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.
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 .
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!
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.
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!
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.
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!
Hi Hunter, I know this is probably new terrain for you and your daughter. One thing I can tell you from direct experience, this site is a treasure. Believe me, I’m not a big fan of tech/social medias, but had this forum existed 50 years ago, it would have been a fast easy way for me and my family to get questions answered and issues addressed.
It’s not meant to replace medical expertise from doctors and the info on insurance is probably not great b/c input is from all over the world.
But besides that, you can get amazing info here, usually based on personal experience. That’s the best there is in my humble opinion. Also you can just vent here. I’ve done that myself because there’s an emotional component to this journey and you should avail yourself of any support you feel comfortable putting out there in the Forum. It’s totally safe as far as I can tell and in all my time here, I only remember one negative character out of hundreds. (The moderators are great at what they do.)
Please make the effort to keep us updated here on your daughter. I can’t explain why but people here, myself included, just start to care about others like her, because we’ve been through it and know how scary it can feel. Best wishes, Greg
Hello Greg. Thanks for checking in. We’ve got my daughter’s plan written and one of the two MDs involved has signed off on it. Now just waiting for the powers that be at the regenerative medicine clinic to submit the plan to the FDA for approval. They’re busy and my daughter’s case is something they’re doing outside of their daily scope of responsibilities. So, we patiently wait. The plan calls for monthly treatments in Houston and we can’t wait to get started. We started exploring nine months ago and we are definitely closer to it happening, but patience is definitely a virtue.
The MD mainly in charge of her program is having her do several things in preparation to give us the best chance for positive results and some of these things may be valuable for AVM survivors out there. First, he’s having her eat daily this special yogurt that we make at home combining the ingredients with non-homogenized milk we have to get from a local farmer at $10 for 60 oz bottle. She’s been eating it for a good month or more now and whether it’s related or not, she has begun to have feeling in her left hand. She can now feel pain and though not able to identify exactly which finger is being touched she has feeling that wasn’t there before. She can also feel with running water whether it’s cold or warm, or hot! He also has her eating a keto-based diet trying to cut out as much sugar as possible and eating a high fat, low carb diet because he says the brain is almost all fat and I guess for healing somehow it correlates. A third thing in preparation that may very well yield its own results of regained function is hyperbaric oxygen treatments. I think it’s a God thing because there ends up one being two miles from our house. She starts those the latter part of April. It involves breathing in pure oxygen in a monitored and pressurized environment. For a treatment she’ll be in there for an hour at 1.5 times the oxygen rate we live in every day. It allows the lungs, and thereby the blood, to absorb significantly more oxygen. This process is said to oxygenate all of the tissues of the body to restore normal function. In a lot of clinical studies it has demonstrated that it enhances the body’s innate ability to repair and regenerate. Nothing will happen with a few treatments. This will require 20 or more to see anything we’re dreaming about but, though not cheap, at $200 per hour it’s something we’re going to do as this MD is instructing. And multiple treatments a week is ideal hopefully never missing a week to take advantage of the brain changing with the increased oxygen.
The NP at the hyperbaric clinic has seen some amazing results in her time there. People regaining the ability to walk, to walk without a walker or cane and she strongly believes the fact that my daughter is still so young there is the great potential for regained left arm, hand and finger function with these oxygen treatments alone. It’s all about reducing inflammation in the brain in preparation for receiving the exosomes. He says if we don’t get any immediate results after the first treatment that we should administer future treatments via a nebulizer. He says it’s the most immediate and effective way for them to cross that blood/brain barrier. In theory it makes sense. In summary, the journey continues and we’ve been introduced to some amazing people that all hope my daughter can be some sort of eye-opening case to the world of stroke recovery. It will definitely be treated as her own “study” with the results and progress documented well. We’re hoping for this next stage of the recovery journey to be very fruitful for her. Thanks for everyone’s support.
Hi Hunter, Any progress probably feels huge when it comes to regaining her sensations.
Like you said, it all makes sense and maybe it is “a God thing”
As an added bonus you’re helping others with “her own study.” Keep up the good work and I’m pulling for her and you. Be well, Greg
