Saturday, July 17, 2010

CCSVI Vacation Packages

July 17 2010




I appreciate the recent changes in some of the Face Book groups for CCSVI. Their administrators no longer allow advertising for "Liberation Procedure Vacation Packages". More and more private practice clinics are providing the testing and angioplasty. Unfortunately because of scrutiny and patient overloads, they can't announce their services openly. I would be wary of those who do.


I had my procedure done on June 3rd in the United States. I am not a woman of means or noteworthy. Yet there was no need to fly to India, or Poland. In fact I will return in August for a follow up visit. In addition, I will have the azygous vein checked also to determine if there are any blockages there. My intolerance to heat has not seen improvement and I have spinal lesions. These post treatment issues are beginning to arise as more people are treated. We had no instructional materials because they have yet  to  be been written. That would seem to give credibility to the neurologists and others trying to dissuade us from our journey to liberation. Surely I would be unable to plan a trip to an exotic location for follow up care. Given the funds, I would prefer the French Caribbean or Tahiti, but they aren't providing the service there either!


Until we are given credibility in the media and by the medical community at large, most of us will continue to progress with this disease and suffer unwarranted disability. This is more than sad, it is unconscionable. I know that my quick improvement is not what everyone can expect. One of the PPMS patients treated by my team did not have anything but minimal improvement for six months. Since then he has nearly matched the place I am in now. Patience is not one of my virtues,especially concerning the need to keep doctors names and locations private. Some of the history we are making is not particularly helpful in the here and now. Those who are moving forward will make it possible for so many more. Then there are the others who will be last in line and some will be too disabled to regain as much as they could have were it not for the uninitiated who are adamant on halting the procedure altogether. The light is beginning to dawn, however.


As disappointed as I am in the Multiple Sclerosis Societies, doctors and clinics preying on those excited by this history making procedure, disgust me. There are more than a few of them. I truly hope that everyone is careful and takes into consideration the opinions of those who have been successfully treated. We are in the infancy of this movement. More is being learned and revealed each day. It is literally that swift in coming. The intellectuals and greedy are not the movers and shakers we need. If we need to learn how to raise funds quickly for a useless, toxic drug, they would be the top in their field for a leg up.


There is insufficient supply for the demand as it stands now. Advertising would be superfluous and highly suspicious at this point. Those who can, do. Those who cannot, scam and advertise. This is certainly not the issue to paste the "you get what you pay for" label on.


There is ample evidence that we are beginning to see the writing on the wall for our detractors. They are surprised at our tenacity and taking an offensive posture toward the evidence displayed before the world. MS is not the only disease on the pharmaceutical field. They are in little danger of going into forfeit with their longstanding domination over every other disease or medical condition, yet. That would hold true for the skeptical neurologists of the world as well. Why such driven opposition? Are we really that formidable? Of course not! We are a compilation of fanatic, disabled and cognitively impaired individuals who have nothing in common but this degenerative, life sucking disease. We need to be constrained for our own good.  Maybe we just need a nice  vacation and get over this obsession we have with our miracle cure fantasies. Even on my favorite MS website the words ;cult, fanatics, and hysterical, and obsession have been used to describe those of us who have been sucked in to this 'cure' fantasy. It doesn't matter that they are the people using the term"cure" as a banner. None of us who have actually had the procedure have declared it as such.


Do your homework, make your decision and carry it through wisely.





8 comments:

Unknown said...

This is well thought out and makes a lot of sense...patience is not a strong suit for me.

Judy said...

Very well put. I really so much agree. As a Facebook Group Admin, I've stated plainly that unauthorized advertising will be deleted.

I honestly don't appreciate the posts for charities I know nothing about. If I am going to back a charity or a group helping MSers, I want to know who it is and that they are legitimate.

Unknown said...

With the good,( CCSVI )comes the bad,(those against us) and the ugly (scammers and people making money on from the pain and suffering of others.

jessica forester said...
This comment has been removed by a blog administrator.
jessica forester said...

After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”

Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.

Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.

Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.

Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838

Melissa Lessie said...

Autologous Mesenchymal stem cell transplantation (AMSCT) means that the stem cells are taken from the patient’s own body and are cultured prior to transplantation at various times over an extended period. With the patient as the donor, there is no risk of transplantation leading to cancer as opposed to the risks of transplanting embryonic stem cells. AMSCT is now regularly used in North America for the treatment of Hodgkin’s lymphoma and non-Hodgkin’s lymphoma as well as other diseases with remarkable results including cure for many patients. “If it works for some diseases, is safe and well-tolerated by the patient, then why not other diseases? We believe that Multiple Sclerosis can now be added to that list.” says Gupte.
In the past four years Gupte has performed over 1500 autologous stem cell transplantations for many types of neuro-degenerative diseases, including MS, cerebral palsy, ALS, Crohn’s Disease, Huntington’s, and Parkinson’s among others.
For the past year, CCSVI Clinic has not done the ‘liberation therapy’ for MS alone without the combined stem cell transplantation in the same 12-day protocol sequence. “Once we saw how dramatic and long-lasting the outcomes were with the addition of the stem cells, it didn’t make sense to do it any other way.” says Gupte. Most MS patients would agree. Lawrence Vermeersch of Kenora, Canada is convinced that it’s the stem cells that are continuing to make the difference in his recovery. “I’m thinking it will take a year to full recovery, but I’m continuing to improve every day.”For more details visit http://ccsviclinic.ca/?p=882

Melissa Lessie said...

Jessica Davis, diagnosed with MS in 2003, of Somerset, UK agrees: “I have my life back thanks to CCSVI Clinic and it’s the best thing I ever did for myself. They weren’t easy to find but I did my homework.” She continues: “I had to be my own advocate for both liberation therapy and the stem cells because I got no help from my own neurologist. From the day I was diagnosed, my MS was aggressive. I didn’t have much time to take action before I would get to the point where just getting out of the flat would become impossible. I was using a cane and so tired all the time. After the 12 days at CCSVI Clinic, the first thing that cleared up was the head fog and my (incontinence) and the rest has come back over the past six months. I am working again and I consider myself cured.”
“These are typical stories for all types of neuro-degenerative diseases we are treating through CCSVI Clinic. At least with MS we are seeing significant improvement in many patients and I believe this trend of outcomes will continue” says Gupte. “We have also had some significantly positive outcomes with ALS and (cerebral) palsy. With the results we have seen in the past year, I think that the promise of stem cells is coming closer to matching the reality.”For mor details visit http://ccsviclinic.ca/?p=882

Unknown said...

David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
“It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
“I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904