had a bleed....

the_anticarb

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I think we are talking about the same surgeon unbeliever as I'm seeing the one you told me about who practices at Optegra Manchester. I won't reveal his full name on here but it begins with C. If we are talking about the same man - yes, he is really good, I feel safe in his hands and may even end up hero worshipping him a little!
 

leb

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Hi ac hows the eye doin?
Hope the bloods drued up enough fir ur op on fridsy.
I went to eye hisp 4 more laser in bith eyes tidsy snd have spent mist if the afternoon in tears.
Doc said he doesnt esnt to di sny mire ladet in my right eye as theres alot of trsction from scsr tissue snd lots if bloid. Si he gave a little more in both eyex and said come back in4 wks to assess hiw it is. Spoke again about the vutrectomy . I asked if he thought either eye eas responding to lader but he ssid he coulfnt tell. I knw it tskes a shile but i thought he might gvr some indication :-(
We r off on holIday in 2 wks and he told me it wss safe to fly so i guess tgsts a goid tjing but think its gonna be s luttle hsrc to enjoy it as its sll sych a w
Worry but hey ho gotta try.

Best if luck for fruday bet u cant wait nis :)
 

the_anticarb

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Sorry to hear that Leb. If I were you I'd really be pushing them on the vitrectomy. Personally, the minute I found out I could have a vitrectomy (albeit a very expensive one) I was like 'where do I sign' as I just want it sorted. I've heard that the longer they leave it the more damage can be done from the scar tissue caused by the bleeds. Also, in my particular case, I was told by the private consultant that more laser would be ineffective yet the NHS said that was the only treatment. So it was a no brainer. I know not everyone can afford private treatment but I would rather be poor than risk blindness by letting the NhS take care of my eyes. I can't really afford it myself, but I've emptied my savings account and family have helped me, because my employment was on the line.And I'll do it again in a heart beat if my rt eye ever goes.

My bleed has mercifully stopped, and cleared a lot, not sure how much of that is due to the Avastin or would have happened anyway, but I don't trust my eye not to bleed again whilst these bad vessels are around and the surgeon is going to remove or cauterise them when he goes in there on Friday. Also he will completely remove the eyeball jelly, which I've heard does not regenerate (your body produced aqueous fluid to fill the gap inside your eye), thus removing the issue of traction should the vessels recur.
I'm not trying to be a vitrectomy sales person here - honest - but from what I've read once retinopathy is this far down the track and if laser is not working it's pretty much the only option. So I'd be seriously considering that if I were you Leb, if the laser does not begin to work very soon.
sorry to hear things are not going well, it must be terrible having bleeds in both eyes also. Do you trust your consultant? If not, can you ask to see another one?
 

leb

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Hi yep thats my intention when i go back. If the laser shows no sign of working this time. I guess the fact he has said that might be tje case and said abouy the op im luckier than u wsd as far as nhs go if they never menrioned it to u. They do seem to be folloeing tje guifelines as set out ny moorfields private spevualists so im guessing thats reasurting to some degree.
But i totally ahree if when i go bavk they say i cant have the op ydt then i will seriously look at funding it somehiw. I am at my gp tomorriw so am gonna adk hiw to go about a second opinion.

Good luck fir friday plesde let me kniw hiw ut all goed as soon ad u feel up to typing that is

All the best :)
 

the_anticarb

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Thanks. I think I would have got the op on the NHS eventually, but I didn't want it to jeopardise starting my new job. Also the more I read the more it says that it is better to do the op early.
In my case I'd had a lot of laser to my left eye, and will have some more as part of the op, but it obviously hasn't been stronger than the disease or else I wouldn't have had the bleed. Although it may turn out to be relatively minor bleed, as it cleared pretty fast (about a week later) and only bled for around five days, I didn't want the risk of it happening again.
Already this week I have noticed 'the fly' again - this was my word for the little black floater that kept cropping up in the week before my bleed! Apparantly it is a sign that a proper bleed is on the way.
Anyway hope mr. C can kill this fly and all the other ones tomorrow!

I don't know if they have any near you but I have used Optegra private eye hospitals. I'm sure there are lots of places that will do a private consultation though.
I'll blog on how the op went as soon as I'm able to - may not be for a few days though!

Hope the laser works for you.
 

the_anticarb

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Well I had the vitrectomy on Friday, thought I'd let you know how I got on. I think it's gone ok, in that everything went to plan during the op and they didnt need to put the gas bubble in, but the next few weeks are crucial as there's a risk of post operative bleeding which if excessive could mean another op.

I was at the hospital around four hours in total. They really are very good at Optegra, very welcoming and reassuring and made me feel well looked after- so important when you have an eye problem which is stressing you out.

I was intially prepped for theatre and met the anaesthetist and nurses who'd be dealing with me. I had my eyes dilated and checked by the surgeon, he said luckily he would not have to actually cut open the eye as is sometimes the case, and he could just do the op with incisions.

I was then given a cannula for the sedation drip and an anaesthetic block applied to my eye so that it was completely paralysed and unable to feel pain. I was covered in a sheet with a hole for the eye they were working on, and oxygen piped under the sheet. I wasn't given a lot of sedation, as they are afraid of people nodding off and jerking their head, so I felt a little relaxed but was still completely conscious throughout.

Now the weirdest thing - as they were working on my eye I could actually see from inside the eyeball they were working on! I had assumed it would be all black in there, but no. Obviously I could not see when they were right on the retina - but I could see stuff a little way above the retina. Like, they put an infusion port in my eye and I could see the base of this sticking up into the eyeball. I could see them sucking the eyeball jelly out, it was a bit like being on the bottom of the ocean watching jellyfish and flotsam float by!

They took the eyeball jelly out first, then they cut away at the abnormal vessels, I could see when these were removed and there seemed to be quite a lot from my view point, I remember thinking thank god they've got these out now. They cauterised some of the vessels which were growing on the surface of the retina and I could feel them making the tiny burns to seal them. They also did some laser with the endo laser. It didn't seem to take as long as it does with ordinary laser, but then I was a bit out of it so time may have passed more quickly - I was in there for two hours in total although it seemed shorter.

The worst part of the whole thing was having to keep still for so long - my head was in a head rest which was not very comfortable and began to dig in to me. This got really uncomfortable and eventually I had to ask if I could move to a more comfortable position.

Then when they'd finished working on my eye, they sewed up the three little holes which I could feel them doing quite clearly (although no pain of course) and then patched up my eye with a swab and a shield. Then I was all done, although still a little woozy from the drugs for a little while I was unsteady on my feet however completely able to talk to the doctor and nurses.

After around half an hours recovery I was sent on my way with a bag of eye drops and a lovely body shop eye mask to keep in the fridge!

Relieved it was over and had gone well, I went home to bed for the rest of the day where I've stayed pretty much since. My eye was a bit sore but nothing too bad, and I'm putting in three lots of eye drops every four hours. I have to keep horizontal for two weeks but then can potter around the house for a further two before returning to normality in four weeks i hope.

One good thing about going private is the level of aftercare, I've had a nurse phone me every day to check how I am and I'm back at the hospital on Monday for the doctor to see me.

So far I've been very happy with the op - I can't tell you how relieved I am that the bad vessels are no longer doing damage inside my eye, and I'm very hopeful that this will stabilise the condition permanently.

For me it has been totally worth it going private - the best money I've ever spent (and the most probably!) . The hospital itself has been lovely - very friendly, reassuring staff, great facilities, high level of expertise and little extras like the 24 hour phone line I can call. I feel very fortunate that I was able to see this consultant (thank you again Unbeliever!) and take this option.

Hopefully all will go well with the recovery and I can look forward to getting on with my life again.
 

leb

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So pleased for u ac. Althougj the whole thing soundds bit scary as u say at least its done now. And u can concentrate on getting back to normal.
Wishing u a speedy recovery
Keep us posted :)
 

noblehead

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I can't believe you were awake throughout :shock:

Pleased you've got the operation over with and here's to a speedy recovery!
 

the_anticarb

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noblehead said:
I can't believe you were awake throughout :shock:

Pleased you've got the operation over with and here's to a speedy recovery!

Is that unusual - were you under a general when you had yours noblehead? It wasn't too bad actually, i was more fascinated than scared when I realised I could watch the show from inside my eye! The sedation probably helped a little with that though.
It was most interesting watching what they sucked out, I had not realised how much rubbish was inside my eye from the disease, (bloodied vitreous, new vessels and scar tissue). Also, the doctor was explaining to one of the nurses what he was doing so I had a bit of a commentary going on, which I quite liked, as I'm someone who likes to take an active interest in my medical treatment rather than just leave it all to the doctors as some patients might.

I know everyone's condition is different, but if you consider how much my eye deteriorated in just six months (as at my last check on 21st December 2011 there were no new vessels at all) then it spells out to me just how important it is to have an early vitrectomy in cases such as mine. If the right eye should go the same way I'd have no hesitation doing this again, (would try laser first but if that was unsuccessful). I know vitrectomy not a cure, as the vessels can always come back again in the future, but it seems to be the next best thing in cases of rapid proliferation where the laser is not sufficient to regress the disease before it does real damage.
 

the_anticarb

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leb said:
So pleased for u ac. Althougj the whole thing soundds bit scary as u say at least its done now. And u can concentrate on getting back to normal.
Wishing u a speedy recovery
Keep us posted :)


Thanks Leb. How are your two peepers? Have they stopped bleeding yet? Thinking of you....
 

noblehead

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Totally out of it, I had the gas bubble also which was a pain having to lie with my head tilted for 10 days. As I said to you last week you may develop a cataract in the eye over the next few months which is normal after a vitrectomy.......for that I was wide awake :)
 
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Well done ac on your operation, I am so pleased for you, but I couldn't read alot of your post because it makes my stomach very queasy :oops: :sick: you are SO brave and well done :thumbup: best wishes RRB
 

the_anticarb

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Robinredbreast said:
Well done ac on your operation, I am so pleased for you, but I couldn't read alot of your post because it makes my stomach very queasy :oops: :sick: you are SO brave and well done :thumbup: best wishes RRB

Sorry about that forgot some people may be squeamish! I once worked for a private hospital (in HR) but to understand people's jobs I spent the day in theatre, saw a few operations including a hip op - now THAT made me queasy! This was pretty tame in comparison.
 

Unbeliever

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I am very pleased for you anticarb and wish you a speedy recovery. As Noblehead says the downside is that you may develop a cataract. Any eye surgery carries his risk. my stroid injections which are counted as surgical procedures have caused caaracts in both eyes . I have had one removed but am resisting having the other done until absolutely necessary as I dont particularrly like
certain aspects of the new lens. However, as I was blind in that eye because of the cataracs I had no choice.
the other is not so bad - yet.

Vitrectomies are often performed as a last resort and that is obviously when they are very risky. I am sure you will be fine .

The only thing is - I do hope you have not enticed my surgeon away on Friday afternoons which is one of his operating days in my hospital! His deputy is from a differnt planet and is not coming anywhere near me with a scalpel!

I think everyone concerned is well aware of this.!

make sure you rest as ordered.
 

the_anticarb

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Unbeliever said:
I am very pleased for you anticarb and wish you a speedy recovery. As Noblehead says the downside is that you may develop a cataract. Any eye surgery carries his risk. my stroid injections which are counted as surgical procedures have caused caaracts in both eyes . I have had one removed but am resisting having the other done until absolutely necessary as I dont particularrly like
certain aspects of the new lens. However, as I was blind in that eye because of the cataracs I had no choice.
the other is not so bad - yet.

Vitrectomies are often performed as a last resort and that is obviously when they are very risky. I am sure you will be fine .

The only thing is - I do hope you have not enticed my surgeon away on Friday afternoons which is one of his operating days in my hospital! His deputy is from a differnt planet and is not coming anywhere near me with a scalpel!

I think everyone concerned is well aware of this.!

make sure you rest as ordered.


He's not your surgeon Unbeliever, he's mine! :D
 

catza

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Now now children, I am sure the nice surgeon wouldn't want you falling out over him. :D
 

leb

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Hi ac im not havin a great time at the minute but i know i neef to give the laser a chance. My 1st lot wasnt sufficient i kniw ad that wad 13 weeks ago niw and ive obviously needed these last 3 sessions. But its only been 4 weeks since my first lot of the secondround so i kniw i need to wsit a bit longer yo see if it takes effect. The constant bleefing is kinda telling ne its nit gonna wrk but i guess u never know. I have an apt on the 8th and have spoken to the consultants secretary about actually seeing him and she has said that shouldnt be a problem but she has to ask him out if courtesey and is going to ring me on monday to let me kniw. I must say i was dreading making that phonecall after reading the horrir storues people on here seem ti have when cintacting their eye clinic but u must say she seemed grest. Obviously if she doesnt get back to me I may think different but for niw i am happy witj her response. She said he is very understandung when people are so anxious about their condition and hes normally very acvommodating so fingers crossed.
I will defginitely be asking about a vitrectomy if thetes no improvement as tgeyhave already mentioned it.

Hope itd not too uncomfirtable for you. Make sure you rest and do as the doc has ordered;-)

Take care x
 

Unbeliever

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catza said:
Now now children, I am sure the nice surgeon wouldn't want you falling out over him. :D

I am not entirely sure you are right about that catza, nor am I sure that "nice " is the appropriate epithet.

I sw him first! Anticarb has paid him a fortune ,of course, but I have paid in blood swaeat and tears in making sure i saw him
rather than anyone else!

My eyes are now at the stage where I would refuse treatment by anyone else {and they have refused to treat me because they admit it is beyond them} I would rather take my chances without treatment than take the risk of an inferior surgeon treating me.

So it may come to eyeshields at dawn catza! You can referee! :lol:
 

the_anticarb

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Actually Unbeliever I don't see the need for eyeshields at dawn after all. Surgery started at 11, all done by 1 - then straight on to the M56 from Optegra and he can be back in Chester for clinic at 2! Besides I think that nice Mr. C has super powers....