This Is MS Multiple Sclerosis Knowledge & Support Community

rettahb wrote: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?).

You can't get them out once they're in, not without major surgery...is it possible what she had done was a ballooning within the stent to squish the intimal hyperplasia there?

edited to add: nope, I read her update, and they were able to remove the old stents, so like what was said above they must not have fused yet?

I'm nervous about taking from her blog with out her permission.....

"- The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons. Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. "

Sounds like they were replaced to me.
~r

FYI : I have just mailed with Denise a few hours ago because I copied&pasted her progress aswell and placed it here in a thread. She said she was too busy to be reading here on TIMS but she didn't mind me posting her stuff so I am pretty sure she won't mind us discussing her case either...

1eye wrote:Cece:

You may be jumping to contusions calling CCSVI the primary cause of 'MS'.

Ok, if it isn't the cause of MS, what is it the cause of ? Have you ever heard of any doctor, prior to a year ago, that came up with a diagnosis for any problem and said it was 'because you have CCSVI'. Is there any other 'disease' that it might be causing ? Since skeptics (and others) want it to be it's own entity, what specifically are the symptoms of having CCSVI (and ONLY CCSVI - not in combination with MS, etc.) ?
I'm pretty sure if it was it's own entity, it would have been 'discovered' decades ago (probably right around the time that MS was discovered).

IMHO they don't want to link them together because they want neuro's to feel that their education was not a waste, and they don't have the gonads to admit what they were teaching wasn't correct (even though that's all that was known). As far as they knew it was, but they need to play the CYA game so they don't get sued. I'm pretty sure some incompetent doctor somewhere in North America will sue before to long, it's just a matter of time.

I am just amazed at how much politics and political correctness comes into play on the whole CCSVI subject.

larmo, I agree...I have a personal belief that CCSVI is the primary cause of M.S. I also believe that successful treatment of CCSVI is a cure to M.S. (defining cure as the arresting of the disease at whatever stage of EDSS you are at and allowing some hope of improvement). I do however want to make sure that I don't express my beliefs as if they're facts, because they certainly aren't yet.

North52 wrote: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.

Yes, north, I think that there is a risk of restenosis whenever one dilates a vein. That restenosis might be more difficult to treat as any scar tissue or intimal hyperplasia might result in more elastic recoil after angioplaty. Nonetheless treatment in the only reported trial demonstrated that about half the patients had no problems out to eighteen months. Others will require angioplasty repeated. Not ideal. nonetheless restenosis is better than untreated stenosis, (opinion). So why not stents to begin and reduce restenosis? NO EVIDENCE.

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.

This study was reviewing stenosis of the subclavian and the inominate veins, bigger more central veins. The pathology is intimal hyperplasia in dialysis, the pathology in ms is a congenital malformation of valves and smaller veins. the patients with MS are younger, and are phsiologically healthier (except for MS) that patients with chronic renal failure, whose metabolic state is totally deranged.

Patients had repeat venography because they had a worsened symptomatic state. so only worsenings were studied

Actually the patients in this study were asymptomatic. patients with MS, well, have MS.

So while i do think that angioplasty increases potential for restenosis, we are treating for a reason and should address the restenosis when it occurs. Hopefully new stents will be designed that are better options by the time they are needed.

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

So sad you must have a black market in treatment. Steathily seeking out doctors (hopefully of quality) but with no standards of care agreed upon or measure of outcome defined. I hope all the closeted doctors can come out soon and share their experiences as I do.

Yes, i think that electrophysiological data would be most interesting. How it fits is part of this era of discovery. Too bad you cant discover very much in the dark,

Nunzio wrote:Dear Dr. Sclafani,
I was talking with a friend IR and I was introducing him to CCSVI. He mentioned he would do the procedure through the brachial vein unless a stent was needed.
Thinking about it seems reasonable and you do not have to go through the heart to reach the jugular vein. I know everybody that does the procedure uses the inguinal vein so could you explain to me the disadvantages of using the vein in the arm as an access point.
Thanks again
Nunzio

Nunzio, i think it is all about familiarity and experience.

I would have a difficult time doing it from the brachial vein into the jugular veins which is not the simplest catheterization, especially when there are obstructions of the orifices of the jugular veins.

catheterization is all about vectors of force and directability of the catheter. When I go into the jugulars from the femoral, i am pushing pretty close to straight up into the right and left jugulars. That is the most direct and therefore most accurate technique of controlling a catheter. Going from the arm would require manipulating at ninety degrees to the arm arm axis. This maneuver is more difficult to be precise.

Manipulating through the heart is not really difficult. It is done all the time for many indications without much reported complication.

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.

I hope that you are up and running soon, and that your study will further the understanding of the association of CCSVI and MS for others (even though you are already convinced ). Thanks for your conviction and continuing efforts-- much appreciated![/quote]

your trust means a lot to me

.

akaheather wrote: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

ACUTE adjective : having a sudden onset, sharp rise, and short course

CONGESTIVE :adjective: an excessive accumulation especially of blood

PLETHORA: noun: a bodily condition characterized by an excess of blood and marked by turgescence and a reddish complexion

If you had it, you would know....your head would swell and you would look like an eggplant: anyone walking around like that.?

Purple feet we are all familiar with, but anyone seen someone with this constellation in MS?

BTW. this is a good link for a medical dictionary. your government dollars at work in a good way!
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

Cece wrote:

1eye wrote: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?

yes, of course, Dr. Valsamis, and hopefully other neurologists will be evaluating objective signs of MS as well as subjective symptomatic complaints before all procedures. at defined times after treatment, and when needed because of worsening symptoms

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.

we all must be careful to jump to quickly in blind faith that we have found the cure. One small pilot study does not prove much

1eye wrote: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.

no offense taken, 1eye. But i dont think that this is a generalists problem. This is the work of multiple highly skilled specialists working together. I am so impressed by the team that dr zamboni has put together. He is just so far ahead of anyone else.

mrhodes40 wrote:

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

I think it will be difficult to do a true randomized prospective double blinded study because of ethical and safety issues. Lets just keep thinking collectively and come up with the best COMPROMISE. It has to be something that neurologists will accept unless we want interventional radiologists to become neurologists

frodo wrote:Hello again, Dr. Sclafani,

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?

We have to accept the fact that there is VERY LITTLE medical literature on CCSVI. in this age of discovery doctors havent even had the time to publish the venographic findings in any systematic way. That is going to be my first paper, a general review of the imaging findings. Once I have IRB approval, I will ask for permission to publish the results of my first 20 patient with a focus on the IVUS/venographic correlation. We need a lot more of this.

But closeted IRs must hide.

its truly the DARK AGES coexisting with an AGE OF DISCOVERY.

only you guys could have this happen

Lyon wrote:

drsclafani 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.

Dr Sclafani,
Since that very issue seems to be among the major sources of of contention, might addressing that factor be something the IRB could/is going to insist on?

Bob

bob
what i said was that abnormal ultrasound and mrvenography are not absolute requirements to undergo venography.

we will be doing those tests as part of our irb as a matter of course and screening
we will get venographic data on each patient and this gold standard will be used to determine the incidence of CCSVI among MSers

Perhaps the IRB will require this. but that is not what we applied for.