well I just thought I would give an update on my rollercoaster ride.
went to see consultant yesterday after not seeing anyone for 4months.
was expecting to have trabs done as I had signed the consent forms but he checked my pressures and they had come down to 18 and 16 which was good news.
I was so nervous and anxious that he recommended I have the Preserflo microshunt instead of the trabs, but in the meantime he is going to monitor me.
Im on Cosopt and lumigan at the moment but am changing to monoprost because lumigan is giving my eyes a hard time.
I dont know if my pressures will rise again because of this change but I will find out.
basically i forgot my big girl pants just when I needed them!
I'm so sick of this disease and being on a rollercoaster.
if your still reading this,thank you and if you're not I don't blame you!
just had to get it off my chest. Why do I have to be so anxious all the time?
anyway thanks for listening I'm off for a large glass of wine!!
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callie77
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That sounds good news if your pressures have come down ! Yes it can be a bizarre condition because pressure can fluctuate. But for now things seem good. Enjoy .
A glass of wine ( or 2!) is definitely what you deserve and so pleased things are a bit more managed for you. Fingers crossed they stay that way. It sure is a roller coaster at times that's been my experience too, so it's heartening when there is good news. Enjoy
This is good news, I’m really pleased for you - and don’t give yourself such a hard time sounds like those big girl pants were firmly on!! Hope the wine was delicious….
I’ve got my first trab on Monday so my fear is starting to kick in, getting put to sleep though as also an anxious soul - bit more worried about the recovery and the what comes next rather than my actual day in hosp. Off to hop on my spin bike to burn off some nervous energy….whilst I still can!
Hope you manage to relax a little now and enjoy the weekend - hopefully the new drops give your eye less of a hard time and work their magic. I had a bad reaction to Brimonidine and as soon as I stopped taking them everything calmed right down - switched to Brinzolamide which my eyes much prefer and didn’t affect pressure with the switch. Although I’m one of these odd cases where my pressure sits at 10 or 11 in each eye which sounds super low yet clearly not low enough for my body as damage is still occurring and sight loss in my bad eye is now classed as aggressive - so hopefully trabs can still be effective for us low pressure bunch as I’m starting to panic given I’m in my 30s. Hopefully it will be onwards and upwards from here, fingers crossed.
Good news on your pressures. Both my eyes have had the Preserflo Shunts. Pressures are down - hopefully still are for my follow up appointment this coming Wednesday. Sending good luck for yours too.
Hi Callie. I had the Preserflo op on my right eye back in April as an emergency as the pressure was 56 I seem to recall. The left eye pressure was yo-young between 20-29 I think so they decided to operate on that eye too. As Toby has explained, it’s relatively new and I assume this is the way forward. The right eye was operated under general and is doing well. They called it text book case as the surgeon did a fantastic job.Pressure is 9 so far.
The left eye was under local about June. I’d rather it was general but it’s done now. Pressure 9 I think. It’s slowly returning to normal, less fuzzy but it does take weeks for this to happen. I can drive now but you must rest etc after this operation. Rest assured, they know what they are doing. Best wishes, C x
Callie you have had a total rollercoaster ride indeed ( I hate rollercoasters )and waited so long for a trab so although your pressures are down ,which is great, I'm sure it's still mixed feelings. You have had your big girl pants on the whole time,you just don't realise it. I hope the new drops keep your pressures stable but without the side effects.
I'm sure if the consultant has now suggested a microshunt instead of trab he must think that's a better option .
I hope getting it off your chest and the glass of wine helped. X
Hi Witchie yes your right it is mixed feelings. I had worked myself up thinking I was going to have the trab op, even had a pre op but consultant thinks I wouldn't cope with the aftercare. So nervous I couldn't keep still!I was in there for 2. 1/2 hours and nearly broke down by the end of it!.
Maybe I did have my big girls pants on and just didn't realise it.
I hope you are still doing well and enjoying life.
Oh Callie I know exactly how you feel it's awful and no one else really gets it unless they've been there themselves. That's a long time to be waiting at the eye hospital and I would have been the same.My blood pressure which is normally totally fine goes really crazy because of my total stress whilst at the eye clinic.The thought of any op is scary,we would be robots if we had no concerns about it at all.
I had the Preserflo shunt operation two months ago so please get in touch if I can help you with anything.
It’s a much less invasive operation than the trab with a faster recovery time; I’m still being monitored but fingers crossed so far so good.
Congratulations on your low pressures! It’s normal to be anxious especially if you’re waiting for an operation so reach out if you need to; we’re all here to support you🙂
Although I have lost vision in one eye due to late diagnosis my left eye was undamaged although pressure was very high, so it was more of a preventative measure.
My pressure dropped from 42 to 5 and is sitting at 12 currently, where the hope is it will level off and stay low.
Microshunt surgery is quicker and less invasive than trab surgery and from the comments on this forum it seems to be becoming more widely used. Apart from blurred vision which is to be expected I had no ill effects and felt fine afterwards, although there is a strict regime of eye drops which is important to follow after the operation.
I have complete trust in my surgeon but if you are unsure I would ask your consultant to talk you through your treatment options. My consultant was concerned with me moving about too much so he recommended a general anesthetic, which for me eased the trauma.
Hi Toby Thanks for your reply it has made me feel a little bit less anxious about the op.It sounds like you are doing very well and I hope it continues.
My consultant has said he would do it under a general aswell because I am too nervous and can't keep still.
How are you; I was just wondering if you had a date scheduled for your microshunt surgery yet?
Just to say Trish can put you in touch with a Glaucoma UK “buddy” who can talk you through their experience of the same procedure, which you may find helpful. It definitely helped me before my surgery.
Consultant has put me on monoprost drops now and wants to see me in 8 weeks from my last appointment, which would be beginning of Sept unfortunately my appointment has come through for December!!! I've been trying to get secretary but she's on holiday!!!
I think the preserflo op is still on the table and it really helps to speak to someone who has been through it already.
Definitely will need a buddy when the time comes.
How are you doing now? Have you had any problems or are things going ok?
Thank you for taking the time to write to me I really appreciate it. Take care.
Like you my next appointment has been scheduled for later than anticipated, but fingers crossed everything seems to be going well so far.
Before my operation when my surgery was delayed due to Covid I booked an appointment at Specsavers so I could monitor my eye pressure in the interim; this may help put your mind at rest while you wait for your next appointment.
I am actually on the Buddy list and would be happy to talk to you if you are scheduled for surgery.
Good to hear your pressures are lower . Hope they continue to be .🤞🏻
I think it’s natural to be on an emotional roller coaster as eye conditions fluctuate and unlike some other health conditions where you only need to take meds or have an op and it sorted , it’s not the same for our eyes .
I don’t think it helps when appts get cancelled etc.... it makes people more anxious .
Hello Callie77, The treatment is depending on various factors - IOP, Visual field, OCT, eye condition etc etc. - individual's condition. You can listen/view the various consultants talks at the Glaucoma UK web site. Please discuss the various options of treatment with your consultant, I am sure your eye consultant will give you the best option which is suitable to you. According to one of the eye consultants the eye operation is only beginning of the treatment because there is regular follow up after the operation is so important and crucial as well. With best wishes.
My names Colin i'm 29 and i currently reside in Australia.
a few years back i had random extreme spikes in eye pressure, i think it used to hit the 40's in the left eye. The pantomimist said it it spikes again use Combigan to lower the pressure.
a few weeks later it would happen again at even higher pressure he rushed me to the eye hospital where they diagnosed me with Uveitis Glaucoma. They told me i needed to do surgery as it was very serious and had already burnt most of the nerves in my left eye from the random spikes of eye pressure. They told me i had to do trabeculectomy surgery, they informed me the pressure would never go high again and i wouldn't need to use any eye drops in the long term. i thought it was to good to be true so i got it done 2 week later.
i woke up post opp and told them i couldn't see through my left eye it was extremely blurry.
they told me it would clear up after some weeks and maybe months in bad cases.
4 years later unfortunately my vision never returned my eye stayed blurry.
I'm also on prednefrin forte eye drops once a day in the left eye for the rest of my life as my eye gets inflamed every 24 hours. I'm also on Virgan eye ointment once a day. (Eye is forming cataracts from the prednefrin forte regular usage as well)
Post opp i also got a droopy eye lid after surgery (Ptosis) . They said don't worry we will fix the Ptosis, i had surgery and 7 months later it started to droop again.
I wish i never did the surgery, i would have still had clear vision, no droopy eye lid and no regular medication, but hey that's life and sometimes things don't always go according to plan, we just need to stay positive.
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