My latest update

[Faye White]

Ya'll I went to the surgeon that did my YAG procedure..(I had a build up on the new lens on my right eye, making it hard to see

I really do not know what they were hoping for I could not see in that eye anyway

 I had this done in Oct or Nov of last year this was on top of cataract surgery 3 yrs prior.

I then had several bleeds in my left eye after cataract surgery, now for the kicker. 

I decided to do Lazer surgery in Dec if last yr..in my left eye, instead of shots the rest of my life.

On Monday Feb 19 2024 I was declared legally blind with a vision of 20/300 in both eyes.  I had stopped driving mid Jan when I could not see the ambulance coming at me, I was a passenger in the car.. just 3 months before 

I could see most everything.

I am getting used to not seeing things, like fine detail and such.

It breaks my heart that I may not get to see my youngest granddaughter graduate from high school.

But it is what it is. I was told that glasses will not help me as the vision is to far gone.

I am typing this on my phone with it about 6 inches from my face, and 2 pairs of readers on one 4.0 diopter and one 6.0 diopter giving me a bower of 10.0 diopter, but I still have missing letters and spots.

If you see errors please forgive.

I tried talking into the 

phone but I have such a deep southern accent that it puts the wrong words in, and then I have to change them after proofreading several times.

I have an appointment with the Retina Drs the 15th of this month to see if I have stabilized, (thinking my CRVO's) then it is off to the Dr to help me live with my new disability.

Praying we all are doing the bestowed can with this condition.

Sent from my T-Mobile 5G Device
Get Outlook for Android

[martin miyata]

Faye, my heartfelt thoughts are with you. I’ve had CRVO in my L eye since 2009. Shots since then, Eyelea for the last several years. It’s more maintenance and my L eye won’t improve (20/200) and I pray nothing happens to my good eye. 

Martin

Sent from my iPhone

On Mar 5, 2024, at 7:53 PM, Faye White <faw...@hotmail.com> wrote:



--
You received this message because you are subscribed to the Google Groups "Central Retinal Vein Occlusion Support" group.
To unsubscribe from this group and stop receiving emails from it, send an email to crvo-support...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB06061EA90978B02207467B0BE8222%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[Faye White]

Thank you for your kind reply..we had hoped for the same for mine.

Sent from my T-Mobile 5G Device
Get Outlook for Android

---

From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of martin miyata <martin...@gmail.com>
Sent: Tuesday, March 5, 2024 1:52:12 PM
To: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com>
Subject: Re: [CRVO] My latest update

 

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/9AF4E431-CB0C-43EC-8204-C06E7096ED0D%40gmail.com.

[Michelle Ludewigs]

Hello Fay

That us a lot to deal with.

Take your time to let it all sink in.

There are parts of your story I think we all dread the possibility of having happen to us.

Take good care. Mxx

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB060635B2DB56731D0BE487C9E8222%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[Jeffrey Lai]

Martin

What is your frequency for your Eylea injection?

Fay

Stay strong. Hoping the UC Davis result is out and see how good would it be and would it be possible to help us all. 

Sent from my iPhone

On 6 Mar 2024, at 07:42, Michelle Ludewigs <ludew...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CA%2BMib5EovFAVzgTC3hkwCOJmh6QZMWFtX_vW2MudXdk9SYo-8A%40mail.gmail.com.

[martin miyata]

13-15 weeks. Used to be monthly (Avastin), then every 8-10 weeks with Eyelea. OCTs looked good so we’ve stretched it a few more weeks over the last 2 years. 

Sent from my iPhone

On Mar 6, 2024, at 11:35 AM, Jeffrey Lai <lai...@gmail.com> wrote:

Martin

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/0E28443A-E820-41E2-8A69-128CD7DAD7CA%40gmail.com.

[Jeffrey Lai]

Thanks Martin. I am now going to 7 weeks with Eylea, hope will be able to go longer. Currently I am dry, but around 215um thickness for my retina :( if not wrong, the health thickness is around 290+um

now i am taking lutein and hope it will thicken the retina

[Hema Ravikumar]

Fay

Sending you tons of love and hugs . You are  so brave to share and accept the inevitability of what may unfold. While things may look a certain way and many of us have come to terms with what is and will be to an extent there is always still hope and there is always an X factor in play in any disease and it’s pathway to  progressive decline  or resolution that the doctors don’t know ANYTHING about . That X is a mystery and has proven to work in ways  beyond what ordinary human minds can see or comprehend . I believe in it have experienced it and see it operate in existence . 

Meanwhile , on the concrete practical side We are all collectively hoping and praying that there is a literal light at the end of this despairingly mysterious dark and hazy tunnel in the form of a partial or full reversal through effective treatment soon.  

Hugs to everyone 

Hema

On Mar 6, 2024, at 06:16, Jeffrey Lai <lai...@gmail.com> wrote:

Thanks Martin. I am now going to 7 weeks with Eylea, hope will be able to go longer. Currently I am dry, but around 215um thickness for my retina :( if not wrong, the health thickness is around 290+um

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/8e20ddeb-e09e-47ee-a063-ca6c071b7086n%40googlegroups.com.

[Marlys L]

Faye -

  I'm so sad to hear of your very poor outcome from the procedures you had.  That is just awful.  You are amazing in finding ways to handle this with such grace.  I pray for you and that your doctors will help you regain anything possible and will help you find great ways to manage with whatever vision you have.  Thank you for updating us and reporting on your experience.

Wishing you much better things,

Marlys

[Malavika Karlekar]

Hema, are you in India? I am in New Delhi and am being treated for right eye CRVO by a Sreedhareyam doctor who visits the Delhi centre from Kochi every month. Please look up this Ayurvedic centre dedicated to the eye. 

I can’t claim great improvement, but my left eye is well-protected and I am able to type, read, paint etc.

Malavika Karlekar 

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/5CC5A4AE-C663-4BF7-9399-C44FAF102FED%40gmail.com.

[Faye White]

Thank you..but no I am in the States.

I will look him up though.

Sent from my T-Mobile 5G Device
Get Outlook for Android

---

From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of Malavika Karlekar <karl...@gmail.com>
Sent: Wednesday, March 6, 2024 8:21:32 PM

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAPnL%2BcJnhm_Jm-rQuhoHLzRTwbEZs3dzkx_y76TrK_uMr%3DyVaA%40mail.gmail.com.

[Malavika Karlekar]

Hi Faye, that was for Hema. Please look up 

https://www.sreedhareeyam.com/

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB06068AC63CDBD97FF7900029E8202%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[Jeffrey Lai]

i think this weekend will go back n get my treatment for my eyes, i think it did help on my dry eyes, i havent visited him for like 2 months, now i am feeling very dry on both my eyes...

also here is some youtube i saw online and it is saying, it would be able to help in growing stem cells

https://www.youtube.com/watch?v=ET5yx_qBTTk

good to know and there is no harm trying out, since one eye is almost blind....

[Susan Jula]

I watched the beginning of the video where the doctor gives his top 3 beverages to drink which might aid in growing stem cells, coffee being one of the three.  I’ve been a coffee drinker (2 cups a day) for almost 50 years and I’m glad to hear this news.  That being said, caffeine also can raise your blood pressure, which is one of the causes of CRVO.  I’m hearing more good things about coffee but sometimes I wonder.  I think back to my deceased mother in law.  She had 2 doctors.  She was also a smoker and somewhat overweight.  The one doctor, who was obese himself, never told her to drop weight, just to stop smoking.  Her other doctor was a thin smoker and told her she needed to lose weight, but never told her to quit smoking.  She probably should’ve done both, but the irony doesn’t escape me.  

Susan Jula

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/9c77481b-1ea7-45df-9a97-d7b93f45966en%40googlegroups.com.

[Faye White]

Hi Malavika,

I am sorry.. But thank you for the link

Sent from my T-Mobile 5G Device
Get Outlook for Android

---

From: crvo-s...@googlegroups.com <crvo-s...@googlegroups.com> on behalf of Susan Jula <julas...@gmail.com>
Sent: Thursday, March 7, 2024 7:53:10 AM

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAJeNukKf0-AcqxEc58qxaAxZfeKMqeNp0WhPbt_q1FSNXvWc0A%40mail.gmail.com.

[Jeffrey Lai]

Susan,

i believe it is coffee black. no milk for the coffee

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAJeNukKf0-AcqxEc58qxaAxZfeKMqeNp0WhPbt_q1FSNXvWc0A%40mail.gmail.com.

--

Thanks & Regards,
Jeffrey Lai

[Hema Ravikumar]

Hi Malavika thanks so much . So very kind of  you . Thanks for sharing  I hope you get better and wish you well  . 🤗

 I’ve been Living away  from India for 37 years In the US . I actually went to Kerala and met the  (now deceased late )  founder of Sreedhareeyam for a consult in person for my left eye CRVO a few years ago . He did not give me any reason to hope that anything could be done about it . I appreciated his candor . He said If I want I can undergo inpatient overall tune up if I choose and since I already did that at another clinical  Ayurveda place I have been frequenting for many years  I opted out since my interest was primarily to address this specifically should a specialty protocol be available for it . And it didn’t appear that he was optimistic so I left . I did get some opd meds and that was that . 

 I had/ have access to brilliant clinical  Ayurveda inputs , spoke to several people , but discovered that unfortunately the CRVO condition is such that very little can be done to reverse it other than some preventive  care for associated issues and overall eye health . 

In Ayurveda pathology is classified into three categories - curable , incurable and acute / chronic  management  . This falls under the third . In Ayurvedic intensive  inpatient  treatment or outpatient setting with take home prescriptions  the goal is overall body balance of the three  doshas so further similar episodes  instances can be prevented but …it’s a goal and  there are no guarantees in life as we all know . 

How do I know this - am myself a practitioner .  

My coping strategy with this condition has been to not give in to keep my mind game strong not give in to worry or despair  , stay calm , focus on doing what is possible and let go of the rest that’s not in my control , and continue self monitoring . I engage in  prayer , self healing techniques to keep mind in equilibrium , follow a clean diet , and lifestyle to protect the other good eye and of course to hopefully prevent too much deterioration on the affected one . I don’t obsess about this daily it’s just part of my being . That’s it . 

I  can always go in to see the ophthalmologist if I feel it’s needed but haven’t seen the opth here in California in maybe 6- 7 years cos all he had/ has  in his so called arsenal are invasive ineffective tools ( shots laser etc ) to provide temporary relief that have their own laundry list of side effects   . Not blaming him he’s a nice guy but that’s all allopathy offers . 

The history  : Initially when this happened in 2012 Feb / March it was mild non ischemic CRVO of the left eye that was idiopathic .( no traceable known cause )  30 lab tests later no link was found to any disease or underlying condition . I theorized to myself that Perhaps it could have been an Over enthusiastic shoulder or headstand at the time or maybe it was something else I did unknowingly -  I don’t know . As an Indian person  I put it down to karma - it had to happen so  it did . There was No why to be traced back to as all medical tests came up empty . That’s what I mean by the X factor in disease . It’s hard for someone not of my background to understand my reasoning but ad frustrating as it was to not be able to establish a clear link it made perfect sense to me that there was something unknown that brought me to this point . 

Fast forward a couple of years later and The left eye Turned ischemic 2014-2015 . 

I took 6 shots of lucentis in that time period from the first diagnosis to second progression as it was pushed as a great option to manage and save it from glaucoma and all the other horrific possibilities that may happen but  not only were the shots uncomfortable and ineffective the other fallouts of ischemic plus cataract etc happened anyway and  are still in progress . So I took a stand and  stopped all allopathy intervention completely by choice . Not advocating it for everyone but that was my personal decision . I felt it wasn’t really doing anything other than making the optho and insurance richer .  No regrets . 

Current status : 7/8 years later There is some age related and progressive condition deterioration but nothing too alarming . I don’t drive in poor light or intense glaring sun if I don’t have to but otherwise do everything working around this as best as I can  ( traveled all over the world , live my life , have my routines , even went  on a two week Tibet  / Himalayan Kailash  manasarovar Yatra  in 2018 in grueling conditions and walked three days at that extreme high altitude around the mountain in tough misty conditions ) 

So the point is , I have found a way to live with this and  retain good quality of life so far . I will as long as it allows me by being careful and prudent but fearless . If things get worse then I ll cross that bridge if or when it happens  . But I am not losing any sleep daily speculating on or worrying about  eventualities .  One day at a time . 

Anyway that’s my story. 

On Mar 7, 2024, at 06:00, Faye White <faw...@hotmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/SA1P223MB06069AD6496FA7D9E6B6E261E8202%40SA1P223MB0606.NAMP223.PROD.OUTLOOK.COM.

[Malavika Karlekar]

Hello Hema,

Thank you so much for your detailed analysis of your situation. My bottom line is not very different from yours: no allopathic, invasive treatments, continue with Ayurveda as it will, hopefully, keep my good idea going . . . and Que sera sera!

I do everything I normally would do - I’m an academic editor and author, as well as an artist and gardener! At times my disability frustrates me - it’s an annoyance - and I have bad knees as well (I’m 78), but I keep going!

All the very best to us, the CRVO survivors/gang!

Malavika

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/9A8BFA0E-540E-4D21-992D-CDC2822DCF81%40gmail.com.

[Jeffrey Lai]

Hi Hema and Malavika

i do feel that the Ayurveda treatment may have some good outcoming like addressing the dry eyes issue, I have stopped going over for the treatment as I would like to know, what would happen if I have stopped the treatment. Looks like it is helping on dry eyes issue, will start to do the eye treatment for once a week and monitor it again.

Hama

once you stopped the treatment, how was your eye pressure? i believe that will increase due to abnormal vein growing which will lead to glaucoma... did you do any laser treatment?

lets hope new technology for stem cell will be out to help all the impossible CRVO, i only wish for a little vision improvement. my CRVO is almost a blind eye... 

To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAPnL%2BcL8g3Q9c-PdpMzYVzEkpQv5VaXEUAFGunGmafD6C%3DL8PA%40mail.gmail.com.

[Hema Ravikumar]

Yes All the very best to us all dear Malavika . Awesome that you are doing everything you love and powering through this . Thank you for sharing a little about your life  . 👍👍 

 I am 54 years old right now , (married , have a daughter 31 and son 27 ) . The CRVO came out of left field ,hit me at prime time when I was 42 , completely out of the blue and literally blindsided me . Until then  I was the only one in the family with  20/20 vision , functioning perfectly without using eyeglasses and bouncing around in great health . And then this happened . Been a lesson in cultivating patience and graceful acceptance . Has forced me to look even deeper within than I was already doing . 

Jeffrey,  I would say it is only slightly worse than what it was 7 years ago so if there is anything going on with pressure or neovascularization  it is a very minimal slow moving gradual decline . I do plan on checking on the cataract development one of these days to see where it’s at in both eyes  but will go the Ayurveda and alternate healing route to treat it as much as I can . Same for the other potentially emergent issues . 

My intention as I stated before is to avoid experimental symptom suppressing allopathic intervention  as much as possible.  

But that doesn’t mean I will be completely  closed minded . I  Will track and stay open to all treatment possibilities from different modalities if I feel there is some genuine merit there to be explored  . 

Meanwhile day to day , 

As an Ayurveda clinical practitioner with a daily yoga and spiritual practice  including meditation prayer   following a clean simple lifestyle , I Will continue to do whatever I can  … hope for the best and  surrender the rest .  

 

On Mar 8, 2024, at 05:16, Jeffrey Lai <lai...@gmail.com> wrote:



To view this discussion on the web visit https://groups.google.com/d/msgid/crvo-support/CAFtHK3K4Wciq_wL47Yj0zD%2BFZ7zFb9b8%3DVi5%3D40EKvAqpfG9Fg%40mail.gmail.com.