Exosome therapy for post-stroke AVM continuing recovery

I haven’t seen anything on this site about anyone trying exosome therapy for regaining lost function of a limb after AVM surgery and rehab. It is a very new and groundbreaking area that seems to hold promise, but too new for there to be any real studies or data on outcomes. Has anyone on here studied exosomes and considered being a “guinea pig” to see if there could be any magic improvement from the neurovascular exosomes reconnecting lost neuro pathways? My daughter had a massive AVM rupture and stroke in August 2021 and after nearly two years of rehab still has no use of her left arm, hand and fingers and walks only so-so.

Any experience and/or knowledge anyone has on this site, mods included, about exosome therapy would be greatly appreciated. Thanks and I look forward to the community’s replies.

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I don’t recall any conversations involving exosome therapy, but do know there is a lot of research associated to stem cells in treating a variety of brain injuries. It would make sense that exosome therapy may be part of that research. I did a couple quick queries and found this quite interesting:

Exosomes, unlike stem cells, can break the brain-blood barrier. This makes them more ideal in the treatment of neurodegenerative disease or conditions .

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Yes, JD. That is one of the most intriguing aspects of exosomes and hopefully their ability to heal the brain and reconnect neuro pathways. Not surprised to not see anything here about it with it being so new. We’re probably 10-15 years from FDA approval as slow as they move. My daughter wants it now, of course, so we’re exploring places that do them. Not a whole lot out there. Thanks and have a great day!

Hunter22

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would like to follow this topic. Also interested in such therapies, but havenot seen ANY positive feedback after them. only studies and promises(

Welcome aboard, Artem. I will post here as we continue on our journey to try and get some for my daughter.

Hello @Hunter22 ,
I think this sounds really valuable to know about. Apologies and please ignore this if I am saying things that you have already done but I did a few searches and have come across a research group headed by Dr Pascale V Guillot at University College Hospital London (www.ucl.ac.uk). Unfortunately I have no further knowledge but perhaps there might an opportunity to discuss questions and maybe get further recommendations.

Hey talloak:

Thanks for your help! Can’t find a lot on the guy, but he is definitely involved with exosome therapy. Will keep digging and don’t hesitate to forward along anything you find out anywhere. Thanks again!

Are different countries quicker? Greg

I think so, yes. But no one seems to be very far along beyond with exosomes with regard to stroke recovery. Unfortunately.

We are in the process of getting my daughter lined up for exosome therapy in Houston hopefully end of December, but if not then soon thereafter. We have to file a “necessary use” document that is costly because exosome therapy is not yet FDA approved. And the organization that will administer them to my daughter is involved in research, so they’re paying the $6K for the billions of exosomes that will be put in her via IV to see if any pathways start to reconnect from her brain to her left arm, hand and fingers. Could be groundbreaking, could be nothing or something in between. We are cautiously optimistic and if there are positive results rest assured I’ll be posting about it here.

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Hey, it goes without saying, we hope it goes well.

Richard

Thank you so much, Dick.

how did it go? any news for now ?

Hi Artem:

Thanks for checking. But we’re still in the process of putting together the plan to submit to the FDA for approval. Looking like it may be a recurring monthly treatment for her, which would be great, especially if there are positive results. Keeping fingers crossed for a plan completion and quick “necessary experimental use” clearance from the FDA.

Hiya Hunter, How’s your daughter doing? I’m assuming my usual role here-- someone who knows very little, and readily admits it. That definitely goes with exosome stuff.
But because I’m officially an old fart (64), I do have some insights. I couldn’t tell how old your daughter is but I do know that hope/courage can be the greatest weapon in a teenager’s arsenal.
And never underestimate the “placebo effect.” If she believes that therapy works/helps, then, in my humble opinion, it’s probably worth the money. As you’re finding out, this AVM journey can get rough and any way you can give her a psychological boost is good. Best wishes, Greg

Yes, Greg. I agree! She is 22 now and she’s anxiously waiting for the chance to get them and we’re all praying for good results. Thanks for your well wishes!

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