Advice/experiences please? Re retinotherapy operations

[Concerned about a friend]

I use a forum for myself for other reasons. I work with a lovely colleague who has no experience of forums and I so I said I could get a post of her concerns on here as forums are often full of lovely people who all have their own experiences to share. So this is written by my colleague her husband......

"He was diagnosed with Type 2 Diabetes 15 years ago and about 7 years ago with diabetic retinopathy. Had Nemours laser treatments since on both yes.

In August last year was diagnosed with retinal detachment on right eye and offered vitrectomy surgery to save vision. After 8 weeks when gas bubble disappeared the retina detached again, then went for the emergency operation. After second operation they sealed the eye with oil. In January had a third operation to remove the oil and remove scar tissue to flatten the retina again. All was sealed with gas hoping after gas disappears retina will stay in place

Now 8 weeks later the gas bubble nearly gone but retina is wanting to lift up again.

After recent check up on left (other) eye it seems that there is a similar issue starts there. In the middle part of retina there is pulling and little amount of liquid is going under. Still waiting on a treatment plan and we are very scared he might lose vision in both eyes"

Do any of you have any experience/knowledge of the same and any suggestions to offer please.

Thank you for reading and I personally, wish you all well.

 

[Toucan]

Hello,
Thank you for posting the message on behalf of your friend.
It sounds like a very distressing situation for your friend and her husband. I hope that he is getting good medical care.

I am not sure if there is anyone on the forum that has experience of this situation, but this message will be read by many, and if anyone can help, I'm sure that they will.

 

[Josh DUK]

I use a forum for myself for other reasons. I work with a lovely colleague who has no experience of forums and I so I said I could get a post of her concerns on here as forums are often full of lovely people who all have their own experiences to share. So this is written by my colleague her husband......

"He was diagnosed with Type 2 Diabetes 15 years ago and about 7 years ago with diabetic retinopathy. Had Nemours laser treatments since on both yes.

In August last year was diagnosed with retinal detachment on right eye and offered vitrectomy surgery to save vision. After 8 weeks when gas bubble disappeared the retina detached again, then went for the emergency operation. After second operation they sealed the eye with oil. In January had a third operation to remove the oil and remove scar tissue to flatten the retina again. All was sealed with gas hoping after gas disappears retina will stay in place

Now 8 weeks later the gas bubble nearly gone but retina is wanting to lift up again.

After recent check up on left (other) eye it seems that there is a similar issue starts there. In the middle part of retina there is pulling and little amount of liquid is going under. Still waiting on a treatment plan and we are very scared he might lose vision in both eyes"

Do any of you have any experience/knowledge of the same and any suggestions to offer please.

Thank you for reading and I personally, wish you all well.

Hello Concerned about a friend,

I would like to thank you for joining the Diabetes UK support forum. I am incredibly sorry to hear about your friend's husbands diabetic retinopathy. I can only imagine how difficult it must of been for you and your family, especially after so many procedures. I know other people in our community will share their advice, but it the meantime, your friend may find it helpful to speak to our helpline advisers. You can reach us at 0345 123 2399.

 

[bakebeans]

Hi my dad had a detached retina a couple of years ago. He had a gas bubble and also a silicone band fitted to help stop it happening again. We were very lucky that one of the top surgeons in the country did his operation because of how tricky it was . He hadn’t told us he couldn’t see for 3 days thinking it would get better . He was very sore for about a week after and we had lots of hospital trips for 6 months to check it he also had to have another operation because some of the packing had got caught up on the pupil so it couldn’t close to react to light. He still has some problems with this but wears dark glasses if it a bright day. The did some laser surgery on the last appointment but I think that was more for a year instead of the detachment
I really hope all goes well for your friends husband

 

[Flower]

Hello Concerned about a friend and welcome🙂

It is an incredibly, frightening and distressing time living with serious eye problems.

I've been through all the the same procedures, laser, vitrectomies in both eyes, retinal tear repair, scar tissue removal to flatten my retina, cryotherapy where the damaged parts of the retina are frozen etc. The main aim is to achieve stable vision- as much as is possible -and the surgeons will keep trying to do that. Sometimes I had to wait a while between procedures to give time for surgeries to settle and for blood to clear from my eyes so that the result of the surgery could be assessed. There will be ups and downs through the treatment with such a sensitive fragile thing as the retina but however hard it is he needs to remain hopeful.

How is your friends blood glucose control and also blood pressure. They need to be as good and as stable as possible. The fragile vessels in the retina are subject to blood pressure/blood glucose changes and if it isn't controlled retinal bleeds can occur. Having a vitrecromy as far as I can recall actually reduced the chance of retinal pulls/tears as the eye ball jelly is removed and the oil/saline liquid that replaces the jelly doen't pull on the retina.

It is really hard as an onlooker/carer/partner to deal with the overwhelmigly frightening situation but equally as the patient I couldn't look away from the damage and sight loss in front of me. I couldn't think of something different or distract myself as I had no option but to look through the blood and fog in front of me. Things have improved for me - not the best but relatively speaking - losing my driving licence, not being able to see colours etc is a small price for having some stable vision that lets me live independently.

My advice is to do all that the surgeons advise, get a good control on your blood sugar and blood pressure, be very patient it doesn't repair quickly, don't panic if you are told they'll be a wait before any further surgery (obviously apart from emergency retinal surgery), get some audible books to keep you occupied and hope for the very best. There are amazing surgeons and a lot of good outcomes. Make contact with a local sight charity if possible they have excellent advice and resources, there’s usually contacts and posters at the retina clinic.

I find this site excellent for explaining complications and procedures http://www.diabeticretinopathy.org.uk/vitreous_hemorrhage.html

I wish you all well 🙂

 

[everydayupsanddowns]

Welcome to the forum @Concerned about a friend

Wishing your colleague’s husband every success with his eye treatment.

Has he been able to make gradual changes to his way of eating to improve his BG management since his eye problems began? Reducing the amount of carbohydrate (not just sugar) in his diet may make his diabetes easier to manage, depending on what medications he is taking. It is wise not to make drastic changes too quickly, but a gradual shift towards a more ‘BG friendly’ low-spike way of eating will make home feel a lot better and will help protect his eye health long-term.