thisisalex wrote:So, as you all know, I am not an electrician. And I am not a sound designer.
I am a humble plumber trying to improve your circulation.
Therefore I admit that sonography is not my expertise.
So, I went to the source of this CCSVI, Paolo Zamboni and asked him to advise me. With some editorial license he gave to me to correct the English, here is my correspondence with Dr. Zamboni's response. I will not do this again.
We can discuss further after you read from the general contractor
Dear dr. Sclafani,
It's truly touching for me to read the exchange of letters of two real heros.
Thank you very much for forwarding my topic to Zamboni!!
I enjoyed reading the answer from Zamboni. he is so calm. he has the power of knowledge.
I think this answer is OK, except one statement which was not addressed by dr. Zamboni:dr. Panczel wrote:
...There are other interesting statements in Zamboni's papers. Above the vein occlusion the pressure is elevated, it would be logical for the wall to dilate, but Zamboni describes narrowing of the walls.
i have heard about this from patients, but don't know the reason for this phenomenon.
thank you again
have a nice Sunday,
Also, may I please ask your opinion on what Dr. Galeotti spoke about during last April's CCSVI workshop in Sardegnia: http://www.youtube.com/watch?v=1kP_mx9T ... re=related , he talks about the very complex spinal venous system and mentions the azygos related to problems in several other veins (like the renal vein) (at about 5:00 mns in).
Do you believe this is an area that needs to be explored more and can one maybe oversee problems more easily there ? If I have still have a problem, does it seem like a good place to look at ?
la ringrazio molto !!!
Cece wrote:When Dr. Zamboni says that your IVUS data is urgent, isn't that awesome? Just more acknowledgement that it was a good discovery...we are after all in an age of discovery...wonder what else is out there?
His defense of his criteria seems sound, thank you for looking into this for us.
Your earlier response about the valves was helpful. I had been looking at is as if all the CCSVI issues were malformations in their own right, not that one malformation could then lead to a valve issue as a secondary effect.
I hope too that the time you spend here is extra time for you, that you get something out of it as well (encouragement and support goes both ways?), and that you are able to maintain your other duties and sleep and spend time with loved ones, as needed. I feel, as patients, it is easy to be endlessly needy...sorry about that.
drsclafani wrote:some of the malformations are of the valves themselves. abnormal location, abnormal leaflets, fused leaflets, etc. there are other malformations such as thickend wall and narrowed or atresia (inadequate development) but i think that this is mostly a valve problem
FlashHack wrote:Of the 65 patients in Zamboni's seminal paper 30 had a septum/valve malformation on the right IJV and 28 had one on the left IJV.
PCakes wrote:Hello Dr Sclafani,
Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?
Possible side effects or reactions include headache, dizziness, irregular heartbeat, nausea, warmth, burning sensation, and chest pain
Frank wrote:Dear Dr. Sclafani,
I would like to ask you the following questions:
1. I’m a little concerned about the radiation dose required for the venography. I guess the angioplasty procedure is also done under X-ray, is that correct?
Could you tell how high the overall radiation (diagnosis and treatment) might approximately be – could it be compared to n-number of “usual” X-ray images or do you know about the approx. overall radiation level in the physical unit [Coulomb]?
Is there reason to be concerned about the radiation dose in conjunction with the diagnostic- and surgical procedure?
2. Would you think that 3 Tesla MRV does offer reasonable better diagnostic possibilities in CCSVI than 1.5 Tesla MRV?
3. I know the following question is a somewhat delicate – if you don’t want to comment on it (especially in an open forum) I do understand that, anyway:
In one of your answers you stated that currently there is a periodic exchange of information between a core group of CCSVI researchers including Dr. Vogl from Germany. As I am from Germany he would be my preferred CCSVI contact.
a) Do you know whether Dr. Vogl was trained by Dr. Zamboni – in a talk Dr. Sandy McDonalds from Canada indicated that a proper ultrasound diagnosis would only be possible after one has been shown the relevant techniques in practice.
b) Do you know about the percentage rate at which Dr. Vogl does find relevant venous issues (CCSVI) in people with MS. About how many cases has he evaluated?
c) Some member here on TIMS wrote that Dr. Vogl does not evaluate the azygos vein, do you know if this was true/is still the case. One user also reported that he was examined in the payed CCSVI-program at BNAC and also his azygos was not taken into consideration – how comes?
d) Does Dr. Vogl currently use venogram for diagnosis, does he use IVUS – as you indicated in this thread – IVUS is important to further identify the nature of a narrowing?
e) Does he share your view that the relevant stenosis is the one that is located down in the jugular and upper vein restrictions might just be a consequence rather than the underlying cause?
To be honest, with all these questions I try to figure out whether I would currently be in good hands in Frankfurt – especially in terms of a meticulous diagnosis of CCSVI.
My RRMS has not been that very bad (EDSS about 2.5, DX 2002) and active so I do not feel too hard pressure to find a “solution” right NOW!, which does not mean I feel anyway near comfortable. I try to make the “right” choice…
4. To me it currently seems as though “everyone” diagnosing CCSVI does it in a somewhat different way.
a) Could you guess the time-frame when we are going to have a standardized and largely accepted way to diagnose CCSVI.
b) Though the gold standard in CCSVI diagnosis is said to be venography, it seems to me that most sites rely on Doppler and MRV – how comes?
Thank you so much for your time and efforts. This discussion has helped me a lot with my understanding of CCSVI diagnosis and treatment.
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