new member looking for advice

Hi all thank you for reading

I went for a routine eye test today as I had a couple of scary instances this week.

First one I was watching tv ,hubby had subtitles on as he’s a bit deaf and I’m noise sensitive so he knows not to have it loud,friendly compromise lol, anyway suddenly I lost the end of the subtitles so couldn’t read I had floaters which I’ve had before and this time it was different I couldn’t see much at all beyond wavy lines and no side vision.

Couple of days later I’m in Waitrose doing a food shop and all of a sudden same thing everything’s just distorted and I can’t see much but wavy things and floaters and I’m absolutely freaking out.

I was lucky enough to get an online appointment when I got home so toddled off to specsavers for a check up/eye test.. I explained I’d had a severe head injury five years previous so did my best to get regular eye tastes and Oct scans as I had some damage to the lef5 side of temple and ey/ face plus my mother was registered blind due to detached retinas and had cataracts at a very young age so I’ve always been aware how sensitive and important our eyes are..

Anyway had my scan and test done by a very nice young lady and she informed me I had a macular hole in my left eye area, I said I thought it was my right eye that was playing up but she said no it’s actually quite healthy looking it’s the left eye where I’d had the injury to my head face eye.she showed me the scan and the hole looked huge very scary looking.

She said I definately would need surgery and did a letter to my gp advising a referral to eye hospital. She said it’s not treated as an urgent referral so batted the ball back to my gps , said she’d no idea how long referral would take,I’m in the Northamptonshire area

I’m feeling a bit scared right now it’s just another health complication I have to deal with on top of so many other things,sorry to winge. .. Any advice please anyone??

[Koalajane]

hi, I believe the operation you will have is a vitrectomy. I had one of these ops to remove a piece of cataract from the back of my eye. It was done as day surgery and took about an hour. It did not hurt at all. I hope your op happens fairly soon.

[Hidden in reply to Koalajane]

thanks so much for replying and I’m pleased your doing well x

[Blink182_joel]

Personally I would go private. Luckily I’m able to have treatment in Poland, due to partner. I have had a macular issue since 2020. Referral time is awful. It’s your eye sight, don’t let it get worse by waiting for NHS. It took me 48 weeks to get seen and paired with a consultant. Wait times are considerably worse now. Treatment options were poor for my condition, so just decided to private in Poland. It is worth the money if you can possibly afford it.

[Hidden in reply to Blink182_joel]

hi there thank you for your reply im afraid that’s a no go for me I costed it at 6k that’s nearly all my annual state pension lol. I know people who do return to Poland for their health care now so I’m happy for you but sadly its not an option I have,I’m already paying to have my b12 ampoules sent from Germany and even that’s getting difficult. The joys of old age are smacking me with a vengeance lol. Many thanks x

[Cockerspadge]

Hi, I am so sorry to hear about your problem. I was diagnosed with a macular hole in 2015. Consultant said it was too small & would need to get worse before I could be referred for treatment. He also said if I was referred prematurely, he would get into trouble so it was treated as non urgent. Eventually I got the referral & was told two things by a specialist RS.…

a) I didn’t have a macular hole (it was a misdiagnosis, I had Cystoid macular Edema)

b) no way should my referral have been delayed, treatment should be carried out asap,

Afterwards, I discussed my experience with my GP who said I should have asked for a 2nd opinion when the macular hole was first diagnosed & treatment delayed, so that would be my advice to you. Good luck x

[Hidden in reply to Cockerspadge]

so sorry to hear that but not surprised at the lack of care..I had this brain injury 5 years ago and my jaw and left eye area were pretty smashed up ,I’ve complained numerous times about the pain in the eye and at first the eye consultant I saw then said he thought it was a fistula from the injury and arranged an mri scan he said in a phone call to me after the scan no it wasn’t what he thought and he just dropped me back to my gp.

I’ve had an oct scan with a variety of opticians one said two years ago I had a bit of a dent that she would discuss with a colleague and get back to me if there was any need for further referral,she didn’t so I assumed all was ok,I’ve had a further two scans ,previous one just last year nothing reported but this one I was shocked when she showed me the hole it looked huge..how can they miss this I’m shocked.What is a consultant R/S please ?

I phoned spire today to get a cost for a consultant which wasn’t too bad,my waiting lists are between 12-31 weeks for consult on nhs so I’m thinking I could pay that part and get seen sooner but then what would the nhs work on that report or just ignore it and make me go through the nhs waiting hoops I wonder..

Many thanks take care x

[Cockerspadge]

What a terrible time you’ve had. You must be not only very worried but very frustrated too

R S means Retinal Surgeon.

I’ve never paid private but my understanding is, is that it’s the same consultants you would be seeing, but you’d be seen quicker & they would use the reports & tests you’d paid for. Is there any opportunity for you to check on waiting times at different hospitals which you might be able to travel to?

Just a thought… is there any chance you could attend an eye emergency walk in clinic? I have regular appointments but twice now (between appts) I’ve felt there were issues with my sight & attended the walk in clinic. Not only have I been able to see someone the same day, I was able to ask questions & was seen by a specialist within a week or so.

[Hidden in reply to Cockerspadge]

thank you so much I’ll have a look at that now good suggestions. Just phoned gp they have the referral from optician but she said it’d be Friday before gp can look at it then I’m guessing it’ll be the usual delays trying to get them to act on it, they are terrible here and as it’s classed as not an urgent referral I don’t hold out much hope of any speedy action bad isn’t it. I’ll check what options I have re waiting times too.many thanks again. X

[marypw]

I had surgery for a macular hole in November - it is a very quick surgery and easier than the dentist! (And I am squeamish about eyes). All healed up now and just getting some new glasses. The surgeon also did cataract surgery as well, as a cataract normally develops within a year of the vitrectomy.

You do have to be ‘face down’ for a week after surgery - I hired a special chair, which was really comfortable and I could watch TV, snooze etc. The company I used was Face Down support, so do investigate that.

I was lucky and got my surgery privately, but if you use the NHS, do hassle them for a speedy appointment, cancellations etc! Good luck.

[Hidden]

thank you Mary I’m so pleased for you.I’ll check that face down now well done stay well x

[Carol_MacularSociety Partner]

Dear MrPeaccock,

Please find some useful information on macular holes and the vitrectomy procedure

macularsociety.org/macular-...

macularsociety.org/support/...

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternatively, you can contact us via: [e-mail]

Kind regards,

Carol

Advice and Information Service

[Hidden in reply to Carol_MacularSociety]

Hi Carol thanks so much for the links they were very interesting. It made me wonder if my mum actually had macular disease before she was registered blind.she had an awful time from a very early age with cataracts and then detached retinas and could see very little as the years went on.I’ve no way of knowing now as she’s passed but it did always make me scared as a youngster and like her I used to have lovely eyes now they’re just red,bloodshot and tired slits I hate them now but I was fine until that dratted head/face / eye injury.

I have joined the macular society now so thank you for that opportunity to learn more. Take care x