Eye problems

[smithyg17]

Hi everyone

Apologies in advance for this long post.

Just looking for a bit advice and hoping I can put my mind at ease.

Last year around April time, I was referred to the Ophthalmology dept at my local hospital as there was blood vessels in my left eye starting to bleed and form new ones.

I felt really down and worried about this as although my control hasn’t been great (85hba1c) I thought I had started to gain a better control of my diabetes.

I attended my first app in April 2020 and got my 1st laser treatment and the doctor said that I may only need one more session.
I attended my 2nd app and was seen by a different doctor who completed another course of laser treatment and said that I will need more session.

I then attended my 3rd app and was seen by the same doctor as last time who done another course of laser treatment (3rd by this point) and then said that my right eye will now need done.

This got me very worried and more anxious as I was under the impression that my right eye was fine. I questioned the doctor at the time about this and the fact that he kept telling me that I will only need one more session and he said that he will get another doctor to have a look at my next app.

My 4th app comes (approx August 2020) and I am seen by the same doctor who also had another doctor with him having a look at both eyes who agreed that I need more treatment done on my left eye and also my right eye could benefit from getting done

I could not get any treatment done on the 4th app as I drove to the app ans had no one with me to drive me home.

I walked away from the 4th appointment very confused/annoyed/frustrated and even more anxious.

By this point I had my hba1c heckled by my doctor and to my shock and delight this had went down to 55 which was the lowest it has been in years!

I got more appointments sent to me from Ophthalmology which I did not attend due to being worried and confused about the whole treatment and why I was constantly being told that “one more session should do it” and being contradicted each time I went to the following appointment.

Onto this year and my eyes have been fine until last Saturday where I started to see a small line of black dots or one black dot on vision from my left eye.
My eye isn’t sore but constantly seeing this black dot in my line of vision is annoying and adding more worry to my mind.
I have attended my optician appointment today who took pictures of my eyes and showed my a small black patch on my left eye which she said that this will be what I’m seeing.

She has referred me back to the ophthalmologist but she could not say what if this would go away or not or if more treatment will sort the problem out.

I just need to wait in the referral from the ophthalmologist to come through but I’m worried sick now and so scared!
It has really got me down recently as I try so hard to look after myself. I’m worried that this will never go away and my eyes will get worst.

Has anyone experienced anything similar?

Any help or advice would be greatly appreciated!

Thanks

Graeme

 

[Dark Horse]

Sorry to hear about your situation. When the doctor says 'one more treatment should do it', that is an estimate based on what happens with the average patient. Some individuals don't respond as well to treatment as others and may need more treatments. It's not something that can be predicted exactly - at each appointment the doctors have to review the situation and make a fresh decision about whether further treatment is needed.

It's possible that you didn't have enough treatment and that new vessels have grown and are bleeding but you need to attend your ophthalmology appointment and be examined to find out. I would urge you to attend all your appointments and follow the advice of the ophthalmologists - they are the experts and are doing their best to help preserve your sight.

 

[Grant_Vicat]

Hi everyone

Apologies in advance for this long post.

Just looking for a bit advice and hoping I can put my mind at ease.

Last year around April time, I was referred to the Ophthalmology dept at my local hospital as there was blood vessels in my left eye starting to bleed and form new ones.

I felt really down and worried about this as although my control hasn’t been great (85hba1c) I thought I had started to gain a better control of my diabetes.

I attended my first app in April 2020 and got my 1st laser treatment and the doctor said that I may only need one more session.
I attended my 2nd app and was seen by a different doctor who completed another course of laser treatment and said that I will need more session.

I then attended my 3rd app and was seen by the same doctor as last time who done another course of laser treatment (3rd by this point) and then said that my right eye will now need done.

This got me very worried and more anxious as I was under the impression that my right eye was fine. I questioned the doctor at the time about this and the fact that he kept telling me that I will only need one more session and he said that he will get another doctor to have a look at my next app.

My 4th app comes (approx August 2020) and I am seen by the same doctor who also had another doctor with him having a look at both eyes who agreed that I need more treatment done on my left eye and also my right eye could benefit from getting done

I could not get any treatment done on the 4th app as I drove to the app ans had no one with me to drive me home.

I walked away from the 4th appointment very confused/annoyed/frustrated and even more anxious.

By this point I had my hba1c heckled by my doctor and to my shock and delight this had went down to 55 which was the lowest it has been in years!

I got more appointments sent to me from Ophthalmology which I did not attend due to being worried and confused about the whole treatment and why I was constantly being told that “one more session should do it” and being contradicted each time I went to the following appointment.

Onto this year and my eyes have been fine until last Saturday where I started to see a small line of black dots or one black dot on vision from my left eye.
My eye isn’t sore but constantly seeing this black dot in my line of vision is annoying and adding more worry to my mind.
I have attended my optician appointment today who took pictures of my eyes and showed my a small black patch on my left eye which she said that this will be what I’m seeing.

She has referred me back to the ophthalmologist but she could not say what if this would go away or not or if more treatment will sort the problem out.

I just need to wait in the referral from the ophthalmologist to come through but I’m worried sick now and so scared!
It has really got me down recently as I try so hard to look after myself. I’m worried that this will never go away and my eyes will get worst.

Has anyone experienced anything similar?

Any help or advice would be greatly appreciated!

Thanks

Graeme

Hi Graeme, you won't get better advice than that of @Dark Horse . I was exatly in your shoes from 1979-1983. Had both eyes lasered several times. Good control stopped further rot, but I am also aware that any extreme aerobic exercise could cause bleeds even now. Some years ago an ophthalmologist, on looking at both my eyes, said "Blimey, it's like looking at a street map of London!" I only need reading glasses even now. There is light at the end of the tunnel. Very good luck!

 

[Helen40]

I was diagnosed with prolific diabetic retinopathy in 2019, I had 2 lots of laser in each eye and have been getting eye I jections every 8 weeks since then, my swelling is gone and I gave a review in 2 weeks to decide whether I need more injections. I have black dots and squiggly lines in my eue and my consultant thinks a vitreoctamy may further benefit this to clear out the 'gunk' and remove the abnormal vessels that keep bleeding. Any more laser would affect my ability to drive. Please keep all your spots, so much can be done to slow or even halt further progression. Treatments today are pretty awesome too! I'm still scared for the future and frustrated when I struggle with computer screens and reading subtitles is pretty impossible but I'm grateful for the sight I have and know this is down to the excellent treatment and care I've received from my eye clinic. Keep in touch with us on updates!

 

[smithyg17]

Thank you to everyone so far for the replies and encouragement
I will be sticking to my appointments when I get them from now on.
My biggest fear is losing my sight and also losing the ability to be able to drive as I depend on being able to drive the car to get to work and go to the gym and play football.

@Helen40 That sound’s scary! What does the injections do for eyes? Do you know if the vitreoctamy surgery will help improve your sight if you were to get that done?

 

[Helen40]

Thank you to everyone so far for the replies and encouragement
I will be sticking to my appointments when I get them from now on.
My biggest fear is losing my sight and also losing the ability to be able to drive as I depend on being able to drive the car to get to work and go to the gym and play football.

@Helen40 That sound’s scary! What does the injections do for eyes? Do you know if the vitreoctamy surgery will help improve your sight if you were to get that done?

Hello! The Injections are not something I look forward to, but they have helped tremendously, they help to stop the abnormal vessels from leaking, my eyes were very swollen and the swelling has now all gone and flattened out, they're called anti vegf which reduces the substance vegf we all have from over producing these abnormal vessels 'tryibg' to fix our eyes. My next appt is on the 26th to find out about the surgery, I'll let you know. From a lot of support on here I've heard many positive things about it, one lady eho had numerous prolonged bleeds regained her licence after having the victrectomy. I have so much gunk floating around my eyes I'm hoping that scooping that away and taking away the naughty vessels will help me too!!

 

[Helen40]

Hello! The Injections are not something I look forward to, but they have helped tremendously, they help to stop the abnormal vessels from leaking, my eyes were very swollen and the swelling has now all gone and flattened out, they're called anti vegf which reduces the substance vegf we all have from over producing these abnormal vessels 'tryibg' to fix our eyes. My next appt is on the 26th to find out about the surgery, I'll let you know. From a lot of support on here I've heard many positive things about it, one lady eho had numerous prolonged bleeds regained her licence after having the victrectomy. I have so much gunk floating around my eyes I'm hoping that scooping that away and taking away the naughty vessels will help me too!!

1 positive thing I keep in my head, my consultant said to me that he has not had a diabetic patient totally lose their sight in over 10 years, good words to remember when I'm low about it all!

 

[Lynneco]

Hi Graeme. You have my sympathies on this. I have been going to the excellent eye treatment centre at my local hospital for similar problems for the past 9 years. I have had frightening experiences too - but they are less scary when you ask questions and ask them to explain things to you and go through scans and eye pictures. Ask to see them and have them explained. To date I have had both cataracts removed, several vitrectomies - sounds scarier than it is - numerous injections into the eye (no it doesn't hurt) and laser sessions. My eyes have improved tremendously and my sight is good. I have also made good friends with several of the nurses and doctors. Everybody has been so helpful and encouraging. I have just been discharged from one clinic completely, have a phone follow-up next year and am left with one clinic ongoing.

I know how frightening it is to have bleeds, black squiggles which expand and then cloud your vision. Sometimes they spontaneously resolve after around a month. At other times they need to be removed. These will eventually stop. Vitrectomy replaces the jelly in the eye which is pulling and degrading as you get older. All I can say is to hang in there. You are not alone - it just feels like ti at times. Always take someone with you to drive you home, especially if you're not sure what you're having done. I wish you good luck and success.

 

[Dexterdobe]

Thank you to everyone so far for the replies and encouragement
I will be sticking to my appointments when I get them from now on.
My biggest fear is losing my sight and also losing the ability to be able to drive as I depend on being able to drive the car to get to work and go to the gym and play football.

@Helen40 That sound’s scary! What does the injections do for eyes? Do you know if the vitreoctamy surgery will help improve your sight if you were to get that done?

I have had similar problems in one eye only. I've had 24 injections and two laser treatments. It's taken three four years, but my vision is now stable. I've been lucky as I even my bad eye is good enough for me to drive.
Treatment for this family of eye problems is improving all the time. Injections are effective and generally cause less damage to the retina than lasers. Eye drops are being developed which will do away with the need for injections and remarkable new treatments are in the early stage of development. By the way, anyone reading this who has rejected eye injections because the whole idea sounds terrifying, take note. It is nowhere near as bad as it sounds. to be honest I would rather have an eye injection than the one they give you to numb teeth at the dentist.

 

[Lynneco]

I have had similar problems in one eye only. I've had 24 injections and two laser treatments. It's taken three four years, but my vision is now stable. I've been lucky as I even my bad eye is good enough for me to drive.
Treatment for this family of eye problems is improving all the time. Injections are effective and generally cause less damage to the retina than lasers. Eye drops are being developed which will do away with the need for injections and remarkable new treatments are in the early stage of development. By the way, anyone reading this who has rejected eye injections because the whole idea sounds terrifying, take note. It is nowhere near as bad as it sounds. to be honest I would rather have an eye injection than the one they give you to numb teeth at the dentist.

 

[Lynneco]

Well said! The idea is far worse than. the reality. For the first few injections I had a lovely nurse to hold my hand and reassure me.

 

[smithyg17]

I really appreciate everyone’s input on this. Reading everyone’s experiences has helped but my worry at ease a bit.

I am due to go back to to start laser treatment on my right eye tomorrow. Still feeling very anxious about this.
The biggest fear for me about getting the treatment done is losing my drivers licence as I depend on this a lot and having this taken away will take a lot of my independence away from me.
Has anyone who has had laser treatment on their eyes lost their licence due to this or had any problems keeping their licence and if so, how long after the treatment did the problems with the drivers licence start?

Many thanks again guys!

 

[Hopeful34]

Hope all goes well for you tomorrow @smithyg17. I was advised to always stress at every appointment how important it is to keep your licence, as it's "sometimes" possible for them to laser in a slightly different place, that will give you the best chance of keeping your licence. I know it's not always possible though, and have had the same anxiety as you every time I've had it done.

 

[Scott Aheadjoy]

Bok! Everyone, I just had my first VEGF injection and it wasn't painful at all, just a little pressure and a lot of blurred vision. I am also fearing losing my drivers license and job. I travel and live the nomad life will working. I am going to wait as long as possible, they will have to force me to change state license. Here is my experience to help ease the anxiety you may be having.

I am 58 year old male, single now, my stats are as follows: I’m 6foot, 1830lbs, 30% body fat, waist (belly not pants) 40 inches, wear corrective lenses 20/20 and now vision is 20/40, former cyclist, people don't believe my waist is that big because I still look fit. I am also starting a new life in a different state in America. I thought I would post here, to let everyone know, what it’s like having diabetic macular degeneration in both eyes. I just have taken my first VEGF treatments and this is what I have experienced. For the past 3 years I have been traveling for work and haven’t been eating as clean as before, basically, I ate take out and it was hard to keep my blood sugar under control. I was averaging about 120 units of novolog a day and 50 units of Lantus a day and my A1c was around 8.7. I was receiving my care at the VA hospital in Texas and they were worthless as **** on tomcats, so I moved to Wisconsin (bought a house) and the veterans hospitals here are awesome. My vision started blurring July 2021 and it was hard to read with my bifocals and for lack of better words, had a feeling of pressure in my left eye. So I went into the ER and they referred me to an eye specialist who immediately performed VEGF treatment on both eyes because of the fluid behind the macula. I did not have any proliferation to the retina. Injections first performed on 3 Aug 2021. Of course they dilated my eyes and the VEGF also blurred my vision beyond what dilation does. I am lucky I walked to the appointment because I would not have been able to drive. It took about 24 hours for my vision to return to baseline pre VEGF treatment.

It has been a week now and during that week I ran through a lot of emotions and I have been keeping a tight control of my blood sugar readings. They average around 110mg/dl a day. Between 0600 and 1800 hours I check my sugar every two hours. Same amount of lantus and now under 40 units a day of novolog. Not being able to see, for that one day, was very scary. I was having panic attacks and a lot of anxiety. When you can not see, you don’t get to enjoy the simple things in life. So I ran to the ER to get something for anxiety and they gave me Hydroxyzine which makes me very sleepy. For the past two nights I have been waking up at 4am (my normal time up) with low blood sugar for some reason. This morning I woke up at 4am as usual, stood up and suddenly started to sweat, shake and in a panic. I ate peanut butter and jelly, more than I should have. Then 15 minutes later my blood sugar was 43mg/dl, went back to bed, got up at 6am and my blood sugar was 407. That is to be expected because when you are as low as 20mg/dl you are not thinking clearly and I was in survival mode. I stopped taking the hydroxyzine at bedtime. I do not eat past 6pm otherwise my blood sugars are 300mg/dl even with the insulin on board. In a later post I will explain how I perform a tight control on blood sugar levels. So now I troll the internet seeking answers to my VEGF treatment and IF my vision will return back to 20/20 (with glasses) and how long it will take. My second VEGF treatment will be 2 Sept 2021. Basically, seeking other’s experience with their VEGF treatments. A week later I don’t feel the constant pressure on the left eye like before. Also, I started a rigorous exercise routine, healthier eating routine, back to the Mother Earth days of the 70s. If you haven’t heard of it, it was a magazine that us hippies read in the 70s. This stressful time will pass and It’s all about keeping busy, so I don’t stress out and constantly worry about the situation. Oh! I'm originally from Burwell area. Sorry about the long post. Once I am allowed to post a blog I will be chatting it up regularly.

 

[Howell_595]

@smithyg17 sorry to hear about your eye issues. I can relate as I originally had a case of severe floaters and a blur in the central vision of my left eye which required laser treatment. The floaters came on from anything pressure related like lifting something heavy to stressful exercise.

The laser treatment sorted some floaters but didn't resolve the blur as my eye had a bulge in the retina which was causing the blurliness. I eventually have to have injections in the eye which calmed the bulge and reduced it which resulted in the blurriness disappearing. I had around 10 injections but they were painless but a little weird but you get used to it after a while.
I was worried about my driver's licence too, not because I rely off it for work but alot for pleasure as I'm in local car groups and i just love driving so I was concerned as driving is a bit of freedom for me.
I had to notify the DVLA but I had no changes in my driver's licence under the treatment and still owned it which allowed me to drive still. It was background retinopathy so driving in the day is fine but at night time it can get a bit glary.
I still get the floaters (Which I think looks a bit like seaweed washing in the current of the sea )but Ive become so used to it now but it's just part of my life.

Try not to let it get you down and I know it's worrying but there are plenty of people on here who can offer help and support if needed.

 

[smithyg17]

@smithyg17 sorry to hear about your eye issues. I can relate as I originally had a case of severe floaters and a blur in the central vision of my left eye which required laser treatment. The floaters came on from anything pressure related like lifting something heavy to stressful exercise.

The laser treatment sorted some floaters but didn't resolve the blur as my eye had a bulge in the retina which was causing the blurliness. I eventually have to have injections in the eye which calmed the bulge and reduced it which resulted in the blurriness disappearing. I had around 10 injections but they were painless but a little weird but you get used to it after a while.
I was worried about my driver's licence too, not because I rely off it for work but alot for pleasure as I'm in local car groups and i just love driving so I was concerned as driving is a bit of freedom for me.
I had to notify the DVLA but I had no changes in my driver's licence under the treatment and still owned it which allowed me to drive still. It was background retinopathy so driving in the day is fine but at night time it can get a bit glary.
I still get the floaters (Which I think looks a bit like seaweed washing in the current of the sea )but Ive become so used to it now but it's just part of my life.

Try not to let it get you down and I know it's worrying but there are plenty of people on here who can offer help and support if needed.

Thank you
Injections sound terrible but I’m glad that it has helped your vision.

How long ago did you start getting laser treatment done if you don’t mind me asking?
The floaters are nightmare. I’m glad mine have gone (touch wood!) I really feel for you having to put up with them everyday.

 

[smithyg17]

Just an update on my journey with laser treatment.

I attended my last appointment about 3 weeks ago and had a chat with the doctor who was doing the laser treatment.
I made him aware that I was really worried about losing my drivers licence. His response was that if I didn’t get the laser treatment then they will struggle to save the eye and I will end up going blind. He also said that it will be around about 8/10 years time before the DVLA may restrict me from driving.

I agreed to start treatment on my right eye as my primary concern is my vision.
He done 2000 lasers in my last appointment and said that he would refer me back to the doctor for her to make the decision on wether I need another session or not.

Fingers crossed that is it!