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had a bleed....

Discussion in 'Diabetes Complications' started by the_anticarb, Jun 27, 2012.

  1. the_anticarb

    the_anticarb · Well-Known Member

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    Leb, what I would do in your position is get a second opinion privately, you've had a lot of laser so far and there's been no sign of it working yet (correct me if I am wrong on that). I don't know what they charge in your area but where I live it is around £200 the first time you see the consultant and £100 for subsequent consultations.
    Obviously we are not exactly the same, so I don't want you to think that what applied to me will necessarily apply to you, but I was told when I saw the private doctor that laser would not be effective once the vessels are growing into the jelly. Not sure if yours are but this is a likely source of the bleeding as it is the jelly pulling on the vessels as it contracts which causes them to bleed. The private consultant can then write the outcome of the consultation, which you can take to the NhS doctor, and may influence them. It is good they are talking about the op, but every day you have a bleed it may be causing more damage. The 8th is aeons away, if you are having daily bleeds, can you ask to be seen sooner than that?

    For me I sought a private opinion because I wanted to find out what advice was best for me based on my medical condition only and not on NHS purse strings. If the consultant i saw privately had said i was not at the stage of needing an operation yet I would have accepted it, and believed him. But everything he said contradicted what I'd been told on the NHS.
    Someone said, how could I be sure he was not just saying that to fleece me. I said I'd rather risk being fleeced and losing my money than not being fleeced and losing my sight. Not to alarm you as it is rare to lose sight completely. But its entirely possible to have some permanent loss of vision with advanced PDR and it was a risk I was not prepared to take.
     
  2. leb

    leb Type 1 · Well-Known Member

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    Hi ac
    I agree with u totally. And i looked at our privaye hospitals. The consultsnt i am niw under (ts the second one as the 1st was so laid back he wadnt gonna c me 4 over 3 months even when he saw i had a bleed) is the main one fir diabetic eye disease at the private hispital and he is on anual leave. so by the time i see him to write a letter to the nhs and the admin side of things has been done it would probably be later than 8th anyway. So im guessing once i actually see him humself i will feel better. I did see the dictor at miorfields who again said laser was the best tteatment at the moment and all the research ive done states that vitrectomy may be the only option if laser fails so i will be deffinitely quoring some of what ive read. The 8th is 3 wks away am maybe bein silly but we have our family holiday nxt wk and i have decidef to go becsuse everyome says about giving the laser a chance to work and maybe a bit if relaxing time might do my whole mentsl state the world of good.

    I hope im making the right choices but i guess only tume will tell. I know there are risks with leaving it and as unbeliever said rusks with having it too soon amd risks with any otjer procedure.
    I would defginitely have done what u have done had my career depended on it because as you said that was affing your anxiety levels.

    Good luck with your recovery. All the best x :)
     
  3. the_anticarb

    the_anticarb · Well-Known Member

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    Thanks Leb. I hope you get the answers you need on 8th! Hope you can enjoy your holiday before then - are you going somewhere nice and sunny? :D
    I'm back to see 'my' surgeon today to check everything has gone ok with the op - it feels like it has, but will be good to get it checked over by the doc and get his views.
     
  4. leb

    leb Type 1 · Well-Known Member

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    Hi ac . Thats another good thing about being private you haven had to wait too long to get it checked. Really pleased it seems to be going well. Let me know what the doc says later.

    We are off to Turkey so at least we should get some sumshine. Good fir rhe feel good factor not so good for the eyes so i am going armed with seversl pairs if sunglasses lol. We booked it 18 months ago so its been a long long wait but hope it will be a little boost for all of us. I was a bit anxious about flying but have asked 5 dufferent docs if its safe and all assute me it is so im going fir it.
    I have just had a call back from the consultants secretary as promised and she has spoken to him telling him all my symptoms and explained my concerns and he has agreed to see me personally which im pleased about.
    Lets hope tjings are looking up for all of us and the light at the end of the tunnel is becomming that bit closer.
    Good luck for your appointment later altjough im sure you dint need it :) x
     
  5. Unbeliever

    Unbeliever · Well-Known Member

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    Not convinced anticarb. Might still polish up my eyeshield... he normally works at another private clinic in Chester on Friday mornings and thus doesn't have far to ravel for surgery on his NHS patients in the afternoon.
    Must have changed his schedule - I will check when I see him net week.
    Its SUCH hard work being a NHS patient ! It is almost necessary to become a stalker to keep track of the consultants and all
    heir different commitments.
     
  6. the_anticarb

    the_anticarb · Well-Known Member

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    OMG I bet you know his schedule better than he does!!! He may have changed his clinic as I had my avastin on a friday afternoon - then seeing him today at 2. I'm so glad he could fit me in when he could though as any later and it would have jeopardised starting my new job. Do you get much choice whether you see him at Chester? I have been so unhappy at Manchester Royal Eye that I was thinking about changing hospitals for future appointments, but not sure if all NHS the same...
     
  7. Unbeliever

    Unbeliever · Well-Known Member

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    Have a good holiday leb, I hope you can relax a bit and i am sure that will help. You have to be really well to cope with illness don't you? :D

    I totally agree with you, we all have to decide what is best for oursselves in our own particular situation. No decision is without its own risk.

    I don't have private medical insurance but I do belong to a mutual society which would have helped me to see specialists and paid fpr some procedures and treatments. I never considered this because it was all so open=ended with me. It was not a question of seeing someobne and having treament and that would solve it. I doubt if any private insurance would have paid for all the rtreatment I hav ehad and which is still ongoing.

    In other circumstances if i felt I was geting nwhere i might have considered it. I know I am fortunate to have had treatment which is not universally available {mostly] by an ecellent surgeon I can trust.

    Its worth remebering that lots of people do have reatments which work either permanenly or for the very long term. Impossible to generalise about these things. Fortunatelly very few people are as resistant to much of the available treatments as I.

    Indeed , who wouldn't opt for private treatment if they could and if the circumstances warrant it. After all your sight isnt replaceable is it?

    I am sure you will feel better after your holiday and more able to cpe . Dealing with it all is very stressful. Perhaps your eyes will improve once you are less stressed- I hope so. Wise move with the sunglasses!
     
  8. Unbeliever

    Unbeliever · Well-Known Member

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    OMG I bet you know his schedule better than he does!!! He may have changed his clinic as I had my avastin on a friday afternoon - then seeing him today at 2. I'm so glad he could fit me in when he could though as any later and it would have jeopardised starting my new job. Do you get much choice whether you see him at Chester? I have been so unhappy at Manchester Royal Eye that I was thinking about changing hospitals for future appointments, but not sure if all NHS the same...[/quote]

    Its not a clinic as such - its one of the days he operates.

    You don't actually get a choice at all really . For various reasons i have found it very useful to know who is on duty and when and this has even saved me from being sent for the wrong tests and procedures at times. My detection skills have been well honed! There is a separate retinal clinic and it is quite a larged dept.
    As you probably know, it takes seven years to train an opthalmologist after they graduate from medical school. They have placements of up to six months at a ime and -of course- they have to train ON someone. That is why I can never be totally sure whom I will see..

    I am usually seen at the laser clinc where there are only a w consultants but there are no certainties as to who you see because
    anything can happe=emergencies - urgent meetings. This is the single , most stressful thing for me.
    Because I am in the laser clinic there is often little time for asking questions as I have tests OCT and hen maybe laser.
    It has become increasingly busy since i first attended the general eye clinic 5 years ago.

    I should ask him if i were you.
     
  9. the_anticarb

    the_anticarb · Well-Known Member

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    Thanks Unbeliever. I had a fairly good consultant at Manchester, one of the few I got on with, but it was pot luck whether you got her or not, and now she is taking early retirement!

    In my experience, it doesn't make that much difference until the disease becomes advanced or difficult to treat. If the laser had worked for me on the NHS then it would have been ok, of course the personal touch and reassurance side was missing but if the laser had done the job then I would have been happy with that. But as my left eye got so bad, and started to bleed, at that point I really began to feel the care was insufficient and going private became more of a consideration. Still, until Mr. C said I needed the op, I was not expecting to be told I needed it as everyone else had said the eye was responding to the laser and may just need a little more.

    If my condition now stabilises I can probably stay with Manchester but it would be good to know what other optoins there are. Mr C did tell my mum that if I got pregnant I would need to be seen more often and it might be that I'd see him privately in that situation just for reassurance and peace of mind more than anything - and of course if my right eye did completely go the way of the left, to the point of needing an op, then I'd somehow find the money and go straight back to him.

    I just feel my trust in doctors in general has been shattered a little, as I was led to believe that my condition was not that bad. In actual fact, it was another private doctor at Optegra who said this - he said it was controllable and that laser would be sufficient. So I guess no one really knows and you ask one doctor you get one opinion you ask another you get another.

    But what I like about Mr. C is that he said he treated the disease aggressively which for me was the correct approach as it has been an aggressive disease in my case, developing very fast in my eye. He said there were risks to surgery, but that balanced against the risk of doing nothing it made sense as my eye was only going to get worse on its own. So it's good to know that I have that option if things go wrong in the future but let's hope they don't as I don't think my finances can take another battering!! Ironically, my new job comes with BUPA cover but I'm imagining they'll take one look at me and anything to do with eyes or diabetes will get a big fat computer says no.
     
  10. noblehead

    noblehead Type 1 · Guru
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    I can't in all honesty call my Ophthalmology team as they have always provided first class service, the consultant I have seen for the last 5 years is the most senior in the department and he is very thorough in everything he does, my only gripe would be the waiting time in the clinic but appreciate emergency cases must come first.
     
  11. Unbeliever

    Unbeliever · Well-Known Member

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    Yes the right consultant is the key. Alhough I have monthly or sometimes more frequent appointments I never begrudge the time spent waiting so long as I eventually see the right person. Otherwise it truly is a waste of time and can even be detrimental.

    I realise that others have to get back to work etec but just seeing anyone for the sake of it means that your condition will deteriorate and you will need far more treatment and many more visits to the cliniic.

    It is quite true that every cloud MAY have a silver lining although I thought myself very unfortunate to begin with.
    I was referred to the eye clinc by my doctor who "thought he could see something on the macular. Almost a year and several visits to the clinic and there were only a few minor signs of retinopathy. When I turned up for what should have been my discharge appt I saw a visiting consultant who told me I had suffered a massive bleed. I was totally unaware of it but it coincided eactly with my bg suddenly taking a dip because of new medication.
    I then had too extensive and intensive laser which were not only totally useless but which badly scarred my retina.
    Fortunately I was then referred to my present consultant s as i said - "Every cloud".
    I am convinced I would have beeen blind by now had i not been treated with a combinaion of injections and laser.
    In fact I have been legally blind at times {according to the eye tests} and know exactly how fortunate i am.
    To begin with no one has anything else to compare theur treatment with and we all have to believe what we are told .

    I learnt at an early stage I suppose that the only person who really knows whether something is working or not is myself.
    I now know what the signs of damage are. Although there is no way of reversing it i would have refusd to have the second session of laser.

    After that and after it was established that medication was responsible for my macular oedema I think I changed my personality.

    I became much more assertive and much lessinclined to take anything on trust. If Drs can't handle this then that tells me a great deal about them. The very best are happy to learn from patients.
    I think you have to make them respect you too by doing your bit to keep diabetes under control and by striving to understand the limitations of the treatment and their inability to make a prognosis most of the time.
    I think it is very necessary to inform yourself , particularly for this condition . trying to keep calm helps a lot because it is a very emotional subject and not all drs are good at coping with emotions. They are sometimes pushed into appearing vague and cold.

    had i not been so fortunate in my consulytant i am sure i would have given up on the reatment a long time ago. That would have been a very bad mistake.
    I have been helped to control my diabetes because of the effect on my eyes and working with them a strategy for coping was worked out. If f you are unfortunate to need continuous treatment it is really necessary to be proactive. To offer feedback
    and ask questions and let them know you want to be involved.
    There is also the satisfaction of knowing that you are helping others by helping the Drs.
    I could very easily have given up a couple of years ago. I am glad I didn't because now I still have the opportunity to benefit from new treatments and have learnt a great deal about the condition and how o keep it as stable as possible

    Although it may not seem so at first it is just as necessary and possible to take an active part in dealing with retinopathy etc as it is with diabetes.
     
  12. the_anticarb

    the_anticarb · Well-Known Member

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    Saw Mr. C today and he said the op went well, the eye is healing well and I've not had any bleeds. This can be a risk in the first few days post operatively, although it can also happen later, it's less likely to so I feel like I've got through the initial recovery period unscathed!
    My mum came with me and took over the consultation a little, bless her (does Mr C really want to hear about all the diabetics in our family?) but she did ask if he could see me on the NHS and he said yes, to get my GP to refer me to him. Now I know that won't necessarily guarantee I'll see him every time but I will at least have a hope of seeing him and if all wasn't well, perhaps being referred up to him by a deputy. I've had it with Manchester eye hosp, really don't want to go back there again so whilst Chester might not necessarily be much better it can't be much worse!
    I did ask him how long a vitrectomy would have taken on the NHS and he was a bit evasive, he said it depended on the hospital but could be months. I guess that's the waiting time from when you're actually put on the list for one and not the bit in the beginning where they try laser to see if that resolves things first. It will be interesting to see how long your wait is Leb if they list you for one after your next appointment.
     
  13. leb

    leb Type 1 · Well-Known Member

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    Thats grrat news ac :)
    Yes ot will be very intetesting to see timescale if theysay i need the op!! i wii be asking uestions for sure. As i said he is the main one evem at the private hospital and happens to be the one my gp chooses to see because he is kniwn for hus expertise so um quite hopeful that he is good but i guess only time will tell.
    Keep up the speedy recovery :)
     
  14. the_anticarb

    the_anticarb · Well-Known Member

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    Thanks ! I've been told to do absolutely nothing for two weeks, which feels very indulgent - I keep calling my other half my servant! If all goes well (which I'm tentatively beginning to hope is the case) this may turn out to have been quite good timing in retrospect for my eye to bleed, as I will have managed to have the op and recover whilst inbetween jobs, and be rested and fit to start my new job on 13th August. :D Fingers crossed all will be ok and the retinopathy will stay away.
    Hope you get the answers you need when you're seen on the 8th Leb, i will be thinking of you and hope you get a good response from the consultant.
     
  15. the_anticarb

    the_anticarb · Well-Known Member

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    I saw Mr. C today and he said my eye is healing nicely. So relieved particularly as I've had conjunctivits over the weekend and i'd half convinced myself it was endopthalmitis which is when the infection gets inside the eye, and often leads to blindness, but he had a good look and I'm in the clear.
    I asked him about my driving license he said I should pass the field test as things currently stand, as my right eye has not had too much laser, I just HOPE and PRAY the right eye stays that way, I don't know if I could bear to go through any more retinopathy in either eye! I will still do the field test myself though to see.
    I keep feeling very panicky, I think it is a bit of a delayed stress reaction to the past few weeks and in particular the awful week when I started to bleed and ended up in a and e three times not sure what was going on.
    Even little things, like a parking ticket, make me feel all panicky even when compared to what I've been through a parking ticket is nothing at all!
    Maybe it is normal to feel this way after a bit of a shock, I just feel like my nerves are a bit jangly and I can't take anything for granted anymore.
    Does anyone know what I mean??
    Anyway hopefully I can try to relax and chill out I have three weeks til I start my new job so plenty of time to sort my head out.
    how is everyone today, Leb have you gone on holiday yet? Have a lovely time hope you can manage to relax a little and forget it all :)
     
  16. leb

    leb Type 1 · Well-Known Member

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    Thats great news ac about ur eye keeping everythingcrossef 4 u thst it continues 2 imorove.

    I know exactly how u feel though as far a being a bit paniky. I was like that but am stsrting to cope a little better. I think its wirse when u have time to tjink about things. Ur mind runs away with itself and thatsnever a good thing with me.
    I think its the uncertainty that doesnt helps. As ub often says this horrible disease us one that doesnt always follow a particular route nir dies it affect everyone the same. As with everything its tje unkniwn and i dont know anyone wgo finds that easy to deal with.

    But at least for niw things are looking up. I wiah u all rhe best ac. Im gonna try ad relax as much as possible on holiday like u say and try and firget about things even just fir a few dys x
     
  17. leb

    leb Type 1 · Well-Known Member

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    Hi ac
    Hiw r rhings goun? Hioe the new job is goin well.
    Have u been back for any mire check ups at hospital?
    Ive only got 13 days rill my op niw. I am so scared but in one sense wanr it to be done. Did you have to so any posturung after ur op? Rhe nurse at my pre op said there wull be sime form but untull tgey kniw how its gone hiw and fir how ling coyld not reallt be answered.
    Best wishes
    :)
     
  18. the_anticarb

    the_anticarb · Well-Known Member

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    Hi Leb

    Hope you are ok, bet you can't wait to have it over and done with. Before my op I felt a little like I did before I gave birth - kind of worried but wanted it over and done with. I was more scared of not having it done than having it done - I remember when they pulled out the abnormal vessels I mentally breathed a sigh of relief. As for posturing, this depends on whether they tear the retina during the op. My surgeon said they could either make a cut into the eye white itself (sorry if anyone's squeamish) or do three little holes for the tubes, depending on the amount of damage. In my case they just did the holes, which are easier and take less time to heal. He said I may need posturing if they tear the retina luckily he didn't or else it would have been longer to recover. Also sometimes they do a schleral buckle where they position the retina back with a bit of plastic, again I think only if it tears. Also be very careful not to touch your eye, and use antibacterial hand wash, in the weeks afterwards as you really don't want to get an eye infection, although it is pretty rare that happens.

    I started my new job on Monday and the job itself is going well but I am underdosing a bit as I'm scared of going hypo in front of my new colleagues. I really don't want to do this, but I'd rather run slightly high than risk going hypo during my induction. Once I've settled in I will be able to risk it. and so I'll try and get my control tight again. I just don't want my diabetes to be a big deal. I haven't told my boss I'm diabetic - do you think I should? Today I was in a big long meeting and people kept coming in with cakes and biscuits. I was injecting in my leg under the table - no one could see I'm very good at being subtle! I shouldn't have to hide it but I knew if I did it out in the open people would start thinking I shouldn't have had a cake etc. No one wants that when you're trying to make a good impression on new colleagues.
    I've been worrying about the shall-i-shan't -i - have - another-baby thing again. At least you got retinopathy after your pregnancies, so you don't have that to worry about. I really don't think adoption is for us, so I'm thinking now to give it a year and if my retinas are stable to go for it. If they're not I won't.
    Also I found out today that my BUPA cover not only won't cover me for retinopathy but won't cover me for anything diabetes related. So it's useless as that's the only thing wrong with me! I know this is how insurance companies make a profit but I was hoping the company scheme would be more inclusive. I am scared of needing another op in the future on my other eye, I guess I will need to start saving again.
    What have they said about your other eye will that need an op too or are they hoping it will get better with just laser?

    Take care
    AC
     
  19. leb

    leb Type 1 · Well-Known Member

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    Hi ac
    Glad the new jobs going well
    i can understand how u feel about not wamting tje big d to get in the eay. Its a tricky 1 and u habe to do what feels right. Im luvky in one tespect as my boss also has type 1 diabetes so hes very understsnding and ive never felt the neef to hide it. Everyone i work wirh kniws about it and always have as i used to feel i had to tell them in case i ever had a hypo around them.
    Well im prating the retina diesnt detatch nut the consultant did say the scar tissue was very fiemly attatcged to the retina from what he could see but also said they may cut around it instead of trying to remove it because of the extra risk. Naybw thats what he neant. As far as my other wye goes hus words were 'its no better than the orher it just hasnt haemoraged yet' this scared the hell out of me as i kniw hiq quickly my sight gas gone with all the bleeds. So once afain im praying that diesnt happen.
    It seems to me that most of thus horrid thing is down ro lyck i.e if vessels griw, if they bleed, if the retina detatches, if it hesls well, if it responds. Judt one very ling list of big fat question marks!!!!!!!
    Well im glad that alls going well fir u keeping my fingers crossed it stsys tgat way and that my srory can mirror urs in this stage like it seemed to in the earlier stages
    Take care :)
     
  20. the_anticarb

    the_anticarb · Well-Known Member

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    Hi Leb

    At least if your other eye bleeds chances are this will be after you've had the vitrectomy in the first eye so you won't have two bloody eyes at once.
    Will they do a vitrectomy on this eye too or wait for it to bleed? I'm imagining they will wait for it to bleed which is not good as you'll know that it may happen at any time.
    From what I've heard it is good that they are doing the vitrectomy so soon, my friend's dad had a detached retina and they didn't even do it then, just more laser (the NHS love laser!) but lo and behold this did not sort it long term and now it has bled again and he's getting the vitrectomy this time.
    I'm seriously hacked off that my BUPA cover won't cover me for any more treatment. If I do go through another pregnancy I will only do it if we have the money aside for eye treatment. My thinking is that people can spend 5k per pop on ivf to have a baby if they have fertility problems, so if I have to pay similar in order to feel safe enough to have a baby then its kind of the same thing.
    I won't be trying for at least a year anyway. Hope I won't be too old by then, I'll be 36 and a half. My friend had a baby in her early 30s no problem then tried again 5 years later and had a real struggle though so hope it won't be too late.
    I saw a book in the children's section of the library written for a child who's mummy was having another baby, and it nearly made me cry at the thought that I wouldn't be able to do that. If I was younger I could put it on the back burner for longer but I need to balance letting my retinas stabilise with not getting too much older. They're gonna love me in antenatal- older mum, diabetic, retinopathy! That should keep em busy!
    Try not to be too scared about the op. These docs know what they're doing. And you'll be asleep for it so you won't have to watch the show!
     
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