As some as you know my Stroke Dr head of stroke at Stanford is part of this clinical trial.
When I spoke to him recently he said the trials would be completed Sept 2019 and then awaiting FDA approval.
More results will be published in the spring regarding the stroke patients they only used patients with ischemic at least in the Stanford pool ( its a Nation wide test -USA) so no one with an AVM type of stroke etc. But he said once approved it would be up to the neuro to apply to someone with paralysis from a bleed from an AVM.
I need to read this yet but I think it is of such interest that I’ve moved it to the AVM 101 category so we can all find it more readily. As you learn more, do keep this thread updated.
Hey there, I apologize for taking so long to finally connect with yall. This is awesome hearing the news about stem cell clinical trials for our condition, please let me know as soon as you have updates cause I know a good amount of info on stem cells. LETS COMMUNICATE we’re a family, a community of survivor where many don’t survive… let’s take heed to this blessing and make a difference! Message me if anyone and I mean anyone on here wants to talk. In regards to your thread, I did a stem cell procedure in Florida a while back after I graduated from high school and it was helping but then I kind of have a tough situation after suffering a fall… I’m fine now but I also have a bit of a complication with my spine and only my right arm is functional but that’s all temporary and I’m still wheelchair bound just for a short time. So people if anyone gives me info on Stanford and/or the clinical trials theatre soon coming please let me know, I can travel anywhere too. Please feel free to respond at your earliest convenience!
Kidus
Hey whats up! So I had a question, I was wondering if anyone had a better idea on any articles detailing what type of stem cells would be best for reversing paralysis? And if normally one procedure is all you’d need or more than one procedure would be the best way to go? PLEASE let me know as soon as you get the update Angela!
@DewmasterDuce It looks like from the clinical trials that are going they are using stems cells from Transplanted Modified Bone Marrow at least for the USA clinical trials and I pretty sure the same for Japan.
I did see that there is something published for the clinical trial in June but I cant access since I am not a researcher but I am going to ask a friend to see if she can for me I am going to see her next weekend. Here is a PDF of some more info from 2017 https://svn.bmj.com/content/svnbmj/2/2/59.full.pdf
Angela
@Angela4 okay awesome but are they like the embryonic stem cells, or what they call IPS (modified induced pluripotent stem cells) or modified adult cells maybe? Cause those are the type of questions I’ll pass the messages to when I meet with the Neurologist who specializes in stem cells. But I’ll definitely check those out too Ang thank you! Lastly, I was confused cause I don’t get if in our case it’s something injected in the weak arm and leg directly, or it’s a procedure like I did where somethings injected in the brain cause I dont know if what I did was wrong or not? But please feel free to respond at your earliest possible convenience!
Peace and Thanks,
Kidus
@DewmasterDuce They are definitely adult stem cells if you look at pdf paper it goes into details about the type of stem cells used for the trials .
This clinical trial was national and was over 3 years and is also being done in Japan.
They are directly placed in the brain via brain surgery.
It’s a double blind trial so even the drs don’t know who is getting the stem cells .
It was done on reg stroke patients and TBI patients that had paralysis within a certain age range.
I
Angela
@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
@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
@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!
@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!
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.