@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.
@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
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
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
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?
@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
@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
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.
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??
@DewmasterDuce Hello Sorry I havent been on for awhile. Was having major migraines - Yes Dr Steinburg is the neurosurgeon at Stanford that people go to for AVM craniotomy surgery. I have heard great things about him. I had a embolism so that is with Dr Marks at Stanford who founded the neuro radiology dept at Stanford. My Stroke Dr is Dr Schwarz at Stanford who is also part of this clinical trial. I dont have a reason to see him but when I did the first phase was complete and the second part was happening. He said it was going well. I think with COVD that everything has been delayed. My youngest sister checked via her hospital access on the clinical trial and also could not see the results - I can tell that they had 163 people in the trial and the last update was April 2020. when I did speak with my stroke dr about when it was FDA approved and if I could get the stem cells - he said no because there is no data it helps with pain which is my major issue and weakness. But he did say it would be up to each dr after the FDA and then I asked about AVM people who had a bleed/stroke and he said yes he would . So I told him well then you will be gathering data cause many of us have pain as well. So I am hopeful that after the FDA approval and after enough AVM people have it - it can be used to help with us that have Centralized Pain Syndrome from our strokes. You can always just put in key words in to the clinical trial and it will pull up the ones and tell you if they are looking people or not. I found this one but its not yet recruiting https://clinicaltrials.gov/ct2/show/NCT03371329?term=stem+cells&cond=Hemorrhagic+strokes&draw=2&rank=1
Hugs Angela
Hey All,
Stem cells… we already have them!
I’m 6 years out from an AVM rupture near my thalamus, and I have residual symptoms of course. Before that, I had been on a journey to learn about healthier ways to eat and to lose weight I’d gained while taking an antidepressant. It started in 2004, and 16 years later I am still learning and fine-tuning. The latest changes I had made before my stroke were juicing with lots of greens, and switching to healthy fats. I started this about a year before my stroke and was fairly consistent but not strict. I also continued with all the other dietary changes I’d made. There are many other things that I feel have benefitted my health greatly. I often wonder if my outcome would have been much worse if I hadn’t made those changes. I guess I will never know.
As far as the stem cells. About 3 years ago, I started doing keto, and then I added in some fasting in the last year and a half. I learned that fasting for a certain length of time activates “autophagy”, which means, “self-eating”. We all have stem cells in our fat cells. But, they are never released due to the standard American diet that most of us eat.
So, first off, your body needs fuel. You can use either glucose or ketones for fuel. The standard American diet is way too high in carbohydrates, so we eat… all the time. Our source of fuel is a non-stop stream of glucose. So, our bodies recognize this and stop making the enzymes required to break down fat for fuel. Therefore, we can’t access the stem cells that are present in our fat cells.
When you ease into a ketogenic diet, your body realizes that it can’t count on that constant stream of glucose anymore, so it’s forced to make some changes. It begins cranking out the enzymes needed to burn fat for fuel. It can take up to about 14 days to get up to the appropriate levels. Once you’re in ketosis and maintain it for a while, you become “fat-adapted”. This means that you can use glucose and stored glucose for fuel, but when it runs out, you automatically switch over to burning fat for fuel.
Once you’re fat-adapted, it’s much easier to begin fasting. Once you start fasting, you can work your way up to longer and longer fasts. Your body begins the autophagy process after 18-20 hours of fasting and the greatest benefit is at 48-72 hours. During autophagy, your fat cells release stem cells into your system in response to fasting. It signals that there’s no fuel coming in, so it needs to make the body work as efficiently as possible. So, these systemic stem cells wander around your body to clean things up. They “eat” old cells, damaged cells, and poorly functioning cells and then recycle usable parts while excreting what’s not necessary. You can then create new healthy and efficient cells.
It’s also important in all this to eat healthy. Removing toxins and removing toxic foods from your diet is a must for us and our damaged brains. Juicing is a great way to get lots of good, concentrated vitamins, minerals, and micronutrients. Adding healthy fats and removing unhealthy fats from your diet is also extremely important. Your body uses fat and protein to make new cell walls and all the organelles inside. Your brain is 60% fat. If you’re eating unhealthy fats, your body doesn’t recognize them and can’t use them to make healthy cells. If your cells aren’t healthy, they can’t function properly. If they don’t function properly, your residual symptoms may be worse than they should be.
With us having damage to our brain cells, it’s so important to eat healthy and fast. When I consistently eat this way, I notice a big difference in my symptoms and the length of time it takes for my head to “crash and burn”. Sometimes it’s a struggle when my head isn’t in a good place, but I try to take enough time to rest and then get back on the wagon with juicing and eating healthy.
So, I’m not sure if there’s a need for stem cells to be injected if we can access our stem cells with dietary changes. Just some thoughts if you’re interested in a possible answer when so often there seem to be no answers.
I enjoyed reading this! I have not gone true keto but have reduced my carb intake by an estimated 70 %, largely by changing my plate, more protein and veggies, far less pasta, breads etc. I also do some low level fasting and by that I mean I try to reach 10 hours between in take of supper and breakfast. Might not seen like much but is a big change for me. I think it has made a difference for me, wasn’t a huge change but noticeable. I think the secret is finding something that works for you, is sustainable and for me, balanced.
My days of carb loading are over! I made this change to my diet, upped the level of exercise and tried to get more sleep, things that are within my control most of the time. Now you have really spurred my interest to look into the diet and stem cell connection. I had never heard of that but will be doing some reading! Take Care, John.
That’s great that you’ve cut your carb intake. Our bodies respond to all those carbs with inflammation, and inflammation is the root of many of our modern day diseases. Jason Fung wrote The Obesity Code, which has keto and fasting info with explanations on how it works and how it can heal. He also has a Facebook group that has keto and fasting info and a network of people trying to lose weight and heal themselves of diseases brought on by diet and environment.
Don’t forget all the other toxins and unhealthy items to remove:
- Buy organic
- Eat Non-GMO
- Eat organic, free range meat
- When eating beef, choose organic, grass-fed beef.
- Eat nothing ready-made or prepackaged
- Do not use margarine or soybean, canola, safflower, sunflower, corn oils
- Read labels on vitamins and seek out those that are made without soy and chemicals and other nasty things
- Stop using mainstream deodorant/antiperspirant (I use the Crystal that you wet in water and apply)
- Don’t use candles, air fresheners and commercial cleaners. (I mainly use vinegar and water to disinfect)
- For women, stop wearing padded bras, limit make-up and hair dye, limit smelly lotions and soaps - use naturally made products with real essential oils, and avoid essential oils made with chemical fragrances
Top things to add:
- Healthy fats
- Olive oil, coconut oil, avacado oil, Kerrygold grass-fed butter
- Walnuts, pecans, and Macadamia nuts. They’re highest in fat and
lower in carbs than other nuts - Grass-fed beef, avacado, salmon and other fatty fish, eggs, flax seed, sardines, grass-fed organic cheese
- Lots of leafy green veggies and limit amounts of starchy ones like potatoes, corn, peas, beans
- Organic bone broth
- A few solid vitamins
I know what you’re thinking. “I can’t afford to eat healthy!” That’s what I used to think also, but I’m actually saving money by eating fewer carbs and by fasting. In maintenance mode, I only eat 1 meal a day or maybe 1 1/2 meals. The worst part is psychological after 50 years of eating garbage. They taste so good! And I used to eat all the time! So, going from 21 main meals a week to 7 meals a week means that I don’t have as many meals that are yummy and used to make me feel better, or so I thought. Now I feel sooooo much better with healthy eating and fasting.
It’s not as hard as it sounds, and once you get into these better habits, it’s much easier, less costly, and less work to shop/cook/clean up. There’s so much other detailed info, but my head is about shot, so I need to stop for now. If anyone is interested in making changes but doesn’t know where to start, I’m willing to help, so just message me.
Love the Kerry Gold Butter even my cats prefer it. I cant believe how many people are still using corn and veg oil - I also wont eat anything with Palm oil which is used in so many things cause its cheap but its killing the habitat for the orangutan- Girls Scout cookies have them and one of their own troops did a story about it trying to get them to change it for a badge- We need fat and protein for our brains and esp to heal and stay healthy. Its natural as we age for our cholestrerol.
Whats up @Angela4 so have you talked to your Stanford Neuro Doctor lately about the study (despite the “Coronavirus chaos” we’ve overcome lol)??
I actually got to talk to a staff member at Mayo Clinic which has a stem cell study for hemorrhagic stroke. They were saying that “It’s just that for this study if the bleeding is caused by an AVM, cavernous malformation, tumor, or aneurysm (among others) they are not adding these patients to the study.” She never could answer why we differing AVM survivors wouldn’t be eligible though!!!
Hello @DewmasterDuce No I have not seen my stroke dr in two years and it looks like they wrapped the study. When I first learned of the study I wanted in and he told me no because I wasnt old enough which I thought bogus. Then he said it was because I did not have enough movement issues. But then UCSF was also doing the same study so I applied and put all my issues including my DAVF and got in. When I spoke to the staff on the phone it was going to be the AVM guru Dr Michael Lawton doing the study and I said Are you sure I am okay to the study cause I have a DAVF and they said yes…but then a few weeks later they called and said no -
I have found the write ups for the stroke and tbi studies - It looks like the lschemic stroke study showed improvement but the tbi study did not but noted that the TBI patients were not always conscious which is interesting because when I initially spoke with my dr he told me that they had to be awake - cause I there was a friend of my cousins both police officers and he had been hurt badly and was considered a TBI patient at was at the time not conscious but then he was so I emailed my dr he information to get him into the program.
I did ask his my pain neuro who studied under him and usually sees him but with covid she has not gone to the main hospital so she had not heard anything- her clinic is in another city and they dont see covid patients.
Here are the papers which are interesting reads esp the visual of the brain scan in the stroke patient in this first paper
Here is the second paper on the TBI
Then I was searching some more and looks like there are looking at stem cells for dental
I am pretty sure with COVID that they had to stop with any more research of this sadly - they arent even doing infusions at Stanford now even though we are in yellow - Hopefully we open back up fully in June 15th - I probably wont see my stroke dr until next year, If nothing " new " is happening in my brain I see him every 3 years for a check up and a scan. It does look encouraging for stroke and I will be interested to see how long it lasts - Its weird that the stem cells only “live” for a month but some how continue to help.
Thanks for pinging me so I could find the information
Angela
Hello I saw my stroke dr yesterday at Stanford and asked him about the clinical trials regarding stem cells for stroke and TBI . He said that the TBI showed positive results and the stroke did not which I thought I read the exact opposite, but maybe I read it wrong.
This was with a Japanese company.
Now Stanford is doing their own clinical trials with their own stem cells with 30 patients.
The neuro is the neuro surgeon who does the craniotomy’s at Stanford.
Looks like they are in their second phase. I am going to see if my sister can pull any info more since she is a dr at another hospital.
Angela
If this works it can be life changing. I hope it does.