Pls come share your experience and how you are coping.
Pls state your genotype and age before sharing thanks.

I go first.
Genotype SC
Age 32.

My experience has been funny. Asides vaso occlusive crises. Once my crises start. I use really hot water to bath and consume tramadol.

But I beginning to show other signs and symptoms of sickle cell disorder.

My femur developed osteophytes which gives me extreme pain. Now I limp

Recent one that scared the shit outta me is sickle cell retinopathy.
Woke up one morning
Realized I couldn't see in one of my eyes.
Saw an opthalmologist. Told me what the diagnosis is. That I should come in for retina lasar treatment.

I'm so scared
Is there anyone who has done lasar treatment?
How was it?
What was the cost?
Thank you for sharing

I hope this gets the attention it deserves. I don't have sickle cell but I understand to an extent what it is like due to my profession.

In my experience with such, the earlier the better so I hope people with helpful experiences show up soon.

sweettease:
I hope this gets the attention it deserves. I don't have sickle cell but I understand to an extent what it is like due to my profession.

In my experience with such, the earlier the better so I hope people with helpful experiences show up soon.

Thanks
Are you an opthalmologist?
I'm seeking second opinion

donbabade:


Thanks
Are you an opthalmologist?
I'm seeking second opinion

Not at all, I am nurse and I have had patients going through different crisis and other complications of the disease.
I thought you were looking for people with similar experiences but if a second opinion is what you are looking for, I'd advice you see a consultant ophthalmologist, preferably in a tertiary institution especially if cost is an issue. I have a friend who has worked in a well equipped ophthalmic hospital in Lagos, I can ask her for the name if you'd prefer a private institution but your first call really should be one of those tertiary teaching hospitals.

sweettease:
Not at all, I am nurse and I have had patients going through different crisis and other complications of the disease.
I thought you were looking for people with similar experiences but if a second opinion is what you are looking for, I'd advice you see a consultant ophthalmologist, preferably in a tertiary institution especially if cost is an issue. I have a friend who has worked in a well equipped ophthalmic hospital in Lagos, I can ask her for the name if you'd prefer a private institution but your first call really should be one of those tertiary teaching hospitals.

Been to 2 consultant opthalmologist. They both agreed on lasar.
I need similar experience to know what the treatment was like and recovery after treatment

donbabade:


Been to 2 consultant opthalmologist. They both agreed on lasar.
I need similar experience to know what the treatment was like and recovery after treatment

This is where my first post comes in, an alternative is googling the prognosis of the procedure and patients who've undergone such treatment for now.

Brother lalasticala, I take God beg you, through SNAKES™, SNAKES® and SNAKES© to pls take this topic to front page

This topic should be taken to FP.
Shouldn't be snakes all d time

Is the sickle cell disorder itself being well managed by strict compliance to drug and non-drug therapy?!

How often do you experience a crises?!

Retinopathy for sickle cell patients, from my understanding, is usually a sign of poor control of the disorder. You need to have your treatment regimen reviewed on a regular basis by your hematologist to minimize the risk of these issues happening. If you maintain a firm control of your illness by adhering to prescribed regimen, you might even live longer than most non-sicklers.

I'm AS, but with an intimate knowledge of what SS patients go through.

claremont:
Is the sickle cell disorder itself being well managed by strict compliance to drug and non-drug therapy?!

How often do you experience a crises?!

Retinopathy for sickle cell patients, from my understanding, is usually a sign of poor control of the disorder. You need to have your treatment regimen reviewed on a regular basis by your hematologist to minimize the risk of these issues happening. If you maintain a firm control of your illness by adhering to prescribed regimen, you might even live longer than most non-sicklers.

I'm AS, but with an intimate knowledge of what SS patients go through.

I'm on prophylactic antimalarials and non-iron blood tonic

donbabade:
Pls come share your experience and how you are coping.
Pls state your genotype and age before sharing thanks.
I go first.
Genotype SC
Age 32.
My experience has been funny. Asides vaso occlusive crises. Once my crises start. I use really hot water to bath and consume tramadol.
But I beginning to show other signs and symptoms of sickle cell disorder.
My femur developed osteophytes which gives me extreme pain. Now I limp
Recent one that scared the shit outta me is sickle cell retinopathy.
Woke up one morning
Realized I couldn't see in one of my eyes.
Saw an opthalmologist. Told me what the diagnosis is. That I should come in for retina lasar treatment.
I'm so scared
Is there anyone who has done lasar treatment?
How was it?
What was the cost?
Thank you for sharing

hbot: crao on scd crises.


When there is sudden onset of blindness in a sickle cell disease (scd) patient in crises, it is almost synonimous with central retinal artery occlusion (crao). This is an emergency in which the haematologist and opthalmologist take emmergency steps. As this is an occlusion of blood supply and oxygen deprivation to the retina, it may result in permanent damage if urgent attention is not given. The use of supplemental oxygen under hyperbaric condition (hbot) is also highly recommended.

Augumentation of treatment with HBOT gives a better and more reliable result either before or after any treatment......

To know the side effects of laser coagulation on sicklecell retinopathy click here......www.eyewiki.aao.org/Sickle_Cell_Retinopathy.

www.onlinelibrary.wiley.com/doi/10.1002/14651858.CD010790.pub2/full

To know the beauty of hbot and what it can do to impact the outcome of your eye problem click here:
www.houstonwellnessclinic.com/eye-disorders.html

HBOT providers can partner with your doctor to tackle your condition.


This is a similar case

https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-8-370

Is there hbot provider in lagos?
Searching online; found one and it's in abuja

oxypress:





hbot: crao on scd crises.


When there is sudden onset of blindness in a sickle cell disease (scd) patient in crises, it is almost synonimous with central retinal artery occlusion (crao). This is an emergency in which the haematologist and opthalmologist take emmergency steps. As this is an occlusion of blood supply and oxygen deprivation to the retina, it may result in permanent damage if urgent attention is not given. The use of supplemental oxygen under hyperbaric condition (hbot) is also highly recommended.

Augumentation of treatment with HBOT gives a better and more reliable result either before or after any treatment......

To know the side effects of laser coagulation on sicklecell retinopathy click here......www.eyewiki.aao.org/Sickle_Cell_Retinopathy.

www.onlinelibrary.wiley.com/doi/10.1002/14651858.CD010790.pub2/full

To know the beauty of hbot and what it can do to impact the outcome of your eye problem click here:
www.houstonwellnessclinic.com/eye-disorders.html

HBOT providers can partner with your doctor to tackle your condition.


This is a similar case

https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-8-370

Thank you all.
Done the lasar treatment.
Everything went well

Modified.
Pls take it to front page
Mynd44
Lalasticlala
Seun
Farano

donbabade:
Thank you all.
Done the lasar treatment.
Everything went well


Lalasticlala, mynd44 pls help me delete this thread.
Thanks

Pls don't Delete the thread. Your post just gave good hope to many who are SS carriers.

My younger brother (27) is one, and i tell you, this is one of my greatest fear.

He just survived one fear which i have prayed NEVER to happen to him - Osteomyelitis - Infection to his Bones (Ankle)... Twice! within 4months. Caused very bad sickness and excessive constant Pain, shut down his bowels, to the point he said "Bro, I am Tired !"... Trust me, i broke down in tears. But, he was treated well, and he is back to work now. He's a fighter!.. You all are Warriors!

A family friend lost her daughter to this same stuff.

I know about this sickle cell retinopathy, and i have always feared it. But the way you just popped in with this last message, It has given me reason not to be worried.

Your thread was worth it.


Cheers !

FullDepth1:


Pls don't Delete the thread. Your post just gave good hope to many who are SS carriers.

My younger brother (27) is one, and i tell you, this is one of my greatest fear.

He just survived one fear which i have prayed NEVER to happen to him - Osteomyelitis - Infection to his Bones (Ankle)... Twice! within 4months. Caused very bad sickness and excessive constant Pain, shut down his bowels, to the point he said "Bro, I am Tired !"... Trust me, i broke down in tears. But, he was treated well, and he is back to work now. He's a fighter!.. You all are Warriors!

A family friend lost her daughter to this same stuff.

I know about this sickle cell retinopathy, and i have always feared it. But the way you just popped in with this last message, It has given me reason not to be worried.

Your thread was worth it.


Cheers !

Thank you
At a point I felt I was the only sickler on NL

lalasticlala
this deserves front page. thank you

If it is a dumb thread about snakes and some yeye celebrities that adds no value or provides any reasonable information. The mods won't think twice before pushing it to FP.

CC lalasticlala and dominique ...let this thread make the front-page

donbabade:
Thank you all.
Done the lasar treatment.
Everything went well

Modified.
Pls take it to front page
Mynd44
Lalasticlala
Seun
Farano

congrats man. Hav been following this thread,..and I must say am relieved u cud undergo the treatment successfully. I hav a close relative wit d scd. A v intelligent n well mannered boy! Breaks my heart anytime I witness his crisis.but like som1 said earlier,with d right lifestyle,u can live a v normal life.



God speed man!

donbabade:
Thank you all.
Done the lasar treatment.
Everything went well

Modified.
Pls take it to front page
Mynd44
Lalasticlala
Seun
Farano

Good to know.
Where did you have it done?

sweettease:

Good to know.
Where did you have it done?

Ancilla eye hosp
Agege

mightyhazell:
congrats man. Hav been following this thread,..and I must say am relieved u cud undergo the treatment successfully. I hav a close relative wit d scd. A v intelligent n well mannered boy! Breaks my heart anytime I witness his crisis.but like som1 said earlier,with d right lifestyle,u can live a v normal life.



God speed man!

Thank you so much.