, the issue dearest to my heart is my children. I have three children -- all born in May, the dreaded risk month -- and I would do anything to keep them from having the disability and the going through the things I have gone through in my life. My heart is in my throat every time one of them tells me anything that makes me think of MS.

So with so many of us having children, maybe we can harness our collective love for our families and our collaborative abilities and come up with something we can actually do about this? I can't think anymore, but I can offer my gratitude and my experience. Anything we can do to help.

Germany again....thanks for your answers and right now I guess we will follows 2 roads, 1 checking out Frabkfurt( expierienced) and on the other hand trying to "educate" doctors with an open mind here in the area to understand and learn about CCSVI.
And another quesiotn, a vascular surgeant ( here in the area who is willing at least to talk to us) who read a bit about CCSVI said he might be able to do the doppler on the extracranial vens but not the intracranial ones, since he does not have the appropriate equipment. Again, me being so not a doctor but "legal", was wondering can one scan with a ultrasound the intracranial venes?
And even so I am a lwayer I would never go after you;-)) and hope your "legal eagles" will also appreciate what you are doing:-))

Dear Dr S:

When you return to work on CCSVI in a month or so, after approval, will you be doing testing only or treatments at the same time too?

Thank you so much for sharing with us your insights and expertise.
You have not only a great mind, but also a wonderful spirit. Truly, you are an angel.

Smiles,
Sofia

I remember you mentioning this before...is it that the vertebral veins get too small to do the balloon angioplasty on them?

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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

I appreciate Almost Clever's thorough and, no doubt, time-consuming index of Dr Sclafani's medical knowledge that he has shared with us. I think it has been almost as important that he's shared his personal philosophy and humor with us. Am ALMOST tempted to write an index of everything he's written that has made me smile and even laugh out loud! And the title would be "Laughter as the Best Medicine (while we're waiting!)"....

I think you have found yourself in an unusual position...at the right place at the right time with the right skills and quite obviously the right heart...

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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

A true outlier.

That comment about JFK and altruism gave me goosebumps (and still is).

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My name is not really Johnson. MSed up since 1993

Dr. S. What say you

Zivadinov's study @ Buffalo 16 MS patients vs. 8 normal controls. (3T SWI) Showed iron deposition in 100% MSrs and 0% controls. "All 16 MS patients fulfilled the diagnosis of CCSVI", Angiology

http://www.ncbi.nlm.nih.gov/pubmed/20351672

I understand you now Dr. S you my friend remind me of a Spanish Gentlemen trying to explain to his peers and to the king of Spain that the world isn't FLAT but that its ROUND Lol

You my friend will be in the HISTORY BOOKS AS WELL!!!!!!!!!!


Christopher Columbus
“By prevailing over all obstacles and distractions, one may unfailingly arrive at his chosen goal or destination.