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had a bleed....

the_anticarb said:
Are they doing anything when you go to A and E Leb? When I went they said it was not an emergency. Well it's a bloody emergency to me. I can't believe in the 21st century there is nothing they can do to stop the vessel bleeding - I'm sure if it was a vessel bleeding in your brain or something they would be able to stop it.
feel like the doctors just fob me off and I am on the dark side of the moon.
My private consultant is away until 10th July.
When I see him then, if there's anything he can do for me privately, then I'll pay whatever it costs.
Leb I sincerely hope you don't bleed any more - when did it start? Did it come on gradually and then get worse and worse?
That's what happened to me, started with a few floaters on tuesday and now is a big fuzzy cloud.
I've tried covering the bad eye and trying to get around with one eye, it's uncomfortable but can't decide which is worse that or the fuzziness.
Just remember if all else fails it is not permanent they can do the vitrectomy.
I am seriously considering getting this done privately if the bleeding continues.
My only consolation in all this is that i've been signed off work now, as I was leaving anyway that hopefully means I will never have to work for my (insert rude word here) boss who's not even asked me how I am since this happened - I think he thinks I'm faking this as I'm on notice.

Think they tend o do vitrectomy only as a lst resort here both in the public and private sectors. Of course if you have had lots of other reatment previously laser ] then it is highly risky.

I fight tooth and nail to get the surgeon I trust to perform my procedures. And he is well aware of this .I am quite prepared o change my mind about having the procedure should i get the other one. Having said that I found that with these procedures the whole thing is so risky and there are so few experienced surgeons it is very hard to check on them. You end to learn the hard way.
I am not 100% sure but I don't think hey like to do a vitrectomy until they think they have established the underlying cause of the bleeds.
Private procedures in this field are horrendously expensive. I am a member of a Friendly Society and could get some financial help . I have never tried because it is an ongoing condition not a one=off procedure and I dont think I could better the treatment I get from my consultant. With retinopathy it would be difficult i expect to pay privaely and then decide to return to the NHS.
I was discussing this with some fellow patients a while ago. if both eyes are affected you are talking £1000 per eye for injections and £700-800 per eye for laser. The whole to be repeated every few months!
The NHS don't pay anything like this of course.I think my injections cost about £80.

The main thing you can do for yourself is to keep your levels under conrol as well as your BP and cholesterol otherwise nothing will work. Unfortunately , there are no quick fixes - or guaranteed quick fixes at least.
i


Good luck Leb
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the_anticarb said:
Did you mean to attach a message to the quote UB?
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Its in there somewhere! I don't understand what is going on . It kep flying off before I had finsihed. I have had further trouble with my left eye this week but don't think it was that! Sorry - hope you can make it out.
 
Oh, I've found it now. Are you not allowed to pay for a procedure, such as a vitrectomy, privately then return to NHS for care after that?
I'm clutching at straws here, just need them to get this blood out of my eye but all the 'treatments' they say they cannot do until the bleeding stops
SO HOW DO I GET THE BLEEDING TO STOP IN THE FIRST PLACE?
I think I saw a quote somewhere that a vitrectomy was like, £3.5k per eye, which isn't totally stratospheric if it will solve the problem.
Anyway, seeing mr. private consultant in 10 days, so will see what he has to say then and just pray for it to stop in the meantime.
as i said before, i don't have the luxury of being able to wait it out, I have a new job starting soon and whilst they may wait a little while for me to join them, no new employer could be expected to wait very long.
 
Oh of course you can go back to the NHS but I was just thinking that the situation would not have changed in that you would always
find it difficult to wait. Hope it all clears up very soon. You might be pleasantly surprised.

At least you do have your private consultantion to look forward too. Time to discuss things - must be great> :)
 
Unbeliever they told me ti go to a and e when i phoned as tgey said i had symptoms of a retinal detatchment. When i said i didnt eant to kerp making a fuss everytime domething happens in my eye The doc there said i myst go if i nitice sny bleefs or other things that are dufferent as he said its best yo be sute.
 
Anti carb reafing your story is like re telling mine x i feel exactly the same. They have mentioned a vitrectomy but its a last resort because of the risks involved.
Yes my bleeding slarted with a few tiny floaters on a friday then on the wrdnesdsy had s madsive haemorage
ive had bleeds several times a day fie tge padt 2 weeks and sfrsid they are not letting up. I am due for more laser on tues but dont kniw uf they will b abke to do it. I was told at a and e the other dsy my other eye has more vessels so need more lader in thst eye too.
The only duffetence is i am luvky to have a very understanding boss (helps he is slso diabetic) i woulf be no use at work and the hispitsl told me to dtsy ad still as posdible whike im hsving so many bleefd.
I have researched ways or means ti dtop bleefing and looked at privste care alsi but even on the moorfields private clinic they follow the same trestment path as my locsl hispital eith ni mrntion if injectiond.
Hope you dont mind me adkin but how old sre you ac im 32 and they said becsuse im young the vessels grow much quicker than older patients.
I wish you lots if luvk snd im sure it will get better soon. Positibe attitude is hard belueve me i knoe but i think its important. Even if Its just for our kids we must stay hopeful x :-)
 
I'm 35 leb, diabetic 20 years this summer, so right on time for developing complications!I was uncontrolled for many years, I really struggled with eating issues as a teen and I'm afraid they really got in the way of my diabetes control. It's not that I never thought I'd get complications - I was acutely aware that I might - just the food issues got in the way of control. Sometimes they still can do, although I'm pretty good at taking novorapid to cover extra carbs now.

I'm sorry to hear your other eye has more vessels too, my only consolation at the mo is that the right eye is stable, I would go to pieces if that one went too.

I'm not happy to hear that the younger one is, the faster the vessels grow, it really is mother nature's idea of a bad joke this illness. Also, i have heard that this faulty process where vessels grow where they shouldn't only happens in the retina no where else in the body - I really wouldn't mind if it was happening in a finger or something!

I don't think my eye has bled today, sometimes I see the swirls but I think that's just old swirls circulating, it hasn't got any worse today cloudiness wise in fact as I have been upright for the past few hours it may even be a little clearer.

You're lucky your boss is sympathetic, mine started out sympathetic when I had a lot of laser treatment in the spring, but I handed in my notice a few weeks ago when I got a new job, obviously I hoped the laser would work and I could put all this behind me. Then I go off on the sick so I think he thinks I'm exaggerating it to get out of my notice period - well I wouldn't make this one up!

I've had a bad day today, lots of crying and feeling desperate, no one knows what it's like to go through this and every where you look there is debris and flotsam in your vision. Cheered up a bit now, and feeling slightly more positive, that's the thing with despair it never lasts forever although it can feel it at the time.

Couple of questions for you - how do you know you are having fresh bleeds and not just seeing old blood circulating?
Also, have you had laser whilst it's still bleeding? Or do they not like to do the laser whilst it's still bleeding? (in which case - how can it ever stop?). I am down for laser clinic but not sure if they will turn me away if it is still bleeding -will they make an assessment when they see me and decide there and then?
I'm hoping my last four bouts of laser will still be having an effect on my left eye and close up this vessel soon without the need for much more, I'm scared of losing my driving license but after having this bleed I'm even more scared of more bleeds.

Thanks and good luck x
 
Omg i too had problems with food as a teen. I wsd anorexic for 4 years and also still find food an issue. funny enough its only since these vomplucstions started that iv truely started to eat properly. so i guess tgats 1 good thin to come out of it.
They did fo some lader last time but not ad much as he would habe liked because of the blood. itd blef do much more in the past 2 weeks im reslly not sure whst theyll say on tuesday.
As fir kniwing if they r new bleefs i see the vein type dhape and little dots as thick blavk lines and dots whic from what ive been told is new blood

when its vloudy abd spotty like a swarm of glues thats whst ive been told is the blood didperding.

I feel fir you eith the crying i too was exactly the ssme. Espevislly st fuirst niw it frarjz me out eavh time but i tfy to tslk myself thtough it convincing mysef it sill clesr soon. its so mnot easy

Let me know hiw ot all goes :-)
 
leb said:
Unbeliever they told me ti go to a and e when i phoned as tgey said i had symptoms of a retinal detatchment. When i said i didnt eant to kerp making a fuss everytime domething happens in my eye The doc there said i myst go if i nitice sny bleefs or other things that are dufferent as he said its best yo be sute.[/quoteI
can't see anythinhg in my eye, leb but just feel that I have been punched in it and the sight in the eye is distorted. I have been suffering a little pain in it for a few days but today is worse.
having been a patient at the eye clinic for so long I fear the attentions of one of the more incompetent drs than whatever is happening in my eye. The usual thing. That means the effects of the injections and laser have worn off in that eye. last time I went o the clinic that eye was the beter of the two - no longer. Unfortunately it is the eye where there is very little room left to laser.
It will certainly not be considered for vitrectomy. I am going to have to let the surgeon go ahead with the cataracts op in the other eye to optimise my sight. The cataracts formed in both eyes because of all the procedures bt I have only had the one in my left eye removed because i could see almost nothing in that eye. I resisted having the other done because I don't like the Over-bright effect and the pproblems I have with it adjusting to light and glare. Oh dear.
I read somewhere that it can take up to 3 years of good conrol for maters to improve. Or sometimes it never does!
At least i am used to the injections wearing offf but a bit disappoining to have what is obviously a major bleed going on in my retina now. I only had the injections at the end of April. The steroid only lasts two months but the laser generally gives me a bit longer.
Will just have to put it down to stress .
At least i know I am not suffering alone. Just entering another stressful phase too!

Good luck to us all !
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I just thought - leb and anti-carb, you dont take any painkillers containing aspirin or any supplements that could thin the blood?? When I had a bleed I was warned not to take anythhng like this not even garlic capsules!! until the bleeding stopped

Hoping and praying for you all including you Unbeliever of course that things settle and that you can be healthy x x
 
WhitbyJet said:
I just thought - leb and anti-carb, you dont take any painkillers containing aspirin or any supplements that could thin the blood?? When I had a bleed I was warned not to take anythhng like this not even garlic capsules!! until the bleeding stopped

Hoping and praying for you all including you Unbeliever of course that things settle and that you can be healthy x x
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Thats an interesting point WJ. I stopped taking the aspirin prscribed to me autonmatically on diagnosis some time ago
but I know it was widely prescribed - a smaal daily dose of soluble spirin - and have been struck several times by the same thought when I have been asked about things like warfarin and aspirin before procedures in the operating theatre.
When I had my first bleeed noone advised me to stop taking the aspirin - my doctor told me at some stage that I could stop taking it if I wished but for other reasons.
 
I worked out for myself not to take these, but no one at the hospital said this. They really don't care all that much do they?
WJ how long did it take your bleed to stop? I think mine has bled again as saw the swirly lines, had another mini freak out, this is hell, I cannot wait til 10th July to see the consultant so am going to see if I can see someone else privately asap, even if there's nothing they can do they can answer my questions and explain options etc to possibly put my mind at ease a little.

Down to about 50% vision in my left eye now -very smoky/cloudy and very annoying. Been thinking do I patch it up and try to learn how to see with the good eye alone? Anyone tried that?
 
I too stoppef taking my asprin by mysrlf but i did start tsking grapessed and bullberry caosules ad id read they were good for retinipathy. It wsdnt till ladt werk thst i nsfe mire investigations and found thst bith can tjin the vlood. I promotly stopped tsking them on wednesday but could well have contributed ti my amount if bleeding. Its obviouslt only good if u have the fIrst stages nit when it gets thus advanced.
Ac i did try patching my eye but found tjis just ad didorientating. I niw wear sungladses all the tIme inside snd it fies help s little.
Ive started getting a curtain like blindness that comes and goes. It worse when i stand up. Thats wgat made them tjink detatched rdtina. I couldnt help but tfy to find out if this was something else and came acriss something ehic describes it exactlt. Seems ss though the amount if blood pooled athe bottom is pressing on the artery to my eye thys stopping oxygen getting in. anyone else haf this symptom??
 
leb said:
I too stoppef taking my asprin by mysrlf but i did start tsking grapessed and bullberry caosules ad id read they were good for retinipathy. It wsdnt till ladt werk thst i nsfe mire investigations and found thst bith can tjin the vlood. I promotly stopped tsking them on wednesday but could well have contributed ti my amount if bleeding. Its obviouslt only good if u have the fIrst stages nit when it gets thus advanced.
Ac i did try patching my eye but found tjis just ad didorientating. I niw wear sungladses all the tIme inside snd it fies help s little.
Ive started getting a curtain like blindness that comes and goes. It worse when i stand up. Thats wgat made them tjink detatched rdtina. I couldnt help but tfy to find out if this was something else and came acriss something ehic describes it exactlt. Seems ss though the amount if blood pooled athe bottom is pressing on the artery to my eye thys stopping oxygen getting in. anyone else haf this symptom??
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I took Asprin for a short time last year, because my dr thought I had a TIA( Transient stroke) luckily I didnn't, but as Asprin has been mentioned it made me think if this contributed to my eye problems later on?

Interesting about the blood pooled at the bottom and stopping the oxygen. Do you actually have a detatche retina? I sometimes have pain in my eye, but not terrible pain, but some that lasts a short time. Hows your eye doing today leb and AC? Hope its a better day for you all X
 
Thank you RRB. My eye today is kind of the same - very smoky and cloudy with blobs floating about in it. Emotionally, I'm not quite as bad as yesterday, when I was locked in the pit of despair, but I did have a bad time earlier when I thought I could see fresh blood swirls (I'm still not sure whether the lines are fresh blood or old blood thats circulating but stuck in a line shape iyswim). I can just about cope with this unless it starts bleeding again, then I fall apart because it just seems never ending, and like going back to square one all the time.
I've decided to do all I can to help myself and first thing tomorrow am going to find a private doctor and beg him to give me an injection to clear the blood. If there's a medical reason that I can't have it, so be it, but at least I will know that I've tried everything.
I have read that there are injections that clear the blood faster.
The fuzzy cloud is really annoying, but it's not freaking me out as much as it was before - I'm getting used to the fact that I can't see properly and whilst it is horrible it's not really stopping me getting about, and it's not really getting much worse.
What a horrible, sh1tty boat we are all in - hope we can find a way out soon.
 
the_anticarb said:
Thank you RRB. My eye today is kind of the same - very smoky and cloudy with blobs floating about in it. Emotionally, I'm not quite as bad as yesterday, when I was locked in the pit of despair, but I did have a bad time earlier when I thought I could see fresh blood swirls (I'm still not sure whether the lines are fresh blood or old blood thats circulating but stuck in a line shape iyswim). I can just about cope with this unless it starts bleeding again, then I fall apart because it just seems never ending, and like going back to square one all the time.
I've decided to do all I can to help myself and first thing tomorrow am going to find a private doctor and beg him to give me an injection to clear the blood. If there's a medical reason that I can't have it, so be it, but at least I will know that I've tried everything.
I have read that there are injections that clear the blood faster.
The fuzzy cloud is really annoying, but it's not freaking me out as much as it was before - I'm getting used to the fact that I can't see properly and whilst it is horrible it's not really stopping me getting about, and it's not really getting much worse.
What a horrible, sh1tty boat we are all in - hope we can find a way out soon.
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Hopefully the sailing will be a calmer smoother one with no rough waves to contend with :o Just take a day at a time and good luck with finding a private doctor, but they can be expensive. As you only have 10 days to go until your appointment, could you wait until then ? ps I sent a pm this morning, did you get it :?: With best wishes x
 
Rrb no retina wasnt detatched just being pulled apparently. It can happen witn tjus condition which is ehy they wanted to see me at a and e . A detatched retIna is appsrently painless whic i find z bit worrying as all the sympyoms are similar to whst we have after laset ie flashing floaters etc.
Ac please let us know what the private doc says . Think i would be willing to extend my mirtgage if it meant softing tjis quicker.
Ive had 2 bleeds again today and my eye feels bruised.

Good luck everyone
 
Robinredbreast said:
the_anticarb said:
Thank you RRB. My eye today is kind of the same - very smoky and cloudy with blobs floating about in it. Emotionally, I'm not quite as bad as yesterday, when I was locked in the pit of despair, but I did have a bad time earlier when I thought I could see fresh blood swirls (I'm still not sure whether the lines are fresh blood or old blood thats circulating but stuck in a line shape iyswim). I can just about cope with this unless it starts bleeding again, then I fall apart because it just seems never ending, and like going back to square one all the time.
I've decided to do all I can to help myself and first thing tomorrow am going to find a private doctor and beg him to give me an injection to clear the blood. If there's a medical reason that I can't have it, so be it, but at least I will know that I've tried everything.
I have read that there are injections that clear the blood faster.
The fuzzy cloud is really annoying, but it's not freaking me out as much as it was before - I'm getting used to the fact that I can't see properly and whilst it is horrible it's not really stopping me getting about, and it's not really getting much worse.
What a horrible, sh1tty boat we are all in - hope we can find a way out soon.
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Hopefully the sailing will be a calmer smoother one with no rough waves to contend with :o Just take a day at a time and good luck with finding a private doctor, but they can be expensive. As you only have 10 days to go until your appointment, could you wait until then ? ps I sent a pm this morning, did you get it :?: With best wishes x
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yes, got the pm thanks - did you get my reply?
Don't think I can wait 10 days RRB, if there is anything that can help this, especially in time for new job, I need to take it NOW. Also, it is helping me psychologically to think i can see someone sooner than 10 days time.
I know I have to take it a day at a time, but each day is so long, I don't know what to do with myself, can't go out like I used to and until I get my head round all this nothing is enjoyable. But I know I will survive this, as you and Leb will too.
 
How is everyone today?
Still bleeding, but i have a private consultation with Unbeliever's consultant at three today so WISH ME LUCK. I am hoping he can give me an injection of avastin or something, I will beg for it unless he tells me there is good medical reasons not to have it.
I saw my GP today for a sick note, I was very weepy as just started to bleed on the way there (I can cope with everything now except fresh bleeding), there was not a lot he could do, but he gave me some diazepam to cope with the stress of it all.
Anyway, Unbeliever thinks very highly of her consultant so I hope he can do something for me.

The Nhs hospital is being rubbish by the way. I was seen in emergency clinic last week and told I was on the list for the emergency laser clinic, phoned up to find out when and told no such clinic exists and I've been referred back to my consultant (???)
Was told 'sometimes the consultants get it wrong'. Struggled very hard not to get shirty with the person i was speaking to, it's not her fault, but I told her I did not think my care was being prioritised. She told me to speak to my consultant's secretary, which I did, relaying my symptoms down the phone to her and she's going to speak to the consultant, but it seems such a haphazard way of going about it, I'm lucky I can have this private consultation today.

Although, i was reading on an american site, about a woman who had a massive bleed, could not see out of one eye, on the way to the hospital they phone her up to tell her she's not insured so cannot be treated - she was unable to get it treated at all. lso read of another sufferer who could not afford insulin for a year and got really bad bilaterl pdr as a result. So things like that make me appreciate the NHS - they're not great but it could be a lot worse.
 
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