This Is MS Multiple Sclerosis Community: Knowledge & Support

[larmo]

of course i wear a shirt with a big S on it.........my name really is sclafani

ROTFLMAO

[1eye]

Prairiegirl wrote:

i am not doing my study to determine whether there is an association of ccsvi in patients with MS. I am comfortable with that determination already.

And Cece wrote:

edited to say: I forgot what I wanted to say, which is that the problem is that there is no current treatment for CCSVI, as the crabs are only for the immune-related secondary effects...so the group that draws the no-treatment straw would still be getting no ccsvi treatment.

Part of the hypocrisy of all this foofarah is that anyone says they are not comfortable with the fact/determination that we are trying to fix 'MS' by trying to fix one of, if not the main one, of it's causes. We are. We are also trying to determine why it sometimes makes us worse the way we are doing it. We are also trying to determine best practices given all that is known to date about CCSVI. We are doing it using modern scientific numerical measurements and inductive reasoning.

And if we are lucky we may stumble across or determine scientifically the undisputed cause of both 'MS' and CCSVI. Or we may not.

There has already been a paper published that says there is a genetic link between the two, and identifies it (you could say that conclusion is redundant because we knew they were linked, but we did not know DNA was involved, so what gene it is is new news).

Men and women of considerable learning and influence are trying, on behalf of the 'MS' Society of Canada, and 'MS' victims, to assure that it will at least be possible in Canada to pay and get both testing and treatment for CCSVI.

I believe that, far from trying to control for CCSVI alone (which we will be able to do, presumeably, once we are able to clearly measure it's ill effects), we should be measuring and testing the effect of the treatments we perform on measured 'MS' symptoms. All of them. That's why it's going to take a long time, and be very expensive. Perhaps we should ask each patient treated to donate X dollars or percents or whatever to further CCSVI/'MS' research. Because there may come a day when the best practices are so good and the trials are so expensive and the problems are so hard and the patients so few, that further science will be pure research, left to the Universities. Won't that be a good day?

[akaheather]

Dear Dr. S,
I have googled, but cannot find a clear answer. What exactly is "acute congestive plethora of the head"? What would this look like? How would you find out if you had it? Thanks.

Heather

[Cece]

I believe that, far from trying to control for CCSVI alone (which we will be able to do, presumeably, once we are able to clearly measure it's ill effects), we should be measuring and testing the effect of the treatments we perform on measured 'MS' symptoms.

Well, DrS is paired up with a neurologist...DrSclafani, is the data that the neurologist will be collecting in your study as extensive as 1eye is describing? Will there be a neurologist appointment ahead of time, for baseline and to confirm m.s. diagnosis, and then just one more at a six-month follow-up appointment?

What I meant with what I was saying was that, when you treat with CRABs, those are treating the secondary symptoms of CCSVI (the MS/immunological symptoms) but not the primary cause...so in a long-term study, only one group would get the primary cause treated...and I think the truth is that even breakthroughs take time. I just don't like that truth.

[1eye]

Cece:

You may be jumping to contusions calling CCSVI the primary cause of 'MS'. There still may be something that causes them both. I think it has to do with powered reflux, but it's only speculation. Dr. Zamboni talks about the thoracic pump, and there is always the cardiac pump as well.

Lots of unanswered questions still. I think it's a generalist's multidisciplinary problem. No offense meant, Dr. S.

[mrhodes40]

the problem with a blinded study is how does one keep a patient in the dark about whether they are treated or not. Do we do all procedures under general anesthesia to remove the astute MSer from the equation? Unethical and dangerous). Very difficult. it will take a lot of discussion

Hi Dr Sclafani
thanks so much for your patient responses. I was Dr D's #2 person.

In regards to this issue I would like to point out that none of the top flight MS drugs are double blind, all the stem cell treatments, Hicy, Campath are unblinded. Campath is partially blinded in that a blinded neuro does assessment, but the patient knows (with obvious issues there).

I do not see why such a routine would not work here and for the control people could be given something like beta interferon (as the Campath trial did for control)

I am annoyed big time that what is good for the gander (no placebo) is GREAT and fine when it is the thing "we all agree" is the cause of MS --but it is not permitted for the goose.

Either science is good or it isn't, it can't be good in this trial over here and bad in that one over there if the protocol is the same. If the Camapth trials are good science, great! let's do it that way!

Campath trial click here

[drsclafani]

Then I have had cases where I knew there was a jugular vein from the MRv but it was extremely difficult to get the catheter into it.

This could be evidence that MRVs are useful before the procedure for the extra information and not altogether unnecessary...a question for the research to answer, I suppose.

Yes cece
as i suggested to colleagues, we need a comparaitive intent to treat study. each diagnostic test would be described. each of several investigators would read the evaluation of the test and make a treatment plan based upon that imaging. Then the group would convene to look at all of the imaging and come to consensus of intent to treat. Then compare the results of each test by each proceduralist to the consensus.

This may answer the question as to which test would be relied upon, which woud lead thetreatment that was actually performed and of course assess all plans based upon outcome

our goal should be to find the shortest distance between two points

[drsclafani]

Happy Birthday, Cece! And maybe this goes with the association between MS and May birthdays, but I too am surrounded by May babies -- May 3, 14, 18, 19, 23, in the immediate family!

I am not juts getting sentimental in the thread. I have a query. Dr. Sclafani, is it too far out to think about veins/arteries from cadavers? Or is there a way to grow them from your own tissue?

While not without difficulties, it is possible to transplant veins. Growing veins will ultimately be possible. While i have no experience, short vein grafts may have value

[drsclafani]

Placebo is NO TREATMENT. Call it what it is! (oh, sorry, that's what you *did* call it.) Use something ethical as a control, like current treatments! Then you won't have to run *that* as *another* costly trial, to prove which one is better! Unless they are statistically EXACTLY the SAME, in which case the feeble-minded unfortunate brain-damaged CCSVI victim would have to exercise personal choice, which might be beyond their ability. So the doctor would have to do it for them. And that would be a real tragedy.

Sugar pills are only good for proof (legal) of malingering, to insurance companies, and workman's compensation boards. Leave them there, please. There is no other ethical reason than when the doctor believes, for a medical reason or an educated guess, that there is no problem.

Do you wonder I don't trust these 'MS' neurologists?

<end of placebo rant>

i have not been around long enough to make my own judgment, but it is said that there is a strong patient bias toward improvement after trial, not unanimous but enough to confuse the results. There needs to be a group that thinks it got the treatment but didnt to compare to the group that got the real deal. only by comparing the two groups can we tell how much of the effects was actually due to the treatment.

sometimes the research means well but is not empathic. But science is not empathic, it is raw, unbiased and objective. We need it to sort this out.

i feel your anger and frustration. It is clear to me that you mistrust the medical sciences. when you are on the wrong side of bias, it is infuriating. But who is to say whose bias will ultimately be correct. That is the goal of a trial

[frodo]

Hello again, Dr. Sclafani,

Recently we have made a Doppler at home. Of course, the doctor that performed it found nothing, and we have inscribed in the waiting list of Poland.

Anyway, while we wait, we want to keep on trying to get treatment at home. We have already got an MRV by Dr. Vogl, showing a stenosis, and the doppler at home showing nothing. Now we are trying to get an invasive venogram at home, but the doctor argues that he doesn't know what to look for.

What is expected to be found in an invasive venography? Is there any document or article that describes it?

[shye]

frodo
your instructions link is not working....

[North52]

Dr. Sclafani,

I would like to hear your thoughts on the risk of making an existing stenosis worse in the longterm. This is my major concern about proceeding with angioplasy. Anecdotally, we are seeing and hearing of impressive short term improvements in patients. What happens, however, in those patients that restenose? Do you think there is a significant possibilty that angio could worsen stenoses in the longterm? Although short term prognosis here may be excellent, longterm prognosis in patients may be worse. I know you cannot answer this question definitivley here, but I would appreciate your gut opinion based on your extensive experience.

Here is a link that addressed this issue in asymptomatic central venous stenosis. http://radiology.rsna.org/content/238/3/1051.full.
This study, however, is retrospective and has significant limitations.

I mentioned this in another thread, but I thought I would ask you directly. To obtain immediate objective measures of improvement, have you thought of doing before and after visual evoked potentials and somatosensory potentials? I think this could be very interesting and might help to support the immediate improvments seen in some patients. My neuro-ophthalmologist is sceptical.

I have arranged to have evoked potentials done and will be reporting my results once I get them. I am booked for catheter venogram and possible angio next week somewhere in the USA.

North

[rettahb]

I've been reading Denise M's post stent blog on facebook. She had remarkable results from stent placement...
Before vascular angioplasty:

http://www.youtube.com/watch?v=JO3DnqHJ ... re=channel

After........

http://www.youtube.com/watch?v=KYNhYtVo ... re=channel

and

http://www.youtube.com/watch?v=eNQnMsXx ... re=channel

.......Since then her veins re-colapsed and immediatly she lost what she had gained. Ultimately she went back and had the stents replaced and she is back to regaining her abilities again. ( I did not realize you could get them out once their in?).

Dr.S I guess my question is how do you deal with your patients who need re-balooning? Are you able to see them again? Denise even had stents placed! Are we dealing with moving targets here?

I'm anxious to have the procedure, but hearing these experiences is toning down my desires. There is so much we don't know and understand yet. I wish we were farther along.

Thanks for any responce ahead of time.
xx's ~retta

[L]

.......Since then her veins re-colapsed and immediatly she lost what she had gained. Ultimately she went back and had the stents replaced and she is back to regaining her abilities again. ( I did not realize you could get them out once their in?).

I can't read her Facebook blog. But the jumping video was posted a week ago, so she had the second procedure so soon, who is she seen by? It's impressive!

And stents take a while to get fused to the vein wall. But it sounds as though perhaps it was balloon angioplasty and not stents that she received perhaps?

[rettahb]

No it was stents........ that's why I asked about the "moving target".
She is in Ohio somewhere.