Fed up

[callie77]

Hi everyone,I had a presserflo op in Sept 23 and another in March 24 brought my pressures down to 11/12.

Now on my last check they were up to 19/14 and consultant has put me back on drops once a day.

I'm so fed up feel like I'm going backwards.

Is this normal? thought I would be free of drops.

Thanks for listening.

[Bazzer65]

Hi Calli77

I feel your frustration as I had my operation and nothing has changed for me and my pressures are the same as they was😢I have normal pressure glaucoma so it’s really hard to determine what is causing my eye sight loss. I,m sorry that you have to use the eye drops again! It’s such a very difficult eye disease isn’t it? I’m so hoping that they find a new treatment soon

[callie77 in reply to Bazzer65]

hi Bazzer thought I replied to you but can't find it now.

So sorry it's not worked for you, it's so depressing are you back on drops?

I thought presserflo might have been the answer. Just need some good news for a change. Keep in touch.

[Bazzer65 in reply to callie77]

Hi Callie

Yeah I still take drops morning and night which I’m okay with but nothing seems to bring my pressures down😢 it’s my left eye which I have the sight loss so I’m hoping my right eye keeps me going 👍. It’s very frustrating but I just try and look to the future and hope they have a breakthrough x

[callie77 in reply to Bazzer65]

Hi BazzerIt just seems so unfair that it works for some and not others.

I hope they do come up with a new treatment that works for everyone.

Take care

[Bazzer65 in reply to callie77]

I hope so too.. happy to chat if you need a listening ear

[callie77 in reply to Bazzer65]

Thanks Bazzeryou too if you need to rant!!

[Arif_123]

Hi

It was the same thing for me I had my op September 2023 and on my last appointment they checked my pressure it was 14/15 and they put me on monopost eye drops they did realise that I lost some vision.

You just have to be positive and hope for the best I hope they do find a cure.

[callie77 in reply to Arif_123]

Thank you Arif I thought it might have been the miracle I hoped for!It's a hateful disease. I wish you well.

[callie77 in reply to Arif_123]

Hi Arifcan I ask if your pressures came down after being on monopost?

[Arif_123 in reply to callie77]

Hi Callie,

I was put on the drops end of May I have an appointment in a month or so and will find out then.

[LineyJ77]

I had that surgery in April and pressure plummeted to 5 and won’t come back up despite a second op to stent it. Meanwhile pressure in my other eye is bouncing between 24 and 40. I’m taking all manner of drops for each eye. Totally fed up too. Can’t drive or work as my vision is so bad. Just want my life back.

[callie77 in reply to LineyJ77]

I feel same way.Totally fed up.Nothing seems to go right.

Just need some good news for a change.

It takes over your life. Take care.

[S_Miles in reply to LineyJ77]

So sorry to hear that. I don’t think that old life will come back.

[KayGeeBee]

Hi Calli77,

Sorry to hear of your distress.

I had preserflos in Dec 22 and July 23. In the first eye the pressure slowly crept up post-op and I'm now on Tiopex once per day, which has brought the pressure down to 12 from a mid-teens value. Time will tell if this is adequate.

The second eye is now stable below 10 without meds, having initially been too low post-op with hypotony, which eventually resolved.

One of your eyes has only risen from 12 to 14, which may be a normal post-op rise? The other has risen more and the meds will hopefully work with the preserflo to achieve a lower pressure than the meds alone could achieve before the op.

Being med-free may be the ideal, but may not be a reasonable expectation? I view my preserflos similar to an extra med that works alongside others if necessary.

[callie77 in reply to KayGeeBee]

Thank you Kaygeebee that makes sense. I must try to be more positive and hope my eyes will improve with presserflo and drops working together.Can I ask how long the drops have kept your pressure at 12?

thanks again.

[KayGeeBee in reply to callie77]

I was put on Tiopex about two months ago, so I've no long-term history to report yet.

[callie77 in reply to KayGeeBee]

Thank you. Fingers crossed it will carry on working for a long time.

[Peg99]

Hello Callie77

Sorry to hear of your disappointment in having to use drops after your procedures. I know how you feel.

I have never had presserflo ops but I did have trabeculectomies to lower eye pressures. I too hoped I'd be drop free after them but I restarted drops within 3 months and have been on them ever since.

However, as has been said above, it's best to look at it as the ops aiding the drops and working together to keep your eye pressures under control. I have normal tension glaucoma and it can be difficult to control the pressures but my consultants have done so now for over 35 years with the aid of the trabeculectomies and meds. Yes, I've had blips, where the pressures have started to rise and then the drops have been changed/added to, and I have to take the dreaded Diamox capsules, but the complete cocktail has kept my pressures between 6 and 10 in both eyes over all that time. So long-term, there is every reason to be hopeful that your presserflos and drops will do the job they are meant to do.

I hope that you do not stay too disappointed and come to see that even if you do have to use drops, at least your eye condition is under control. I tell myself that while I would prefer not to take drops and tablets, at least doing so saves my eyesight and there are far worse things that could be wrong with me (yes, I'm an optimist!).

Good Luck and all the best,

Peg

[callie77 in reply to Peg99]

Thank you Peg for your reply and advice.I think you're right I need to look at it in a different way.

I was so hopeful of it bringing my pressures down and staying there.

35 years is a long time but you give me hope I will still be able to see in years to come.

Thanks again. Take care