Stem Cell Breakthrough including better CCSVI results

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Stem Cell Breakthrough including better CCSVI results

Postby milesap » Mon Sep 10, 2012 8:27 pm

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Re: Stem Cell Breakthrough including better CCSVI results

Postby drsclafani » Tue Sep 11, 2012 9:05 am

milesap wrote:http://www.youtube.com/watch?v=ysFiW26MHfQ&feature=youtu.be


Nice commercial advertisement
I look forward to the Trial.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: Stem Cell Breakthrough including better CCSVI results

Postby milesap » Tue Sep 11, 2012 7:20 pm

posted by David on ccsv-ms.ning.com the video is his story



"I’m Back to Report on My Combination Stem Cell and Liberation Therapy…with Videos- David Summers
Posted by David Summers on September 10, 2012 at 1:44pm
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It’s been a while since I blogged here and it’s been quite a summer for me. Some of you have probably been wondering how I’ve been doing since I first posted in May about my sequence of treatments that included both jugular vein widening and stem cells. As you’ll recall, I reported on each one of my health benefits just 60 days after the therapies I had in early April of this year. I described not only the typical symptomatic relief that comes with the liberation therapy, but other good changes in my long-term paralysis due to the MS below the waist that could not be accounted for by just vein widening alone. After only weeks following my stem cell implants, I had definitely developed new feelings and motor functions below the waist. I could actually see new muscles popping out of my legs and feet. In that first blog, I said that if I could feel sensation in my legs and had some small movements, it would be my goal to walk again. But I knew this would not happen overnight either.

After I made that kind of lengthy blog here on Locator, I received comments and calls and I want to thank all of you who supported me with your kind words and your personal phone calls. While most people who commented were supportive, many people were more than skeptical, even somewhat ‘mean spirited’, and they wanted to see how I would feel 6 months on and of course, ‘video evidence’ of my improvement. Gee…no more that I wanted to know!! And I also know that some of the ‘doubting Thomas’s’ that commented on my blog back then have probably been gloating because I haven’t blogged or posted a video since then to prove that my therapy worked in any way now almost 6 months on. After all, in their minds, my improved health at the time of my first blog could simply be chalked up to the euphoria of the ‘placebo effect’ if I didn’t continue to improve. I think this would have made them happy because to them, I would have been just some poor schmuck MS patient who had fallen for an untried, unproven half-baked theory that turned out to be snake oil (hmmm…like taking a chance on liberation therapy isn’t exactly that??!). Well, I’m sorry to disappoint all you Thomas’ out there but I’m not going to give you the satisfaction. Read on.

Since I’m all about full disclosure, I did talk to a lot of people right after that blog post because they personally wanted to confirm that I was actually seeing all these good improvements. Some of those people who called me have since gone to CCSVI Clinic to get the same treatment. I’m happy to say that I’m still in touch with many of them and to date, I believe that they are progressing about as well as I am, although I can’t give you details about how my disability level and speed of recovery compares to theirs. When I had my treatments in April, I was pretty disabled, kind of out of it, and very much secondary progressive at 8.0 on the Kurtzke scale. But rather than go over the sordid details here, you can read about how disabled I was because I just re-posted that blog from May.

We’ll get to the video in a moment, but I’m here to tell you that I have not had an MS attack since the combination therapy in April. Although I haven’t gone for a follow-up ultrasound (no place around here to get one) I think I can feel the distinct difference when my jugular veins are open and when they aren’t because I had the liberation procedure in 2010 and they didn’t stay open very long. This time, the infusion of stem cells right into the vein where they put the balloons immediately following venoplasty seems to have made the difference. I haven’t had a single sign of regression and intuitively I know that alone has made a huge difference in strengthening the jugulars and keeping them open. And isn’t this the big problem with CCSVI and the liberation therapy itself? It happened to me the first time in 2010 and I have spoken to so many others who have restenosed shortly after their liberation therapy as well. It makes me wonder why everyone is in such a rush to get it done if the veins don’t stay open and there isn’t a proven method to keep them open.

But more than that, the stem cells that were transplanted back into me a few days after they were taken from my own bone marrow and grown in the lab are what has made the rest of the difference. And it’s why I have a chance to get my full health back.

This time I don’t want to give the ‘Thomas’s’ out there the opportunity to get all negative on this blog. In case anyone doubts my story and whether or not I can stay healthy and continue my progression toward full health, you need to know that what I am experiencing is backed up by science and medical trials. I have a list of them if anyone wants to contact me. I myself am in a trial for the next 3 years. So this series of medical procedures isn’t hocus-pocus witch doctoring or placebo effect. It’s soundly rooted in evidence produced in medical trials that is just now being translated to therapy on humans, even if it can’t be done in North America for political reasons. And even if I don’t get all my functions back now or ever, just look at the difference it’s already made to my life! Instead of propping myself in front of an air conditioner like I did for the last 10 summers, last month I went to a rock concert, went out socially several times, and oh yeah…am taking regular physiotherapy that includes walking and working on my balance and strength issues. My physiotherapist is amazed and will tell anyone who will listen to her about my case. Oh yeah, and instead of being something to fear, this summer, as blazing hot as it was, I actually enjoyed the heat. Yes I have had a few setbacks because of a persistent UTI not related to the therapies, but through it all, I’ve gotten physically stronger and stronger.

So instead of a typical YouTube video that shows me mugging it up for the camera with rambling testimony that’s just my opinion based on me feeling better, this video shows the medical science behind my therapy and relates each part of that science to my recovery over time. From treatment in the hospital to the results of the therapy two months later here is proof to anyone who is viewing this and they can delve into and verify these facts with their neurosurgeon if they like."

http://www.youtube.com/watch?v=ysFiW26M ... e=youtu.be

I wish to thank the researchers at Regenetek Cellular Technologies for taking the time to make this video, for spending so much time with me on my ongoing case file, and especially for developing this clinical protocol that will eventually make the difference to so many thousands of lives in the future. Also CCSVI Clinic of course. On a personal note, I’m a bit behind getting my personal videos done, but I promise to have more of them posted up here in shortly so you can see for yourself the back-to-back progression of my improvement over time. I promise you I am much more improved than what the video shows, but I think that I can walk at all is a miracle by itself. So please don’t despair. There is hope for people even as disabled as I was.

God Bless- David Summers
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Wed Sep 12, 2012 8:11 pm

With all due respect Dr. Sclafani, the 'liberation procedure' doesn't work by itself. Can you honestly say it does? Or that the current trials will be successfully concluded so that vein dilation will become an approved mainstream therapy for MS given the current findings? (NL study as bellwether).

Regarding the video itself: I cannot see any inducements to get patients to purchase anything. It is informational only and focuses on the process, the science and the preliminary result in a single case study. If you wish to verify the science identified and revealed on the text screens, you might want to contact Dr. Saud Sidiq, Research Director and Senior Research Scientist, Multiple Sclerosis Research Center of New York, Dr. Robert Miller, Case Western University, or Dr. Warren Sherman, Director, Stem Cell Research and Regenerative Medicine, Center for Interventional Vascular Therapy, Skirball Center for Cardiovascular Diseases at Columbia U.

The video presentation was constructed by the researchers and followed the Case Western Study public video almost precisely, except with more explanation. Please focus on the novel therapy being demonstrated and attempt to review the video without bias. Notwithstanding the regenerative aspect of implanting autologous MSCs into the CNS, the innovation of implanting autologous stromal cells intravenously is good news for MS patients and may eventually prove useful as an additional and relatively simple intervention that will support the liberation therapy itself.
Last edited by drdregen on Thu Sep 13, 2012 11:25 am, edited 1 time in total.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby 1eye » Thu Sep 13, 2012 7:03 am

Do the mesenchymal stem cells help the reformation of parts of the glial/glymphatic system that are disrupted by malformation of by ballooning or even by lumbar punctures? Does this disruption lead to further damage to remaining veins, which can be remedied using the stem cells?

Can the stem cells prevent restenosis? Should this be a common practice when the brain/glymphatic system is affected, not just by ballooning, but by any surgical procedure?

My brother had his drainage operated on with a very invasive hydrocephalus operation when he was a baby. Was it because he was a baby, and had a plentiful supply of mesenchymal regeneration available to him, that he was able to recover well and is now fifty? He was only days old when this was performed.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby Cece » Thu Sep 13, 2012 9:25 am

Welcome to the site, Dr. Dregen. Are you from the CCSVI Clinic?
I would expect that the CCSVI trials will be conducted and that CCSVI will be established as a disease in its own right and vein dilatation will be a standard treatment for these malformations of the valve or vein. We are not there yet.
Would love to see research on combo stem cell/venoplasty. I think there is potential there. For me, yes, venoplasty worked by itself.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Thu Sep 13, 2012 10:46 am

Cec, I am a medical researcher studying the protocol now being performed at CCSVI Clinic. Professionally I am also a member of the International Cellular Medicine Society (ICMS). I have no financial interest whatsoever in CCSVI Clinic.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby cheerleader » Thu Sep 13, 2012 12:17 pm

My husband's venoplasty worked just fine, drdregen. Now 3 and a half years later, his stents are perfect, his cerebral bloodflow and return is normal. His gray matter atrophy is reversed, he mountain bikes and works full days. He has had no MS progression. But his treating doctor has been unable to begin a trial because of political pressures at his university. I can't see how adding stem cells is going to speed up the process of getting clinical trials approved for venoplasty for CCSVI......but please, if you are able to get a study like that going, go for it. But don't shoot the messengers that are working to explore the connection of CCSVI and MS.
Dr. Zamboni's Brave Dreams trial is just beginning. It was his research that I brought to Stanford, and his research that continues to lead the way.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Stem Cell Breakthrough including better CCSVI results

Postby Ernst » Thu Sep 13, 2012 12:37 pm

Does venoplasty work by it self? There are many different stories about treatment results. Its now 2 yrs and 3 months since my wife had her venoplasty and it changed her situation totally to better. Nowadays she doesn't have symptoms anymore and she can exercise hard. Does it last? Who knows, time will tell. But in her case I'd say venoplasty worked wonderfully by it self.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: Stem Cell Breakthrough including better CCSVI results

Postby 1eye » Thu Sep 13, 2012 2:20 pm

Not, repeat not, interested in shooting any CCSVI messengers.

I think bone marrow and stem cells have a proven track record. They are possibly useable in cases where restenosis has already happened, or is likely to happen. Not everyone can benefit the way Jeff did, especially without using stents. I think pwCCSVI and/or pw "MS" have to find their own way, and the bigger the armamentarium the better. Many disciplines can be brought to bear.

I also think new work on the glymphatics may prove critical. Ever wonder how immune cells travel along the outsides of veins? Maybe this drainage has something to do with that.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby blossom » Thu Sep 13, 2012 9:22 pm

welcome dr. dregen!
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Re: Stem Cell Breakthrough including better CCSVI results

Postby blossom » Thu Sep 13, 2012 9:31 pm

very very happy for you mr. david summers. anything that helps anyone is nothing but a plus. we are all fishing hopeing to get the results for the better.


1eye-you hit it pretty much on the head.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby Cece » Thu Sep 13, 2012 9:45 pm

drdregen wrote:Cec, I am a medical researcher studying the protocol now being performed at CCSVI Clinic. Professionally I am also a member of the International Cellular Medicine Society (ICMS). I have no financial interest whatsoever in CCSVI Clinic.

Thanks for the additional information, and in your first post as well.

Looking at the ccsviclinic website, it does read as if they are gathering data with the intent to publish. It's not randomized controlled trial level of evidence, but it is registry data.
http://www.ccsviclinic.ca/?p=978
This will allow a prospective cohort study currently approved through an IRB application to collect data on records made available through medical files prior to the therapy protocol, at the time of the procedure, and then by regular patient follow-up (case study data). Patient registry and supervision of data is through the hospital IRB Board. The study is exclusionary (based on EDSS scoring) and only patients diagnosed with MS will qualify for the study. All qualifying patients must participate. It should be noted that all patients freely self-select the CCSVI Clinic and are not pressured into any decisions. The Clinic does not actively recruit patients and intends to seek informed consent for participation at the time of application for treatment; if informed consent is given, all individual patient data will be entered into a dedicated and aggregated database for analysis that will be published later, compliant with all relevant security and personal privacy requirements (HIPAA)

I would say that angioplasty has a strong track record, with 25 years of use. But stem cells are a potential avenue, and I know there are many people with MS who have tried them, and many more who would if the cost were lower. When combining the two treatments, you gain a possible benefit of the stem cells on the veins healing but you lose the knowledge, if it works, of whether it was the stem cells or the venoplasty that did the job.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Fri Sep 14, 2012 1:02 pm

1eye: Yes exactly. When we are infants up to adolesence we have billions of MSCs coursing through our veins ready to locate at the site of any injury or area of inflammation. Healing happens within days after that. MSCs are the body's protector when we are young. They also readily pass through the blood brain barrier (BBB) to protect the central nervous system and they are known to express proteins that turn off over-aggressive immune system activity. However, by the time we are 25-30 years old they do not exist in enough numbers to make a significant difference and the healing cascade of events in our bodies is different. Hence the dramatic difference in healing times for injuries, and perhaps the ability to heal AT ALL from some diseases such as MS or PD. The introduction of autologous MSCs in a clinical dosage as adults allows us the protection we once had when we were kids.

Yes, with the goal being to prevent restenosis, the evidence for some sort of additional intervention that supports the initial 'liberation' procedure is pretty compelling from the point of view that it not only supports long-term patency, but because of what it can avoid. For example, there is now a new and growing subset of MS patients who have had vein widening venoplasty multiple times, usually to less beneficial effect each time leading to the later discovery of so much intraluminal scar tissue by the second, third or fourth attempt at re-opening the veins that the procedure cannot be performed again. I have noticed that topical amongst this group are vascular grafts, pig veins, etc. The need to remove veins because they are so occluded indicates the possibility that there was 'overtreatment' of the veins during the initial venoplasty procedure that eventually led to the formation of scar tissue (if they didn't occlude with thrombin build-up immediately post procedure). This further indicates that there may not be recognition of the fragility of the neck vein structure, especially inpatients that already have diagnosed venous disease. The preliminary evidence we are looking at indicates that stromal cells injected through the catheter at the time of the venoplasty prevents the normal healing event cascade and avoids the formation of both thrombin and scar tissue intraluminally. This is well illustrated in the video. It would also be extremely cost-effective to aspirate marrow and separate the patient's own stem cells for injection at the time of the venoplasty. And with a stronger and more durable vein that has been treated for venous disease, it would possibly avoid the need for subsequent vein dilation procedures, with long-term patency as the result. This could be done just about anywhere the liberation procedure is performed because the stromal cells taken from the patients own marrow only have to be separated and purified, not increased in number because they are enough to be considered a clinical dose when super-selectively implanted in the vein directly to the site of injury due to venoplasty.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Fri Sep 14, 2012 2:16 pm

Cheerleader: That's terrific news for your husband, but I'm addressing the thousands of people for which the 'liberation therapy' has failed as an effective intervention. Not everyone's veins are the same; anatomical structures (including abnormal valves) are different and of course erratic hemodynamic pressures may have existed in the veins for a very long time that have weakened the intraluminal area so that the diseased veins in these individuals simply cannot be effectively treated in the same way your husband's was.

I have looked at over 300 DU studies in MS patients. Not a huge number in total, but since most demonstrated some retrograde flow, just from a statistical standpoint it's certainly enough to recognize a definite correlation between CCSVI of the neck veins and MS. So I think that the neck veins DO have to be treated to stop the MS trigger from being pulled in those individuals predisposed to the disease. I am simply examining additional therapeutic modalities that will support the optimal flow of blood drainage once the abnormal veins have been corrected. I fear that if the NL study of liberation therapy alone is any indication of the outcome of the Albany trial, there won't be much of a chance of the medical establishment sanctioning neck vein dilation as an effective treatment for MS even though the CCSVI/MS link clearly exists. Long-term patency can't be achieved reliably. All my group is attempting to do is prove a hypothesis in support of/and additional to what Dr. Zamboni has (in my mind) already proven.
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