Wednesday, July 21, 2010

Thoughts CCSVI, Fund Raising and Friends

Quick update on things.

The fund raising is going well. I am very humbled by the people that surround me in my life. I can't find the words to express my gratitude or thank everyone enough. Thank you all for getting involved, fund raising and donating to help me get my treatment. With your continued help I am going to get the money needed to pay for this treatment!

I would also like to thank everyone that is helping me spread the word on CCSVI and MS. CCSVI is such a huge help for those with MS. The "people" spreading the word seems to be the only way to get the word out these days in the US. It's very unfortunate. I still hear of, or talk to people that have never heard of CCSVI and thats a sad sad situation. Please check out the new 3 days post CCSVI video I added to the left. Keep spreading the word!

One of my FB friends has the procedure last night and is doing well. She was very tired last night so her report was understandably short after the procedure. A quote from her initial report "can tell you that my right leg feels the same as my left leg for the first time in years!". I can't wait to hear how she is today and how things progress the next few days and weeks. Very Exciting.

As far as I go.....still awaiting my phone call from the doctor... Waiting is really hard. No definitive treatment date, no date for the phone call to come...its a killer. I will let everyone know what's going on as soon as I know.

Thanks  again for all the support and continued help. There is no way I could get through this without my wife, family and all of you.


7 comments:

  1. 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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  2. 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

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  3. What isn’t yet accepted in the medical community is that stem cell transplantation demonstrates a new approach for supporting restoration of tissue through remyelination. Through multiple clinical trials that have already proceeded to phase III, it has been well-established that mesenchymal stem cells moderate responses of the disease and stimulate repair of the central nervous system. In these studies, adult autologous mesenchymal stem cells have not only been safely administered to MS patients but have proven effective as a potential therapy for MS. Approved Clinical Trials involving small numbers of patients have occurred for the past half decade in medical centers outside of North America. As a result, various medical treatment centers have already derived protocols for extraction, culture, and treatment of MS patients with autologous stem cells. A review of popular medical journals actually reveals a widespread consensus on the efficacy of mesenchymal stem cell transplantation as a therapy for MS patients.
    After 18 months of treating MS patients, CCSVI Clinic is well along with its program. “Success means different things to different people, but I’d say we’ve had much more than we could have hoped for when we first started.” says Dr. Avneesh Gupte, Neurosurgeon with CCSVI Clinic. “For the past year we’ve been adding autologous mesenchymal stem cell transplantation to the liberation therapy procedure and that’s when we really started to notice a significant change in patient outcomes”For more details visit http://ccsviclinic.ca/

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  4. 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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  5. 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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  6. 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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  7. Strategic Importance of Jugular Vein Dilatation Otherwise Known as ‘Liberation Therapy’
    The Combination Therapy includes neck vein dilatation based on the findings of Zamboni, et al. The vein dilatation or venoplasty therapy provides the appropriate drainage of the CNS that prevents a retrograde pressure exertion on the myelin sheath covering the CNS. Whatever triggers the autoimmune system to turn on in people predisposed to MS, this back-pressure needs to be resolved. In case after case, the typical symptoms of MS retreat in individuals where the veins are expanded and the flow pressures are equalized. Since keeping the jugular and azygous veins fully open is the key to reducing MS symptoms, it is of paramount importance to know what other post-procedure factors create enduring effect in the venous flow. For example, there is now good clinical and observational evidence to support the fact that stem cells (transplanted intravenously at the time of the venoplasty) reduce swelling, thrombin buildup, clotting and subsequent permanent intraluminal damage leading to scar tissue. As to what has already been established through clinical trials and subsequent therapeutic practice, it has been found that even in patients with severely malformed or abnormal jugular vein structure, the intravenous introduction of autologous stromal cells (MSCs) post-operatively has served to repair injury attributable to venoplastic damage and desquamation of the endothelial and subendothelial cells of the interior venous lumen (tunica intima). Peak velocity, time average velocity vein area, and flow quantification have been assessed by means of echo color Doppler at periodic intervals post-venoplasty. Significant hemodynamic improvement has been recorded at the level of the veins in the neck post-venoplasty. Moreover, this additional stem cell transplantation therapy has led to increased luminal diameter and improved patency rates demonstrating that the introduction of stem cells post-operatively significantly modifies the hemodynamics of the jugular veins more effectively than venoplasty alone.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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