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Re: have most been treated?
Posted: Thu Jan 26, 2012 6:07 pm
by Cece
cheerleader wrote: This is a lay persons' webpage. The real action is now at the research level, and as Bob mentioned, that takes time for results. Those of us at the beginning really thought that treatment would be much less complicated...but as the malformations are explored and IRs work on fine tuning protocols, we are learning how much more complex cerebrospinal insufficiency is. Jeff continues to do really well. He's been very fortunate.
cheer
I love Dr. Fox's research, especially coming from a neurologist, and a respected one.
As for real action, there is a letter-writing campaign afoot! I need to copy over the information into a new thread. CCSVI is practically a campaign issue in Canada, and here in the US it is largely unknown, and Karen Golden Oronte aims to change that.
Re: have most been treated?
Posted: Thu Jan 26, 2012 7:58 pm
by drsclafani
JCB wrote:I have been treated multiple times. I still browse the site, but am not very active. I am PPMS and while I have more energy, more alert, less heat intolerance; my right side has continued to slowly progress negatively. I am not even sure that I am progessing, but I am feeling better but not getting stronger, if that makes sense. I think the more energy with lack of immediate improvement combine to add to the frustration. My left IJV has only been open 3 months, so I am still waiting.
I know I said I would be happy if the progression just stopped, but I want it all back.
I can imagine the frustration.
i think that symptoms such as fatigue, temperature intolerance, imbalance, cog fog and memory problems are the most likely to improve. I can imagine someone who has more energy and less fatigue being very frustrated by not being able to move that unfatigued leg.
Some of the symptoms are of MS and instant cures for demyelinated nerves may be improssible expectations.
DrS
Re: have most been treated?
Posted: Thu Jan 26, 2012 8:00 pm
by drsclafani
esta wrote:I too have been treated twice, and going again in a month for my third treatment this time with Dr. Arata.
I improved extremely well the first time but it did not last long, second time I received a stent and didn't have much improvement but this time I believe will be better as he works on the valves which I believe are the key.
I too have PPMS but since my operations I have not progressed too much, and some improvements are wonderful and have stayed with me such as no more cog fog, cold purple feet are always beautifully warm, less headaches, spasms, and slurred speech.
this all could be from LDN and herbal remedies but I tend to believe I have improved the quality of my Life, however small these improvements seem to be, they are everything to me. If, this time I only stop the ringing in my ear's and the extreme pain I will be very grateful but like the other writer I want it all because I've had this glorious taste of everything disappearing.
Best to all,
Esta
I keep hearing about how he treats the valves, but please understand that this is neither a secret, an unknown or an ignored concept. I would venture to say that valve dilatation is performed in about 90% of all treatments throughout the world
Good luck with your procedure. Dr Arata is a good man.
Re: have most been treated?
Posted: Fri Jan 27, 2012 7:15 am
by dlynn
I've been treated three times this past year, the third lasting approx.5 mos. I loved having none of the overwhelming fatigue.
I'll have another procedure sometime after the Orlando conference in Feb., I"m praying the I.R.'s will have learned some new ways
of keeping veins (and valves) working properly.
Re: have most been treated?
Posted: Fri Jan 27, 2012 7:19 am
by jimmylegs
re ccsvi, not tested, and not treated.
Re: have most been treated?
Posted: Fri Jan 27, 2012 11:23 am
by munchkin
Tested 2x - u/s partial Zamboni protocol and full Zamboni protocol
Treated 2x - 1st opened both jugulars and ended up with completely occluded lijv and rijv 85% occluded. 2nd treatment to try and open lijv (unsucessful) and ballooned rijv in hopes it would stay open (also unsucessful).
The information on this thread doesn't really help me anymore, as I need stents now to have any kind of normal blood flow. I wasn't a big contributor but a regular reader and made a few comments. This is still a thread I read sometimes but I need different information now. It's a little depressing reading about how bad slow/altered flow is when you don't really have many options.
As my veins occluded the symptoms I suffer from have magnified, I was hoping that this response was placebo
. But, unfortunately it's real. Demanding that this be proven as cause or cure is limiting what could prove to be a very useful treatment for some people.
Re: have most been treated?
Posted: Fri Jan 27, 2012 12:40 pm
by Lyon
My wife was tested at Buffalo with the impression that her situation would be explained to her but as it turned out she wasn't told anything and she hasn't pursued treatment.
Re: have most been treated?
Posted: Fri Jan 27, 2012 12:51 pm
by 1eye
I can't bring myself to base my expectations on my hopes.
Woops, forgot to log in again.. My, it's getting steamy from the cold water being thrown around here vaporizing on contact... My glasses need windshield wipers!
Re: have most been treated?
Posted: Fri Jan 27, 2012 1:16 pm
by 1eye
The lull on this forum, I figure, is partly because people are waiting for guidance to come out of ISNVD. Also, the interface has changed, making it easier to filter. I still get very useful stuff on here. One example is that recent study on oxygen use and concentration in brain venous blood. I don't know enough about the subject but if I did I'd probably buy a copy.
Re: have most been treated?
Posted: Thu Feb 02, 2012 6:05 pm
by fogdweller
I think another reason TIMS is quieter is that there is now a very active Facebook page that many of us follow in lieu of or in addition to the TIMS site. And some of the research we clamoured for is being done, and we are patiently awaiting results.