feeling down

[callie77]

Hi all,Have a presserflo in each eye and went for a pressure checkup today.

Left eye was 44 managed to get it down to 29 before leaving hospital.

On God knows what drops for the next week!

Feeling very depressed about it all.

Thanks for listening.

[KBIOW]

It’s so frustrating isn’t it…I’m afraid I haven’t got any advice or help. But just letting you know I’d seen your message and share your frustrations when it’s not what you were hoping for when you went for your check up. I’m sure someone on here will have more useful advice than me.

Take care

[callie77 in reply to KBIOW]

Thank you. It helps just knowing someone out there understands where I'm coming from.

[KBIOW in reply to callie77]

Sometimes it’s just nice to know we are all here to be there for each other. I think we all have an understanding of the situation, compared to those who aren’t dealing with their eyes, we have to deal with the appointments, the feedback, the waiting the medication and we all understand the anxiety and the worry we are dealing with. Take care.

[callie77 in reply to KBIOW]

Thank you

[Astilbe in reply to KBIOW]

So sorry to hear of your experience. I have a presserflo in one eye and a trabulectomy in the other. I had a lot of trouble with the presserflo but it settled after a year. I remember the consultant telling me that if the presserflo didn't work then she could also do a trabulectomy in the same eye. So maybe that is a possibility for you if the extra drops you are having don't bring about stabilty.

It is not easy having glaucoma, I know, and I send you my very best wishes.

[callie77 in reply to Astilbe]

Thank you for your reply it really helps. I was just hoping everything would be ok after the preserflo.

[Culurgionis in reply to Astilbe]

Hello again, so glad to be here and able to read others' stories on glaucoma. Is the 'preserflo' the same as the 'aqueous shunt implant'? I too was told that this procedure would be the best way forward to lower the pressures in both eyes but the left eye would be done first. But for now as I just couldn't face the idea of having it done this side of the year, I have been given 'dorzolamide/timolol' with my usual 'monoprost', to see if the pressures will regulate better- on my request. Luckily the new drops aren't affecting my asthma too much and at least my inhaler seems to settle the shortness of breath!

I can see that blurriness etc occurs after the op understandably, but for how long? I am hoping to get back to driving etc? It is why, with so much going on this side of the year, that I am at least delaying this procedure for now. I also know that the glaucoma is worsening, therefore I don't want to be silly either. I am gathering as much info as possible here as I do not know a single soul here who has had this procedure done. So thank you all for your kind input onto this forum. Good luck to all of you.

[Astilbe in reply to Culurgionis]

Hello culurgionis, sometimes it isn't straightforward making a decision. At least if the drops are lowering your pressure then that is ok. The drops stopped lowering my pressures, I was allergic to dorzolamide so it was an easier decision to have the presserflo shunt. My problem with it was that the tube blocked up and I had to have 2 revision procedures to unblock it. Then it worked.

[Culurgionis in reply to Astilbe]

Thanks for your feedback but gosh what a worry. Glad it is better for you now though. How long ago did you have it done and can you drive or and work? What would you say is the recovery time generally to get back to normal? I have read that some are left with a droopy eye and that it feels like an eyelash is in your eye-would you say that is the case for you? Sorry to ask so many questions!

Bless you, thank you.

[Astilbe in reply to Culurgionis]

Hi Culurgionis, try not to worry too much. Every operation carries a risk no matter what it is. I think that I was unlucky, other people don't have problems.I had it done in May 2021, told it was a new less invasive operation. As well as the tube blocking I was left with some corneal damage because of revisions to unblock the tub followed by long term steroid use after each one which didn't help.

As far as my eyesight was concerned it settled down over a month or two, faster than the trabulectomy in my other eye which I had later that year. I periodically get a flare up of the corneal damage which makes my eye irritated and sore for a week or two but on the whole I am pleased with the result, much better than losing vision due to high eye pressures.

One tip I can give is that the irritation improves with the use of Blephaclean cleansing pads which I buy online in boxes of 20, almost half the price they are in shops. Plus moisturising eye drops, mine are Hyloforte which I have on prescription.

I hope that this has helped, as I said every operation carries some risk and loads of people have no problems. Best wishes to you.

[Culurgionis in reply to Astilbe]

Thank you Astilbe.I will wait now until the next appointment to check how these new drops are doing anyway and just maybe I can hold off having the op.Thank you.

[Rainyday2024 in reply to Culurgionis]

Hello Culurgionis, I have just been reading your message enquiring about aqueous shunt surgery. I believe there are many different types (and names) for these procedures. All I know is that I was not a suitable candidate for a “trab” owing to my numerous eye problems, but my consultant/surgeon suggested a Paul Tube implant to improve the drainage in my right eye. These Paul Tubes do not seem to be as well known as other options, but through this wonderful site, I have been able to communicate with several people who have also had them done. I put off having my surgery for several years, as I was frightened, but finally bit the bullet and had it done six months ago! At my check-up last week, my consultant was very pleased and, after getting me to read the wall chart, said the (very limited) vision in my operated eye had improved. I am still having to use drops, in both eyes but they don’t seem to cause any problems, although the Cosopt (Dorzolamide/Timolol) do tend to sting a bit. The Monopost are fine. I think we are probably on the same regime! IF you do require further surgery in the future, it might be worth asking about the possibility of a Paul Tube. Hope this helps. Kind regards, Gill

[Culurgionis in reply to Rainyday2024]

Oh bless your heart,thank you Gill. If I go ahead it will be sometime in the new year. Good to know....

[Machicado]

I have a Preserflo in one eye and was also told that they could still do a trabeculectomy in the same eye should the Preserflo fail.

[callie77 in reply to Machicado]

Thank you for your reply it really helps to know I'm not on my own.

[Bellamolly60]

hang in there it’s very upsetting and frustrating

I have lost the vision in left eye awaiting third

Corneal graft, and right is under pressure with

Glare and Halos and night vision very poor

And with pm shift which doesn’t help

Take care onwards and upwards all the best

🇳🇱 🇺🇦🇺🇦🇳🇱🔥🙏

[callie77 in reply to Bellamolly60]

Thank you for thinking about me and your kind words really help

[Littlesnowflake]

I agree with all the comments and sentiments expressed. It really does affect the sufferers mental health too, it's never off my mind. The trouble is, we're totally oblivious of what is going on in terms of eye pressures and vision fields so can be an ongoing worry.Take care, keep smiling and you're not alone.

[callie77 in reply to Littlesnowflake]

Thank youyes it's the not knowing what's going on with your pressures and fighting for appointments all the time.

take care

[Helen_GlaucomaUK Administrator]

Hello. Thank you to everyone for their support, you are all wonderful!

Hang in their Callie77. Sometimes it takes a while to get going and to settle down. Your eye specialist will be monitoring you. Make sure you are being seen when your eye specialist advises. If for any reason it is longer, call the eye secretary at the hospital. You're entitled to have your down days, we all have them and I'm so pleased you feel you can ask this wonderful group of people for the support and advice.

[callie77 in reply to Helen_GlaucomaUK]

Thanks HelenI'm so glad to have this forum I really couldn't cope without it

I seem to be having more down days at moment. Thought the preserflo was the answer so was shocked at the pressure being 44.

I'm so scared of what's in front of me but thank you for your reply I appreciate it.

[Crafty-gran]

Thinking of you

Hard to stay positive all of the time

Lots of love and support on here 🥰

[callie77 in reply to Crafty-gran]

Thank you. Much appreciated. It helps to know there are people I can turn to.

[whitedog in reply to callie77]

Hi sorry to hear about the high pressure.

I was just wondering how they got it down to 29 - with drops? Is it possible a drop combination with the Preserflo might be a solution?

Take care x

[callie77 in reply to whitedog]

hi I was on fixapost once a day.At hospital they gave me Iopidine, cosopt and dexafree,gave it again an hour later.

also gave me monopost to take at night.

Got to take all these drops till I see the dr on Friday. hopefully something will work.

[Jeffvader]

Hi Callie,

Sorry to hear about your struggles. When did you have the operation(s)? I have had the pressoflo in my right eye nearly 2 years ago and had a revision 12 months later. At the moment my pressures are under 20 however they have been slowly rising over the last 3-6 months so i may need more treatment. The doctor told me that they can last 5+ years but often a lot longer, however as its a relatively new approach there isnt huge amoutns of long term data on outcomes.

Are you back on any drops? I went back on Timolol once a day.

[callie77 in reply to Jeffvader]

hiI had first op in September 23 in RE and 2nd op in March 24 LE.

It's the LE that's giving me trouble.

Dr has put me on a lot of drops and will see on Friday if any are working.

I wish I could have got 5 years out of it!.

I wish you all the best with your eyes and thank you for your reply.

It's good to speak with someone in the same boat.

[Jeffvader in reply to callie77]

Hi Callie,

It's so frustrating when you think it should be sorted but it doesn't work out the way you hope. Your surgery still feels quite new, it took my eye nearly 6 months to settle down first time, and then the revision op a couple of months. You might need revision which is much less intrusive I found. I had hoped to stop all drops, and I did for about 8/9 months and then was back on them again. As frustrating as it is, all you can do is be diligent with your care plan.

Good that you are seeing the doc on Friday really hope that you find a path that helps you both physically and mentally.

Sending you the best wishes and have all fingers crossed for you

[callie77 in reply to Jeffvader]

Thank you jeffvader

[Lovearoastdinner]

Hi Callie 77. I had a Trabeculectomy in June. I got very down as my left eye was blurred for 2 months due to regime of drops. Also I could do very little. No lifting, bending, gardening, housework, showering, driving or too much reading. However, I had good surveillance at Machen Unit Warwick Hos. Now back playing golf and life back to normal. I think you have to trust your consultant and do as advised. Sure you will come out the other end. Chat again? Angela

[callie77 in reply to Lovearoastdinner]

Thank you Angela, Glad it all worked out for you in the end.It is very depressing when nothing seems to work for long.

It stresses me out more when you have to chase appointments all the time.

Got to try and not dwell on it but it's very hard.

P.s. roast dinners are my all time favourite.

chat anytime

[Lovearoastdinner]

Hope the replies you've received help you navigate the appointment system. I usually end up ringing the booking area to get something organised. I am having a Roast dinner this Sunday at our Cricket club. Always good when not cooking yourself. No washing up! Try and stay positive. My eye is also very dry, so forever putting drops in for extra moisture. However since surgery don't need glaucoma drops.

Where do you live? I am in Warwick. Had glaucoma in left eye since 2020. No history in family, but took anti histamine for a rashing condition, may be connected.

Angela

[Karinetta]

Hi yes know that you are not alone. I had preserflo done in one eye. I had 2 weeks off and headaches and all the drops were stressful. I also think because you can't see it ( sorry about the pun) it is difficult for others to understand. Especially the initial precautions I was quite paranoid not getting water in eye etc etc. It has got soooo much better. Time has settled everything. If you had stitches it felt good when they came out.

.

[callie77 in reply to Karinetta]

Thank you for your reply. Glad you are on the mend now.Hope to see consultant soon see what they're going to do next!

[Karinetta in reply to callie77]

Yes that should give you reassurance. Let us know how that goes.

[callie77 in reply to Karinetta]

👍 will do