retinopathy research could reduce screening costs

[Cowboyjim]

http://www.eurekalert.org/pub_releases/2012-05/tpco-drr050312.php

Since I am going "under the knife/laser" again this month this was a topical one to start the week... I thought I had my BG under good control, last HbA1c was 5.2 but on my last visit to the eye clinic to check on the success of the right eye repair he tells me I have to return for another zap in my left eye. It is an unpleasant experience and mucks up your vision for hours afterwards, well it is the chuffing drops the nurse puts in them that does it... I do wonder if having hypertension as well does aggravate it. Disheartening and one has to re-summon the willpower to go on let alone steel the nerves to actually honour the appointment. That said it might have saved my sight so I suggest to anyone who reads this please attend the clinic. They do their best and it is all free. 8)


Diabetic retinopathy research could reduce screening costs

The research team developed a model that simulated the progression of retinopathy in type 2 diabetes and related screening, in order to predict the rates of retinopathy-related sight loss. The model used data from the Royal Devon & Exeter NHS Foundation Trust in the South West of the UK and the research team generated comparative 15-year forecasts to assess the differences between current screening policies and those proposed by the findings of the study.

 

[Unbeliever]

http://www.eurekalert.org/pub_releases/2012-05/tpco-drr050312.php

Since I am going "under the knife/laser" again this month this was a topical one to start the week... I thought I had my BG under good control, last HbA1c was 5.2 but on my last visit to the eye clinic to check on the success of the right eye repair he tells me I have to return for another zap in my left eye. It is an unpleasant experience and mucks up your vision for hours afterwards, well it is the chuffing drops the nurse puts in them that does it... I do wonder if having hypertension as well does aggravate it. Disheartening and one has to re-summon the willpower to go on let alone steel the nerves to actually honour the appointment. That said it might have saved my sight so I suggest to anyone who reads this please attend the clinic. They do their best and it is all free.

I know just how you feel Jim. I have been having laser and injections for almost five years now for retinopathy and macular oedema. IThe hing is that to dae I can stilll see. At times this has been touch and go and he options are fast running out
for one of my eyes but I just try to stay positive about it as I know there are new treatments in the pipeline/
No laser is not a pleasant experience. It is not painfiul -usually - but can be very stressful and disorientating.
People think you grow accustomed o hese things but I never have.

The injection thing is more stressful Particularly if you have the whole operaing theatre procedure and admission o the ward etc as I do. I have to say the most stressful part is waiting to see which surgeon I will get. Yes there is a difference.
If you are offerd Avasin injectins hese are often performed in a treatmebnt room and there are usually no side effects . The steroids do leave you with floaters possibly for a few weeks.
In my hospital steroids are offered a s first option . Smetimes that just solves the problem. Avasin is next and that can be very successful. Unfortunately not for me.

The injections are generally followed up with laser which seals the process. laser is more successful when he fluid in the eye is dried up by he injection.
I was quite devastated when my second eye also needed to be treated.I think though, if you are having treatment already for one eye they may begin treatment on the other at an earlier stage . just purely because they can tell how it has progressed in the first eye. A sor of personalised version of he new proposals you have posted.
If you have reduced your bg levels this can actually make he condition worse. In fact any changes can. As can the treatment.


Hypertension is definitely a contributory factor. I actually had a major bleed when I the ramipiri I was given as a preventative measure was increased. I don't think a great deal is known about this side of things. N one can understand that
Why I do not respond o treatment ecept in the very short term.
Doctors still repeat the mantra about reducing bg levels but they are firmly convinced that 7 is the magic number.
I think that they are still in the early stages of cping with this complication alhough , with increased no of patients they are learning fast.
As you say they have probably saved your sigh and the cost of private reatment is astronnomical.
I have gone through stages of wanting to give up as I don' seem to be improving. I am fortunate enough to be treated by a wonderful consultant whom I trust because he ishonest with me. I am not sure what i would do should he leave.

I am sure that there are ways that the screening process can be improved i is a fairly recent development and never seems to have been implemented satisfactorily on a natonal basis.
Perhaps a rethink is due. I personally wish that they had not rushed into laser reatment in my case because it has done more harm than good. There is always the perception that immediate reatment must be better and more effective.
Not always. Injections to dry the fluid before laser would have been more appropriate for me and less epensive for he NHS
as well as giving me more ptions for the fuure.
I also feel that intensive laser at an early stage should be avaided. less is more? I now have one frazzled retina. if only I could have seen he consulant earlier hings might have been different.
Proceed with caution might be a good policy. At present we have people worried out of heir minds when told they have background reinopathy which may in fact, be reversible.
if only Gps and hospitals could work together patients could be spared uch anxiety. It may be diffferent elswewhere but in my area no GP will even dicscuss hospital treatmen for retinopathy with a patient

yes, you habg on in there Jim. The alternaive is unthinkable.

 

[noblehead]

Jim,

I was told keeping bg, bp and cholesterol all under control helps in the prevention and treatment of diabetic retinopathy, the following site says much the same and offers some excellent information on this condition:

http://medweb.bham.ac.uk/easdec/

 

[Cowboyjim]

Thanks for the comments. I was reluctant to post on here about this treatment prob because it still un-nerves me. But I over-rode that thinking it might help others - if I can do it then so can you.
It also freaks me out just going to the hostipal... so much for my BP... and you have to wait around while the drops work, and the waiting room is next to some kiddy clinic thing... yargh it is hardly calming..
Plus I used to work in a research lab and it was verboten to let a laser anywhere near your eye. The thought of someone shining one with that power in my eye requires a very steady nerve... I am proud of myself going through this but I can imagine for others this is a non-trivial thing. But of course without it you will go blind so just get on with it!
Plus they fuss about your getting home... I just walk the mile ish to mine. Def not a good idea to drive and not just because of the rip off parking fees!
I have actually considered not going to the next appt. It is a gamble. They kind of reassure/scare you but ultimately it is your choice. My right eye is OK but then it was OK before as far as I could tell. This is how insidious ret/MD is.
In my mind I risk degrading my left eye with this.... but I shall go I think. Sometimes you just have to release yourself to their care and keep your fingers crossed. This aint easy...
But most of all I am sooo cross because I have worked hard to get my good result with the Hba1c and yet it seems to count for little... I have had DM for over 3 years I know, I was diag in 09, so I am paying the price of years of not knowing... if only I had found out earlier blah blah but at least I found out. Nor did I know how DM can destroy your eyesight like this, had I known that I might have gone for tests ten years before... so if you are circumspect and have managed to read this epistle this far... go get tested! It will save you in the long run... believe me.
Overall though it really does my head in that what we innocently put in our mouths that we are sure is good for us can make you lose your eyesight and worse... someone has seriously screwed up with the design of the human body! 8)

 

[mrawfell]

I am a Brit retired in the Philippines. So any medicals and treatments are payable. My doctor decided to do an annual blood test and ECG, cost about 15 pounds. covers liver, kidney, BG levels, cholesterol, triglycerides, and obviously heart. Result I was diagnosed as T2 within a year of it happening.
Makes you think.

 

[Cowboyjim]

Good for you and commiserations!
Sadly for all the rhetoric there is no regular comms with patients on their books to come in for a check up... that said how many would bother is doubtful... maybe I would not have gone. In retro I was stupid. I only went in because I had, ironically, eye trouble... just a twitchy thing that would not go away... checked my BP... within a fortnight I was on tablets, another fortnight I was on metformin... good for them... eventually... but I had not been in to see the quack for over a decade... no one is that healthy eh? Why does their system not flag this up and offer you a visit replete with inducements etc... hot n cold running nurseys in snug uniforms and I would have been in there like a shot... :lol: never mind the BP tho. Sadly we only go because of something else... busy lives are not an excuse. But with all this talk of prevention they must revise this approach methinks even if it got just a few of us old gits in there... 8)

 

[Unbeliever]

Dunno Jim. I kep telling my docs I had diabetes - they kept assuring me i didn't. When i was finally diagnosed , entirely by accident and not by them I had only background retinopathy. The mad dash to reduce my levels saw me first on rosilitazone t as well as metformin. Then when I requested to come offf it as it wasn't working anyhow and here were so many scary stories I was pu on glimepiride and my bg fell about ten points overnight. Dr thought that was great.
had been attending the eye clinic for about a year then because my dr liked to send everyone there before the days of the annual retinal screen. No sign of anything unoward after 4 3monthly checks. Went to the clinic for what I thought was the las ttime , be dischafged. This was a few days after my levels had fallen drasically. I had suffered amajor ble
This was just before the hristmads holidays 4 years ago,..IThey wanted to do immediate laser bu couldn't fit it in.
I had two very intense sessions of laser on my left eye. The worst thnhg that ever happened o me .
It has never been the same since.

As I showed no improvemen i was referred to a new consultant , Thank goodness wo was able to perform these injections and much else. When he uses the laser it is absolutely amazing. he can do it where ohers don't dare and iyt is effecive- for a time anyhow.

yes you should be proud of yourself Jim. Its not brave o do hings that you have no fear of -only when you have to force yourself. to do it.
Not everyone is as epert in the use of the laser or with he injecions. Neither work sometimes when I see a different person.
I shudder whe I seee warnngs about the radioactivity in the rooms where they carry out the treatment. Much worse for the dioctors who have to work in hese conditions all the time.

I know how you feel about lowering your HBA1C to no apparent avail. I suppose i the long run it is in our own inerests o do so to preven further complicaions but they are constanly amazed when hey ask me for my last HbA1c results or my own meter eadings. In fac reducing boh my bg levels and bp only made matters worse with my eyes. My cholesterol has never been an isssue.
I read somewhere that it can take 3 years of good control to affect retinopathy. I have already had to years of excellent conrol but have seen no benefots so far.

The whole thing is nerve wracking I agree. It is particularly annoying when people hink it is like those TV adverts for laser treatment for short sighy where the operaor sits several feet away and aims a tiny machine at your eye. if only.
I once had a 4o minute session of intense laser. I couldnt see for hours and had o go to bed when i got home.
I understand that some hate it so much that they have to have a general anaesthetic !
So you are not alone Jim. in your dislike of the process.
I have to say that, as with everything else here is an element of luck in whether you are diagnosed a the righ time and whether sometimes it has that much effect on comlplications.
I have heard a theory that if you have a paricular weakness which you may not know of - your Achilles heel, then you may ge complications whatever you do .
I can accept his as I can remeber i eye infections when I was a child or as a resuklt of hay fever in my ill fated left eye.

 

[Cowboyjim]

If the worst comes to the worst there is always this
http://www.bbc.co.uk/news/health-17936302
electronic eyes....

 

[ShyGirl]

 

[Unbeliever]

Yes losing your sight does change everything, I can cope with a certain amount of sight loss. What frightens me is he hought of trying to cope with my diabetes control if my sight gets much worse and hen getting further complications,

I feel as if its a ime bomb oo. It is not always obvious when somethng happens. In fact its often happened when I thought it was all going well.

I think that is why I have absolutely no time at all for the practice Nurses etc , ticking their lists and fussing around about absolutely nothing . Mine make me nervous. Any changes have a bad effect onm my eyes so I have to keep impressing them with his fact. They ddn't help me o control y bgs so I think they should mnot ry to interfere now.

It mus be great to be able to trust and respect your HCPs.

I know the feeling ShyGirl. Any different in your vision and you worry. It isn't possible to keep pestering the clinic . It is always there at the back of your mind though.

 

[Cowboyjim]

I agree with all of the above.... this has been quite an enlightening experience but inevitably a disturbing one. It is too close for comfort for me too. Lucky me in some respects that I have yet to suffer some of the other consequences of DM. A friend of mine has lost toes for example. Yet curiously she can still see well enough.
I have a regular blood test and so far so good. So I assume my kidneys are OK too... but as I said I cannot help but feel my confidence (smugness even) over a low HbA1c avails me of little where my eyes are concerned.
There could be three reasons for DR/MD:
DM
Hypertension
Genetic predisposition

The first two are within the consensus but I have yet to read or hear of anything for the third one. Of course in my case all three could be at work... which accounts for the treatment I have been enduring. I will ask the medico when I visit for the next session but I suspect I already know the answer.... and all the time not be able to rid myself of the feeling he has no firmer clue than me, the one with the illness but not the medical degree.

I reiterate that having DR etc was something I was dreading but it was still a shock. Did not help that the news from my first visit to the eye clinic arrived a day before going on holiday! I left the bad news letter unopened but you can imagine the niggle I felt for the days I was away trying to chill and restore my mental equilibrium. It aint easy, in fact at times I am terrified too.

That said, it was a nasty surprise that cruelly hit me hardest when I read I not only had some b/g ret but also MD. I thought this was the end. A quick visit to the GP the next day paid dividends as well as reassuring me a bit. He was an Indian guy and the first to impress me with his interest in DM and knowledge. Even so...

At that time I was unaware my eyes were breaking down under the onslaught of sugar-laded higher viscosity blood. I saw no blobs etc, the occasional floater maybe but at my age all it was was spex for reading and enjoying HD TV. AFAIK ret and DM do not reveal themselves to the sufferer through vision defects. This is insidious and the reason why you must attend the eye clinic. Even your optician is not much help.

Since the treatment on my right eye for a bleeder near the edge, my vision for most things is fine... but there are times when I cannot distinguish the finer stuff. This is why I worry for the second treatment on the other eye. Why it was so shattering to be told after the all clear for the right one I must return for the left to be done... maybe he told me more but I was too befuddled to recollect it. It does not matter, if he says I must go then I shall... and even then I know I may be back... this is the bit that causes me the most trouble.

Hope all this helps some of the fellow sufferers out there and I have not frightened you too much. I think it helps me get it down.... 8)

 

[ShyGirl]

I'd not try to speak to a GP about it or nurse. As far as i'm concerned it's best sticking to the hospital as they tend to know what they are doing.

 

[Cowboyjim]

I am dismayed that the powers that be have not railroaded you into the system... you have the tests and if necessary you get zapped etc. There is no grey area except your not enjoining. Mine even ring me up to "invite" me in...

Coping with DM and its ramifications is imho a state of mind and treating this aspect is in its infancy. There is a lot of help and encouragement on this site so keep reading... and we will keep replying as much as poss.

Sometimes I feel I have had enough with this illness and am sorely troubled by it all. It is a flaw perhaps in me that I over-think things.... but truly DM is a complex subject and mastering where you fit in with it is not an overnight job. It does reward persistence tho and empowers you making you feel better I think... I did this MYSELF, another little victory. There will be others. Setbacks too but aint that life.

There is always something worth living for, the trick is to find it....

I apologise if this comes across a tad patronising but I mean well... 8)