While I continue to work on my CCSVI articles, I wanted to direct your attention to some real-life examples of what is going on in the field.
The forum on ThisIsMS.com is an amazing virtual meeting place for people with MS who want to discuss what is happening in the treatment and research world in a sophisticated, educated way. Any question that you might have about any MS treatment, approved or experimental, can be answered here.
One very timely and incredibly interesting forum thread is the CCSVI Tracking Project. This is a place where people who have actually received treatment for CCSVI have come to report their results. It is fascinating and allows us to hear from actual patients, rather than try to interpret statistics and separate conjecture from fact.
I will ask that if you go there to read these patient stories that you be respectful of what these people are trying to do, which is collect results in one place. If you have questions or don't understand a term, keep looking at other places in the forum, rather than posting your questions in this thread. Please be respectful of these brave people who are sharing their experiences with us.
That said, here is the link: CCSVI Tracking Project.
I want to say a special thank you to all of the people who have shared their stories on that thread. Anyone else who wants to leave a word for these folks can do so in the comment section of this blog (or in another part of the forum).
Thank You Julie for posting on CCSVI here. As current patient and forum member that has gone through the treatment for CCSVI I can honestly say the ThisIsMS is the place were you will find out first hand what is developing in real time. I strongly recommend that anyone new to our forum use the (search this site) option for most of their questions concerning CCSVI and other topics as well. It is very likely been already discussed and will bring you up to date on the subject. Please feel free to ask new questions. This is totally all about unbiased communication to bring these thoughts forward and into discovery of new pieces of the big MS puzzle. Take your time and enjoy the many posts on all of the subjects presented. Were a friendly lot with a sense of humor. Peace and Health to all, Mark
Hi! This came in my google news alerts, thanks for pointing to the patient reports at ThisIsMs! Talk of science and theories is one thing, but hearing from patients is another story that doesn’t make the journals. We all have a unique story to share, and are happy to share it with our fellow MS’ers.
Thank you very much for posting this! I echo Mark W.’s sentiments. Sincerely, Mark M. (CureIous at ThisIsMs)
Glad you posted this Julie. I helped design the tracking thread, similar to how I did the LDN survey back in 2004. Sharing patient based evidence is one more way we can take control of our own medical fate. I feel a big responsisbility to do this, as one of only 60 patients to have received tretment for CCSVI at Stanford.
Thank you for sharing this thread, it was really informative and I must admit, made me jealous ;o) but good for them. I wish I had access to a medical team like Stanford. and Just a note for you, Julie – I’ve never posted on your blog before however when you show up in my inbox I always read everything you have to say. Thank you for sharing with the MS community.
For the last two days, I am unable to connect to http://www.thisisms.com/ftopict-8346.html. Can u suggest what is wrong?
A well wisher
You will not be able to find many sites anymore as google and the government shut down about 10 million last week. Also, fyi, now they will not allow supplements to be called supplements legally.
Where are these people getting their CCSVI treatment?
I watched a video today of a gentlman walking up the stairs pre and post liberation. It was amazing! I even made a comment, but can’t remember where I accessed it.
If anyone has seen this “video” and know how I can review it again, PLEASE let me know! Thank You
Can someone let me know abt Medanat Hospital in India.
I have heard a lot abt their team and have also seen their website which is very impressive.
I plan to go there in July
i know a very good doctor in egypt who makes a ccsvi treatment for fewer cost if you wany help just reply me and i am gonna give you all information needed
Crista, it is called Medanta – The Medicity hospital.I have been there and with my personal experience I can tell you that it is one of the best in hospitals. Just for it , you will be in good hands.
I am a patient suffering from MS and going soon to India for treatment. I hope things will work for me. I already contacted the doctors and things seem to be going on the right track. Good Luck for you all.
If you need any information about the treatment, email me on:
allen.gayer@gmail.com
HOW SOONCAN I GET THE SURGERY DONE IN CANADA PLEASE .
I KNOW IT IS IN SACTEWAN.
I am to have my studies done today for my MS which I have had diagnosed in 1995. As many of my MS friends out there understand, we had it usually a long time before the doctors diagnosed us.
I go today for my CCSVI pre-testing at Excel Heart Center. I am so excited………..I will become liberated soon. I will check back in to let you know how the procedure goes. I have researched many places to go and have the procedure done. The results of Excel Heart Center are nothing short of miracles………
If you have any query about MS or CCSVI, Please write to surgeryindia@ymail.com
A new private clinic is opened for CCSVI Treatment in Bucharest Romania. The name of the clinic is Dalin Medical AngioClinic
How much does it cost?
i know a doctor in egypt called doctor sameh fathy who made ccsvi treatment for 7000us$ if u want more information reply i am gonna help u
I had the liberation treatment Feb 23, 2011 in New Dehli, India. I went with the medical tour group,Liberation Gateway. It was a wonderful experience. My fatigue has
disappeared. Improved color vision and much less cog fog.
My limp has improved very little and my left hand is still numb. Hoping for continued improvement. It has only been
two months.
I just had the Liberation Treatment in Warsaw, a great clinic called Ameds.
For anyone interested, they are amazing and I really reccomend them!
Ameds.co is their website!
I have received a few quotes from many CCSVI clinics/providers and the best packaged offer (checked with their patients) is from TraveloMed.
TraveloMed together with Medicover Hospital offer the best CCSVI Liberation treatment package offer.
You can check them out here:
http://www.ccsvi.travelomed.com/
i just made ccsvi treatment in egypt it was a very wonderful experience if any one want any information about the clinic or price just contact me on salma22002@hotmail.com
http://www.facebook.com/drsamehfathy
Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike “differentiated” cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus.
Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials.http://www.neurosurgeonindia.org/
how long till it will be approved in U.S