Well just to give everyone an update on my visit to consultant today.
Pressures are still not coming down enough so it looks like I will be joining the trab club in the next 3 months or so.
I'm absolutely petrified of the whole thing especially if I have to have ocular massage or needling!!
I know a lot of people on here have already been through this and come out the other side so I'm hoping with your help I will be able to do the same.
Thank you for being there for me.
Sorry to read this Callie, but like you said a lot of people on here seem to sail through it without too much trouble. Can I ask what was the last treatment they prescribed for you before coming to that conclusion?
Hi DonYes I have been on numerous drops and have had slt done twice but nothing seems to bring pressures down. This is my last resort.
Ah it is a scary thought but honestly it’s fine. I was the same, pressure would not stay down in my bad eye. Trab really is the best thing for it. I’m 9 months post Trab now. I didn’t have to have any massage or needling and so far (fingers crossed) pressure has stayed down.
Thank you Wales99 I hope mine goes as well as yours. You are doing so well x
Thank you! I am sure yours will go well too. As Trish said, any operation is daunting but it will all be over before you know it. I took advantage of the buddy scheme before my op. I still have moments of panic that my pressure has gone up again, still have meltdowns about going blind. I’m very lucky in that I have a wonderful husband who is great at scraping me off the ceiling & calming me down 😂. Let us know when you get the date through. You’re not alone, always remember that. 😊.
Thank you Wales99 I too have moments of panic and anxiety attacks over my glaucoma. It helps to talk to people who have been through the same thing. X
I had a Trab Jan 21 and it was fine. Completely pain-free. A had the massage thing but again that was fine. None of it is anywhere near as bad as what happens in a dentist chair!
Hello Callie, having surgery can be very daunting, but i'm sure you'll receive lots of help and support from the forum.
If you would lie to speak to someone who has had the procedure, we can put you in contact with one of our buddies. When you get a date for the Trab, give the helpline a call and we can arrange this for you.
Thank you Trish I will definitely be in touch for moral support when I get my date through. X
Hi Callie, perhaps the migs club is an alternative? The minimally invasive glaucoma surgery. You might be a good candidate. Just a thought…
Hi camonlineYes it was mentioned but consultant thought a trab would be better. So I just have to bite the bullet!! X
I know you are scared Callie, it's always a thought knowing you are going to have an eye op but you are not alone , you've got all of us to support you. I didn't have to do ocular massage this time round and so far no needling required either. Four weeks after both my trabs I was drop free 😀. Try not to focus on the negatives but on the positives and if further intervention is required you deal with that then but hopefully it will all go well. X
Hi Callie, you are certainly not alone with this. I know how scared you must feel as I was exactly the same. However, having had one trab and am now drop free in that eye, I am almost looking forward to having the other eye done!! Once I was told I needed the second op I just accepted it. Although I’m not looking forward to it, I try to focus on not needing drops any more once it’s all over - that’s a big positive. My consultant says the trab is still considered the gold standard treatment for glaucoma and it was this that persuaded me. I’m just waiting for a date for my second trab, so perhaps we can go through it together! Thinking of you xxx
Thank you redshoes. It looks like your first trab was a success and you are doing well.That gives me hope.
To be honest anything medical freaks me out so I will be having it done under ga.
Thank you for your reply and for holding my hand through it. It really helps. X
Hello Callie77. Looks like we are trab twins 😂. Like you I am on max drops, with pressures still not playing game. They added oral diamox, which has done the job, but it can only be used short term as it can damage kidneys/liver. So I'm on the priority list for a trab. Not holding my breath though as I've already waited a couple of months and still no date. Surgery is the one thing within this journey that scares me, the most. So I can empathise with you big time.
I too am waiting for trabeculectomy in both eyes....I was told within 3 months.... that was two and a half months ago and I have another OP appointment in 2 weeks. Getting a bit fed up with waiting as I can't make any plans in case I get the call, and I need both eyes doing.
Oh bless you. I too need surgery in both eyes. I have lots of stuff planned already this year, including my sons wedding party, which was delayed from last year. But I know I'm going to prioritise surgery if there's a conflict and I'm having to hold off booking stuff like train travel . Every time I go to the eye Hosp they promise to try push me up the list but nothing materialises. Logically I know it's because they are playing catch up post COVID. However, my sight has already suffered because they delayed my appointment due to COVID and its essentially a choice between further sight loss or risking kidney damage whilst I wait.
Hi
I had trab a month ago.
Last year I had a stent which then stopped working because my eye healed around it and blocked it.
Before the stent I'd been on 3 types of drops which worked for a bit but then couldn't keep my pressures down .
I haven't had to have massage or needling. Yet.
The trab isn't nice to think about but was bearable because the anaesthetic drops work very well and there was a lovely calm atmosphere in the operating theatre.
The hardest part is being patient afterwards with restrictions on movement and the intense eye drops regime.
Best wishes with it all.
Hi Callie. I think anyone who has had a trab does understand what you are going through. I can tell you that as a 29 year old with a 3 year old I was absolutely terrified! I would burst into tears at the slightest mention of it and I think my consultant knew that I wouldn’t have coped with a local for the surgery. If I had to think that I would have had the things I had done after it, it would have sent me over the edge! I think it’s best not to be thinking of needling and massage etc at this point and just take it in small stages. Go through each step and tick it off. Afterwards I felt the relief and it’s always the thought of something more than the actual thing itself that scares us. Try not listen or read the horror stories as you will always find some. Surgery might be your best long term bet and I’m so grateful to my consultant for making that early decision.
Hi Vich81 thank you for your reply. You were so young going through this op. I hope everything is well with you now. Everyday I'm consumed with the thought of going through this but know I must.It will be under a general but I'm always thinking ahead x
It might well work out to be for the best. I can honestly say I’ve not had too many problems with the trab eye over the years. I’m very protective of it. I still have a pretty decent level of vision in that eye despite damage that happened when I was pregnant. We think we can’t do something but when faced with doing it we find inner strength from somewhere. I’ve just come back from an appointment to have my 34th injection in my left eye. Each time does not get easier but I still do it and that’s it now for another 6 weeks. I had a CRVO in that eye 5 years ago. I don’t have a bleb in that one. You will be fine if you have to get the trab. It’s more of a mind thing I think with our eyes.
What is a trab everyone is talking about is it a stent ?
A ‘trab’ is a trabeculectomy which is a procedure to help relieve the pressure of the eye on a more longer term basis. It’s a procedure used for many years as it’s well tolerated and has a good success rate. I don’t have too much knowledge of a stent as I’ve never had one but I believe there are a few different stents out there. Some are less invasive than the trab and leave a small thing in your eye. Sorry I have no other words to describe that.
Wishing you all the best for your future op x
Thank you x
Sorry Callie but wishing you all the best and a speedy resolution.
Thank you BonnieMagic
Delays with Appointments
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