proliferative retinopathy I'M SO SCARED

Unbeliever

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1,551
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

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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

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1,551
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

Well-Known Member
Messages
137
Type of diabetes
Type 1
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

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1,551
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?
 

leb

Well-Known Member
Messages
137
Type of diabetes
Type 1
Keeping everything crossed for u unbeliever rhat u get some goid news on ur next vusit :)

Thought id share some good news with u all. Although rhe whole eye business is still unstable rhe same cant be said dir my overall duabetic contrll. I went on the pump in august and have gained even further control of my diabetes. Went to see my diabetic cinsultant today and he said my hba1c has come down to 5.7 a figure i havent seen in tge past 20 odd years. Ir was 6.3 last month and i was pleased quth that so really wanted to share some good news fir a change YAY !!!!!! :) :) :) xx
 

shop

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Messages
665
leb said:
Keeping everything crossed for u unbeliever rhat u get some goid news on ur next vusit :)

Thought id share some good news with u all. Although rhe whole eye business is still unstable rhe same cant be said dir my overall duabetic contrll. I went on the pump in august and have gained even further control of my diabetes. Went to see my diabetic cinsultant today and he said my hba1c has come down to 5.7 a figure i havent seen in tge past 20 odd years. Ir was 6.3 last month and i was pleased quth that so really wanted to share some good news fir a change YAY !!!!!! :) :) :) xx


Well done Leb...xxx
 

Unbeliever

Well-Known Member
Messages
1,551
shop said:
leb said:
Keeping everything crossed for u unbeliever rhat u get some goid news on ur next vusit :)

Thought id share some good news with u all. Although rhe whole eye business is still unstable rhe same cant be said dir my overall duabetic contrll. I went on the pump in august and have gained even further control of my diabetes. Went to see my diabetic cinsultant today and he said my hba1c has come down to 5.7 a figure i havent seen in tge past 20 odd years. Ir was 6.3 last month and i was pleased quth that so really wanted to share some good news fir a change YAY !!!!!! :) :) :) xx


Well done Leb...xxx
Congrats from me too Leb. You know now that the diabetes side of it has been sorted. I hope that this means your eyes will now stabilise too.
Thanks for your good wishes. They are much appreciated . They mean more from those who understand.