stem cells in CCSVI as discusssed at AAC symposium

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

stem cells in CCSVI as discusssed at AAC symposium

Postby Cece » Tue Jul 19, 2011 9:09 am

Is it similar to what's being done with PAD, as described in this news article?

http://hastingsreminder.com/hastings-wo ... -p1665.htm

In CCSVI, the stem cells are injected arterially after the venoplasty is performed. Then what do the stem cells do?
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Postby marcstck » Tue Jul 19, 2011 6:34 pm

Cece, when mesenchymal stem cells are infused intravenously, they have been shown to have a strong immunomodulating effect. They may also act as anti-inflammatories. As far as regeneration of nervous system tissue, it's thought that the cells may migrate to areas near CNS damage, and then express proteins that signal stem cells native to the CNS to initiate repairs. The Myelin Repair Foundation has done some studies on this, hoping to isolate the proteins in hopes of developing a drug that would have the same regenerative effects without the use of actual stem cells.

Dr. Neil scolding in England recently published some study results from a small 20 patient trial, which showed that after a year his patients had an approximately 20% increase in nervous system function following a series of stem cell infusions.

The prevailing thought, though, is that to truly effect CNS repair, the cells would need to be injected intrathecally, or perhaps even through intra-lesion injections. Dr. Shimon Slavin in Israel is taking raw mesenchymal cells from a patient's bone marrow, coaxing them into becoming neural progenitor cells, and then intrathecally injecting them into MS patients. He also uses intravenous infusions of raw cells.

A stem cell center in Panama (I believe it's called Cell Medicine, Inc.) also uses a combination of intravenous and intrathecal injection of mesenchymal cells, derived from fat cells harvested from patients via mini liposuction. Patients undergoing treatment down there are also put through an intense regimen of physical therapy. And MS friend of mine is down there now, going through a four-week treatment program.

I've known (in a virtual sense) quite a few patients who have undergone the therapy either in Israel or Panama (the same operation used to work out of Costa Rica). Generally, the results have been mixed.
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Postby bestadmom » Tue Jul 19, 2011 6:51 pm

I popped-in to Dr. Sclafani's symposium on Sunday only for the stem cell talk by Drs. Botev and Petrov of Bulgaria and was disappointed.

First, the treatment is intravenous. I, like Marc, heard that intrathecal is the way to go. It's one researcher's opinion, but it makes sense to me.

Secondly, the mesenchymal cells are harvested and cleaned and are infused immediately thereafter. This means there is no time to separate and replicate specific types of cells. Slavin infuses 6-8 weeks after harvesting.

Third, the combo treatment in Bulgaria is done the day after the ccsvi procedure. Improvements of 1 edss score were noted in most patients. Since both treatments are done within a day or two of eachother, there's no way to know what is responsible for the improvement. I am not sure if the study results presented were for patients who had the combo treatment, and if so, the time span between the two.

I also know people who have had treatment in Costa Rica and the improvements were short-lived. That was pre-ccsvi.

There's so much research to be done. I'm hopeful that the researchers are on the right track, but there's a ways to go to figure this all out.
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Postby Cece » Tue Jul 19, 2011 7:21 pm

So you were disappointed in the way the research was done, but not necessarily in the promise of stem cells themselves.

You are both more knowledgeable about this than I am. I may have to google 'intrathecally'....
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Postby bestadmom » Tue Jul 19, 2011 7:35 pm

I was disappointed that there were only 7 subjects. It seemed like too small of a sample. I also was disappointed in the methodology of the treatment.

Marc and I have learned a lot about stem cells from the neuro he goes to and I used to see. The doctor does stem cell research for MS treatment, and has been working on studies wth FDA approval. Marc and I are in agreement on our preferred protocol, which mirrors our neuro's.

Intrathecal injections go into the spinal fluid - it's like a tap. The dr punctures between the lower vertebrae below the cord, removes a tiny but of spinal fluid, then injects back something else. I had intrathecal methotrexate shots, one of the doc's off-label treatments, which didn't help.
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Postby drsclafani » Thu Jul 21, 2011 8:32 pm

Cece wrote:So you were disappointed in the way the research was done, but not necessarily in the promise of stem cells themselves.

You are both more knowledgeable about this than I am. I may have to google 'intrathecally'....


These stem cells are large and they can be filtered by the lungs. Since intravenous infusions have to go through the lungs before they are delivered to their target organ, this is a suboptimal way of delivery. Intrathecal is also suboptimal

what you guys missed was that dr petrov injects the stem cells through a catheter placed within branches of the internal carotid ARTERY. This results in ALL of the stem cells being delivered to the target organ. This technique has also been championed by Dr Augusto Brazzini in Lima Peru. He uses intraarterial infusions for Parkinsons disease with encouraging results.

http://www.faim.org/stemcell/brazziniin ... ideos.html

i think this is definitely the way to go.

it is unfortunate that the talk was not easily understood.
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Postby bestadmom » Thu Jul 21, 2011 8:44 pm

Thank you, Dr. S, for clarifying the delivery method. I understood it to be iv, but missed the details. Dr. Sadiq "brainwashed" Marc and me that intrathecal is the only way to go.

Will the dr symposium be available online at some point? I'd love to see all the presentations.
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Postby dania » Fri Jul 22, 2011 6:16 am

I had stem cells Oct 2009. 8 intrathcal and 2 intravenous. It did nothing for me and my condition continued to decline. And the 3 others I have remained in contact with, have all continued to decline, just like me. One doctor, where I was treated, told me that the problem is they never know where the stem cells will go.
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Postby Cece » Fri Jul 22, 2011 7:27 am

marcstck wrote:As far as regeneration of nervous system tissue, it's thought that the cells may migrate to areas near CNS damage, and then express proteins that signal stem cells native to the CNS to initiate repairs.

Thanks, this was helpful.
bestadmom wrote:Secondly, the mesenchymal cells are harvested and cleaned and are infused immediately thereafter. This means there is no time to separate and replicate specific types of cells. Slavin infuses 6-8 weeks after harvesting.

It is probably done immediately because the patients are medical tourists and not able to make two trips? Although I just caught the detail that there were only 7 patients. Small samples are ok, if it is for preliminary findings that demonstrate cause to investigate further with a larger sample.
bestadmom wrote:Third, the combo treatment in Bulgaria is done the day after the ccsvi procedure. Improvements of 1 edss score were noted in most patients. Since both treatments are done within a day or two of eachother, there's no way to know what is responsible for the improvement. I am not sure if the study results presented were for patients who had the combo treatment, and if so, the time span between the two.

Over time, in CCSVI treatment alone, I wouldn't expect 1 EDSS improvements in a group of patients that did not exclude PPMS, since we are hearing reports of lesser results among the pwPPMS. Stem cells would take time to have any neuroregenerative or immunomodulatory effects. It would be helpful to know when these 1 EDSS improvements occurred.
drsclafani wrote:what you guys missed was that dr petrov injects the stem cells through a catheter placed within branches of the internal carotid ARTERY. This results in ALL of the stem cells being delivered to the target organ.

That is really interesting.
It also helps to be told it's through a catheter in the carotid artery, I was thinking of it as an injection with a needle through the side of the neck, which does not sound as safe.

When you say it was not well understood, it may have gone over the heads of many of the doctors in attendance as well?
dania wrote:One doctor, where I was treated, told me that the problem is they never know where the stem cells will go.

So this could be the breakthrough that was needed, if injecting the stem cells through the carotid artery does indeed result in all the stem cells going to the brain.

I wish the stem cells had worked for you and the others you mention.
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Postby bestadmom » Fri Jul 22, 2011 7:48 am

bestadmom wrote:Secondly, the mesenchymal cells are harvested and cleaned and are infused immediately thereafter. This means there is no time to separate and replicate specific types of cells. Slavin infuses 6-8 weeks after harvesting.

It is probably done immediately because the patients are medical tourists and not able to make two trips.

I agree but that's the problem. It takes time, and shouldn't be a rush job.

bestadmom wrote:Third, the combo treatment in Bulgaria is done the day after the ccsvi procedure. Improvements of 1 edss score were noted in most patients. Since both treatments are done within a day or two of eachother, there's no way to know what is responsible for the improvement. I am not sure if the study results presented were for patients who had the combo treatment, and if so, the time span between the two.

Over time, in CCSVI treatment alone, I wouldn't expect 1 EDSS improvements in a group of patients that did not exclude PPMS, since we are hearing reports of lesser results among the pwPPMS. Stem cells would take time to have any neuroregenerative or immunomodulatory effects. It would be helpful to know when these 1 EDSS improvements occurred.

I know many people who had EDSS improvements of more than 1 point from ccsvi treatment. Unfortunately, I'm not one.
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Postby Cece » Fri Jul 22, 2011 7:59 am

I absolutely agree there have been individuals, including pwPPMS, who have made astonishing gains. But as a group, the EDSS of PPMS is not improving to that extent, as far as we preliminarily know. If we are not seeing EDSS improvements in PPMS in CCSVI alone but we are seeing it in combined CCSVI and stem cell therapy, that would be something.
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Postby bestadmom » Fri Jul 22, 2011 11:40 am

I wasn't talking about ppms. I don't think the doctors included them in their study either. Hopefully we can see the presentaion when if/it goes` live.
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Postby drsclafani » Fri Jul 22, 2011 7:51 pm

bestadmom wrote:Thank you, Dr. S, for clarifying the delivery method. I understood it to be iv, but missed the details. Dr. Sadiq "brainwashed" Marc and me that intrathecal is the only way to go.

Will the dr symposium be available online at some point? I'd love to see all the presentations.
i should receive them on tuesday or wednesday. i want to preview and then will send them to drbart who will upload to the downstate radiology site so that we can present each on as a single video. I am inclined to release one every day or two so that they can be absorbed by those who want to discuss them

otherwise it will be like kids in a candy store with lots overlooked or underemphasized.

Does that sound reasonable?
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Postby drsclafani » Fri Jul 22, 2011 7:52 pm

dania wrote:I had stem cells Oct 2009. 8 intrathcal and 2 intravenous. It did nothing for me and my condition continued to decline. And the 3 others I have remained in contact with, have all continued to decline, just like me. One doctor, where I was treated, told me that the problem is they never know where the stem cells will go.


intravenous end up ttrapped in the lung.
that is the beauty of intraarterial: they go where you determine you want them to go.
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Postby bestadmom » Fri Jul 22, 2011 8:22 pm

drsclafani wrote:
bestadmom wrote:Thank you, Dr. S, for clarifying the delivery method. I understood it to be iv, but missed the details. Dr. Sadiq "brainwashed" Marc and me that intrathecal is the only way to go.

Will the dr symposium be available online at some point? I'd love to see all the presentations.
i should receive them on tuesday or wednesday. i want to preview and then will send them to drbart who will upload to the downstate radiology site so that we can present each on as a single video. I am inclined to release one every day or two so that they can be absorbed by those who want to discuss them

otherwise it will be like kids in a candy store with lots overlooked or underemphasized.

Does that sound reasonable?


Works for me. Thank you.
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