This Is MS Multiple Sclerosis Community: Knowledge & Support

Must face the truth. These numbers don't lie. The Euphoria of 2009-11, over the theory of CCSVI as a cause of MS is the past. Please check, how many readers is here now? Many of them are still here only because of Prof. Sclafani, who became active member of this forum and main driving forces after the IVUS surgery. If not him, these participants of this forum I suppose would be fewer.
Here are 11214 registered members, and how many is active now? 9!!!"In total there are 9 users online :: 3 registered and 6 hidden" Where are the others?
Then, on my polish forum there were 471 on 22. Feb. 2012 (http://www.ccsvi-ms.pl/forum/index.php? ... 9d2ab4bbe3), though it is only Polish. I have a preview of the IP. I know who is online. There are diet, TV, Reuters, Novartis, Bayer, etc. .. Patients are sadly disappointed by the results of treatment by venography, I would not repeat where been performed. The Hope is Professor Sclafani, and other clinics undertaking the challenge of treatments using IVUS diagnostic techniques, the statistics of improve the patients health condition will give the real picture. Cooperation clinics that perform operations IVUS technology gives us a satisfactory statistics, unfortunately there are only few performing the IVUS technique surgery, just because this is not profitable.Usualy clinics are accustomed to earn for 1 hour surgery operation same amount as for 3-4 hours long surgery on IVUS. They can't charge more then the best professionals on this field in the world (prof. Sclafani), in addition in countries, where lower medical staff cost less. Congratulations prof. Sclafani! That price will set the bar high and will expose these who want to help and those who want to earn. Well, that tied the close cooperation and exchange of data between clinics that will work with Professor Sclafani. They will compare the database of treatment method in Medicover venography and IVUS technique. Then we'll see what do say: the neurologists. pharmaceutical cartels. The Polish Ministry of Health also waiting for such data. All such motions in the Ministry of Health, I have not yet informed the forum. I can only tell that one of the vice ministers of health is already released. I knew about his release much earlier than he .....
Regards
Rici

That is not completely true. Most of us are still reading this forum. We simply do not have much to say, but we all are waiting for news. Trials are on their way and that is the important part.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

The forum seems less active than it was, but a lot of people come here for information and support prior to having the procedure, and then it either works for them or not. We're past the damburst when US clinics first started publicly offering the procedure back in 2010.

There are also good alternatives including CCSVI Locator and the many facebook pages. I like the discussion format here at TiMS, I think it lends itself to depth of interaction and perusing of the research, but the facebook pages are especially good for breadth of reaching many people.

Certainly Dr. Sclafani has done much for us here at TiMS, and it is enjoyable to have his participation here, two years after his first posts. There are many reasons to congratulate Dr. Sclafani! I would congratulate him for recognizing CCSVI as an area of interest back in 2009, being the first east coast doctor in the US to treat CCSVI, not allowing his hospital to roadblock his interest in CCSVI, going above and beyond to educate patients, pursuing patient-friendly policies at his clinic, refining his techniques, striving for precision and thoroughness....the list goes on and on, that is not a complete list.

Yes, you totally forgot those killer eyebrows! I will be in to see Dr S next Thursday and I look forward to personally corroborating all of the excellent things said about him.

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

can keep Novartis, Bayer, etc.



Professor Sclafani? Wow, learn something new everyday. i did not know you were a Prof.

i would also like to add my congratulations Dr. S.

to quote you "not bad for an IR".

Indeed, congratulations Professor Sclafani!

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Rici
Has the CCSVI treatment helped you? How about to surgery to reduce the size of your jugular vein?

Dave

I know I used to post a lot. My daughter had just been diagnosed (Aug2010) and treated and there was lots to learn and share. She was treated 1 month after her MS diagnosis. A real early intervention which freed her of 12 symptoms and if it wasn't for her MRI's you would never know she has MS now 18 + month later.

Just recently she was seen by the Nurse Practitioner at her neurologist's office. Mostly done as a milestone measurement. The RN asked Meg if she wanted a referral for an Opthamologist? Megan answered," Why would I want that?" The nurse explained that this was a frequent request from her MS patients. Meg then told her that her vision had gotten much better after her venoplasty. The RN checked her vision....tested bilaterally 20/15!

So its not that she never has any MS symptoms, rarely she gets a numb pinkie and it can be annoying. She tries to eat right, stay hydrated and get exercise regularly. She tries to avoid extreme stress. She takes several vitamins and suppliments.

So we come and read. Don't post very often, but we await all the new clinical trial results and research milestones.

We just stay behind the scenes.

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

I come and read to keep up on the latest information. The only time I sign in is when I am planning on posting a comment, does the system record the number of lurkers?

Hi Dave
After the reduction of the diameter of my neck vein I could not heal myself in this location after taking Fingolimod (Gilenya). The whole operated location was always swollen. From the extreme situation of the diameter of this vein (JIV) of 32 mm it was reduced to 4 mm. Nobody knew to this moment how long the swollen status would last. After Fingolimod one could not heal! Therefore I had a stent implanted in this position http://www.ccsvi-ms.pl/foto/stent_04.jpg And then it was completely ok! I did not have MS anymore! But then after taking Fingolimod I had a heavy infection of my urinary tract, and for this reason I got an inflammation of the kidney pelvis (Pyleum), which then provoked a complete block of the renal vein (vena lumbalis ascendens), which provides the blood away from the spinal cord. This vein can only professionally be healed and unblocked with the help of IVUS apparatus. I wait exactly for this kind of operation in Medicover Hospital Warsaw.

Regards
Rici

Best wishes with your upcoming operation, Rici.
A renal vein stenosis can be visualized on regular phlebography xrays. It is treated by angioplasty. The use of ivus would allow for precise measurements and pressure gradients but it is quite possible to do the procedure without ivus.

Rici
Thank you for sharing your story. I'm sorry things have been so difficult for you. I wish you the very best and hope that you will soon be free of all your symptoms.

Dave

I thank you all for the best wishes for my next operation/treatment.
I have a good hope. The radiologist, who will perform the treatment in Medicover is a good medical doctor with studies even in Oxford, England. He was schooled in New York by the best professional in the world in this matter, Prof. Sclafani. And in addition to this in my case a tomographic computer analysis has been performed on my body and the results of the MRI of the spinal cord and of the brain were checked by Dr. Schelling. The tomographic test was done according to the instructions of Dr. Schelling who consulted himself in my case with this Warsaw doctor during his last visit here in Warsaw http://www.youtube.com/watch?v=huZhmS_PzBQ and during a later visit. Only now after this visit the IVUS apparatus for CCSVI operations is present here at Medicover Hospital in Warsaw.
Best regards
Rici