Posted: Mon Aug 30, 2010 3:00 pm
Thank you vivave for you input - much appreciated.
Drury
Drury
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it is a plausible explanation.2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?
rosegirl, sorry but i am only in nyc for two days then off to chinaRosegirl wrote:it is a plausible explanation.2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?
Hi, it's Rosegirl. I was the one who asked about rapid, intermittent symptoms. Dr. Sclafani, I sent you a CD with images from my venogram so maybe you can comment based upon them. It's been eight weeks since the procedure and, other than feet that are no longer purple, there are no changes.
Although sounds interesting, I'll be in the outer banks. Possibly videotaping Earl hit the outer banks... Eekdrsclafani wrote:anyone going to be in guangzhou to video this speech? Geekgirl?
On youtube, drbartman user posted my videos... If this doesn't work, send me a private message...Donnchadh wrote:Has the video from Dr. Sclafani's first conference ever been made available? I only a have dial-up Internet connection, so it's not feasible to download multi-MB files.
Anyone have a disk? I would be glad to cover expenses.
Donnchadh
Dear Dr Sclafani, thank you for the reply,drsclafani wrote: dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms
Absolutely not!nicknewf wrote:Dr. Sclafani,
Since your symposium, have the physicians who participated started to fall in line around a common treatment protocol? Balloon sizes? Order of treatment? It sounds as if there are many doctors performing the treatments; are most sharing information between each other - or are most people practicing in silos?
Thanks
there are different kinds of swelling and you need to distinguish them, although it might be quite difficult to do so.Zeureka wrote:Dear Dr Sclafani, thanks for being around even if not really being there - hope you still managed to relax a bit during some well-deserved hols this summerdrsclafani wrote:dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms
In fact I was wondering about MTS symptoms - since understand MT is stenosis in left iliac: could this cause only symptoms in the left leg - or could MT cause symptoms in both left and right legs/feet?
And if you mention swollen legs, have a question about perceived and real(+perceived) swelling:
i think that those symptoms sound more like nerve problems instead of vein problems.Could MTS or other stenosed lumbar area veins also cause a symptom such as numbness only with the SENSATION of swelling accompanied by pins&needles (without however a visible swelling of feet/legs)? Thanks a lot for getting a clearer idea on this.
selkieselkie wrote:Dear Dr. Sclafani,
Anti-histimines are often given to MS patients for treatment of nerve pain as well as allergies.
I have both allergies & MS nerve pain and don't want to take drugs like Neurontin.
Since histimines open the veins, but cause terrible symptoms (I experience shingles-like pain), and anti-histimines negate the symptoms but also restrict the veins, my question is,
Is it harmful for people with CCSVI to take anti-histimines? Does this cause even more back up of blood flow?
I take two anti-histimines per day (Zyretec & Allegra) and my pain is still about a level 7 on some days.
I can't do without the drugs, but I'm worried it's causing an even worsening of the blood back-up into my brain?
Can you clarify if my concerns are valid or are these drugs safe for people with CCSVI?
Thank you, Selkie
*****
i do not think that that narrowed veins results in hypertensionkaboodah wrote:Dr. S,
Would blocked or very narrowed veins be the potential cause of high blood pressure? If so, how would someone have normal blood pressure but also have substantially blocked veins? Thanks!
Renae
Vivavie:vivavie wrote:Hello DrS, I finally got my stent unblock (candy wrap stenosis) AND:
70% left jug stenosis: balloon twice 8/10X40mm
50% right jug: balloon 3X (8/10/12X40 mm)
both in the area of prior radiation+ curietherapy and neck dissection from previous tongue cancer.
of course, i havent seen your pictures so it is hard to say much. but the diameter of the balloons used may have been too small. I cannot tell without knowing the measurements of your veins. While Dr sinan is moving toward 18 and 20 mm balloons, your doctor seems to have stayed on the side of smaller balloons, perhaps for safety.He ALSO found a kink/irregularity in my Azygos 8X40mm (not checked in Poland)
It cracked - it poped - it hurt. (He also check MT and lombar =fine)
I was this doc 1st, he was pretty thorough (2 1/2hr) and he felt he did an aggressive job. Nice, competent, entousiast IR.
I was sure this time I was Fully Liberated but NO! Nothing:Pain -fatigue- brain fog are the same. headache increase.
What eludes me is my stent is now clear, how come I don't have the previous improvements I had for 6 weeks (bladder, saliva, bowel, no headache, sleep)? During the 1st procedure they only found a faulty valva.
it is really difficult to answer you without seeing the picture. if your veins are narrowed by radiation, it is likely that stents will be needed. however, remember, i am just a bystander hearing about the work of another plumberWhat should be my next step? Is it possible that the veins did not hold their new shape? How about balloon size? lenght? Would it be a good time to use cutting balloon because those veins must be hardened by radiation?
I am not ready to give up yet! help!
Thank you