WhitbyJet said:
How long did it take for your bleed to stop WJ? I need to hear that there will be an end in sight (no pun intended), as my intermittent bleeds making me feel like they will go on forever!
had a bleed....
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How long did it take for your bleed to stop WJ? I need to hear that there will be an end in sight (no pun intended), as my intermittent bleeds making me feel like they will go on forever!
Robinredbreast
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the_anticarb said:
Hello Ac, leb and unbeliever ACI wish you LOTS and LOTS of luck with your appointmnet with the private consultant in 3 days, fingers crossed for you :thumbup: I know your eye is causing problems with your sight, but I would write a letter as aback up, because telephone conversations can be unclear at times and she may have written down only'bits' of what you were saying. If its there in black and white , then they will get all the picture, but make sure you do a copy as well.
Yes, you're right about the NHS, other countries have it far worse, with costs and poor health care to patients. So we should try not to moan too much, but there are cases where things have to brought up because of concern and moaned about.
I do hope your eye starts to improve. I didn't get your pm :?: . Take care and best wishes
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the_anticarb said:
There's a letter in the July/August edition of Balance where the writer is praising the NHS after having moved to the USA, he says the health-care insurance he has doesn't cover everything and 8 weeks worth of test strips and insulin pens costs him $900 (£579) and estimates he'll spend $6,000 (£3,862) on diabetes related supplies and visits to doctors this year :shock:
Hope your appointment went well today!
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hi anticarb
logged in after AGES away. just wanted to give you a virtual hug, i totally understand the emotional pit you're in, i too wish i could go back to the time of diagnosis like a ghost from a christmas carol and talk to my idiot self. i have had an unbelievable wake up call, but it's about 12 years too late. i wish i could've see this coming, but being so on top of blood sugar is bloody hard work and i can do it for certain periods of time, then seem to have months off, where i don't test often enough, and see plenty of 'normal' readings along with plenty of 'abnormal' ones....but no lightening bolt comes out of the sky, right? it's just years later when something goes a bit wrong and you hate yourself because you know you could've avoided it.
am feeling so desperate at the mo, i know we can get on top of it now, but we can't reverse what's gone wrong. i feel sick about it, can't sleep /eat & am severely anxious. like you, my children are driving me on.
hope your appt helped some? will pm you...when get a min
eloise xxxxxxxxxxxxxx
logged in after AGES away. just wanted to give you a virtual hug, i totally understand the emotional pit you're in, i too wish i could go back to the time of diagnosis like a ghost from a christmas carol and talk to my idiot self. i have had an unbelievable wake up call, but it's about 12 years too late. i wish i could've see this coming, but being so on top of blood sugar is bloody hard work and i can do it for certain periods of time, then seem to have months off, where i don't test often enough, and see plenty of 'normal' readings along with plenty of 'abnormal' ones....but no lightening bolt comes out of the sky, right? it's just years later when something goes a bit wrong and you hate yourself because you know you could've avoided it.
am feeling so desperate at the mo, i know we can get on top of it now, but we can't reverse what's gone wrong. i feel sick about it, can't sleep /eat & am severely anxious. like you, my children are driving me on.
hope your appt helped some? will pm you...when get a min
eloise xxxxxxxxxxxxxx
To all - GOOD NEWS! Unbeliever's consultant is an angel sent from heaven, he is going to do a vitrectomy op next Friday and reckons that will fix it permanently so long as my diabetic control is good.
I'M SO RELIEVED.
Anyone suffering from bleeds, if you can afford a vitrectomy just do it, don't wait on the NHS they'll make you wait forever whilst it ruins your life. He said to me that a vitrectomy was the only thing that would work as the eye is so bad with retinopathy more laser would not have much of an effect and it would just continue to bleed indefinitely without this op.
I should be ok to start my new job too, may need to delay for a week tops but I'm sure my new employer won't mind that.
Thank you unbeliever for the recommendation.
I feel like I can breathe again now, only have to see through these cobwebs for a few more days now and then four weeks after the op I'll be back to normal.
I'm going to take a vow of low-carb now, it's the only way to control the dratted diabetes (for me) , but a lifetime of boring low carb foods is prefeable to going through what i have just been through ever again.
I'M SO RELIEVED.
Anyone suffering from bleeds, if you can afford a vitrectomy just do it, don't wait on the NHS they'll make you wait forever whilst it ruins your life. He said to me that a vitrectomy was the only thing that would work as the eye is so bad with retinopathy more laser would not have much of an effect and it would just continue to bleed indefinitely without this op.
I should be ok to start my new job too, may need to delay for a week tops but I'm sure my new employer won't mind that.
Thank you unbeliever for the recommendation.
I feel like I can breathe again now, only have to see through these cobwebs for a few more days now and then four weeks after the op I'll be back to normal.
I'm going to take a vow of low-carb now, it's the only way to control the dratted diabetes (for me) , but a lifetime of boring low carb foods is prefeable to going through what i have just been through ever again.
Robinredbreast
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weeezer said:
Because having blood visibly drip into your field of vision, increasingly over a period of several days until you can barely see out of your eye, is, in the words of the NHS consultant I saw on Friday night 'not an emergency'.
It wasn't until I paid top dollar to see someone privately that my condition was taken seriously and someone said 'I can fix this and here's how'.
It is costing a big fat wedge of money, which will decimate my savings, but I guess this is what savings are for....
Yeah think you can definately say it's money well spent, hope it all goes well and make sure you keep us updated 
update - the bleeding seems to have stopped for now, no significant new bleeds since Monday (had a little bleed tuesday but quite minor), ironic now really as I'm not too bothered by the bleeding knowing it will all get sucked out next Friday.
Also, I'm not as bothered by the cobwebby vision as I was - at first it was intolerably irritating and panic-inducing, now I don't know if my right eye is getting stronger to compensate, or I'm just learning to see through the haze, or indeed the haze is thinning out cos no fresh blood, but it's certainly a lot more bearable, and I am confident driving with shades on.
Anyway if anyone is reading this either now or in the future who has suffered a bleed and is panicking as i was, it does get better/more bearable as you kind of get used to it - just wanted to share.
Also, I'm not as bothered by the cobwebby vision as I was - at first it was intolerably irritating and panic-inducing, now I don't know if my right eye is getting stronger to compensate, or I'm just learning to see through the haze, or indeed the haze is thinning out cos no fresh blood, but it's certainly a lot more bearable, and I am confident driving with shades on.
Anyway if anyone is reading this either now or in the future who has suffered a bleed and is panicking as i was, it does get better/more bearable as you kind of get used to it - just wanted to share.
Thanks - it's not the op today but the avastin injection which they need to do a week before to stop the bleeding. The op is on Fri 13th - I reckon I've had enough bad luck already so I'm not bothered about the date!
How are your eyes leb, are they any better? Have you been to see your consultant recently? Thinking of you too x
How are your eyes leb, are they any better? Have you been to see your consultant recently? Thinking of you too x
Hi ac good luck with the injrction let me know how it goes
i havent noticef ad many new bleefs but i have 2 fairly large blavk fliaters tat are going acrosd the top and botgom of my vision. The doc said thsts the blood!! The blurriness is a bit better only really notice the cobweb when ir is bright. Sunglasses reslly help with that.
Im back on tues so hoping at least some of it will absorb
All the best
i havent noticef ad many new bleefs but i have 2 fairly large blavk fliaters tat are going acrosd the top and botgom of my vision. The doc said thsts the blood!! The blurriness is a bit better only really notice the cobweb when ir is bright. Sunglasses reslly help with that.
Im back on tues so hoping at least some of it will absorb
All the best
Well I had the injection and it wasn't particularly pleasant although mercifully brief. It's like a little taster of what next week will be like!
I can see now why it costs a lot as they have to do it in a sterile environment so I had to put on a gown/hairnet, then they put anaesthetic drops in my eyes followed by swabbing with disinfectant stuff, then came the needle part!
They clamped my eye open, I had to focus a little to my right, but could still see it coming towards me, then in it went!
I could still feel it go in, and it was a little painful to be honest so I don't know if they didn't put in all the anaesthetic they were supposed to, or if that was to be expected, but i definitely winced a bit- a lot actually - as it went in.
Then it was all over and job done. My eye is sore now and quite blurry, and I have to put eye drops in four times a day. Luckily as my good eye has been practicing at being the stronger one since I started to bleed I can still get by quite well as it is compensating.
Hopefully this will stop the bleeder in its tracks, although as far as I am aware the main effect is to prevent the vessels bleeding during the actual surgery.
The surgeon seems to think that if this op goes well, I will still probably keep my driving license, which was a big concern, and that my right eye seems to be stable. He's going to try and laser in a way that maintains my visual field, which I wouldn't trust the NhS to do theyd' probably just blast away without any concern for that, so I'm hopeful that I will be able to keep it as it would be a big blow to lose it. That alone justifies the exorbitant cost of this procedure!
I can see now why it costs a lot as they have to do it in a sterile environment so I had to put on a gown/hairnet, then they put anaesthetic drops in my eyes followed by swabbing with disinfectant stuff, then came the needle part!
They clamped my eye open, I had to focus a little to my right, but could still see it coming towards me, then in it went!
I could still feel it go in, and it was a little painful to be honest so I don't know if they didn't put in all the anaesthetic they were supposed to, or if that was to be expected, but i definitely winced a bit- a lot actually - as it went in.
Then it was all over and job done. My eye is sore now and quite blurry, and I have to put eye drops in four times a day. Luckily as my good eye has been practicing at being the stronger one since I started to bleed I can still get by quite well as it is compensating.
Hopefully this will stop the bleeder in its tracks, although as far as I am aware the main effect is to prevent the vessels bleeding during the actual surgery.
The surgeon seems to think that if this op goes well, I will still probably keep my driving license, which was a big concern, and that my right eye seems to be stable. He's going to try and laser in a way that maintains my visual field, which I wouldn't trust the NhS to do theyd' probably just blast away without any concern for that, so I'm hopeful that I will be able to keep it as it would be a big blow to lose it. That alone justifies the exorbitant cost of this procedure!
I hope the avastin works for you. I have had 5 avastin shots and none of them did anything. I had one with a cataacts op to prevent the bleeding starting as a result of the surgery but it didn't work.
Had you had a seroid injection as your first experience you would think the avastin much the easier option. At least the chemical is clear. With the steroids there are huge black "cables " in your eye sometimes for weeks.
At my hospial the steroid shots are given in the theatre with cap and gon and full trimmings bu the avasin are just given in a reatment room. This is because he incision wih the avastin is smaller and less deep.
I suppose the least hey can do for all tthat dosh is to offer a litle etra hygiene. The main thing though is that it works.
If it doesn't lucentis wouldn't have either.
Quite daunting the first time isn't it? The first couple of times I had the avastin shot in the theatre . After that they began to do a lot more for different groups of patients because it had been quite successful. They only try wo per paient now before deciding whether or not it is going to work for a partcular patient.
maybe the private clinics should offer a "money -back" guarantee?
In the NHS it is a lottery as to who you get to operate. That is one procedure I would definitely pay privately for if i could.
I think it has already been ruled out for me though.
These injections are no a lot of fun but not as dreadful as they may sound. The first one is always the worst.
If any more are necessary you will know what to expect next time.
Had you had a seroid injection as your first experience you would think the avastin much the easier option. At least the chemical is clear. With the steroids there are huge black "cables " in your eye sometimes for weeks.
At my hospial the steroid shots are given in the theatre with cap and gon and full trimmings bu the avasin are just given in a reatment room. This is because he incision wih the avastin is smaller and less deep.
I suppose the least hey can do for all tthat dosh is to offer a litle etra hygiene. The main thing though is that it works.
If it doesn't lucentis wouldn't have either.
Quite daunting the first time isn't it? The first couple of times I had the avastin shot in the theatre . After that they began to do a lot more for different groups of patients because it had been quite successful. They only try wo per paient now before deciding whether or not it is going to work for a partcular patient.
maybe the private clinics should offer a "money -back" guarantee?
In the NHS it is a lottery as to who you get to operate. That is one procedure I would definitely pay privately for if i could.
I think it has already been ruled out for me though.
These injections are no a lot of fun but not as dreadful as they may sound. The first one is always the worst.
If any more are necessary you will know what to expect next time.
Gosh unbeliever I hope it works after all that money and pain! I was led to believe that the vessels are growing because I have excess growth hormones in my eye as a result of the damage to the retina caused by high blood sugars, so this drug works by inhibiting the growth hormone. Mr. C said that it will close up the vessels to stop bleeding in the surgery - also I think it stops the new vessel growth in its tracks to give my eye the best chance of stabilising post op. So hopefully it will work for me although I know in medicine nothing is ever certain.
The worst part of the ordeal wasn't the actual injection -it was the pain afterwards. Last night my eye really hurt, very sore and weepy. So much so I had to go to bed with a sleeping tablet to knock myself out. It's good practice for next week! Luckily as I'm private I had access to a 24 hour phone line so could speak to a nurse to ensure that was nothing out of the ordinary. The pain may have been a reaction to the disinfectant they swabbed my eye with as much as the avastin injection itself.
Today it's still slightly sore but much more bearable. The blood has cleared a lot since a week ago - just a few wispy black feathers but not bothering me too much. Were it not for the fact that I know the bleeds could recur if I did not have the op, I may be having second thoughts about spending so much money. But I know it needs to get sorted, and I will breathe a big sigh of relief once Mr. C has worked his magic and fixed my eye.
The worst part of the ordeal wasn't the actual injection -it was the pain afterwards. Last night my eye really hurt, very sore and weepy. So much so I had to go to bed with a sleeping tablet to knock myself out. It's good practice for next week! Luckily as I'm private I had access to a 24 hour phone line so could speak to a nurse to ensure that was nothing out of the ordinary. The pain may have been a reaction to the disinfectant they swabbed my eye with as much as the avastin injection itself.
Today it's still slightly sore but much more bearable. The blood has cleared a lot since a week ago - just a few wispy black feathers but not bothering me too much. Were it not for the fact that I know the bleeds could recur if I did not have the op, I may be having second thoughts about spending so much money. But I know it needs to get sorted, and I will breathe a big sigh of relief once Mr. C has worked his magic and fixed my eye.
Yes thats the worst part. Going through all that with no guarantees.
The last ime i had injections [2 months ago} I was hrilled [not] to be introduced o the new eyewash, This was just about the most painful thing I have ever experienced in my maculopathy "journey". I had one steroid injection and hen was left to recover for a ime before the other. I comforted myself with the thought that he worst of the stinging would have worn off by the time the secomnd was done. I reckoned without my extremely thorough and and hygiene conscious surgeon.. He left me for en mimutes hen when he was ready o inject the other eye he insisted on using more eye wash on it . I nearly hit the roof.!
Its a good job i have implicit trust in him. Even if something went wrong during one of his procedures I would just hink I was lucky to have him there.
I don't trust people very easily and have often thought i would probaly refuse treaytment in future were he to leave.
Theatre staff often comment on my calm demeanour =some people freak out it seems!
I am convib=nced that some form of drugs to dry up the bleeds is the way o go and tha laser by itself , although very useful has too many side effects to be the complete answer.
I only wish his herapy was more available across he country and feel hat for obnce i may have been fortunate as my referral to this hospital was fortuitous.
I hope your experience is as positive as mine has been anticarb - that you oo have found a surgeon you can trust and that the reament is effective for you.
The last ime i had injections [2 months ago} I was hrilled [not] to be introduced o the new eyewash, This was just about the most painful thing I have ever experienced in my maculopathy "journey". I had one steroid injection and hen was left to recover for a ime before the other. I comforted myself with the thought that he worst of the stinging would have worn off by the time the secomnd was done. I reckoned without my extremely thorough and and hygiene conscious surgeon.. He left me for en mimutes hen when he was ready o inject the other eye he insisted on using more eye wash on it . I nearly hit the roof.!
Its a good job i have implicit trust in him. Even if something went wrong during one of his procedures I would just hink I was lucky to have him there.
I don't trust people very easily and have often thought i would probaly refuse treaytment in future were he to leave.
Theatre staff often comment on my calm demeanour =some people freak out it seems!
I am convib=nced that some form of drugs to dry up the bleeds is the way o go and tha laser by itself , although very useful has too many side effects to be the complete answer.
I only wish his herapy was more available across he country and feel hat for obnce i may have been fortunate as my referral to this hospital was fortuitous.
I hope your experience is as positive as mine has been anticarb - that you oo have found a surgeon you can trust and that the reament is effective for you.
