proliferative retinopathy I'M SO SCARED

[the_anticarb]

The chin is very much down today! I don't know, I just feel beaten by it, I used all my resources trying to mentally fight it earlier this year and now I just feel very depressed and like I don't care anymore.

I just can't get on with my life when I feel like things like my job and my family are threatened.

I know I will feel better in a few days, and I am going to see Mr. C next week for his opinion, but I am off to bed now for some feeling sorry for myself under the duvet with a bar of chocolate (but will inject for it).

Well done on the Hba1c Leb, I got mine the other day too which was 6.6 (despite all the junk food, I guess the injecting extra worked), let's hope this means our retinopathy troubles will soon be over.

AC x

[SouthernGeneral6512]

Sorry to hear that Leb. Still no news is good news I suppose.

I've had some semi-bad news, I saw another consultant to get a second opinion on the is it safe to get pregnant issue. The good news is that the doctor thinks I can get pregnant without too much risk, but thinks my right eye, which I thought had stabilised, will need more laser. He said this may affect my driving license. So it's back to worrying about the driving license which I was kind of ok with up to now as the field test revealed my right eye had no errors. So I was banking on that getting me through. Now I am back to sqare one it seems. I know I should be happy that the doctor has said I can have another baby but I'm confused, why is he saying this if my right eye is not stable? I thought I was not supposed to get pregnant until both eyes were stable. Its like he's giving me good news and bad news in the same breath and I can't handle it, couldn't sleep last night.

I really really don't want them to mess around with my eyes anymore, and have just had enough of all of this basically.
Although I don't want more laser if the right eye is going to go like the left did, then of course it will be worth it.rather than go though all that again.
The doctor did want me to have a dye test but it costs too much and I've already given them all my money, so I think I'll have to go back on the Nhs for tests. To make it worse it would be done at the NHS hospital anyway so I wouldn't even get the nice 5 star treatment for my money!
I'm going to go back to Mr. C for a second opinion on the right eye needing laser issue. If he thinks I need it I'll ask to get referred to his NHS clinic. I keep thinking that the other doctor wasn't 100% sure, as he wanted me to have the test to check my circulation, so I don't think it is really bad, but he said there are definitely new vessels there which is not good.

Feel so depressed today, every time I think I am coming to terms with the retinopathy and on an even keel I get knocked down again.

I'm really sorry to hear that AC but if you've had 3 laser sessions on the right eye already and still have no errors with it then surely you have to be positive about another one?

[the_anticarb]

Yes SG but where does it end? Every time I think it will leave me alone for a bit it's just there waiting in the corner.
The only good news is that I may be able to get help with the consultation costs if I change medical plan at work, doesn't apply to diagnostics or treatment unfortunately but may mean I can see Mr C for consultations at much reduced cost. Half the time it's getting the consultants thoughts/decisions which is the tricky bit, if the treatment is then accessible on the nhs, such as laser, its just a matter of having it. Finally - a plan that recognises pre existing conditions!

[SouthernGeneral6512]

All the best AC I'm sure you are on the last lap now

[the_anticarb]

Hi all, I have a tear in my retina from the vitrectomy, I think this explains the fuzzy blind patch which is kind of tear shaped (long and thin) where I lose things from view if I shut one eye and wave things around in that area.
I'm really, really annoyed that Mr. C did not mention this - the other consultant saw it straight away and said it was a result of the operation. If it is the fuzzy blind patch - which I am pretty sure it is - that was there straight after the op.

I'm going to see Mr. C tomorrow to see if he can explain this.

the second consultant doesn't think it needs treating, but it's a bit of a blow as it is permanent damage. I don't notice it with both eyes open but it's definitely there when I close my good eye.

I know the vitrectomy is a risky op and tears can happen a lot, but can't understand why I wasn't made aware of it.

Perhaps Mr. C will explain tomorrow, perhaps he will fob me off, but he's in my bad books now.

Seriously thinking about changing to the other consultant I saw now as i don't know if I can trust Mr C if he with held this from me.

[the_anticarb]

Well I saw Mr. C today and he was in a right grump because I'd been to see another consultant. Basically threw his toys out of the pram, accusing me of being ungrateful for what he'd done etc and how difficult the op was. Yes but I knew that already, this was never about the tear itself, just the fact that he never told me about the tear.

Anyway his ego obviously can't take any sort of challenge, or the fact that I saw someone else (which was because he was fence sitting on the pregancy issue) so he's not the consultant for me long term. We smoothed things out towards the end (after a lot of me reassuring him that I wasn't ungrateful, I did understand what a difficult job it was etc) but agreed I wouldn't see him for consultations again in future.

To be honest I expected a bit more professionalism from him, if he's going to get all emotional if I get a second opinion or challenge him then he's probably not the consultant for me. Its not asthough these guys don't charge enough for what they do.

Its upsetting enough dealing with retinopathy without having to deal with doctors egos too!

Anyway I can't really afford to see him anymore, so it's back to the NHS with Mr. L if I need private consultations I guess.

[Robinredbreast]

Well I saw Mr. C today and he was in a right grump because I'd been to see another consultant. Basically threw his toys out of the pram, accusing me of being ungrateful for what he'd done etc and how difficult the op was. Yes but I knew that already, this was never about the tear itself, just the fact that he never told me about the tear.

Anyway his ego obviously can't take any sort of challenge, or the fact that I saw someone else (which was because he was fence sitting on the pregancy issue) so he's not the consultant for me long term. We smoothed things out towards the end (after a lot of me reassuring him that I wasn't ungrateful, I did understand what a difficult job it was etc) but agreed I wouldn't see him for consultations again in future.

To be honest I expected a bit more professionalism from him, if he's going to get all emotional if I get a second opinion or challenge him then he's probably not the consultant for me. Its not asthough these guys don't charge enough for what they do.

Its upsetting enough dealing with retinopathy without having to deal with doctors egos too!

Anyway I can't really afford to see him anymore, so it's back to the NHS with Mr. L if I need private consultations I guess.

You paid alot of money for the op AC, your savings, and he, I would imagine, is getting a good wage

Good luck and keep posting we are all here for you and every one else who is going through awful eye problems. Best wishes RRB

[the_anticarb]

Thank you RRB, shame though that he had to be like that though, he could have just explained the situation to me without making a big fuss about it all and saying he was upset etc. I don't really care if he's upset, I don't need to know about it, I'm his client not his therapist! I'm sure I've been far more upset in the last six months from all my medical problems than he has!

Anyway we left things on a better note, so I'm just going to put it behind me now.

How are you and your eyes?

And how is Leb not posted in a while hope she is ok.

[leb]

Hi all
Im doing ok still 'recovering' from the op. Still waiting to get the 8 weeks post op out the way with no further detachment :-/
Its a bit if a worry as i have so muvh glashing 90% of the time which i know is a sign of detachment but i have been back to the hospital twicw now both timex the fladhing eas presen and i wad told it looked the same still. So im keeping everything crissed thsts how it remains. I kniw ive lost a patch of vision but its very much like ac's fuzzy patcj and if thats the only reminder i have then i will be happy. Im back to see the consultant on 10th oct unless snything changes for the worse.
My vision is fluctusting quite a bit and if i have a hypo this really affects it. To the point where i csn see hardly anything. Does snyone else notice this with a hypo or is it just me???
Well hope u are all keeping well
Take care
Leb

[the_anticarb]

Hi Leb
I get funny vision if I have a hypo sometimes, just like everything goes a bit fuzzy. Apparantly the retina is the most energy demanding part of the body (hence why it tries to grow new vessels) so this makes sense if youre energy levels are down.

Sorry to hear about your flashing didnt realise it was so much.

How would you describe your fuzzy patch, is it literally like a little hole in your peripheral vision that you can make things disappear into? Where is yours and how big? Mine is on the left of my nose, so quite far over to one side but about 1/3 the way up the field, and not huge but noticeable, wish it was lower really but it doesn't really bother me with both eyes open. I guess I can learn to live with it, it's just the fear of relying on my left eye if my right eye was ever to go.

Anyway hope your retina stays ok for the 10th

AC

[Unbeliever]

Your sory ac , reminds me of my daughter's recent experiences with privae medicine. She was very concerned about her condition
and had arrived home from working abrod and within a couple of days had to be off to a very stressful temporary job in a different part of the country. While she as doing his job she was also having to look for a permanet job for when she finished .
She has had health issues for over a year and has spent a fortune on privae medicin eabroad trying to resolve the issue quickly/
It wasn't settled when she came back but she had a form of private insurance here. Even trying to arrange treatment through this was a nighmare in the circumstances . In the end she had to have surgery but I felt he surgeon rushed ino hings because of the circumstances and probably at her request. She is now regretting the haste although she has now started a new job.
I am no suggesing that you oughtn't o have had your vitrectomy but just that I don't think that hase is always the best policy and hat surgeons nd consultnts when seen privaely will try to give the client what they ask for which might not always be th e wisest thing.
its strange how people can see others so diffferently. I never recognised the MR C you described in the beginnig as the same man who has been teating me for five years. I assumed that because you saw him privately there was a difference.
While I haven't always seen eye to eye ith him {ouch} I usually found that was because he was looking after my interests but protocol forbade him to explain it all to me.

I certainly don't recognise the Mr C you desribed above today. I have seen and heard him dealing with exremely difficult siuations and people calmly and professionally . and with great patince and forebearance. Unlike some other surgeons .
I suppose it is very differen when you see someone in the circunmsances you saw him. You will have had little opporunity to witness his behaviour to others.
I suppose that the real point of paying privaely is to ge a sppedy diagnosis and to have procedures performed more quickly than hey mihgt be on the NHS.
IThis is fine of course , but apart from the private room etc i didn't notice much difference in the care my daughter received and there was a definite lack of pesonal ineres from the consultant who just seemed to have domne what she asked and wasn't too fussed about the outcome.

The only thing which my limited private insurance would have covered was my caracts op but MR C promised to do his best to be there for me for that - nad he was . That for me was preferable to going to a different hospital to be operated on by an unknown surgeon as would have happened. I could dispense wih the frills.

Its swings and roundabouts really isn't it? If you have a condition which is likely to be long term and you find someone you can trust it is better to stijk with them.

My daughter offered o pay for me o see MR C privately to discuss my current problems in detail but I refused because i don't hink that would make any difference at all. Possibly a few years ago , I might have felt it to be a good idea. I suppose I am now more reconciled o the fact that noone knows all the answers as it is differen for all of us.

I hope your retinal tear does not cause you oo many problems and that you can achieve some peace of mind. Difficul I know.
I am always so sorry for hose who have had to batle wih diabees from youth or childhood.

[the_anticarb]

Hi Unbeliever,

It is a shame that I saw this side to Mr. C after singing his praises so loudly in the beginning. Basically, I had a tear in my retina as a result of the op and he decided it wasn't worth telling me. When I saw the other consultant he saw it straight away and said 'you've got a hole in your retina' so I was suprised, as I'd specifically asked Mr. C if the operation had gone to plan and he said yes.

When I saw him yesterday it was not to poke the finger of blame at him, certainly not for causing the tear as I don't blame him for this - I know the op is risky - but I just wanted an explanation as to why he hadn't told me. But he was so off with me, callling me ungrateful and the like, that I couldn't believe his lack of professionalism. Why can't I be grateful for what he's done AND want an explanation of this tear in my retina and why I wasn't told. Also, he didn't really talk about the tear. He kept saying I should ask the other consultant. I even asked him where in my retina it was and he refused to tell me. Then he tried to belittle me saying 'do you have any idea of how the retina works'. Of course I dont - I'm not a doctor. Why would I?

Yes, I was quite suprised that my/our lovely consultant had turned into this petulant child! To paint him in the most positive light, it is because he is passionate about what he does and he cares about his patients, so he perceived my enquiry to the hospital as a criticism of his skills.

Let me ask you - if your retina was torn during an op, even if it was repaired and not likely to be of any significance - would you want to know?

I'm still not sure if it is what is causing my fuzzy patch - MR. C was never gonna tell it to me straight as if it was that would mean admitting perhaps he should have told me - but its like when Leb's retina had detached and no one bothered to tell her.

Anyway I still do feel quite hurt at how its all turned out with Mr. C but to be honest I did think Mr. L was better certainly for my present purposes - planning for pregnancy. Mr. L has said to go ahead (albeit with potentially some top up to the right eye) so he's the one I'll be follwoing as I don't want to wait in limbo land any longer.

I think maybe Mr. C realised the relationship between me and him had broken down a little so gave me the fob off about reducing his list now he's had a baby.

He did do a good job when I had the bleed, and sorted me out in time for my new job, so i'm eternally grateful for that, but shame he had to act like such a numpty in the end.

Anyway enough about Mr. C how are you doing how are your eyes since you had the problems with glaucoma?

[Unbeliever]

IIt is very important to find someone you can trust when being treated for something so vital as your sight. As you have found it can ake a while to develop and is a two -way thing.

The surgeon my daughter recently encountered obviously decided that the best way to deal with her was tobe very positive and definite. he was entirely wrong . He would have been much better to have been totally honest with her about the possible after -effects of her surgery and how long it would take her to recover. Had he done so she might not have taken on her present very strenuous job which she fears is delaying her recovery. I can nderstand why he didn't tell her- it was an error of judgemeent because he had only seen her twice before he surgery.

Yes, I like to know abou anyhing which affects me . And I think I WOULD have been told just because I have had the ime and opporunity to make my feelings clear.and , more impportantly have demonstrated that I can cope with the informaion.

With me - it is all about intenion. if I ask a question - I expect - and get- an honest answer. Sometimes I can sense that there are doubts and uncertainies and step back for a while to allow them to resolve themselves or to develop.

It is a little like that just now. My pressures were reduced with the drops o very acceptable levels but at some cost. My bg and bp readings were all over he place because of them . So though they sorted he glaucoma they did nothing at all for the retinopathy and maculopahy . I have had the drops changed and reduced bu I am in continuous pain in boh eyes and feel nauaseous all the time. As they make me sneeze constantly which causes bleeding I have been aking ani-histamines which have caused stomach problems too.

My first thought when this latest problem started
was to ry to get some sort of answer about the implications for future treatment. I have gradually come to realise that ths is an impossibility . As with other hings relating to this disease it all depends on the individual. There has o be individual treatment in each case.
Apparently one school of hough is to reduce the eye pressure as much as possible so hat he rise in pressurs after reatment with steroids would only be withinn the acceptable range. Unfortunately this does not take account of the rise in bgs and the effect on he retinopahy and macular oedema.
I think the crunch time will come in November when I am due for my next check up when the steroid injections will have worn off and i need more reament. I suppose all will hinge on how the glaucoma is then. I expect it is a case of just managing hings as hey occur. No change really hen but I hate to see the good control I have worked so hard o obain being lost and it is very unopleasant being in continual pain because of the drops.
I someimes hink it would be a relief if they would just say hey could do nohing more for me but I doub t that will happen.
I just have o learn to live with it- taking each day as it comes.
Yes it is very necessary to trust those who are treating you but there is no perfect system.
I have a very rich American friend who has various healh issues but she is faced wih he problems of oo much choice!

[leb]

Hi everyone
Hope ur all well.
Just a quick update. Went back to hispitsl yesrerday for my 6 week post op appointment. Doc said its doing as well as can be expected whuch i see as a goid thing. My vusion fluctuates hugely but i guess thats something i need to get used to. Mt 'good' eye has developed lots of fliaters whuch is worrying me as i assumed it was a bleed and the start of the cycle i had with my operated eye. When he examined me yesterday he saud it wasnt bleeding at that point but may have been befire. He also said with the amount if laser uve had it may be bits of vitreous that has brojen up a bit.
On the whole im oretty posituve. I think ill alwats be a bit aorehensive with the while eye thing as we all kniw this disease can be very unpredictable.
He also confirmed my black vision during a hypo is quite common. He said the retina needs lits of energy and uf blood sugars are low uts like trying to run a car without petrol, it wont wirk!! He also added that huge fluctuations in sugar levels causes bleeds so even uf it was a little higher than you would like uts better to be constant unstead of the swings.
How is everyone else doin? Unbeliever hiws ur situation at present?
Ac goid luck with the laser next week. Keep us posted xx

[Unbeliever]

Hi Leb, Gllad you are doing as well as can be expected. and feel fairly positive. Fairly positive is great when you have felt in utter despaitr isn't it?

You are so right about the unpredictability . All the year I have felt that i am not doing too badly. I have not been at all aware of the problems which the consulant can see and the results of the ess. I was a bit puzzled by this but I think It is because my "clsose" vision has stabilised a little. I can SOMETIMES read without my magnifying gkass {in a goood light etc} and I have nt been suffering too many "hallucinations" . Not sure if I posted about the rats playing under the chair in the restaurant? Normally I can't see black but ion this occasion it was a woman suitting in a chair wearing a leopardskin jacket and black trousers. Fordome reason her whole top half was invisible to me and I couls dsee ONLY the black-trousered legs. As she was crossing and uncrossing her legs I "saw hem as possible rodents under the chair!

Totally agree that keeping levels stable seems o be more important than getting them low. This has been my experience. £ times when I have managed to lower my levels and once when I was prescribed extra BP medication it has made the condition worse= as does laser , injections etc etc. Damned if I do and damned if I don't!

I have almost come to terms with the situation now . It is just another bridge o cross when we come o it./. It might not be long before we do. I am due back o the hospital on Nov 6th and its the usual limit of the time he steroid injections stop working.
So someone will have o make some hard decisions!

I can see me being given another cataracts op to improve my vision and the laser and injections being left as long as possible.

For my last cataract op they rang to ask if I would like to bring it forward o Boxing Day. I declined wih thanks.

I am also due a visit to my dearly beloved DSN around the same ime. Guess which stresses me out most?