• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Retinopathy.

D

diva19871987

Well-Known Member
Messages
74
Location
Nottingham
Hi, I have been trying to get some info on retinopathy n type 1 diabetes. I currently have background retinopathy at the age 25. Ive had diabetes for 12 years.

Ive been watching lots of videos via youtube and would like to know others experiences if they have diabetes and retinoapathy. No treatment as of yet is needed and I have been told it is fairly mild. 2 years ago when I was diagnosed with floaters in both eyes.

They seem to be getting worse and I have developed a scatter of floater in my right eye.

I would like to know, what is your experience with retinoapthy and floaters? Did it get better by itself? Was treatment needed and if so what was it? Have you lost any sight due to the diabetes?

Thank you
 
diva19871987 said:
Hi, I have been trying to get some info on retinopathy n type 1 diabetes. I currently have background retinopathy at the age 25. Ive had diabetes for 12 years.

Ive been watching lots of videos via youtube and would like to know others experiences if they have diabetes and retinoapathy. No treatment as of yet is needed and I have been told it is fairly mild. 2 years ago when I was diagnosed with floaters in both eyes.

They seem to be getting worse and I have developed a scatter of floater in my right eye.

I would like to know, what is your experience with retinoapthy and floaters? Did it get better by itself? Was treatment needed and if so what was it? Have you lost any sight due to the diabetes?

Thank you
Click to expand...

Hi,
I've been a T1 diabetic since the age of 11 (35 years now) and I started to suffer from retinopathy about 15 years ago. Mine was noticed after I had a bleed caused by staining to pull a ship's mooring rope ashore. This left me with a long dark line in my eye, which I later found out was the blood.
Initially, a couple weeks after this happened, a few shots of laser treatment was enough to stop the bleed recurring. However, the doctors then noticed changes developing on the retina and blood vessels becoming weak. I had laser treatment at my local eye infirmary about every 3-4 weeks. The treatment involves the laser burning (cauterising) the weak blood vessels of the retina to stop them leaking blood into the gel in the eye. It is not painful, although sometimes some heat can be felt and the eye can feel dry. Recovery time is generally a few hours and I could drive within about 6 hours. Sometimes, following a bleed, it is not possible for this to be done as the blood can cloud the gel, making it both difficult to see out and impossible to aim the laser accurately.
This was the case for me. They couldn't see in to perform the treatment and the longer they left it, the more it bled. Eventually, I had to go to a specialist eye unit in hospital where they performed a vitrectomy. This process involves (brace yourself)...making 3 small incisions in the eye, removing the gel, performing as much laser treatment as required and then filling the eye with saline and oil and stitching the holes up again. Again, it is not painful and can be performed under local anaesthetic (though I opted to be completely out!!). The same feelings of dryness can occur, and I did feel as if I'd been poked in the eye. Recovery following this is about 24-48 hrs. A patch is left over the eye overnight and I could see well the next day.
Laser treatment does have it's downside. Because the laser burns the retina, blind spots are created and scarring occurs. If you have very large amounts of treatment the blind spots cause difficulty with the visual fields and the scars can cause the retina to become detached from the back of the eye. These things obviously create sight problems. Personally I have experienced both of these and I am blind in my left eye, have partial vision in my right eye and have developed a left cataract. My sight has been stable now for about 6 years but the DVLA have stopped me from driving as a result of the poor vision and narrowed visual field. I have 3 different types of eye drops because of glaucoma which is also related to the laser treatment.
I doubt that too many people suffer quite so many problems as I seem to have done but that's the chance you take. The alternative to the laser treatment is clearly a definite loss of sight, so the treatment offers hope at least.
I hope this has been useful and not too disturbing, but I've tried to be as honest as I can be. Remember this process has taken 15 years and better treatments are always being developed.
Regards,
 
I have the advanced stage with new blood vessels growing on the retina and now face having it covered with lots of little burns to try and stop the process. I was actually clear in February but the doctor said I "had quite a few" by May and in April had a heart attack and started 10 pills per day and have a nagging doubt that the 2 things aren't unconnected :sick:
 
SouthernGeneral6512 said:
I have the advanced stage with new blood vessels growing on the retina and now face having it covered with lots of little burns to try and stop the process. I was actually clear in February but the doctor said I "had quite a few" by May and in April had a heart attack and started 10 pills per day and have a nagging doubt that the 2 things aren't unconnected :sick:
Click to expand...

Increased blood pressure can be a factor in the retinopathy, causing extra pressure in the weak blood vessels and clearly it has a bit to do with heart attacks. Do you suffer from high blood pressure too? I am treated for this.
 
Actually I did before the heart attack but the medication since April has brought it down.

The reason I mention the medication is that since I started it I get sore legs while walking which is probably poor circulation and I understad that the blood vessels start appearing on the retina becaue of low oxygen so perhaps one of my 10 pills is contributing to that?
 
SouthernGeneral6512 said:
Actually I did before the heart attack but the medication since April has brought it down.

The reason I mention the medication is that since I started it I get sore legs while walking which is probably poor circulation and I understad that the blood vessels start appearing on the retina becaue of low oxygen so perhaps one of my 10 pills is contributing to that?
Click to expand...

You're sort of right regarding the blood vessels. The existing vessels get clogged in the same way that the vessels in the extremities do because we diabetics are prone to calcification. The lack of blood supply caused by the calcified vessels in turn causes the new, weak vessels to grow. They then leak as they cannot manage the blood pressure that the original ones can. The pain in the legs is also caused by the calcification in the peripheral vessels.
 
The thing is though my legs were fine before the heart attack in April so it's either the heart attack that's caused it or the 10 pills a day and if it's caused that in my legs it could have caused the same thing in my eyes
 
Superb post and explanation about retinopathy mrburden. I would recommend you if there was a call for someone to eplain the whole thing honestly and clearly and from their own experience.

I feel eactly as you do . The treatment is not as grisly as it sounds or as painful . The alternative - blindness - is far worse and
treatments are improving and will continue to do so.

If here are sticky threads for complications then your post should be made a sticky.

It does seem to be the case that the longer one is diabetic the more likely to develop retinopathy. That is probably why i seems o affect more T!s and T2"s like myself who are thought to have had the condition for many years before diagnosis..
I still think it needs some sort of trauma to acually bring on the condition. I know that I had minimal retinal changes when diagnosed and brining my levels down rapidly caused the intiial bleed from which I have never really recovered.
Yours was brought on by the strain wih the mooring rope. Obviously where a weakness exists here s always the possiblity of further problems.

I hink that this is why treatment works well for some and not for others. It probaly takes very little to start these hngs in some of us.
I am interested in the possibility of a steroid implant. apparently NICE have agreed on the funding for NHS paients.
There is the small problem of a higher glacoma risk but I a sure this will be ironed out in time.

Congratulations again on that excellent and definitive post.
 
diva19871987 said:
Hi, I have been trying to get some info on retinopathy n type 1 diabetes. I currently have background retinopathy at the age 25. Ive had diabetes for 12 years.

Ive been watching lots of videos via youtube and would like to know others experiences if they have diabetes and retinoapathy. No treatment as of yet is needed and I have been told it is fairly mild. 2 years ago when I was diagnosed with floaters in both eyes.

They seem to be getting worse and I have developed a scatter of floater in my right eye.

I would like to know, what is your experience with retinoapthy and floaters? Did it get better by itself? Was treatment needed and if so what was it? Have you lost any sight due to the diabetes?

Thank you
Click to expand...

Hi there 25 is such a young age. It seems to affect a lot of people, myself included. After 22 years of type 1 it caught up with me and I have had a few laserings and my right eye, at the momen,t is not behaving its self, with a big bleed 2 weeks ago and some ongoing smaller bleeds. I must get of the habit of constanly closing my right eye to see properly, as I have been making lots of mistakes and I have to look very carefully at what I am doing or trying to see. I don't know what the future holds but I wont let it get the better of me. It sounds like a Hammer horror story, but really treatment isn't so gruesom, even though I personally hate having laser treatment, I get worked up about it,, its just an eye thing, but I just get on with it, and thank goodness there is treatment and medical support for diabetic eye problems, as at least I still have both eyes :D I hope things get better for you and any treatment works well :thumbup:
 
Here some good basic info on Retinopathy www.stlukeseye.com/Conditions/DiabeticRetinopathy.html

Floaters aren't diabetic linked everybody gets them, if the vision is being blocked as it shows in the link I gave, it's from bleeds and if the bleed is only slight the gel in the eye can reabsorb the blood...

it's virtually imposable for a diabetic to suffer a degree of retinopathy, but the good news is that this leading to blindness, or server impairment of vision is below 0.5% here's so more information www.medpagetoday.com/Ophthalmology/Gene ... logy/16261

Good control is the best way of helping to ensure that eye problems are kept to a minimum, avoiding large fluctuations in control, as it's not just your overall HbA1c that can increase the risk of bleeds, but several other factors, such as high blood pressure, large variations in blood glucose levels on a daily bases, and also dropping high glucose levels too quicker or tightening up your control too quickly...

But the most important thing is never miss an eye test... And when I mean eye test I mean both the screening and your normal optician test.. As I've got no problems I have a yearly screening, so I arrange my optician eye test 6 months afterwards... So any probs start brewing hopefully they be picked up early..

My hubby also a T1, had a major bleed which detached his retina, so needed quite a major eye op, similar to the vitrectomy, but with the need to actually go into the eye to stitch the retina back in place, which then held in place with a gas bubble, so quite a long recovery, as movement such as standing and even sitting up, is very restricted to ensure that the gas bubble doesn't move out of place, they couldn't say before the op what sort of impairment might happen nor whether they could save his sight.. But it went very well and limited impact on his sight, he lost a little of his side vision, and it caused night blindness, but as he doesn't drive (he's never bothered learning) it doesn't have any impact at all... That was 14 years ago, They did zap a vain with the lazer about 3 months after his op...

So if you do have a problem, doesn't mean you'll on a slippery slop to blindness, as there is so much they can do, which improves with every year... And if you playing your part by keeping good control of your diabetes etc, then hopefully you may never get a problem that might causes any impairment of your vision..
 
Unbeliever,
Thanks for the compliments! Considering I usually manage to upset people that was good to read :lol:

Diva19871987
I was going to add that I have had upwards of 3000 laser shots in total, some 2000 of these were carried out during the 3 vitrectomy operations and the rest were done at the eye infirmary in groups of about 30-50 at each visit. That gives you some idea of what to expect if you need to have retinal laser treatment at any time in the future
 
Do you upset them in general mrburden or just about retinopathy?

All that I would have added to your post -and which you covered in general terms- is he increasing use of steroid and avastin injections - which dry up the fluid in the eye . This is then followed a few weeks later by laser treatment.
It makes the laser more effective and able to be focused more accurately.
I have lost count of the amount of laser I have had but wish I had been given the injections earlier . I had wwo intense sessions of laser which did nothing but frazzle my retina.

The injections carry a fairly high risk and definitely lead to the development of cataracts. I have had one removed and need the other doing, The injections carry a risk of blindness , retinal detachment and glaucoma and also of making macular oedema worse
nbut i am convinced i would be blind now without them.
If avasin works for you it is preferable as it is a clear liquid which has no after effects bu unforunately it does nothing for me,

The Americans don't seem o go for this much , I don't know why. Avasin is an ani-caner drug which works by cutting off the blood supply to tumours. It is a cheaper version of lucentis and is used here off-lcence.. Maybe the FDA don't like that.
I know they do use he steroid but that is still rarely mentioned. A friend works in one of America's leading private eye hospitals and it is not a treatment they use.
Maybe he risks - 25@ for some risks and 50%for others is too great for them.
 
MrBurdan

I don't think you can say, what to expect as everybody is different...

With a vitrectomy lasering will only be carried out if it needs to be done, and even though my husband had quite a major bleed, there wasn't anything to lasering, the only time he's had laser treatment was 3 months after he had his op, but that was a 10 minute stint in the chair!

And I know others, whose needed intensive laser treatment, others problems are resolved very easily...
 
jopar said:
MrBurdan

I don't think you can say, what to expect as everybody is different...

With a vitrectomy lasering will only be carried out if it needs to be done, and even though my husband had quite a major bleed, there wasn't anything to lasering, the only time he's had laser treatment was 3 months after he had his op, but that was a 10 minute stint in the chair!

And I know others, whose needed intensive laser treatment, others problems are resolved very easily...
Click to expand...

As a general rule, far fewer laser shots are carried out at an eye infirmary visit than during an operation. This was what I meant by what one should expect. If people don't have any idea, the expectations can cause great concern. I realise that some people will have a little more and others a little less but this is a general, ball park figure. One would not expect to have 1000's of shots at a clinic appointment and therefore would not need to worry about the amount of shots running into 1000's, after the first 2 or 3 had been given.
 
Unbeliever,
It's a general thing really! I can't seem to keep it shut when others think I should have!!
O never knew about the injections. I can see that they would be very useful in the case of retinopathy. Should I be in need of any more treatment, I'll certainly ask about them. Thanks
 
And what's sick about that, why should s/he know!

Did you ask what field he trained and gained his medical degree in?

See a GP isn't a specialist in all fields of medicine s/he he will have their medical degree, which after the foundation part of the degree, they would have finished their training off in a specialist field... Then taken further training and qualifications to become a General Practitioner... That enables them to handle general medical problems but not at a specialist levels, hence why they refer us onto a specialist at the hospital!

My old GP didn't know how to initiate insulin therapy...

Not because he was incompetent, he knew how to diagnose diabetes, he knew how to identify problems such as DKA, knew how to increase a dose to counteract DKA as an interim measure before admitting you to hospital, but deciding what insulin to put somebody on and a starting dose was a different matter..

As he explained, his training etc was in Gyno, which where he trained was next door to the diabetic department, so any diabetic females get help from the diabetic department allow the ones who knew sort a problem out! His general practitioner training was based on identifying problems, basic treatment and referring to a specialist!

So unless the locum, had trained in endo/diabetes then this bit of information isn't derogatory not to know!
 
I would have thought that was fairy basic?

It does make you wonder how qualified they are to give advice on the condition I mean she also told me they don't give prescriptions for test strips so how valid is that opinion?
 
Sotherngerneral

Don't forget you'll answering in the T1 forum and you'll are T2 diabetic..

Sorry no I wouldn't expect my GP to automatically to know that piece of information...

As to test strips for T2's well we all know that gp/pct's seem to avoid doing this, due to having limitations to what they can achieve on a mass scale, only those who are not only willing to actually test effectively and use the information to change lifestyles really benefit...
 
Back
Top