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?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?).
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.) ?1eye wrote:Cece:
You may be jumping to contusions calling CCSVI the primary cause of 'MS'.
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.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.
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.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.
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.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
Nunzio, i think it is all about familiarity and experience.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
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 convincedprairiegirl 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.
). Thanks for your conviction and continuing efforts-- much appreciated![/quote] ACUTE adjective : having a sudden onset, sharp rise, and short courseakaheather 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
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 symptomsCece wrote: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?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.
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 muchWhat 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.
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.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.
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 neurologistsmrhodes40 wrote:Hi Dr Sclafanithe 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
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
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.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?
bobLyon wrote:Dr Sclafani,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.
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
