Stem Cell Breakthrough including better CCSVI results

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

Re: Stem Cell Breakthrough including better CCSVI results

Postby ErikaSlovakia » Sat Sep 15, 2012 12:40 am

Dear Dr. Dregen,
I have a question.
Is it possible to use stem cells from adipose tissue instead of bone marrow? If not, why.
Thank you.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Stem Cell Breakthrough including better CCSVI results

Postby blossom » Sat Sep 15, 2012 5:51 pm

dr. dregen, do you know of anyone with ppms that had had the liberation treatment and had no positive improvements but then got the ccsvi treatment with the added stem cells at your clinic and they had marked improvements?
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Mon Sep 17, 2012 10:57 am

ErikaSlovakia: The therapy protocol seen in the video follows various recent trials (Harris, Sidiq, et al, 2012, Cambridge, Connick, et al, 2012) where marrow derived stromal cells were expanded to clinical doses. MSC neuroprogenitor cells from BM were found to have various properties (adhesion, etc) that were advantageous for in vitro development of MSC-NP cells. Various growth factors expressed by MSC-NPs, mediate effects upon oligodendroglial differentiation and are important in the recruitment phase of remyelination. In vivo, MSCs were associated with an increased number of endogenous neuroprogenitor stem cells. These observations suggest that MSC-NPs may influence the rate of axonal and tissue repair through trophic effects on host progenitors in the central nervous system (CNS). Furthermore, in these studies and from our own clinical observations, the multiple trophic factors secreted by MSCs have demonstrated reduction in fibrosis inhibition, angiogenesis, tissue injury, chemoattraction, propagation of tissue stem cells, and a reduction of inflammation. These and other very recent and still ongoing studies support the use of marrow derived autologous MSC-NPs in MS patients (over adipose derived cells) as a means of promoting CNS repair.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Mon Sep 17, 2012 2:30 pm

Blossom; That's a loaded question and I better be careful how I answer that. I have seen two types of patients over the last two years, generally broken down into: a) Those who have previously had the liberation therapy, but restenosed subsequent to their vein dilation, and b) Those who are in the clinic to undergo the vein dilation and stem cell implant sequence for the first time. I am not aware of a case where the patient who previously had venoplasty didn't report some benefit as a result, however small, and forever how long (I understand that is common but not in my experience). There always seems to be 'something'...some improved state of health that they want to return to. Recently, there was one patient with such abnormal jugular veins that it was really hard to confirm that there were two main bilateral vessels. In his case there was nothing to widen or improve and stem cells were infused intrathecally only. The common denominator in all of the patients to date is that stem cells seem to improve outcomes in every case. But because retrograde blood flow to the CNS is definitely associated to MS, I think it's important to equalize the flows and use whatever other interventions support long-term patency. After that, if the disease progression can be halted by the infusion of MSC-NPs into the CNS with neuronal regenesis as a result (due to resultant biochemical interactions in the environment), all of the bases have been covered. Having said all this, each patient treated so far has recovered to a significant degree.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby blossom » Mon Sep 17, 2012 8:45 pm

drdregen, thank you for taking the time to answer my question. and thank you and the dr.'s you work with for being a part of researching and treating these terrible symptoms someone decided to call ms.

i was not meaning to give you a loaded question only a sincere one that i feel applies to many besides me. and, i feel your answer was honest and what you have to go with at this point in time.

i feel we as patients are too often thrown into a basket and lose our individuality also losing a shot at getting to the cause of our symptoms. once you are branded it is very difficult or impossible to get doctors to look deeper or more open minded of the possibilities.

with your facility moving forward to incorporate the stem cells with the ccsvi is encouraging for the patients that this shoe fits. hopefully, it will open the doors and bring more thinking out of the box so someday there are treatments that can explain and help all with those suffering with symptoms they call ms.

one more question--do you know or have you heard of anyone that has had injury to the femoral nerve due to angioplasty or otherwise that stem cells were used to heal and regain function?
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Re: Stem Cell Breakthrough including better CCSVI results

Postby MrSuccess » Mon Sep 17, 2012 11:01 pm

.... just a reminder .... pwMS that have had CCSVI treatment ALSO continue to take DMD's. Dr.Zamboni recommends that pwMS stay with their medications .

MrSuccess has previously posed that until a CCSVI study involves pwMS that HAVE NOT combined the CCSVI procedure AND .... DMD's ....... how can it be said the procedure alone is responsible for any improvements or worsening ? :?:

This is what MrSuccess wants : Take a small group of MS patients that have NEVER taken ANY MS drug or stem cells ...... then ...... have them treated with IVUS and measure their blood flow before and after. Have the Neuro's do their tests.

Monitor the results. It can't be more simple.

CCSVI and stem cells ? I like it . Both procedures = NO DRUGS.

I'll follow this one with interest.


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Re: Stem Cell Breakthrough including better CCSVI results

Postby PointsNorth » Tue Sep 18, 2012 1:33 pm

I was treated twice with good results - both times. Improvements lasted exactly one week each time. I'm scared of having stents placed without support here at home. RESTENOSIS must be addressed before we schedule a parade. Of the two-thirds of people who have success, what % of veins remain open at 6, 10, 12 months. Little evidence. I would argue that angioplasty alone ain't a slam dunk for that many people. The doctor is right. Venoplasty must make leaps forward before it becomes the standard of care.

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Re: Stem Cell Breakthrough including better CCSVI results

Postby vesta » Sat Sep 22, 2012 9:24 am

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Last edited by vesta on Fri Oct 05, 2012 1:01 am, edited 1 time in total.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby Cece » Sat Sep 22, 2012 12:13 pm

Gold standard has been proposed to be catheter venography PLUS intravascular ultrasound, not catheter venography alone.
best of luck to you, vesta
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Re: Stem Cell Breakthrough including better CCSVI results

Postby drsclafani » Sat Sep 22, 2012 1:34 pm

drdregen wrote: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.


For your information, i do not believe that treatment of CCSVI is really a treatment of MS; that can only come after many years of observation. In the meantime, i try to improve quality of life. and try to develop best technique for CCSVI endovascular therapies. To combine techniques at this time seems challenging because I believe that most people who treat ccsvi endovascularly do not do it correctly.

I am sorry if i came across as dismissive of the concepts. I did not mean to be dismissive. I just worry about You tube before the medical presentations. I have little personal experience with stem cell therapies, but have tried to excite my neurologists for years to no avail. I was initially very impressed with the work done by Dr Barzini in Lima Peru, who infused stem cells into the carotid arteries of patients with parkinsons disease. I was dismissed by my neurologists. I invited two years ago the Bulgarian group lead by Dr Petrov to speak at my CCSVI conference about their experiences with combined therapy in multiple sclerosis. At that time I was dismayed by the confounding variability caused by combining two new therapies without comparing them to each other alone or even using them in tandem with some interval between. There is much to discover about this.

in the meantime, can you tell me what the outcomes of the angioplasties were before and after the introduction of stem cell therapy? How long did angioplasty work? what was the restenosis rate? Were stents used? what were improvements. This information would be very useful and exciting data as a baseline to compare to your current therapy.

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: Stem Cell Breakthrough including better CCSVI results

Postby vesta » Sat Sep 22, 2012 1:54 pm

Gold standard has been proposed to be catheter venography PLUS intravascular ultrasound, not catheter venography alone.
best of luck to you, vesta

Cece! I don't know what intravascular ultrasound means as a treatment and it doesn't appear as a subject. Please advise, thanks.
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Re: Stem Cell Breakthrough including better CCSVI results

Postby Cece » Sat Sep 22, 2012 6:05 pm

vesta wrote:
Gold standard has been proposed to be catheter venography PLUS intravascular ultrasound, not catheter venography alone.
best of luck to you, vesta

Cece! I don't know what intravascular ultrasound means as a treatment and it doesn't appear as a subject. Please advise, thanks.

Talk about intravascular ultrasound? Happily. :)
You may have seen the abbreviation for it which is IVUS. IntraVascular UltraSound. It's a technologically marvelous tiny ultrasound device that goes within the vein during the procedure, so the IR gets ultrasound images from within the veins. Within the veins is where the problems are (intraluminal abnormalities being within-the-vein abnormalities).

IVUS can be used to distinguish between septums or valves, so as to get a more accurate diagnosis, and to distinguish between fixed stenoses that require treatment and physiological stenoses that only appear during some stages of respiration, thus not requiring treatment. IVUS might also find stenoses that are missed during conventional ultrasound, MRV or catheter venography. It is a great complement to the xray images of catheter venography. And perhaps most excitingly, it can be used to measure the precise area (CSA) of the vein which means that the selected balloon is more likely to fall into the goldilocks category of not too big (to cause vein injury) and not too small (to cause underdilatation and improvements that only last for a week) but just right.

It is not a treatment of its own but a tool that is used in conjunction with catheter venography/venoplasty. There are not many doctors using it, perhaps because of inexperience with its use and because it adds significant cost to the procedure. (One-time-use IVUS catheters are approximately $600, and the IVUS machine itself is approximately $100,000, and often a clinic does not have the machine.)
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Re: Stem Cell Breakthrough including better CCSVI results

Postby milesap » Sat Sep 29, 2012 8:39 pm

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Re: Stem Cell Breakthrough including better CCSVI results

Postby drdregen » Tue Oct 02, 2012 4:29 pm

DrS,

Then we were simply misunderstanding one another. Thanks for the clarification and I whole-heartedly agree with you. Many operators show an astonishing lack of either competence or regard for the patient when it comes to endovascular interventions, let alone follow-up interventions at intervals on the same patient. I’ve even had one well-known IR admit to me that he can now tell which patients will restenose soon after their venoplasty! Another well-known operator has promoted 'serial' venoplasties for patients who restenose (on YouTube, now removed). So with knowledge that permanent damage is a possible adverse outcome of even a single venoplasty procedure, best practice standards and protocols must be established before the entire MS patient population is talking about venous grafting. BTW...the same operators’ names keep coming up in conversation, I am sorry to say. And I know that you share my same grave concern.

I am intimately familiar with Dr. Brazzini’s research and refer to it often. He is also a fellow member of the ICMS and I am using his research as benchmark data (among other studies). Yes, and unfortunately, we take big risks with colleagues when we step out of line don’t we? As you are all too aware, it will take some time for the work of the ‘outliers’ to move toward the center, or vice versa.

The comparative outcomes you mention are in fact part of my current project with the ICMS. I have only preliminary data to compare the combination therapy protocol to infusion of stem cells alone or venoplasty alone, and so far the results have indeed been exciting. But I do not wish to quote numbers here lest I be held to some sort of accountability. No, stents are not used. That’s the whole purpose behind the super-selective infusion of stem cells intraluminally; providing stability to the vein without need for a stent.

I’m glad we were able to clear the air. I do have respect for your work and the cause you are leading.

DrD
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Re: Stem Cell Breakthrough including better CCSVI results

Postby NHE » Wed Oct 03, 2012 2:20 am

drdregen wrote:No, stents are not used. That’s the whole purpose behind the super-selective infusion of stem cells intraluminally; providing stability to the vein without need for a stent.


One question regarding the intraluminally delivered stem cells, wouldn't they get carried away by the patient's circulation? Do you do anything to impede their dispersal or to help ensure that they adhere to the area of the vein that was ballooned?
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