Retinopathy help or hope?

[dropdeadcjay]

Hi there fellow diabetics,

I am sorry I am new here and out of panic don't know where is best for this question.

This week, October 3rd 2013 - I went for an eye examination at an opticians, and they send me off to an eye clinic as an emergency case, I have been diagnosed with Proliferative Diabetic Retinopathy and will require laser treatment soon. I guess as all people in my situation say, I left it too late and my depression didn't give me motivation to get regular check ups.

Anyway, what I want to ask is, I was told by the eye specialist that there will be no improvement to my sight. This lack of seeing in low lighting is really getting me down, since I found out about the retinopathy I have only wanted to sleep all day and have been very sad and demotivated. In general my vision has become increasingly blurry since returning to university.

Has anyone else suffered from this, does laser treatment help improve your vision despite the specialists saying it won't. I've seen a few testimonials online where people have said their vision has improved slightly. I can live with the low lighting but it's this blurriness that is annoying me and making me wish life wouldn't continue.

I don't know, I feel like I have lost a lot of hope in life and can't enjoy it anymore if things are going to be like this. I survived from a diabetic related brain stroke in January and have recovered really well, but with this vision it makes me wish I didn't survive. I will do my best to improve my blood results, but is there any point if this vision is going to remain terrible?

Help and advice needed I guess, are there any success stories out there to help or anyone been through similar things?

 

[Hooked]

Slowly improving your levels will help slow down progression or any further damage. I would say it's important to get things under control, but be careful not to do it too quickly.

I was diagnosed with proliferative retinopathy at the start of this year. I had two last second on my right eye and two on my left. I'm sure back next month for a review, my levels have been awful - through no fault of my own - so I reckon I'm gonna be in for more laser soon. Ithink if I'd got my sugars under decent control I might have avoided more sessions. I've also recently been diagnosed with neuropathy to boot.

I've been told that laser will not improve things, without it I would be blind in a year. With it they can protect the central field of vision; but this may be at the expense of peripheral vision. The initial affects of laser really got me down, but ease of as time goes on. I can see black spots which are the effect of the retinopathy, but getting used to them.

You're right, it's not bloody easy, at times it's horrible. But it is do able and damage can be contained with effort on your part.

This might not be what you were hoping to hear; but it's my honest experiences over this year. Best of luck with your journey.

 

[dropdeadcjay]

Thanks for your reply, sorry to hear about your neuropathy too, I think I may have this also as I get cramps in my legs.

How did you find the laser treatment? I heard it makes vision worse at first? I am hoping that if I get my sugars down the swelling of my cornea will fade and the blurriness will clear up slowly as I become more healthy.

I had trouble seeing in the dark in summer 2012 but they did not notice any retinopathy, now I am very worried, but not shocked, more frustrated and scared of losing my vision.

 

[Hooked]

Thanks for your reply, sorry to hear about your neuropathy too, I think I may have this also as I get cramps in my legs.

How did you find the laser treatment? I heard it makes vision worse at first? I am hoping that if I get my sugars down the swelling of my cornea will fade and the blurriness will clear up slowly as I become more healthy.

I had trouble seeing in the dark in summer 2012 but they did not notice any retinopathy, now I am very worried, but not shocked, more frustrated and scared of losing my vision.

I found some of the laser uncomfortable, but bearable. Some areas the specialist was working on I found painful. I'm a whimp, but managed to get through it. My eyesight was blurred for a day or two after and sensitive to light; but most other people find this wears off quickerand are fine the following day once the drops have worn off.

Following week or so I notice large blobs of shadow to the sides of my vision at night, these seem to have faded as time has gone on, though my night vision isn't what it used to be.

My guess would be that you blurred vision is more due to your sugar levels than the retinopathy per say, with improvement it should get better. Be careful not to dramatically improve things overnight, as quick drop in levels can make retinopathy worse.

 

[dropdeadcjay]

Thanks for the links and advice people! I really appreciate it, it gives me a little hope to know people are out there trying to help, at the end of the day it's something I need to get used to and hope that I do not lose my vision.

I have a monitor now and I'm trying to improve my bloods, I did not have my monitor when I moved back to university so my eyes must of got worse from the couple of weeks I didn't have it and my bloods must have been running very high. I read it could take 6 weeks for it to get better so I just have to keep my bloods down and hope.

I've been told I will need at least 3 treatments on each eye and more likely more, which worries me to the extent of the damage I have.

I don't know what else I can do but all I seem to do is worry and find myself getting sad. I'm going to see my doctor tomorrow to get my latest results of my HBa1C test, it was 11 over summer, so I'm expecting to to be similar, if not a little worse.

How often do you have to wait between laser treatment sessions?

 

[dropdeadcjay]

my hab1c is down from 11 to 9, my doctor was trying to give me hope and remain positive to keep my bloods better but it's very difficult with this blurry and floaters in my vision

 

[Wee-Mojo]

Hi there I'm new to a forum but you all seem pretty good at supporting one another i have been going through treatment for retinopathy for 2 years now, don't you listen to those so called specialist's hun, they told me my sight would never get better and I would have blurred vision for the rest of my life! I have been experiencing low moods and burst out crying at the drop of a hat!

until last month when i went for my check up, i read the letter bored to a driving standard!!!
They took my drivers licence off me last year, i had to give up my nursing degree at uni, i had to stop working and I honestly felt like they took my life away.

so i started going to acupuncture to see if that would help?? I would try anything to get my life back lol

I've done the laser, the deep laser the vatrectomy and IVT injections over the past 2 yrs, alot of it has helped but i was left blurry, until i started the acupuncture .

my surgeon apologized to me at my last appointment for telling me id never get better!!

in now going back to uni, and COULD maybe in time get my licence back!!!!!

So don't ever give up!!! They told me there was no more they could do for me, so i found other ways in not saying Chinese medicine is the answer it was more a personal choice to try it, i am lucky to say it has definitely worked!!

Have faith, don't give up!
Hope you all get better xXx

 

[Wee-Mojo]

Hi there I'm new to a forum but you all seem pretty good at supporting one another i have been going through treatment for retinopathy for 2 years now, don't you listen to those so called specialist's hun, they told me my sight would never get better and I would have blurred vision for the rest of my life! I have been experiencing low moods and burst out crying at the drop of a hat!

until last month when i went for my check up, i read the letter bored to a driving standard!!!
They took my drivers licence off me last year, i had to give up my nursing degree at uni, i had to stop working and I honestly felt like they took my life away.

so i started going to acupuncture to see if that would help?? I would try anything to get my life back lol

I've done the laser, the deep laser the vatrectomy and IVT injections over the past 2 yrs, alot of it has helped but i was left blurry, until i started the acupuncture .

my surgeon apologized to me at my last appointment for telling me id never get better!!

in now going back to uni, and COULD maybe in time get my licence back!!!!!

So don't ever give up!!! They told me there was no more they could do for me, so i found other ways in not saying Chinese medicine is the answer it was more a personal choice to try it, i am lucky to say it has definitely worked!!

Have faith, don't give up!
Hope you all get better xXx

 

[Wee-Mojo]

Sorry i must have sent that twice, my apologies xXx

 

[toffski]

Hi all,
I don't usually post in forums or talk about my diabetes and its many complications BUT having read the topic here I feel that perhaps my experience with diabetes and advanced retinopathy might help here.

Ive been T1 diabetic since 1979 - diagnosed at 10 when injections were taken once a day with a huge glass and metal syringe. My legs still have the scars..

Anyway, I also have a sister who was diagnosed before I was. In terms of complications I was diagnosed with retinopathy some 10 years ago. I was at the time a smoker (I know!! its bad) I was also kinda carefree with my lifestyle. Lots of partying,late nights, motorbike rider, snowboarder etc. I think you get the idea - my diabetes has firstly never held me back and secondly, never been an excuse.

My retinopathy was reasonably advanced at the time it was picked up and I started laser treatment almost immediately . Laser treatment is not pleasant - BUT its also not that bad. Yes, its uncomfortable at the time but its a procedure that will protect your sight for as long as possible. The specialists who do this treatment know exactly what they are up against, my doctor was a fabulous man. He never sugar coated anything, I would always rather hear the truth regardless of how bad, but I also wanted to know what else I could do to help myself.

Now, my retinopathy has been there for 10 years, I got to the point where there was very little space left for laser work and I had had two major bleeds. My specialist (at Heartlands hospital in Birmingham) recommended I start a course of Fenofibrate tablets. This has been shown to reduce the progression of retinopathy - speak to your specialists about it. I should point out here that apart from reading glasses, my eyesight has managed to stay perfect. ButIi was told on many occasions that I could go blind overnight, I could lose my vision in my left eye within a year etc etc. You specialist will tell you this not to scare you. but to prepare you for it.

In my case, what it did for me was motivate me to:
a) change my ways
b) embrace life and start chasing the things I wanted to do!

So I stopped smoking and moved to the Alps figuring if I have 12 months of eyesight left I want to spend it hurtling down mountains rather that in an out-patients clinic in city hospital.

For me, having a positive approach to these things is a good starting point. You know those awful posters with life affirming statements on them such as "one life - live it" - that kinda thing. Whatever you do, approach your illness with the attitude that its a minor niggle that gets in the way of you actually living.

Ive had my fair share of scares with licenses, healthcare, treatments etc but in reality you get through them. You really have no choice. But my point in all of this is that nothing is set in stone. There are a few non-variables like you have Diabetes and you have complications but you also have the power to change things as you go forward. A better diet, more excersise will both help.

Oh by the way, I now live in Switzerland and my retinopathy specialist back in the UK advised me that this was possibly the best move I could make. He was right. I now see an eye specialist here once a year - my HbA1c has never been lower. I'm 44 going on 25.

Chris

 

[Wee-Mojo]

I couldn't agree more with that post Chris just put up.

Positive Mental Attitude is key!!

 

[noblehead]

I think it's 8 years since I last had treatment for diabetic retinopathy. It's a horrible condition but the treatment options available do have a high success rate, controlling your bg ( but not suddenly if control has been poor) blood pressure, cholesterol together with eating a healthy diet will all give you the best possible chance to delay or halt the progression, although it's extremely hard to do so I do agree that trying to keep a positive attitude throughout is important too.

 

[sw11bloke]

Hopefully this article below will help you:

I hope this story can give hope to those who suffer with complications:
(This is not about me. I found this online and thought Id share)

Are you a scientific anomaly like me? Have you or someone you know reversed the complications associated with diabetes? Did you suffer microvascular and macrovascular damage during the “growing pains” of coming to terms with having no choice but to live your life with diabetes? Then, did you turn around and find love and hope, which made you change your life? And after changing it, did you find after several years that you were healing the damage that you had incurred by your own misguided hand?

Well, I did and I am looking for others! I want to encourage people to share their stories in the hope that we can generate sufficient anecdotal information that will demonstrate sufficient cause for a rigorous study to scientifically prove that we can reverse complications associated with diabetes!

I am proud to say that, despite my early years of virtually ignoring my diabetes and sustaining significant microvascular and macrovascular damage, thanks to an improved lifestyle over the past years I am seeing tremendous improvement of the neuropathy in my hands and feet, the retinopathy in my eyes and the nephrology of my kidneys. I’ll say it myself: Wow!

I’ll share some of my story and hope that others will identify with and show me that I am, indeed, not an anomaly.

Headed for an Early Death

I was diagnosed with type 1 diabetes nearly 30 years ago when I was eight. The reasons I chose the paths I did in taking and not taking care of myself, my disease and my life were as diverse and complicated as the causes. A defining moment for me was after awakening from a three-day ketoacidodic coma and hearing the doctors tell me and my parents that I would die by age 40 and by that time I would be blind, with an amputation and quite possibly on dialysis. Needless to say, I did not learn how to live, let alone live well with diabetes. Diabetes was as an intruder in my life and I vehemently despised being destined to such a short, disease-riddled life. So, I did what any 8 year old would do, I rebelled.

The rebellion lasted 20 years. My logic was simple: Most people seek out and do things that are good for them because they want to live long and healthy lives. But since I was going to die a young, horrible death anyway, I chose to search for things that were bad for me. I did them with gusto. Over the years, I picked up every thing from my first greatest taboo love, sugar, to filtered Camel cigarettes to my greatest, most agonizing nemesis, alcohol. Those vices all seemed par for my abbreviated course.

So, the first 20 years of my life with diabetes were spent acting as if I did not have it. I didn’t tell anyone I had it and I never, ever talked about it. I tried to keep my blood sugars high enough that I would never have a low, and high enough to never have to test. At the time, I saw no other reason to “test” my blood sugar except to see if I was actually experiencing another one of those scary lows. So, I always kept my blood sugar high. This made me feel even more a failure every time I tested, hence I didn’t. At one point I had an HBA1c of over 18%.

My Turnaround Allows a Comeback

Today, I am so happy and proud to say that these things are no longer true in my life and that I have come to embrace myself, my life and even my diabetes. I met my life partner 18 years ago and married him four years later. His unconditional love and support made wanting to live a good long life a brand-new reality. I had never wanted to live a long, good, happy life. I knew it was impossible, and yet now I had found hope.

I began to change, slowly. I had learned over the years that any action that needs to be done for the rest of my life must first fit into it. I began to look at myself, my life, and my diabetes in entirely new and nurturing ways. I had finally made a change in my life and sustained it. It felt good. Actually, it felt incredible! So, I chose to make another change, and then another. These changes soon added up and I am now happily living the benefits of my concerted efforts.

With improving my blood sugars, blood lipids and blood pressure, came significant and considerable benefits. My kidney function went from full-blown clinical albumineria to normal function. My feet, which used to be virtual icebergs, now maintain healthy warmth. I had sustained proliferative retinopathy and in 1997 had laser surgery on my eyes to prevent me from progressing to blindness. My ophthalmologist has told me for the past consecutive six years that not only are my eyes not getting worse, they are healing and improving.

I could hardly believe what was happening. I was healing? I went to speak with my endocrinologist, who now calls me “The Diabetes Poster Child.” I asked him how on earth I could have not known that we can reverse diabetes complications. He said, in a nutshell, because not enough people have done what I have done with my life, and since it could not be proven scientifically he could not tell his patients that it is a possibility. I responded that if no one hears it is possible, then no one will know to try.

He continued, telling me there have been cases where they have taken, for example, a kidney from a diabetes donor and placed it in a person without diabetes only to find over time that the organ has returned to normal function. The point is with the right environment the human body can and will heal itself. Now, let’s prove it!


Taken from:

http://www.diabeteshealth.com/read/2008 ... 1#commentssw11bloke

 

[Unbeliever]

@chris, I know where you are coming from Chris but interested that you only mention laser as a treatment. Were you never offered any of the injections available now? These can b slow down any progression and make laser more effective
I know they were not always available everywhere so just wondered if they migh have helped. -or might yet.

 

[dropdeadcjay]

Thanks a lot for your replies people, it's really nice to read some positivity about the complication of diabetes.

I've been getting down lately and in the morning struggling to get out of bed due to low mood. I have my first laser appointments this Wednesday and I'm very scared of it. I just really want to my vision to get better, I tell myself that if this doesn't work there's always a vitrectomy? But I feel like there's not much hope. Like Chris said before, I'm trying to think, well I need to live life to the full while I am alive and do things, but it's hard to stay motivated. I wake up most mornings and it feels like my heart is melted into my stomach, it's very difficult.

I've just been noticing my eyes getting worse, like not being able to read white subtitles on a white background, and this extra glow coming when I look at screens, will this be permanent not?

Another thing to get me down, I just wish I caught this sooner...I worry too now they will take my driving licence from me.

I will try my best to stay positive and live like there is no tomorrow, it's the best plan.

Thanks again for the help people, really appreciate it!

 

[Thundercat]

When I was told I had to have laser treatment it was my worst fear realised. It.is very difficult to be positive sometimes but please try to have faith in youself and your future. I absolutely feared the worst but my 6 week check up showed everything was fine, so good outcomes do happen. You are in my thoughts and prayers.

Sent from the Diabetes Forum App

 

[noblehead]

Another thing to get me down, I just wish I caught this sooner...I worry too now they will take my driving licence from me.

Try not to worry too much. The DVLA will request that your eyes are tested post-surgery and they'll ask that you attend an appointed Opticians so that they can carry out a Field Vision Test to check your peripheral vision, if it's any consolation I've had laser treatment in the past and have a 3 year driving licence.

Hope it all goes well on Wednesday!

 

[Geraldine24]

Hi all i have just read the comments here and i feel i want to tell my story.

I am a type 1 Diabetic since I was 6 ( I am 24 now). Being diagnosed at an early age for me was fine as my parents helped with checking my blood sugar levels and my insulin injections. Being so young i knew that there was something different with me towards other kids. BUT as i grew into my teen years i started to take control myself, i didn't really care much about my diabetes to be honest, I knew i had it but i just completely blocked it out, I ate alot of sweets and chocolate, I used to call myself a chocaholic I also was aware of all the complications that come with diabetes but I thought " IT WILL NEVER HAPPEN TO ME". I smoked tobacco (I don't smoke anymore) liked staying up late and going to party's with my friends. Even though i neglected my diet i always took my insulin and other medications for my diabetes.

In september i noticed a blur in my vision in my left eye, I wasn't too worried so i left it for a few days. It started to annoy me so i made an appointment to see my local eye doctor. He told me I had floaters in my eye due to a bleed. Hearing this I was shocked and afraid. He told me to go to hospital and he wrote up a letter for the eye specialist describing what has happened. I feared that I would go blind. I got to the hospital and seen the eye specialist and was told I need laser. After a week I returned to the hospital for my first session of laser and I was literally shaking from head to toe. I was told that I have Proliferative Retinopathy in both eyes and need scatter laser. The laser procedure lasted half an hour and was not too bad to be honest, I had 1000 burns in my left eye that day and was told ro return in a week for my second session on my right eye. Same as before a week later i got 600 burns in my right eye, they could not do moew as blood was still visible and the laser would not go through the blood.

Everything seemed fine and i honestly thought my right eye was getting better( was told my left eye is worse) and one day after dinner i had a bleed in my right eye which makes it hard to see as there are so many floaters. I am back down Friday for more laser and I just hope the blood clears up so they can go ahead with it.

I am afraid that I will lose my sight but i do try to be strong. It is hard though.

 

[Unbeliever]

Hi Geraldine. I had laser which left bad scarring and burn marks -black on my retina withou helping at all. Then a new consultant was appointed . I was refeerred to him and he old me that if there is too much fluid around the laaser won;t work.

He suggested injections to dry up the bleed before lasering again. Do ask about this. I know they don; offer this treatment everywhere but it may be appropriate for you.
You don;t want to risk damage without any benefit.

 

[Geraldine24]

Thank you for your time. Do you know what the name of the injection is?? I will ask friday when i am down in the clinic and hopefully i will know more