Stem cell in Texas

[Lois Wang]

Hello, Have any of you heard of stem cell therapy for CRVO? A friend found this in Texas. https://innovationsmedical.com/stem-cell-therapy/eye-diseases/ 

 Would any of you go there to get stem cell therapy done for CRVO? Is it safe?

[zim...@aol.com]

Coincidentally, I attended a seminar on what are said to be the miracles of Stem Cell therapy (Umbilical stem cells only), but it was not specific to CRVO.  I am extremely interested in this topic, because the stories I heard from some of the attendees of the seminar about their healing were amazing.  I've been reading about stem cells since the 1990s, when the talk was about the miracles of T-cells in our bodies.  I used to work in a hospital pharmacy, and these treatments were not yet available, but I was the computer manager in the pharmacy and personally did a lot of health research for myself and family members about various treatments.

I would go to Texas for treatment.  I live in Louisiana.

[zim...@aol.com]

I can see how the stem cells would heal the damaged macula, but I don't know how they would correct the cause of the occlusion in the first place.  In my case I think it's a hardened retinal artery which is pressing on the vein.

[Faye White]

I worked in a hair transplant clinic for a time, we did stem cell hair treatments for our clients, in some this helped thier thinning hair in as little as 3 weeks, for some it took 3 months to a year to see improvements.

My take away for this is it could not hurt, worst that could happen is nothing.

Best wishes for our eyes and sight.

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From: 'zim...@aol.com' via Central Retinal Vein Occlusion Support <crvo-s...@googlegroups.com>
Sent: Tuesday, February 13, 2024 7:43:37 AM
To: Central Retinal Vein Occlusion Support <crvo-s...@googlegroups.com>
Subject: [CRVO] Re: Stem cell in Texas

 

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[Susan Jula]

For me, the only way that I would consider this procedure, is when it becomes as routine as cataract surgery, and once there were enough people who had the procedure done so that any side effects or results would be documented.  To me it still sounds experimental.   That said, we are probably decades away from any of these scenarios happening, so I guess count me out.  

Susan Jula

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[Faye White]

Another thing in Dec of last year I underwent laser surgery on my left eye, (had done the same surgery several years ago for right eye costing me my site in that eye) it was not what I was expecting, now I have a blind spot in my central vision (think parts of faces and letters missing)

and when the light is turned on that eye goes black, until I get my vision stabilized.

I have given up driving for the most part, as I can not see well enough to

know what to avoid in the road..(think something in the middle of it, I could not see the ambulance in front of us nor could I see what everyone was going around), so I  thought it is better not to hurt any one I will not drive anymore.

All is not bad, I now work for Wal Mart as a person that when you are looking for somthing I take to it, and returns.

As for those that think life is over because this it does go on. 

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From: Faye White <faw...@hotmail.com>
Sent: Tuesday, February 13, 2024 7:58:47 AM
To: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com>
Subject: Re: [CRVO] Re: Stem cell in Texas

 

[Bruce Dishongh]

This appears to be a website looking for guinea pigs for testing purposes, not for treatments, and the patient pays for the privilege.  

If you do a search for "FDA" in their search box this is what you get:

"The Cell Surgical Network and its affiliate treatment centers are not offering stem cell therapy as a cure for any condition, disease, or injury. No statements or implied treatments on this website have been evaluated or approved by the FDA. This website contains no medical advice. All statements and opinions provided by this website are provided for educational and informational purposes only and we do not diagnose or treat via this website or via telephone. The Cell Surgical Network and its affiliate treatment centers are offering patient funded research to provide individual patients with Stromal Vascular Fraction that contains their own autologous stem cells and growth factors and the treatment centers provide surgical procedures only and are not involved in the use or manufacture of any investigational drugs.

The Cell Surgical network does not claim that any applications, or potential applications, using autologous stem cells are approved by the FDA, or are even effective. We do not claim that these treatments work for any listed nor unlisted condition, intended or implied. It’s important for potential patients to do their own research based on the options that we present so that one can make an informed decision. Any decision to participate in our patient funded experimental protocols is completely voluntary.

ATTENTION: If you have ANY concern with stromal vascular fraction, any of our products, methods, website, or technique and think we may be violating any U.S. law, please contact us so that we can investigate the matter or concern immediately."

Bruce

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[Jeffrey Lai]

Faye

The injection method is retrobular, which is inserting the needle deep into your eye and release the stem cell. If that procedure is not done perfectly, not sure what will happen to the sight!!! If it is dripping iv. It’s not bad. It will not have any side effects. But retrobular. Do consider again. 

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On 13 Feb 2024, at 22:17, Bruce Dishongh <virgi...@gmail.com> wrote:



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[Susan Jula]

Bruce;

Yes, they are trying to appeal to people with this condition, especially when first diagnosed, because it’s a frightening thing to have happen, with no specific known cause.  It could be caused by so many factors.  Also the doctors tell us there is no cure, and they are 100% accurate because there isn’t a cure.  The antiVEGF shots are to dry up the fluid in the macula and to prevent the eyesight from getting worse.  So many people are looking for an answer and will travel and spend thousands of dollars looking for a solution.  I’ve been on this journey for over 3 years now, and I have total confidence in my doctor, who would never suggest anything that is experimental.  I follow his advice to a T.  So far he’s been very consistent and helpful as I navigate through this situation.  

Susan Jula

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[Faye White]

Jeffery kind sir, 

I did try the injections, but with bleeding continuing I decided to do the surgery..I do understand there is a lot more to the injection than I stated, I was trying to keep things simple, but yes after several of them I felt this was best for me..even with the limitations I have in my vision now.

I thank you for your concern, I pray that each of us stricken by this horrible sight robbing condition, does get better as new solutions are made.

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From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of Jeffrey Lai <lai...@gmail.com>
Sent: Tuesday, February 13, 2024 9:12:37 AM

To: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com>
Subject: Re: [CRVO] Re: Stem cell in Texas

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/EB2065B7-6D3E-41BB-8C90-7666220346D1%40gmail.com.

[Malavika Karlekar]

What sort of surgery? 

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[Faye White]

Miss Malavika,

It was a retinal laser surgery to target bleeding in my eye. 

I was told the name of it, but I can not remember.

Please think long and hard before undergoing a procedure such as this as you could loose your sight just as I have, or have distorted vision.

I am happy to answer any

questions you may have.

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From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of Malavika Karlekar <karl...@gmail.com>
Sent: Tuesday, February 13, 2024 9:46:28 AM

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[Malavika Karlekar]

Thanks, Faye. I’ve had three laser surgeries ‘to clean up the debris’ as the ophthalmic surgeon said. Painless. As there is nothing in allopathy for CRVO, I’m on Ayurvedic treatment. Seems to be working slowly.  

Did your sight deteriorate further with the laser surgeries? 

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB060626A8469166C02EB58F7DE84F2%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[Faye White]

Yes mam right eye partial vision loss and with left eye I have blank spots, like parts of faces missing and missing letters in words. 

What is the therapy you are on, is it injections or what?

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From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of Malavika Karlekar <karl...@gmail.com>

Sent: Tuesday, February 13, 2024 10:08:57 AM

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[Malavika Karlekar]

Please check out this site: 

https://www.sreedhareeyam.com/

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB06062BC97C277DE0620F47F4E84F2%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[cal]

This is a helpful website regarding stem cell therapy for the eyes.  It gives some basic and easy to understand information.

 

https://www.fightingblindness.ca/resources/stem-cell-therapy-for-vision-loss/#:~:text=What%20is%20stem%20cell%20therapy,%2C%20glaucoma%2C%20and%20corneal%20diseases.

 

Here is one of their warnings:

 

“Caution: Be aware of something called stem cell tourism. This is direct-to-consumer marketing by dangerous, unapproved stem cell clinics. These businesses claim that they can treat a wide range of diseases, including blinding eye diseases. However, these are often untested therapies and some patients have lost their eyesight after receiving these treatments. You should never pay money to get an unproven treatment.”

 

 

What is interesting is that, at least in Canada, the research for stem cell therapy doesn’t include retinal vein occlusion directly.

 

Once again the Texas location’s website doesn’t give that much information especially the doctors that work there performing the procedures.  For the stem cell therapy procedure for eye sight they don’t provide results of the procedure except for the following :

 

“Patients that have been treated with stem cell therapy for central retinal vein occlusion and other eye conditions at Innovations Stem Cell Center have seen some positive results of their treatment.”   https://innovationsmedical.com/stem-cell-therapy/eye-diseases/

 

What is their interpretation of “positive results”?  For most of us that would be to get our vision back to what it was before our BRVO or CRVO, but that is not what they are promising.

 

Research for stem cell therapy has made a great deal of progress and most likely in 10 years we'll have a cure, but they are not there yet.  

[Jeffrey Lai]

i saw this locally. not sure when will they start the clinical trail also...

https://www.duke-nus.edu.sg/allnews/stem-cell-approach-for-correcting-photoreceptor-cell-degeneration#:~:text=SINGAPORE%2C%2014%20April%202023%20%E2%80%93%20A,resulted%20in%20significant%20vision%20recovery.

[Lois Wang]

I was thinking of going to Texas for treatment as well. Do you think it’s safe? Texas uses fat cells. 

I’ve also heard of umbilical stem cells. Mesenchymal stem cells. There are some clinics overseas that does this. 

Thanks. 

On Tue, Feb 13, 2024 at 8:41 AM 'zim...@aol.com' via Central Retinal Vein Occlusion Support <crvo-s...@googlegroups.com> wrote:

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[Susan Jula]

Lois,

No matter where you have to travel to for this, I would first look into who these doctors are who are performing this procedure.  What is their background and experience.  What credentials do they have.  How many patients have they treated for this & what was the outcome.  Have they treated people with the same type of issues as you.  Traveling to Texas or overseas from where you live is far, so would it be necessary for you to stay there for a while post operation.  Then once you do return home, if a complication occurs do you have to go back there? But for now, are you able to function with how your vision currently is?  I know it’s not the same as it was before the CRVO, but have you been able to adjust?  There is so much to consider before letting someone do this type of procedure on your eyes.  I know you’re looking into all the options because you frequently post about it here, but my advice is to think about this long and hard.  

Susan Jula

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAD%3DcKw6ducnBJR-42gt9rLhF8Uxm2hbirBO55r%2BY-n4Lx96J-Q%40mail.gmail.com.

[Lois Wang]

I called them and had a phone consult. They said they’ve been doing this for 11 years. They said they treated 15 CRVO patients. Success rate is 65%. 

The mescenchymal stem cells you mentioned. Are they the strongest stem cells? 

https://stemcellstransplantinstitute.com/toronto-canada/

This is the link someone mentioned for mesenchymal stem cells but under conditions treated, it doesn’t say CRVO. Is mesenchymal third party umbilical cord cells? If I did this, they don’t need to remove any cells from my body? They can just administer it via IV? 

For the Texas one, they use fat cells. I’m just afraid - will it be painful to have cells removed from 1 area of your body? How do you know that these cells will go to your eye? Is it possible to go blind? They said they will administer it via IV.

This is a site my friend found for Mexico. 

https://progencell.com/about-your-condition/stem-cells-therapy-for-eyes/

Would you wait for the UV Davis California stem cell trial to be approved? 

Would you live with a blurry vision or try stem cell? 

Thanks, 

Lois 

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[Diane]

Lois,

I have non-ischemic CRVO in my right eye. Nearly a year ago, I went through stem cell therapy as a participant in a research study by UC Davis Eye Center in Sacramento, California. (See below.) The retrieval of stem cells from my body was extremely painful. The later injection into the eye is the same as receiving Avastin or Eyelea. It has been nearly a year and there’s been no discernible improvement in that eye. I would NEVER have gone through this procedure in anything but a clinical setting. 

Regards,

Diane

On Feb 14, 2024, at 11:06 AM, Susan Jula <julas...@gmail.com> wrote:



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[Lois Wang]

Hi Diane, 

Thank you SO much for your email and for letting me know. Yes, I am very worried about the pain. How do they remove cells from your body? Did they inject it into your eye? They didn’t do it via IV? 

I wanted to wait until UC Davis in California gets approved. 

How painful was it from a scale of 1-10? It didn’t help improve your vision? 

I’m just wondering how can cells from another part of your body be able to fit in the eye area? 

Have you heard of mesenchymal stem cells? They’re third party umbilical stem cells. I’m wondering if this would be better. Would it not consist of removing any cells from your body? 

I also have non ischemic CRVO in my right eye. Can I get your personal email so I can contact you? Would you choose to live with a blurry vision or try stem cell therapy?

Thanks 

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/31FFBA4C-3854-4B4E-85E9-DA328C0F4DD0%40gmail.com.

[Diane]

Please read the first study link as it will answer many of your questions about the study.

Additionally, this is a link to the US government site regarding this study. This goes into the types of stem cells used etc.

Regards,

Diane

On Feb 14, 2024, at 11:48 AM, Lois Wang <msloi...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAD%3DcKw6SkMkPv5Ttdn3xKZwRgYbbq2rx3i9SJBbF82OgTyAWwg%40mail.gmail.com.

[cal]

Lois:  When Texas stated a 65% success rate, how did they define success?  What was their visual acuity before the injection and what was it after the injection?

[Lois Wang]

Okay, I will ask them. They didn’t say 

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[Connie Zimmermann]

Hi Lois, I recently traveled to Canada for 10 days for Red Light Therapy treatment for a brain issue I am having, and I have a few tips about traveling.

1.)  Get a hotel VERY close to the clinic because Uber will cost a fortune if you have to make multiple trips.  I was there for 10 days and had to take a minimum of two Uber trips, one there and one back, plus occastional restaurants.

2.)  I got a Suite for a  hotel room, which cost more, but was fantastic because it has a stove and fridge and even an icemaker in the freezer.

3.)  Figure out entertaining things  to do while there before you go.

Good luck, I hope you report back excellent results to us.  I've been reading though that it does take a while for the stem cells do to their job.

... Connie Z

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[cal]

Seems like Dr. Johnson has a bit of a history.  Here's the link to the Texas Medical Board.

https://profile.tmb.state.tx.us/SearchResults.aspx?c8621f6a-1cc5-450e-ae6a-8dd90b3a49c3

[Jeffrey Lai]

can't see the link, i think it is ip blocked

in summary means?

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Thanks & Regards,
Jeffrey Lai

[cal]

Try this and type johnson bill 

[cal]

https://profile.tmb.state.tx.us/Search.aspx

[Jeffrey Lai]

This page is not available in your area.

Status: 403
Message: Location restricted

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[Jeffrey Lai]

i am from Singapore :D

[Lois Wang]

Hello, 

The name of the doctor in Texas is called Dr. Bill Johnson. How can I search to see if he’s good or not? 

Thanks. 

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[Jeffrey Lai]

I thought got people post the answer for you? It is up blocked. Hence I am unable to see. U should be able to see. 

Sent from my iPhone

On 17 Feb 2024, at 08:28, Lois Wang <msloi...@gmail.com> wrote:



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