I went to Dr Tobinick last March and April with my husband. He had a stroke one year ago. There is no video of us because my husband did not want that. That was his choice. We had good results but you always hope for more but my husband had a big stroke. He improved because of the etanercept.
Of course this works! Our medical system doesn’t want people healed from the very profitable symptoms of stroke! 😢 Rehab and all of the hoopla around stroke victims are too profitable to give up! My husband has been paralyzed since March 2, 2023. I have spoken to Dr at the Boca Raton stroke center. He will see my husband but he’s not really well enough to make the trip! MedBeds will be available soon across the world 🌍. For all of you recovering from strokes and your spouse’s or families, there is hope! 🙏❤️ You will be healed soon. Namaste’ 🙏
my stroke was a year ago. the neural fatigue was the biggest surprise. i now know why babies must take three naps a day and just fall asleep wherever they are. programming or reprogramming the brain is SO energy expending!!!!
Why this treatment is not available World Wide with all these stroke patients who have recovered (watch and the patients testimonals on the INR youtube channel of Dr. Edward Tobinick and read the additionnal information following any video) ? The price per shot will go down only if the Etanercept treatment is offered World Wide in hospitals and clinics.
Is it that big pharma don't want to lose out on the money that's made when people have to take medication for the rest of their lives? This is the only thing that's making me so hesitant. Why isn't everyone raving about it.
I've finally found out why it is so expensive. There are at lest two generic that can the same as Etanercept Enbrel by Amber (Pzifer) and these two generic can not be spread in the US because of patent litigations ... which are less expensive but available at least in Canada and other countries. It's a Monopole issue as well by Amber own by Pzifer !
@@Catmafia5678 This is a one or two shots but it's quite expensive compare to two other generic that can replace the Enbrel Etanercept own by Pzifer which is exclusive in the US for patent litigation !
Thank you for this ! I have researched this treatment for a year and a half. I’m booked for The treatment in July and I’m feeling a little more comfortable with the decision.
Best wishes to you. I too have been exploring this procedure for about a year. I have the necessary paperwork in hand and plan to submit it soon. I will then have the consultation as to whether or not I’m a good candidate. Please keep us posted on your results. I personally would love to hear from you.
Thank you for the great video,my daughter had a bad stroke and is paralyzed on left side and we are saving every bit of money we can and will be going there for treatment if funds can be found as s soon as we can.
Thank you for this interview. It helps a lot to know about all the procedures that no one considered to do it before. One thing that I was really waiting to hear was how his mobility was after the shot. I may be wrong, but he only responded how good his leg felt when you asked him about his mobility I don’t know how he’s walking now. I hope he’s walking independently. Anyway, he will be back to where he was before the stroke eventually, because the scientific breakthrough in regard to stroke and the health care in general is very promising and good luck to him.
Pain dropped from 6 till zero with husband and etanercept in forida Boca Raton . My huisbrand had pain in shoulder , hip and knees. Took ocycodon - morfine but that did a little little tiny bit only . Now nothing anymore. Only blood thinner
I live in Mississippi, USA. I had a hemorrhagic stroke August 27, 2022, on a Saturday night. I couldn't walk and barely could talk. By December of 2022, I could walk with a walker, but my arm and hand hardly had no movement. Last year in 2023, I made some progress. I no longer needed a cane or walker to walk, though my right leg become stiff. However my right arm and hand still gave me trouble, but it's less spastic and tight than it was in 2022. Fast forward to today, and it's pretty much the same problem. Hopefully, botox will get my right arm, hand, and leg moving significantly. If botox don't quite cut it, I'll head to Florida to get the treatment. Just the same, I never doubted Enbrel for stroke recovery didn't work, but that price is very expensive😮😮😮😮😮!!!!! It's countless videos online to prove Enbrel does indeed work. However if if comes down to getting this treatment, so be it. I'll gladly spend all my life savings to get this treatment, no matter the cost. Yera💧.
@@BillGasiamis : Hi Bill, the price of Etanercept is a bit of a mystery , i guess using it for perispinal treatment could be the reason for its high price , as for it being used for arthritis its absolutely dirt cheap , in Australia the cost for resident with medicare card is only $30.60 cents with out card its $877.99 , keep in mind for $30.60 you will get 4 auto injectors with 50 mg of Etanercept now considering only 25 mg is used to for each perispinal treatment means there is enough for eight patients , not sure we are getting the whole truth why this treatment is considered controversial
@@BillGasiamis : i have spoken to many doctors here in Australia and to my amazement most have never even heard of etanercept or of its intended uses , they no nothing of it and that is disappointing , they know nothing of the two clinical trials done in Griffith University in Queensland or the extraordinary positive results
@@blurtbumit’s very common that our Drs especially GPs won’t know anything about it. Also it not approved here for anything other than Rheumatoid Arthritis so even if they did know about it they would never suggest it to much risk of getting in trouble by the Medical board. That’s why these podcasts exist so people like us can find out things that doctors don’t know.
@@BillGasiamis : Thanks for reply back Bill , another problem is getting messages through on YT, i sent one to you detailing actual cost of medication with some other info and it didnt get through , disappointing , i have the name of another interesting drug thats had one double blind trial with great results on TNF , just hope you get this then i will share info as i believe it will very helpful
Thanks so much for this video♥️ im so pleased for you. im in nz too, im a pension who was totally independent until i went to hospital 1.9 years ago, they gave meds that didnt agree with me, it made me violently sick and gave me a mini stroke. it didnt feel so mini!! ive been researching and watching videos on etenercept and the good dr tobinick. I want to go and try it for myself. I am used to travelling alone but feel it would be too hard like this. Could you please advise how long i would need to apply for a visa to get into america, and what to allow for accommodation costs?? I really just want my life back. Ive asked my dr about etanercept but he jyst changes thr subject, same with physios, no one wants to talk about it. The monthly stroke coffee group head said not to share it around, no explaination why. I would really appreciate any input you can give, thank you🌻
I do believe the travel visa is very easy to obtain and only takes a short amount of time. Your doctors and therapists won't talk about etanercept because it is not approved for stroke in Australia. The rules in Florida are very different.
Thanks guys. This is cementing my thoughts in having it done. If I was dr. T I would ask his patients who have had it done in the last fee years, to comment about how they are doing now? It is strange that you find so few comments talking about it years later after the shot?
I think it's because if you get good results like I did, you just want to get back on with your life. I doubt I will still be talking about this 2 years from now
Hi Bi).do you mind emailing asking, how long it took you to regain use of your left arm and hand?., I know all strokes are different. I just want some hope. Thanks
My left arm and hand always worked although not very well for some time. It was weaker and I was lacking coordination. Since 2014 the arm and hand are still weaker but getting stronger, and coordination is also largely improved. The skin on my hand is sensitive to touch and colder than the other side. Did you watch the episode with Dr Amir Hadanny? ruclips.net/video/lqsLY06cm18/видео.htmlsi=Bwkk2uN2h2G_YB4C
Hello Bill. I’m Steve from Nova Scotia Canada. Had a hemmoraghic stroke 2 years ago at age 56. High blood pressure burst a small vein in my right side of brain. Within minutes I was paralyzed head to toes on left side. I spent 4 months in hospital and rehab. Upon returning home I was walking albeit laboured and left arm and fingers started coming back. But when things started working it brought severe pain in buttocks- to toes, and arm and hand fingers. Docs said it was nerves retiring back up. 6 months later the pain continues to ramp up. Physio and strength training made it worse. Today 2 years post stroke my pain is extreme. Only meds bring that pain down a bit. My wife is American and very skeptical of this being the only doctor that does this?? The costs?? Extreme. The videos the doctor produces are all good news stories. However I have more of an open mind and I’m willing to give this a shot. I appreciate your interview with this guest. I look forward to knowing more about this. I don’t know if I have brain swelling? Here is what my doctor told me the other day… “There’s abnormality where I had the stroke, but what happens is when you add That it was a big one like I had, the nerves that come down from where that stroke happened end up degenerating, they are not getting a signal. That’s what showed up on the MRI That’s why I still have the symptoms I do on the left because some of those nerves are basically gone and cannot be regenerated”. Thanks. Reach out to me if you want to
I like that your wife is sceptical and at the same time you are looking for solutions together you will both be able to make an informed decision. I might be able to get you in touch with Andrew if that is helpful. Also check out this video. ruclips.net/video/lqsLY06cm18/видео.html and this one ruclips.net/video/_1MbqaOdcJ4/видео.html
Thanks for the thoughts and the links Bill. Unfortunately our health system here is great but backed up and huge delays and treatments like this are not considered here. Not even on radar. So when I discuss with my medical team here, I’m warned of the possible negative consequences that could come from this. Especially being a foreigner. I sent them a note tonight , I’m thinking I will hear back this week from them. Anyone else considering this treatment??
@@BillGasiamis Yes, I watched the whole video. I would like to see updates from more people who have gone through the treatment(s) to determine if this was truly helpful in the long run and what side effects resulted, if any. I wish the medical community will be open to do more studies to determine effectiveness and safety.
Im taking my mom in Sept. Each shot is $8400USD. They recommend 2, one week apart. And you can come for another one 6 months to a year later. I’ve been researching it for 7 years…finally decided to do it once my mom got covid and her stroke symptoms got wayyyy worse. (Supposedly due to inflammation in the brain)
Really helpful video. I've been look at INR videos and it's good to get an independent review of this. I wonder if the time between the stroke and injection makes a difference. Also looking at the videos it seems the shots are more helpful for return of cognitive functions more than for physical conditions like an nonfunctional arm. Did you find any evidence about this?
The time between the stroke and the injection doesn't appear to affect the effectiveness of this procedure. In terms of physical improvement, it could also be the case that when an arm hasn't been used for years, it requires physical rehabilitation in addition to the injection. The injection might be beneficial for the neurological aspect of the arm condition, but muscle rehabilitation is a separate matter.
Thank you. Just looking for solutions as my partner had the stroke last year in January and getting 2-3 times physio a week but the arm function hasn't returned.I'll check out the other video as well@@BillGasiamis
I wish there was a test to see if your defecits are due to inflammation or brain damage,maybe the more testing that is done with this and maybe if they seek fda approval
Has anyone heard about the results of the double blind testing in Australia? It was supposed to be done mid 2024? I would love it if US Medicare system would pick this up as one of the plans of action for recovery.
This is the most recent post about it. florey.edu.au/news/2021/08/the-florey-institute-examines-common-drug-as-new-stroke-treatment-in-the-first-large-scale-trial-of-its-kind/
My stroke was 7/3/2022, I had treatment at Dr tobinick 7/2023 two injections did not correct my systems! Still have left arm numbness . Dr only said maybe need more injections!
Yes I have congestive heart disease and renal kidney faluire of 73 persent current Dr says I was throwing up this weekend and I have bad neuropathy and ephsdema swelling in legs and feet do to me haveing congestive heart faluire. Why I don't need no problems or drama in my life I can have a stroke because I have congestive heart faluire and I swelling in feet and legs from my congestive heart faluire and me haveing neuropathy and emphedemia badly in my legs and feet I pray for healing in my body and health Felicia Gonzalez
what are you doing? I need information as to what I can try. the doctors are of no use. they have as little information as I do. however I am the one who had the stroke and suffering from the side affects. I"m in a position where I'm wanting to try a possible helpful treatment. where do I find what is available?
Have you been to Florida? If No , then please not give any advice about things you really do not know. yet. I went and somebody close to us went and both got results! Results that no physiotherapist ever good give us . Thank you !
In Australia trials were done at a Brisbane hospital funded by stroke victims and were very successful but permission was denied to use this treatment in Australia, my specialist said it was because it was opposed by big pharmaceutical companies . Etanacept is very cheap in Australia and has been used 4 arthritis 4 years so the pharmaceutical companies won't make any money. Something needs to be done but how do we get government to put people ahead of profit 4 large companies
A lack of of funding for research is one of the most likely reasons we can't use this drug for stroke survivors. It's a real shame because it would help surviors have a better quality of life as well as ease the stroke cost burden for the governemnt.
That’s the problem. Other than assessing the patient’s for basic health and their previous exposure to TB there is no other thorough understanding if they have areas in the brain that can be rehabilitated. One organization that does that type of testing is Aviv Clinics. They offer Hyperbaric Oxygen therapy treatments. Check this out. ruclips.net/video/lqsLY06cm18/видео.htmlsi=MFr3rEeyPLM9lxF9
Thanks, I’ll check that out. But I’m the meantime: I think I saw somewhere that there’s a 20% failure (i.e., no change) rate and there must be some common features in the brains of those who failed. Presumably they (INR) initially ask prospective clients for brain scans/imaging and interpretations of the images…?
He would have an opinion I’d say. Both are useful therapies. Before O2 therapy via a clinic like Aviv a patient will know if they are a candidate or not so there won’t be any unnecessary costs to find out if it works. Etanercept is a well proven therapy for RA but hit and miss for stroke and no one is assessing clients before hand.
@@BillGasiamis I asked some Neurosurgeon friends but they are not familiar w the specifics of the procedure. They know the work being done in Florida but there are no efforts to bring it over here in the country
Andrew - Thanks so much for sharing your dealings with Etanercept. I was curious about it and you took my thinking from it's fake, to it helps some! Bill - Thanks!
I wonder if anyone that had the procedure had any bad reactions or side effects, I just wonder if can in any way affect your general immunity to other illness in the future, if because how is applied can provoke another bleeding, or can in any way make things worst. After a lot of progress and with just “minor” problems left after the stroke you hate to do anything that could make things worst. Any advice/comment will be appreciated.
I have never spoken to anyone that had negative sides effects but that doesn’t mean there are not any. I am in a similar situation with my recovery. I have no noticeable deficits and the ones you can see although bothersome don’t stop me from living life. So i am in no rush to try an invasive medical procedure if the outcome will only mean small or marginal improvement.
Yes etanercept does effect the immune system which is why you can't have it if you have cancer or HIV or Hep or latent TB and it also has a small risk of potentiating cancer
I agree with you, its crazy how there is nothing outside the US either. Here is a place in Kentucky that does it. regenmedky.com/stroke-traumatic-brain-injury/
i too got this treatment knowing 20% get no result.Sadly i got little. mostly cognitive and balance improvement.Not mobility.I would like to get another shot but its not possible now
Hello @Alan, my husband is scheduled for a consultation with the clinic soon. Would you be willing to explain why it's not possible to have another shot now?
It does not target specific areas or deficits. It kind of works or it does not. There may be many reasons vision is affected after a stroke and they may not be able to be addressed by the procedure.
Because the drug is out of patent and pharmaceutical companies can't profit largely from it so they do not see the value. There is plenty of research with regard to its effectiveness for arthritis. Here is a document that you might want to have a read of. www.ncbi.nlm.nih.gov/pmc/articles/PMC4110406/#:~:text=Activated%20microglia%20release%20TNF%2C%20which,following%20perispinal%20administration%20of%20etanercept.
@@BillGasiamis thank you, I had a stroke about 2 months ago. We can find all kinds of videos on how this drug helps people right after the shot, but no long term results!
I haven’t met any one who has used HBOT but I recorded this interview about HBOT. recoveryafterstroke.com/the-hyperbaric-oxygen-therapy-dr-amir-hadanny/
We used HBOT for my daughter following her stroke. She had improvement following HBOT. She was also receiving occupational & speach therapy and her therapist backed up her positive results from HBOT with improvements she observed by testing.
@BillGasiamis HBOT was recommended by her neurologist at Duke University Medical Center in Durham,NC. She had some follow-up treatment after we returned home to S.C. That was when she was also getting ST & OT and testing for results from the ST & OT. My daughter had radiation induced moyamoya syndrome that was the cause of the strokes at 19yo.
I do see that it has merits and the medication has been in use for many years in the treatment of arthritis, but don't take anything I say as medical advice.
I've been looking into this for about 6 months now, I had decided that I was going to go to florida and try this. Thank you for doing this video🌻I just have to figure out how I get started. I too, can't afford to do myself. I am thinking that first I have to write up my story, do I put as much in as I can or do I keep it factual but short? Do I book an appointment before I ask for financial help? Do I list the costs for people to see? Can I mention that if there is any monies left, I would donate to a charity? ( If I was fortunate enough to raise enough) People can be so kind☺️ I would have to find someone to come with me too. Where do I start?? Thank you so much and I really hope you keep improving🌻🌼
First set up a funding campaign and then tell people about it start with your story, ie what happened to you then explain what you are trying to achieve by going to florida, www.givesendgo.com/ best of luck
Thanks so much for your reply. I am halfway to setting up the campaign, cost of flights, injections, accommodation. Can I please ask what to allow for Dr Tobinicks consultation and administration of the injection fees. I'll keep you updated on how things are going. Thank you
![NOSFERATU - Official Trailer [HD] - Only In Theaters December 25](http://i.ytimg.com/vi/nulvWqYUM8k/mqdefault.jpg)
I went to Dr Tobinick last March and April with my husband. He had a stroke one year ago. There is no video of us because my husband did not want that. That was his choice. We had good results but you always hope for more but my husband had a big stroke. He improved because of the etanercept.
Thank you for your comment all the best with the rest of the recovery.
Of course this works! Our medical system doesn’t want people healed from the very profitable symptoms of stroke! 😢 Rehab and all of the hoopla around stroke victims are too profitable to give up! My husband has been paralyzed since March 2, 2023. I have spoken to Dr at the Boca Raton stroke center. He will see my husband but he’s not really well enough to make the trip! MedBeds will be available soon across the world 🌍. For all of you recovering from strokes and your spouse’s or families, there is hope! 🙏❤️ You will be healed soon. Namaste’ 🙏
Best of luck.
my stroke was a year ago. the neural fatigue was the biggest surprise. i now know why babies must take three naps a day and just fall asleep wherever they are. programming or reprogramming the brain is SO energy expending!!!!
Is it getting better?
i was doing well then last week i had a second i am ordring a tray of etanercept
Why this treatment is not available World Wide with all these stroke patients who have recovered (watch and the patients testimonals on the INR youtube channel of Dr. Edward Tobinick and read the additionnal information following any video) ? The price per shot will go down only if the Etanercept treatment is offered World Wide in hospitals and clinics.
it's a great question, not sure of the reason.
Is it that big pharma don't want to lose out on the money that's made when people have to take medication for the rest of their lives? This is the only thing that's making me so hesitant. Why isn't everyone raving about it.
I've finally found out why it is so expensive. There are at lest two generic that can the same as Etanercept Enbrel by Amber (Pzifer) and these two generic can not be spread in the US because of patent litigations ... which are less expensive but available at least in Canada and other countries. It's a Monopole issue as well by Amber
own by Pzifer !
@@Catmafia5678 This is a one or two shots but it's quite expensive compare to two other generic that can replace the Enbrel Etanercept own by Pzifer which is exclusive in the US for patent litigation !
@@alsetpsm1373 I'm really getting tired of hearing that corporations are doing nothing to heal the public, but only covering their own bottom lines.
Thank you for this ! I have researched this treatment for a year and a half. I’m booked for The treatment in July and I’m feeling a little more comfortable with the decision.
Awesome. I hope you have a great outcome. If you would be up for it and like to discuss your experience please reach out.
@@BillGasiamis I certainly will do that,
Are you flying from Australia to US for the treatment?
@@phillusted7364Canada
Best wishes to you. I too have been exploring this procedure for about a year. I have the necessary paperwork in hand and plan to submit it soon. I will then have the consultation as to whether or not I’m a good candidate.
Please keep us posted on your results. I personally would love to hear from you.
Thank you for the great video,my daughter had a bad stroke and is paralyzed on left side and we are saving every bit of money we can and will be going there for treatment if funds can be found as s soon as we can.
Best of luck with everything, i do hope you guys can make it there.
@@chuck3441 this doctor shows a lot of videos of people having positive results don’t believe ! He charges more than it should be 1/3 the honest fee.
Thank you for this interview. It helps a lot to know about all the procedures that no one considered to do it before. One thing that I was really waiting to hear was how his mobility was after the shot. I may be wrong, but he only responded how good his leg felt when you asked him about his mobility I don’t know how he’s walking now. I hope he’s walking independently. Anyway, he will be back to where he was before the stroke eventually, because the scientific breakthrough in regard to stroke and the health care in general is very promising and good luck to him.
he is walking now and back to work teaching at school.
First clue "It either works or is doesn't" There is a God or their isn't. God won't keep your money if you don't believe in him/her/it/shim.🤔
Thanks for your comment
I read about research of using Etanercept for relief of chronic phantom pain of amputated limbs; Exciting times!
Yes is seems to help some people reduce the pain.
Pain dropped from 6 till zero with husband and etanercept in forida Boca Raton . My huisbrand had pain in shoulder , hip and knees. Took ocycodon - morfine but that did a little little tiny bit only . Now nothing anymore. Only blood thinner
I live in Mississippi, USA. I had a hemorrhagic stroke August 27, 2022, on a Saturday night. I couldn't walk and barely could talk. By December of 2022, I could walk with a walker, but my arm and hand hardly had no movement. Last year in 2023, I made some progress. I no longer needed a cane or walker to walk, though my right leg become stiff. However my right arm and hand still gave me trouble, but it's less spastic and tight than it was in 2022. Fast forward to today, and it's pretty much the same problem. Hopefully, botox will get my right arm, hand, and leg moving significantly. If botox don't quite cut it, I'll head to Florida to get the treatment. Just the same, I never doubted Enbrel for stroke recovery didn't work, but that price is very expensive😮😮😮😮😮!!!!! It's countless videos online to prove Enbrel does indeed work. However if if comes down to getting this treatment, so be it. I'll gladly spend all my life savings to get this treatment, no matter the cost. Yera💧.
it does seem that Etanercept is a last resort for many people and cost is certainly a big reason
@@BillGasiamis : Hi Bill, the price of Etanercept is a bit of a mystery , i guess using it for perispinal treatment could be the reason for its high price , as for it being used for arthritis its absolutely dirt cheap , in Australia the cost for resident with medicare card is only $30.60 cents with out card its $877.99 , keep in mind for $30.60 you will get 4 auto injectors with 50 mg of Etanercept now considering only 25 mg is used to for each perispinal treatment means there is enough for eight patients , not sure we are getting the whole truth why this treatment is considered controversial
@@BillGasiamis : i have spoken to many doctors here in Australia and to my amazement most have never even heard of etanercept or of its intended uses , they no nothing of it and that is disappointing , they know nothing of the two clinical trials done in Griffith University in Queensland or the extraordinary positive results
@@blurtbumit’s very common that our Drs especially GPs won’t know anything about it. Also it not approved here for anything other than Rheumatoid Arthritis so even if they did know about it they would never suggest it to much risk of getting in trouble by the Medical board. That’s why these podcasts exist so people like us can find out things that doctors don’t know.
@@BillGasiamis : Thanks for reply back Bill , another problem is getting messages through on YT, i sent one to you detailing actual cost of medication with some other info and it didnt get through , disappointing , i have the name of another interesting drug thats had one double blind trial with great results on TNF , just hope you get this then i will share info as i believe it will very helpful
Thanks so much for this video♥️ im so pleased for you.
im in nz too, im a pension who was totally independent until i went to hospital 1.9 years ago, they gave meds that didnt agree with me, it made me violently sick and gave me a mini stroke. it didnt feel so mini!! ive been researching and watching videos on etenercept and the good dr tobinick. I want to go and try it for myself. I am used to travelling alone but feel it would be too hard like this.
Could you please advise how long i would need to apply for a visa to get into america, and what to allow for accommodation costs??
I really just want my life back. Ive asked my dr about etanercept but he jyst changes thr subject, same with physios, no one wants to talk about it. The monthly stroke coffee group head said not to share it around, no explaination why.
I would really appreciate any input you can give, thank you🌻
I do believe the travel visa is very easy to obtain and only takes a short amount of time. Your doctors and therapists won't talk about etanercept because it is not approved for stroke in Australia. The rules in Florida are very different.
Looking forward to seeing what the outcome of the recent trial here in Australia finds. Results are due mid 2024
Do you know what the study is called?
@@BillGasiamis conducted by Griffith university called “
Stroke Clinical Trial - Perispinal Etanercept”
@@phillusted7364 thanks Phil
Thanks for the info 🙏
Now August 2024, any updates on the Aus trial?
Thank you very much for having this in depth conversation about all the things I’ve been wondering about this process.
My pleasure, so will you be going forward with the procedure?
Thanks guys. This is cementing my thoughts in having it done. If I was dr. T I would ask his patients who have had it done in the last fee years, to comment about how they are doing now? It is strange that you find so few comments talking about it years later after the shot?
I think it's because if you get good results like I did, you just want to get back on with your life. I doubt I will still be talking about this 2 years from now
Thanks for the interview Andrew. I am so glad it has helped you.
Great video, I’ve just booked in for August 2024!
@@jameshallett5252Hi James, my husband is scheduled for August as well. Let’s hope you and my husband have great success.
@@jameshallett5252 Was that the fastest that you could get an appointment?
Hi Bi).do you mind emailing asking, how long it took you to regain use of your left arm and hand?., I know all strokes are different. I just want some hope. Thanks
My left arm and hand always worked although not very well for some time. It was weaker and I was lacking coordination. Since 2014 the arm and hand are still weaker but getting stronger, and coordination is also largely improved. The skin on my hand is sensitive to touch and colder than the other side. Did you watch the episode with Dr Amir Hadanny? ruclips.net/video/lqsLY06cm18/видео.htmlsi=Bwkk2uN2h2G_YB4C
Hello Bill. I’m Steve from Nova Scotia Canada. Had a hemmoraghic stroke 2 years ago at age 56. High blood pressure burst a small vein in my right side of brain. Within minutes I was paralyzed head to toes on left side.
I spent 4 months in hospital and rehab. Upon returning home I was walking albeit laboured and left arm and fingers started coming back.
But when things started working it brought severe pain in buttocks- to toes, and arm and hand fingers.
Docs said it was nerves retiring back up. 6 months later the pain continues to ramp up. Physio and strength training made it worse.
Today 2 years post stroke my pain is extreme. Only meds bring that pain down a bit.
My wife is American and very skeptical of this being the only doctor that does this?? The costs?? Extreme. The videos the doctor produces are all good news stories.
However I have more of an open mind and I’m willing to give this a shot.
I appreciate your interview with this guest.
I look forward to knowing more about this. I don’t know if I have brain swelling? Here is what my doctor told me the other day… “There’s abnormality where I had the stroke, but what happens is when you add That it was a big one like I had, the nerves that come down from where that stroke happened end up degenerating, they are not getting a signal. That’s what showed up on the MRI That’s why I still have the symptoms I do on the left because some of those nerves are basically gone and cannot be regenerated”.
Thanks. Reach out to me if you want to
I like that your wife is sceptical and at the same time you are looking for solutions together you will both be able to make an informed decision. I might be able to get you in touch with Andrew if that is helpful. Also check out this video. ruclips.net/video/lqsLY06cm18/видео.html and this one ruclips.net/video/_1MbqaOdcJ4/видео.html
Thanks for the thoughts and the links Bill.
Unfortunately our health system here is great but backed up and huge delays and treatments like this are not considered here. Not even on radar. So when I discuss with my medical team here, I’m warned of the possible negative consequences that could come from this. Especially being a foreigner.
I sent them a note tonight , I’m thinking I will hear back this week from them.
Anyone else considering this treatment??
@@SteveDonnaTVCanada I understand what you mean about the Canadian medical system the Australian one is also backed up after the pandemic
Hello, how many months since your stroke you did the treatments and are you still seeing improvements?
Hi, the interview goes through all the details and I believe address your questions. Have you had a chance to watch or listen to it?
@@BillGasiamis Yes, I watched the whole video. I would like to see updates from more people who have gone through the treatment(s) to determine if this was truly helpful in the long run and what side effects resulted, if any. I wish the medical community will be open to do more studies to determine effectiveness and safety.
Im taking my mom in Sept. Each shot is $8400USD. They recommend 2, one week apart. And you can come for another one 6 months to a year later. I’ve been researching it for 7 years…finally decided to do it once my mom got covid and her stroke symptoms got wayyyy worse. (Supposedly due to inflammation in the brain)
I’d love to hear about the results if she’s happy to share. I do hope it is a success.
100% she wanted to do it originally and seems excited to know we are going 😊
My name is Benjamin really need help with my stroke
what kind of help do you need?
Really helpful video. I've been look at INR videos and it's good to get an independent review of this. I wonder if the time between the stroke and injection makes a difference. Also looking at the videos it seems the shots are more helpful for return of cognitive functions more than for physical conditions like an nonfunctional arm. Did you find any evidence about this?
The time between the stroke and the injection doesn't appear to affect the effectiveness of this procedure. In terms of physical improvement, it could also be the case that when an arm hasn't been used for years, it requires physical rehabilitation in addition to the injection. The injection might be beneficial for the neurological aspect of the arm condition, but muscle rehabilitation is a separate matter.
For people considering Etanercept i think this is an important video to watch. ruclips.net/video/lqsLY06cm18/видео.html
Thank you. Just looking for solutions as my partner had the stroke last year in January and getting 2-3 times physio a week but the arm function hasn't returned.I'll check out the other video as well@@BillGasiamis
I wish there was a test to see if your defecits are due to inflammation or brain damage,maybe the more testing that is done with this and maybe if they seek fda approval
I agree its a great shame. You should check out this interview ruclips.net/video/lqsLY06cm18/видео.html
Thank YOU BOTH🙏
Any time!
Thank you. (I'm Andrew Stopps)
Great information thank you
Glad it was helpful!
Has anyone heard about the results of the double blind testing in Australia? It was supposed to be done mid 2024? I would love it if US Medicare system would pick this up as one of the plans of action for recovery.
This is the most recent post about it. florey.edu.au/news/2021/08/the-florey-institute-examines-common-drug-as-new-stroke-treatment-in-the-first-large-scale-trial-of-its-kind/
Whwre can i get this in calufirnia
I don’t believe it’s available there. Kentucky is the only other place. regenmedky.com/stroke-traumatic-brain-injury/
My stroke was 7/3/2022, I had treatment at Dr tobinick 7/2023 two injections did not correct my systems! Still have left arm numbness . Dr only said maybe need more injections!
I wish it worked for everyone.
Yes I have congestive heart disease and renal kidney faluire of 73 persent current Dr says I was throwing up this weekend and I have bad neuropathy and ephsdema swelling in legs and feet do to me haveing congestive heart faluire. Why I don't need no problems or drama in my life I can have a stroke because I have congestive heart faluire and I swelling in feet and legs from my congestive heart faluire and me haveing neuropathy and emphedemia badly in my legs and feet I pray for healing in my body and health Felicia Gonzalez
best wishes to you Felicia
a nurse practitioner, i decided to experiment on other noninvasive modes of non-invasive administration. i am having amazing personal results!
🙏
Hey, are you a nurse in America or the UK? Very curious to hear more about your experience if you would like to share.
nurse practitioner in the usa
i will share results once first few cases have run the course of four treatments so i can share information
what are you doing? I need information as to what I can try. the doctors are of no use. they have as little information as I do. however I am the one who had the stroke and suffering from the side affects. I"m in a position where I'm wanting to try a possible helpful treatment. where do I find what is available?
Do not spend your money unless you have a lot to waste!
👍
Would you be willing to join me on the podcast to discuss your experience?
Does that mean you had a negative experience ?
Have you been to Florida? If No , then please not give any advice about things you really do not know. yet. I went and somebody close to us went and both got results! Results that no physiotherapist ever good give us . Thank you !
@@kaycee625 had zero results
I must have missed it in the video - I understand that he had a stroke , but when, what we his mobility and upper limb deficits as a result?
Andrew describes the deficits at the 3:50 minute mark
In Australia trials were done at a Brisbane hospital funded by stroke victims and were very successful but permission was denied to use this treatment in Australia, my specialist said it was because it was opposed by big pharmaceutical companies . Etanacept is very cheap in Australia and has been used 4 arthritis 4 years so the pharmaceutical companies won't make any money. Something needs to be done but how do we get government to put people ahead of profit 4 large companies
A lack of of funding for research is one of the most likely reasons we can't use this drug for stroke survivors. It's a real shame because it would help surviors have a better quality of life as well as ease the stroke cost burden for the governemnt.
I would like to know what the clinical picture was of those stroke victims for whom the treatment did NOT work.
That’s the problem. Other than assessing the patient’s for basic health and their previous exposure to TB there is no other thorough understanding if they have areas in the brain that can be rehabilitated. One organization that does that type of testing is Aviv Clinics. They offer Hyperbaric Oxygen therapy treatments. Check this out. ruclips.net/video/lqsLY06cm18/видео.htmlsi=MFr3rEeyPLM9lxF9
Thanks, I’ll check that out. But I’m the meantime: I think I saw somewhere that there’s a 20% failure (i.e., no change) rate and there must be some common features in the brains of those who failed. Presumably they (INR) initially ask prospective clients for brain scans/imaging and interpretations of the images…?
Just looked at some of that linked video (hyperbaric O2 therapy) I wish I knew what Dr Amir Hadani thinks of this Etanercept therapy!!
I don’t believe INR go to that much details. But you could always reach out to them and ask.
He would have an opinion I’d say. Both are useful therapies. Before O2 therapy via a clinic like Aviv a patient will know if they are a candidate or not so there won’t be any unnecessary costs to find out if it works. Etanercept is a well proven therapy for RA but hit and miss for stroke and no one is assessing clients before hand.
If only the procedure is made available in the Philippines. I hope they catch on sooner than later. Tnx for the very comprehensive video.
I wonder if you can reach out to any doctors in your area to ask them if they know anyone running a study of the medication for stroke survivors.
@@BillGasiamis I asked some Neurosurgeon friends but they are not familiar w the specifics of the procedure. They know the work being done in Florida but there are no efforts to bring it over here in the country
@@conradfajardo8881 I understand
Only thing I’d recommend save your money ! And wait
Wait for what?
Andrew - Thanks so much for sharing your dealings with Etanercept. I was curious about it and you took my thinking from it's fake, to it helps some!
Bill - Thanks!
Glad it was helpful!
no fake!Look up the studies
I wonder if anyone that had the procedure had any bad reactions or side effects, I just wonder if can in any way affect your general immunity to other illness in the future, if because how is applied can provoke another bleeding, or can in any way make things worst. After a lot of progress and with just “minor” problems left after the stroke you hate to do anything that could make things worst. Any advice/comment will be appreciated.
I have never spoken to anyone that had negative sides effects but that doesn’t mean there are not any. I am in a similar situation with my recovery. I have no noticeable deficits and the ones you can see although bothersome don’t stop me from living life. So i am in no rush to try an invasive medical procedure if the outcome will only mean small or marginal improvement.
Yes etanercept does effect the immune system which is why you can't have it if you have cancer or HIV or Hep or latent TB and it also has a small risk of potentiating cancer
Itbis a disappoinment that in 6 years this injection is STILL ONLY available in FL.
I agree with you, its crazy how there is nothing outside the US either. Here is a place in Kentucky that does it. regenmedky.com/stroke-traumatic-brain-injury/
@@BillGasiamis ...Thanks
I think there is a clinic in Denmark also (if I heard right when I spoke to Dr.Tobinick)
Can you send a copy of the link of the video that the INR made of your treatment
ruclips.net/video/yNELJsFYRys/видео.html
Bill*
there is a dr. in kentucky doing this procedure too.
Do you know that doctors name?
@@BillGasiamis id have to email you, hes not big on publicity on socials
Following
Please give the name if you can🙏
@@Catmafia5678 regenmedky.com/stroke-traumatic-brain-injury/
i too got this treatment knowing 20% get no result.Sadly i got little.
mostly cognitive and balance improvement.Not mobility.I would like to get another shot but its not possible now
Hello @Alan, my husband is scheduled for a consultation with the clinic soon. Would you be willing to explain why it's not possible to have another shot now?
@AlanDavid How long ago did you have the treatment?
@@BillGasiamis last Monday
@@deborahpeters2311the cost?
I went it did not do anything for me, etanercept sometimes doesnt work. It is the same for RA.I do still believe in the mechanisms of action.
that said HBOT also reduces inflammation.
Have you had HBOT?
We did discuss that in the episode. Were you told that you may not get a result?
Yes it is ' only' 3/4 that get results, in April I am doing hbot.
I have used HBOT too. Great therapy.
DOES THE SHOT WORK FOR VISION?
It does not target specific areas or deficits. It kind of works or it does not. There may be many reasons vision is affected after a stroke and they may not be able to be addressed by the procedure.
How come no one does a long term result on this drug?
Because the drug is out of patent and pharmaceutical companies can't profit largely from it so they do not see the value. There is plenty of research with regard to its effectiveness for arthritis. Here is a document that you might want to have a read of. www.ncbi.nlm.nih.gov/pmc/articles/PMC4110406/#:~:text=Activated%20microglia%20release%20TNF%2C%20which,following%20perispinal%20administration%20of%20etanercept.
The study was done by many people including Dr Tobinik
@@BillGasiamis thank you, I had a stroke about 2 months ago. We can find all kinds of videos on how this drug helps people right after the shot, but no long term results!
Have you used HBOT? I didn't hear the guest mention it either. Just curious, as it is also supposed to help with brain inflammation.
I haven’t met any one who has used HBOT but I recorded this interview about HBOT.
recoveryafterstroke.com/the-hyperbaric-oxygen-therapy-dr-amir-hadanny/
We used HBOT for my daughter following her stroke. She had improvement following HBOT.
She was also receiving occupational & speach therapy and her therapist backed up her positive results from HBOT with improvements she observed by testing.
@@tammyboone1629 HBOT seems like a great protocol. where did you guys go for the therapy? Are they known for stroke recovery?
@BillGasiamis HBOT was recommended by her neurologist at Duke University Medical Center in Durham,NC. She had some follow-up treatment after we returned home to S.C.
That was when she was also getting ST & OT and testing for results from the ST & OT.
My daughter had radiation induced moyamoya syndrome that was the cause of the strokes at 19yo.
Watch your blood presdure dont go over 120 uver 70 and dont have one!
👍
Thanks!
Thank you very much Randall
Great !
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Vjeruješ li dragi Bill u ovaj lijek i ovaj tretman...onako,u dubini duše,iskreno...velik poozdrav
I do see that it has merits and the medication has been in use for many years in the treatment of arthritis, but don't take anything I say as medical advice.
Hello Bill, did you get the injection ?
Hello, no i did not.
I've been looking into this for about 6 months now, I had decided that I was going to go to florida and try this. Thank you for doing this video🌻I just have to figure out how I get started. I too, can't afford to do myself. I am thinking that first I have to write up my story, do I put as much in as I can or do I keep it factual but short? Do I book an appointment before I ask for financial help? Do I list the costs for people to see? Can I mention that if there is any monies left, I would donate to a charity? ( If I was fortunate enough to raise enough) People can be so kind☺️ I would have to find someone to come with me too. Where do I start??
Thank you so much and I really hope you keep improving🌻🌼
First set up a funding campaign and then tell people about it start with your story, ie what happened to you then explain what you are trying to achieve by going to florida, www.givesendgo.com/ best of luck
Thanks so much for your reply. I am halfway to setting up the campaign, cost of flights, injections, accommodation. Can I please ask what to allow for Dr Tobinicks consultation and administration of the injection fees. I'll keep you updated on how things are going. Thank you
@@lynnelliot7256 ruclips.net/video/98JQij4VVNA/видео.html watch this