Saturday, January 2, 2010

Some thoughts on CCSVI

The Liberation Treatment is based on new findings that CCSVI (Chronic Cerebrospinal Venous Insufficiency) blockages have been found in the jugular veins and/or the azygos vein of all MS patients tested. A simple 'balloon' or ‘stent’ procedure to open the veins can be used. This may be the cure!

I have been following all the new reports, news, Facebook groups and forums on CCSVI. It seems the more news we get the more questions we have. One of the big (simple) questions no one seems to be able to answer is: if there is a blockage anywhere why not treat it? Does it matter if you have MS or not? If you have a heart related blockage it's fixed. If you have blood clots or issues in your legs they are fixed, no questions asked. If anyone has a blockage in their jugular veins and/or the azygos vein why isn't it fixed asap? It's an obvious problem IF IT'S BLOCKED.

I am VERY encouraged by the reports people have been posting after having the procedure. It appears that at least 3-4 people a day are having the liberation treatment (NOT in the US). It would be of great benefit to everyone if these people were in a professional study and being tracked on their progress and what is happening with them. Sadly the wheels turn slowly and things are not in place yet. Hopefully some day soon.

A few things I have noticed
1. CCSVI has a REAL place involving MS.
2. People are moving ahead with the treatment on their own, regardless of the "unconvinced" and non-support from insurance companies.
3. People with MS having the procedure show marked improvement in their MS symptoms.
4. There is a great ground swell in the MS communities to get this research going.
5. The US is keeping this story very quiet in the news and in the public eye. Why? One can only speculate. Ahh...pharmaceuticals come to mind immediately.

I will have a lot more on this subject in the future I have added some links and information below I have gathered if you want some additional information on CCSVI.

News reports:
CTV NEWS (lots of videos and reports.
Links:
This is MS
Facebook group CCSVI-in-Multiple-Sclerosis
Facebook group MS Liberation Treatment (CCSVI)


There are many small things you can do to help your vascular health while waiting to be tested or treated for CCSVI. While these actions won't get rid of any venous obstruction, they can help your whole body and maybe slow down some of the reflux and damage from jugular stenosis. Again, I'm not a doctor- these are just some common sense steps you can take right away.

1.Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything the has too many ingredients (like overly processed foods.) No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.

2.Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.

3.Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.

4.Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.

5.Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.

6.No more smoking. Sorry. Cigarettes are vasoconstrictors- they close up blood vessels and can make stenosis worse, That's why we've seen so much about smoking and MS in the news lately. Cigarettes actually slow down the immune system...so you'd think they'd be good for MS, if MS was autoimmune! But cigarettes are linked to MS progression. In the CCSVI paradigm, that's because they inhibit good blood flow.

7.Look into inclined bed therapy. Raise the head of your bed about 4 inches. Use a 2x4 board underneath the head of the bed. The jugular veins are the only exit route for blood from the brain back to the heart when we lie down flat. If you sleep tilted up a bit, your vertebral veins can help out. Don't use pillows, this will crimp your neck. Use a board under the bed. It may take a few nights to get used to, but we've been doing it for awhile.

11 comments:

  1. There is so many thought good ones and bad ones so i really think that for a good communication and for a good prevention we need to spread the information.

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  2. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
    CCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
    It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
    Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.

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  3. CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
    Dr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
    CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
    More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.

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  4. Thanks for sharing a idea....Great post and informative
    Treatment for CCSVI

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  5. 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/

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  6. Thanks for sharing a idea....Great post and informative
    CCSVI Mexico

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  7. 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

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  8. http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be
    Over the past year, CCSVI Clinic and its researchers and specialists have been studying the Combination venoplasty/autologous stem cell infusion protocol developed by Regenetek Cellular Technologies with the collaboration of outside labs and bioproducts manufacturers. As laboratory techniques gain ever-increasing sophistication based on new scientific methodologies for enhancing somatic cells into preferred lineages in vitro, the therapeutic outcomes for patients with neurological disorders have also been improving. Deb O’Connell who was treated at the Clinic in mid-September, 2012 recovered so quickly from her serious long-term degenerative disease condition that she experienced a wave of improvements while still in the hospital.
    It’s a matter of medical record that Deb had been wheelchair bound for 10 years (completely non-ambulatory) with multiple co-morbidities when she entered the program on September 9; she was 9.5 on the EDSS scale as assessed by a neurologist, was down to 80 lbs in body weight, could not breathe effectively, speak, or take in food by mouth due to dysphagia. Her pain was chronic and significant. When she left the Clinic on September 24th , she walked out of the doors and into a waiting van to go to the airport. At the time of her discharge from the Clinic, she could breathe normally, effectively speak once again, eat any types of food she desired and her pain had all but disappeared. At the time of this writing she is back home in Canada and reports that she continues to recover (especially her contractured hands), shows no signs of new disease symptoms, and has gained 18 lbs since her therapies, less than 3 weeks ago. She has now begun a regular physiotherapy program and is gaining walking strength and balance. The recapitulation of the course of her disease (MS) within days, provides evidence that the in vitro requirement of cell pluripotency has correctly been identified with respect to adult cell source origin, time, and manipulation in culture. http://www.ccsviclinic.ca/?p=1084
    http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=player_embedded#t=0s
    http://www.youtube.com/watch?v=BfSOmij8tfk&feature=youtu.be

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  9. I really like to read.Hope to learn a lot and have a nice experience here! my best regards guys!ccsvi Germany

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  10. Methodology, Intervention Dose and Administration Procedures
    The Combination Therapy approach was used. Combination Therapy is a novel two part sequenced protocol for infusing both bone marrow-derived stromal cells and cultured mesenchymal stem cells (MSCs) and was developed for the treatment of MS by CCSVI Clinic and Regenetek Research. All 16 patients demonstrated significant pathological abnormalities in their jugular or azygous veins as determined by magnetic resonance venography (MRV) at the time of their procedures. Patients who underwent vein dilatation also had their veins infused at the time of venoplasty (if and where indicated) with adult stromal cells from a bone-marrow source which were previously separated by density gradient centrifugation. In the second part of the sequenced therapy, adult autologous cells from the same source that were expanded in vitro were later infused back into the central nervous system (CNS) via lower lumbar puncture.For more information please visit http://www.ccsviclinic.ca/?p=1194 or you may call the toll free number at 888-468-1554 or info@ccsviclinic.com

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