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Bit of a rollercoaster retinopathy week

S

SouthernGeneral6512

Well-Known Member
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412
Last Thursday I was at the hospital for my 3 monthly check up and the good news was no new blood vessels on the retinas ... unfortunately though my case notes were no where to be found so the results of the scans (fluorescein angiogram and 1 other I can't remember the name) I had done in June weren't available. And so to today I just got a phone call from the doctor and apparently the scans show bleeding and it looks like I will need laser after all (and the worst sort with all the little burns all over the retinas). Needless to say this is a crushing blow I can only hope that last week at least shows that my condition is stabilising so should I ask for the scans to be redone?
 
Sorry to hear your news SG, I would certainly ask for your doctors opinion or that of your hospital consultant regarding the stabilising of your bleeds.

Try not to dwell on things though and take every appointment as it comes, you may be worrying needlessly but if laser treatment is the best option, the outcomes nowadays are generally very good.

Good luck
 

Sid's right SG. I can't remeber now but have you actually had ant laser yet or do hey just keep mentioning it?

Sometimes they will laser o stop bleeds and sometimes to stop them recurring. Anyone woth their salt will do an up to date scan
before they do any laser.if you ask for it.
Try not to think of it as something which will damage you but as something to prevent further damage. Its always best to voice your misgivings so that any misunderstandings can be cleared up.
Your Dr is likely to have only a rudimentary knowledge of your eye condition. Bes to ask those responsible for treating the condition. They will then be aware of your concerns. Some patients would rather not know. You would feeel better if they discussed it with you I am sure.
 
Thanks for the wise words :clap:

I've not had any laser ... I suppose I felt a bit lucky last week that I had no new blood vessels without it but not so lucky this week :sick:.

It seems strange to me that both eyes started producing new vessels at the same time (between February and May) and then both stopped producing them between June and August ... I had the heart attack at the end of April and started taking 9 pills per day after that (including the blood pressure lowering ones) so perhaps they may have made the difference?

Since so much has changed I think I should ask for more up to date scans after all 2 months is a long time especially since there were no new blood vessels during that time so apparently something has changed.
 
I'm not sure if he is a consultant he just has the title doctor
 
Sending lots of positivity to you Southern General.

Keep doing your visualising and try to keep as relaxed as you can whilst you get more information.

All the best

Cathy N xx
 


The bp pills will have no doubt helped, my gp started me on Ramipril when diagnosed with diabetic retinopathy and wanted to get my levels below 130/70, before then my bp was fine but he (and the Opthamologist) both said that controlling bp and cholesterol is as important as controlling bg when you have retinopathy.
 
CathyN said:
Sending lots of positivity to you Southern General.

Keep doing your visualising and try to keep as relaxed as you can whilst you get more information.

All the best

Cathy N xx
Click to expand...
I needed that positivity right now :clap:

x
 
Did you feel any adverse effects of having your BP lowered? Mine was sky high before and I do feel a little wooly headed now it's down although I am on so many tablets I suppose it's hard to say what's causing it
 
They can tell if your BP is too high by looking at your eyes so I can well imagine lowering i may have had a positive effect.

I am not surprised you are so worried about he laser. It has been hanging over you for some time.

I have OCT scans every time I have an appt -sometimes that is almost eery week so no reason why yourshouldn;t have them repeated after a couple of months paricularlty as things are changing .
It looks as though they are moving in the right direction too so if you do have to have laser t should be very successful and maybe i will do thet rick. I hope so. You have suffered quite a bit of mental anguish in one way and another haven't you?

If your scans show an improvemen in such a short t ime you have every reason to hink you can beat the retinopathy.

In 5 years mine only showed an improvement once!
 
SouthernGeneral6512 said:
Did you feel any adverse effects of having your BP lowered? Mine was sky high before and I do feel a little wooly headed now it's down although I am on so many tablets I suppose it's hard to say what's causing it
Click to expand...


Not that I recall SG and certainly don't now, usually Ramipril is well tolerated but like any other drug it will have it's down-side with some people, I just forget when I started on Ramipril but it must be 8 years or more now.

Keep an on your own bp by buying a home monitor, they are very cheap now and reliable and cost around £15-£20, just make sure you get one with the arm-cuff as these are said to be more accurate. When you attend clinic you can present your home readings to the nurse or gp, my own gp takes a note of my readings rather than that in the surgery/clinic.
 
I've just been thinking is it not strange to be getting panretinal laser if I haven't had any new vessels for 3 months? Surely if I have some leaking ones each of them should be getting lasered not the whole retina?

Sounds like you have a good GP Noble I'm not sure all of them would take the time to read a patients results :roll:
 
CathyN said:
Sending lots of positivity to you Southern General.

Keep doing your visualising and try to keep as relaxed as you can whilst you get more information.

All the best

Cathy N xx
Click to expand...

From me as well with best wishes RRB
 
Sending you positive thoughts and best wishes Southern General.
 
I decided against the laser once again it just seems so brutal :sick:.

I suppose I just have to hope when I get the scans done again in a couple of months that the bleeding from the new vessels has stopped ... hopefully with better control this will happen.

On the positive side he visually examined my eyes and said the right one had improved since May so at least that's some good news.
 
I decided against the laser once again it just seems so brutal :sick:.

I suppose I just have to hope when I get the scans done again in a couple of months that the bleeding from the new vessels has stopped ... hopefully with better control this will happen.

On the positive side he visually examined my eyes and said the right one had improved since May so at least that's some good news.
 


Hi SG it doesn't really work like that, they don't laser the new vessels but by lasering the whole retina they remove the root cause of the oxygen imbalance as there are less retinal cells to require oxygen, so the retina says* - ''oh ok I'm not deprived of oxygen anymore so i'll not need these new vessels'' - and the vessels just kind of go dormant.
This is why they need to take out healthy cells during laser, which if done to excess can affect peripheral vision

(* I've just realised retinas don't actually talk, but if they did that's what they'd say)
 
I know that's the pity they can't just laser the bad bits but have to change the whole retina. Still you and a few others have said that you didn't really notice much difference in your vision after the lasering so I suppose that is good to hear

I don't mind the retina not speaking I just wish they would listen :lol:
 
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