Hi Everyone. I was wondering, How many of you here have taken part in a clinical trial study with mesenchymal stem cells ( stem cells from your own body) to treat the damaged part of your brain after a stroke caused by your AVM? if so what procedures did you go through? how was the result? are there complications after the injection? What’s the success rate of the trial? are there precautionary measures before the study to prevent any complications? Are there any improvements in your mobility and overall function after the injection?
I hope this isn’t too much to ask. I am interested in taking part in a study but I want to make sure that it’s completely safe first. If you guys have done a clinical trial please share me your experience. I want to know what the overall outcome is. Thank you.
Great questions here. Unfortunately, I don’t have any answers, but I will be watching this to see who else does. Just had a curiosity would you mind sharing with me who is providing the study?
I have read studies about this before, but there aren’t many scientific papers written.
Thanks in advance. I understand if you’re not able to share because of an NDR or something.
i never encountered an opportunity for a clinical trial before. However, I got the offer to undertake stem cell treatment at a private clinic in Germany where the stem cells used for the therapy are derived from a placenta extracted from a sheep’s embryo. I never agreed to take part in it as any government medical surveillance does not govern it. If anything were to happen I could not sue them. I am looking for an FDA-approved trial that ensures safety after the treatment even if the effects are only minimally beneficial or nothing at all. I’d like to know if there are people here who have undergone such studies. I’d like to know the risk to benefit ratio for that study.
Ahh, sorry I see now. I can understand hesitance participation in that!
Would you mind sharing what your deficits are from stroke or AVM if you have had any?
I’m a left parietal/somatosensory cortex kind of survivor. I have a lot of tactile agnosia and hemiparesis on my right side. Visited several accomplished neurologists and all have different opinions on getting things back. I’m 10 years post stroke just about and always wonder about new treatments.
I see where Mayo Clinic had some noninvasive procedures they are working on.
From scarring & ischemic/hemorrhagic strokes I have a resulting epilepsy. It was once recommended that I use VNS for seizures. It’s interesting that they are using the same for upper extremity motor function in rehab.
I wish you luck in finding a study or others that are in a similar journey.