Trabeculectomy

[chris4146]

Hi I was wondering if anyone has any experiences of the op I have been offered this because all other treatments have failed, I have read scare stories online and very dubious, has any one any positive stories,I'm 62 with normal pressure glaucoma,thanks.

[trevtherev]

I've had the operation in both eyes a couple of years apart. The first one was done under anaesthetic and the second one under local! Both have been successful and performed at the Moorfields Eye Hospital. I do not need eye drops anymore and my pressures are fairly stable at around 9-12. I too had normal pressure glaucoma. If there's a way of contacting you personally I'd be happy to chat it through with you.

Trevor

[chris4146 in reply to trevtherev]

Thank you for your reply,that is encouraging,how was your recovery,and I read it can give you a droopy eyelid,does this happen,? thank you very much .

[trevtherev in reply to chris4146]

hello, Chris,

Droopy eye lids are apparently a possibility but you're best asking your consultant about this.

Where are you being treated? Have you ben given an information leaflet?

Did you see the recent posts about a newer procedure?

[chris4146 in reply to trevtherev]

James Cook hospital in Middlesbrough,no not been given information leaflet as yet,it might come with my appt letter,my mind went blank when he asked if I had any questions,but now I have many . Thank you.

[chris4146 in reply to chris4146]

I don't think the new procedure would be helpful to me,my eye pressure is very stubborn.

[Anonoms in reply to chris4146]

Everyone I know does have a visible difference in their eye. It appears more sunken in the socket. All do have a droop to the eyelid and no one has every been offered any treatment. It isn't a huge droop.

More important is getting accurate information especially for those who are active - no sports for 3 months and then you would need sports protection googles.

It would be sensible to know that you need micropore to stick an eye shield on before rather than after the operation. Also some of the drugs need to be kept in the fridge and are poisonous - not good if you have children or dementees in your household. Would be helpful to know if you are going to need to go back early the next morning.

Get sleeping pills so you can get to sleep with an eye shield.

I did worry before husbands first op. You can't help it. Now am more focused on making sure they tell him stuff rather than me. Last time got discharged after surgery with stitches with no information at all. I think the watch word is checking and learning but not panicking.

[Anonoms]

You will always hear scare stories online for whatever condition it is. I had a procedure and it was boringly normal a bit uncomfortable but hey I have forgotten about it doesn't pressure anyone to make a post, so they don't post. Someone whose having a rough time and inadequate support will post. That is not to undermine those that have a rotten time ... glaucoma care is about as unpatient-centred as it can be - those posts indicate a need for more care or information.

Find out stuff for yourself. Don't watch the videos. It is scary the first time you have eye surgery but being blind is a lot worse.

Personally if it was me I would grab it with both hands. Things are going to get rocky in the future with even more patient delays..at least you will have been treated. I wish my husband had had this instead of the novel procedure he ended up being a guinea pig for which basically hasn;t worked. He is now on triple the drugs he was before has never been free of either having an appt or not having an appt when he should have had it plus all the side effects of the drugs.

[chris4146 in reply to Anonoms]

Thank you for reply, I'm feeling a bit more positive,I'm sorry for your husband's bad experience,must be awful.

[JanD236]

I’ve had the same experience as trevtherev, also at Moorfields. 8 years on my pressure is still steady in that eye and I don’t need drops in it.

[chris4146 in reply to JanD236]

Thank you for your reply,I'm feeling a bit more positive reading these replies,but was wondering does it make a permanent difference to the look of your eyes,I know I shouldn't be worrying about that if it saves my sight.Thankyou.

[JanD236 in reply to chris4146]

Yes I have to say it has changed the appearance of my eye so I am conscious of my two eyes looking slightly different. It’s exaggerated by the fact that I have drops in the other eye which give me really dark circles around that eye.

The trab eye seems a bit smaller with a slightly ‘loose’ upper eyelid. I guess that’s because the pressure is only around 8 whereas the eye with drops it’s 12-14 so I assume that leads to a difference in size (thinking of balloons with more and less air in them for comparison).

I could get upset about it but at the end of the day without the drops and trab my eyes would look great, but I wouldn’t have the sight to be able to see them! So I refuse to let it get me down.

[chris4146 in reply to JanD236]

Thanks for your help .

[lswk]

Hi Chris4146, sorry I have no experience to share. I am also recently offered by my consultant to have Trabeculectomy (due to uncontrolled IOP and visual field loss), where I am struggling with it.

So what you are asking is very valid for me as well. And thanks as I benefit from reading it.

May I check if you have any appointment dates offered by your consultant? Not sure if you are under NHS or private care? I just want to get an idea about the waiting time for now (apparently surgery got delayed by COVID-19).

Thanks a lot. And wish you all the best with the treatment coming.

[chris4146 in reply to lswk]

Hi,I am an NHS patient,it's 2 weeks since I was told I need surgery,but not heard anything yet,I'm sure he said he'd like to do it in July sometime,I think it depends how bad they think your condition is ,or how urgent,as to how long you wait,thank you and all the best to you too.

[Anonoms]

They do prioritise. My husband had to have blocked stent re-operated on as an urgency within 6 weeks but that would not have happened without him saying one month before due date (when he should have heard) hey I am due an operation and I haven't heard anything. So phone the person administering the waiting list and see what you can find out would be my advice. The other bit of advice is never to leave an appointment without knowing when in the medics opinion you should be seen. It then means you can start hassling if you are not given an appt. This is part of an RNIB campaign. Just before COVID glaucoma services were the subject of a NHSIB fact find on inadequate treatment.

If you are treated at an eye hospital there is probably someone called an Eye Clinic Liaison Officer who could help you know what local waiting lists look like.

[lswk in reply to Anonoms]

Thanks mancmum for the sharing.

In my eye check appointment in Jan I was told to go back in 3 months. Due to COVID-19 it was cancelled, without any known schedule. However I found my eyesight getting worse so I called to ask for another appointment schedule. Not an easy process, but after talking to different parties, I finally managed to get the phone number of my consultant's secretary (who apparently works part-time two days a week). She helped to pass the information to the consultant and agreed to schedule my eye check within 4 weeks. Turned out I could see my doctor in mid May.

To me the lesson is to be persistent in the communication, if there is a need to seek the care.

[Joanne324]

I had my first trabeculectomy in February then my second a few weeks ago. Surgeries were due to eye pressure suddenly going from 9 or 10 up to 20's. Had laser surgery several times, but no change. Still recovering from my second trabeculectomy, had great results from both surgeries, pressure is down to 8 and 9, just had my stitches out, doing well. The surgery itself is so much easier than I had worried about, light anesthesia, I was awake and felt some things (but non pain at all) and went home with a plastic eye cover, to wear at night, and antibiotic eye drops and steroid eye drops. Looking at my eyes you would never know I had the surgery. It feels like you have sand in your eye after the surgery, but it's just the stitches and once you get them out, it is just a little sore but normal after a few days. I would do it again in a minute, if it is every needed, was worried but it was not a big deal at all and your eyesight is definitely worth it!

[chris4146 in reply to Joanne324]

Thank you so much for this,you have really eased my worries,I am still scared but not half as much as I was,and good to know doesn't make much difference to the appearance of your eye.

[Joanne324]

I'm glad I was able to ease your worries! It worried me too, that my eye would look different, but (at least for me) no one would know I'd had surgery by looking at it. I understand your being scared about the surgery, I was scared for weeks ahead of mine, I couldn't imagine it not hurting, but it really didn't. They numb your eye with drops, and if you have the same IV anesthesia as I did, you are kind of half asleep but not really "asleep" and I could hear the doctor and nurse talking, and felt something going on with my eye but NOT pain. My suggestion would be to take the anesthesia, if you are given the option of that or just numbing drops, it relaxes you and you really don't remember anything. And be careful afterwards bending over, if you just bend over to pick something up real quick, you're good, but not so long as to put any pressure on your head or eye, it can give you a headache or harm your eye. Just take it easy for a day or two! I'm sure your doctor will explain everything and send you home with detailed instructions. Hope all goes well for you!

[chris4146]

Thank you so much .

[CTinUS]

I have no information to share in answer to your question, but I'm following this post with interest from the U.S. I've been told I will need a trabeculectomy within the next few months (pressures are in the high 20s now after maintaining in the mid-teens for years), so I am getting a second opinion tomorrow. I will check back to learn more from this thread and to share any information that might be helpful, although it sounds like your surgery will happen before mine. Best of luck to you.

[chris4146]

Thank you.

[Hula48]

I had a trab in my right eye, under local, about 11 years ago. Very good result. Pressure had been 22 ish, now more like 12. On drops night and morning. Has been revised once in Outpatients. Was first diagnosed in left eye in 88 but had had probs since 1969. That eye had pressures in the 50s in the early 90s but then we went for a trab in 93. It was quiet for years, then started up again, needed a tube, a Baerveldt, in 2006. Has been fine since but of course have lost a bit of sight after the high pressures in the early 90s. If had to rely on just that eye, could get around but not read. But right eye, since trab, is fine. Can still read and drive. I am 71 and have been having trouble since I was19 with auto-immune inflammation, which has basically blocked my drains, but there is also glaucoma in the family.

Rest up after the op. Be good to yourself. The surgeries have come a long long way even in my experience, like the local anaesthetics, and so have the drops. I have been very lucky with my surgeons, but you know they are all trying their best for you. Good luck!

[chris4146]

Thank you,I am having right eye done tomorrow,your story is encouraging,I will let you know how I get on,thanks again.