CureOrBust wrote:NZer1 wrote:CureOrBust wrote:I have had two treatments in Australia. After these two, I went and saw Dr Thibault and his sonographer for a follow up, and they could not find any evidence of CCSVI. I was then treated by Dr S in Brooklyn, and he did find evidence using the ultrasound, and also more than one location to treat. NB I am a non responder.
When I go to see Paul this is the sort of info I need to be telling him. He is in favour of IVUS and there isn't interest from the IR's, so its a problem for us all at the end of the day.
The areas that Sal found may not have been detectable with Doppler, eg azygos. Where were the areas Sal found using ultrasound Cure?
Sal are you able to help in this, I want to give Paul the benefit of your experience, even if he doesn't contact you for what ever reason to ask for help!
If Paul doesn't get this feed back nothing will change!
Dr Sclafani, please feel free to provide Nigel the information regarding the locations found by Ultrasound and those identified by IVUS. Its good to hear he is now interested in IVUS, in my treatment. I remember the last time I saw him I explained to him what it was. He hadn't heard of it, at least not as IVUS. I should really set up another appointment for a scan.
From memory, I had no treatments of the Azygos. I do remember the ballooning in my Jugulars. It hurt!
Lety wrote:hello to everyone here in the forum and in particular to Prof. Sclafani, I am new here but read you for a long time (I'm sorry my English is not so good, I'm from Germany, hope you understand me anyway).
Prof. Sclafani, as you know I'm interested in a treatment, I am plagued by uncertainties, unfortunately, that's why I could not decide yet.
Can you please tell me how high the risk of complications from a stent is (you had cases in which stents were used and it still came to restenosis?)
Then you have to take blood thinners for life?
Is it according to your experience that problems with legs, bladder, bowel are associated with Problem to the Azygosvein?
Thank you in advance for your answer.
CureOrBust wrote:A little off topic, but have you been in contact with anyone (or yourself?) performing CCSVI treatments for Lyme? This web page says that they present with 3-4 of Zamboni's criteria; compared to our measly 2.
Cece wrote:CureOrBust wrote:A little off topic, but have you been in contact with anyone (or yourself?) performing CCSVI treatments for Lyme? This web page says that they present with 3-4 of Zamboni's criteria; compared to our measly 2.Do you think he's likely to publish on this? I'm not familiar with who Dr. Klinghardt is.•There are 5 parameters that are looked at during a CCSVI evaluation. In MS, 2 of 5 are often observed. In Lyme, it has been closer to 4 of 5 and in autism, it is often 5 of 5. The best Lyme patient thus far was 3 of 5. Lyme patients, on average, test worse than MS patients.
NZer1 wrote:Dr S I am not sure if I have suggested this before,
I think with the talk on CPn and Lyme and the coincidence of CCSVI that having bloods done as part of your work up, pre PTA, may be a way to confront the restenosis/vascular infections that is found in some people and also to get a balanced picture on 'issues' that may get across the BBB, due to reflux, that will need attending to in order to address the symptoms of those invaders, as well as dealing with the standard IVUS findings at PTA?
There is also the issue of some Labs consistently coming back with negatives to contend with, quote from Dr Paul Thibault;
"Why there is so much variance in Cpn serology results is probably due to sourcing of the reagents, but I haven't enquired into that at this stage."
dlynn wrote:Dr. Sclafani,
When stenting the renal vein, does the patient receive "conscious sedation" as in CCSVI procedure?
And do you enter the femoral vein?
If I recall correctly, you addressed this topic several pages back, but I can't find it.
Cece wrote:Lol! She was also in attendance at the CCSVI Patient Day last year. Rock stars, Montel, Dr. Sclafani, Wheelchair Kamikaze...rather a celebrity-packed event!CureOrBust wrote:A certain Australian female singer was played and Dr S let us all in a small crush he had on her. At the time I didn't know it, but by unfortunate chance, she also has MS now. And only a few months ago a TV programme they showed here a story of her travelling to Brooklyn for CCSVI treatment.I found bilateral stenosis of the J1 segment of each internal jugular vein. My records show that there were immobile valves causing about 60-70% stenosis. There was also hypoplasia of the ascending lumbar vein. 18 and 20mm balloons were used requiring 13-15 atmospheres.
non-responder? perhaps. but perhaps the valves just will not stay open. perhaps surgery or stenting would have a better chance.
Have you seen any association between the percentage of stenosis and whether or not the stenosis stays open in the long-term?
Previously another doctor suggested that the best chance at success is on the first procedure. (Obviously this would not hold true for any stenoses that were missed on that first procedure.) But that made me wonder if the stenosis is at its highest grade or most resistant on that first procedure, and if that would mean the localized pressure on the stenosis would be higher?
Conversely a higher-grade stenosis would mean more residual valve material and more of a chance to restenose due to that. It would be nice to be able to predict restenosis, even roughly.in my experience narrowing of the venogram is caused in decreasing order of frequency by
1. Valve immobility at least 85%
2. muscular compression
5. C2 bony compression
6. prior occlusion
#1, 3, 4, and 6 would require an IR or vascular surgeon to treat, if treatable. #5 bony compression gets a lot of discussion here at TiMS but I see you ranked #2 muscular compression as being more frequent. Solutions previously brainstormed were using botox to completely relax the muscle or trying neck stretching/massage/heat. Would you term these compressions to be 'secondary CCSVI'?
NZer1 wrote:I've been thinking that the Placebo effect and Fight or flee fits in this paradym. Intracellular infection is the most probable likelihood of feeling ok when things are not. Drugs, spinal alignments, vascular improvements because of PTA cannot make this difference in a 'moment'! Hope does!
gibbledygook wrote:Dear Professor Sclafani,
I am relieved to report that my ultrasound scans of both jugulars and the left renal vein showed no signs of thrombosis and flow seemed good everywhere except the left jugular where the bony transverse process is likely causing compression of the stent and reducing flow significantly. The radiologist also said that he could see no evidence of valves in either jugular vein. Should I be worried that the valves have disappeared?
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