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AVM Survivors Network

Article about the Stem cell clinical trials going on for Stroke and TBI in USA

@Angela4 thank you so much please keep myself and all of us updated! But I just hope they moving towards phase 3 soon for AVM patients you know? When I had my first procedure, it was embryonic cells and I had benefited but I fell :/… Then I suffered having a tumor too… Lol I’m fine now and overcame but I guess I won’t make the same mistake twice and somehow go through the modified adult stem cell route this time around. Know what I mean? But please feel free to respond at your earliest possible convenience!
Kidus

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@DewmasterDuce No problem. - Wow so sorry you fell after you got the embryonic cells. I have had a few falls myself - not fun. Good news - They are almost done with phase 3! I believe the final paper will be published in October of this year. I dont have plans to see my stroke dr and hopefully I dont ( knock on wood) - But I do see another a dr he trained who is my pain neuro who does see him. I am not sure if she will have an update when I see her next month or not cause she is taking a month off and is just coming back when I see her. But I will ask. I see her every three months -
Angela

@DewmasterDuce Well Artem found an article that Japan has green lighted the stem cells ( same trial same stem cellls) they only had 2 clinical trials - looks like they intend to have it to market by Jan 2020 - So hopefully the FDA fast tracks it as well - Keep your fingers crossed- https://www.biospace.com/article/releases/sanbio-announces-sb623-regenerative-cell-therapy-for-traumatic-brain-injury-has-received-ministry-of-health-labour-and-welfare-mhlw-sakigake-designation/?fbclid=IwAR19FIeFL0reylcalah4--BaLDyUq2CObKXuULwfpQ1ctIkHA234huWKcOQ

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@Angela4 firstly happy birthday if you’re the lucky gal today! Um okay so I’ve been digging and I’ve noticed haven’t they only had studies and trials both in the US and Japan I thought have been on ischemic strokes but if I’m wrong enlighten me cause I may be wrong too. Conversations from Dr. S and Stanford said that modified Sanbio stem cells have a very similar effect on humans even with Hemorrhagic strokes but that was discussed on May 31,2018. Cause I’m about to hit 5 years at the end of the year and still have movement but it’s weak, I need anything that best helps bring back my left hand and arm but there’s some spasticity hindering me from getting my left hand/arm motor function (the sensory function I have though) back?! Ang or anyone?! But nonetheless please feel free to respond at your earliest possible convenience!

  • Kidus

@DewmasterDuce the studies have been both in Japan and the USA, and only on Ishmetic and TBI victims.
What my Stroke dr said was once approved it would be up to each dr to decide to apply to say AVM victims . He said personally he would see no reason not to. But then when I asked him for a patient like myself who has pain leftover from my CVST stroke and another stroke during my first embolism and weakness from them he said no because at present there was no data to support it would help.
As I know many AVM victims have pain also I hopeful once they start doing these for AVM victims it will show the data so it can provide further relief .
Hope this helps

@Angela4 Sorry I’ve just been struggling with the best tips and solutions to reverse this paralysis so I could play my guitar again :/. Ok so haveve there been any updates with approval in the US and Japan?? Please feel free to respond at your earliest possible convenience Ang!

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@DewmasterDuce It looks likes the US has just completed the 3rd phase and we should hopefully see a write up soon. I did hear that in Japan they are requiring another phase they had only done 2 phases.
http://www.strokecenter.org/trials/clinicalstudies/study-of-modified-stem-cells-sb623-in-patients-with-chronic-motor-deficit-from-ischemic-stroke
Angela

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this has been going on for years - http://www.reneuron.com/ or https://pisces3.org/

=CLINICAL RESEARCH STUDY
of stem cells for patients with ONGOING DISABILITY following STROKE

Thing is though, that AVM type has not been possible. Ischemic strokes as i remember.

Thanks man you made my night with the response! So would you know how long the fda approval process itself generally takes though?? As Ang originally mentioned, their are definite possibilities but once it’s approved, it’s up to the Neurologist to do it or refer you to the right person to get the transplant/surgery or injury @Rich2. Which one do you think will be approved first? Cause from the progressive work they’ve been tirelessly doing we will probably get fda approval in the US first now. Lastly, please keep me updated and posted Ang, I’m gonna search YouTube to see if Dr.steinburg himself who specializes in AVM’s from Stanford has posted any updates too.

@Rich2 it just might have to be an out of pocket expense but when I’m your proof or others who’ve done other stem cell operations that after a couple procedures within months I was trying to relearn steps… Two more important questions I had for anyone was whether 1) after the sb623 cells are transplanted around the damaged area kind of shrinking/reversing the affects of the original stroke damage (which I learned from Dr.Steinburg’s finding’s), does it restart circulating blood around the effected area that was reversed too & is there any links where it details that? 2) @Angela4 & everyone I’ve found out that Epidural spine implant stimulator and stem cell procedures maximize everything and give you IL-6, meaning it offers a rejuvenating/regenerative affect on the body as a whole. I know you’re thinking the implant is for SCi but it’s also for anyone who had fallen or also has a thinner injured affect on there spine.

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@DewmasterDuce It looks like for normal FDA approval is 6 to 12 months - and also I think you know but wanted to mention that Dr. Steinburg is the surgeon that did all the surgeries at Stanford for the study.
Many of the drs at Stanford also work at the Palo Alto Vets hospital as well. I really hope this does get fast tracked so this will help so many people. I know initially my Stroke dr thought Japan would be ahead of the USA but since they are now requiring a third round it will look like the USA will be ahead . What I find so interesting is the stem cells die off after a month but the healing continues well after so clearly the healing is going on- Hopefully when they publish the papers we can read all about the neat science- It does look like they have secured who they are going to use for TBI Stem cell I found this article - I know that also they were having trouble finding TBI patients cause you had to be able to confirm yourself that you wanted into the program. I know I gave them a referral of policeman who had been hit by a car and was a TBI patient and was able to give consent.


Angela

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Hello, everyone!
@Angela4, any news on https://clinicaltrials.gov/ct2/show/NCT02448641?term=Actissima&rank=1 ?
I am very glad that this topic has been so actively discussed lately

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I just read it thoroughly, oh my GOODNESS @Angela4! That’s amazing, by the way, yeah I know he’s the leading chair head surgeon at Stanford, I was simply saying like one of his specialties that he’s most knowledgeable about are Brain AVM’s as well as Spinal AVM. But I know just keep us updated as soon as fda clears the approval queen! Oh 1 question I really wanted to know after the sb623 cells are transplanted around the damaged site area, kind of shrinking/reversing the affects of the original stroke damage, does it restart circulating blood/ new blood flow around the same effected area too & is there any links where it details that? Thank you so much for keeping the community/family updated nonetheless :pray:t4::100::crown::trophy:

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Hey @Angela4 and everyone here, if anyone can find and/or tell me if stem cells transplanted or put around the effected area shrinking and reversing original (from what I’ve been reading) damage does that mean blood flow that was I guess neurotic will start flowing again?

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@DewmasterDuce Hello I see my pain neuro later this week she works with my stroke dr who worked on the stem cell clinical trials and hopefully she will know - I will ask her and get back to you-
Angela

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@DewmasterDuce
hello so just saw my pain neuro and she said did not have an update -she didnt think the final paper had been published yet either and referred me to me stroke dr sorry guys… Hopefully this will put a reminder in her brain so next time she sees him she can ask him. I will see her again mid Jan.
Angela

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Awesome Angela just please keep me updated on what the doctor says please!! Cause it’s a very important question I wanted someone to find the answer to and I think she’ll have that exact answer Queen. Thank you and try not to forget though!

Just popping myself onto the thread for future reference. Will be 2-3 years but will be having a good read and keeping up with progress ahead of that. Thanks for the information @Angela4 and I’ll be keeping an eye out for any updates.

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Hey guys!
Just wanted to check up if there’s any new stuff involving clinical studies, FDA approval, the stroke doc at Stanford?? By the way @Angela4 I’ve been reading on Dr. Steinburg and it’s interesting he normally specializes in AVM and Spinal AVM procedures! Idk if thats in regards to people that suffer brain AVM’s and Spinal AVM’s with a little reading! Try to keep me updated if the sb623 cells also regenerate/rejuvenate blood flows in or around the area of original injury? But no rush. Someone gave me good news saying yes but I just wanna be sure. For me I’m just thinking like if their any certain trials currently for Hemorrhagic strokes and involving sb623 cells like the link @Artem provided which recently ended. I myself don’t know what I should fill in when searching on clinicaltrials.gov, I was surprised that he had found it. Please feel free to respond at your earliest possible convenience.

So @Artem from the info from the study link you provided, does that mean mesynchemal sb623 stem cells are best in our case or the adult sb623 stem cells are better in our case??