Hello from an oldie newbie

[Jaineyq]

Hi everyone

A little bit about me and why I'm now looking for support again.

I'm 52 next Sunday. When I was about 29 I was diagnosed with PIC by Mr Kyle at Walton Hospital. It had started with flashing lights in the left eye peripheral. Not worrying, just distracting. The diagnosis was almost accidental as, at first, they thought it was sunbathing to do with the carotid artery until one doctor suggested I see Mr Kyle. It was rare. I caused a huge amount of interest and each visit would last about five hours as everyone connected to the eye dept had to "have a look".

I was told there was no treatment available and ask they could do was to watch for changes. Over the next couple of years the PIC moved over; the majority of my peripheral vision returned but my central was lost. As doctors realised that there was nothing they could do I was soon seen by the junior associates and eventually told that no more could be done. I was never discharged though.

Fast forward to now then. I now live in Wales, my PIC hasn't really changed, my sight is stable BUT I was told last week that I have cataracts, albeit at their beginning, in BOTH eyes AND I've done sort of haemorrhage which could be the PIC reigniting or retinal detachment (🙈)

I was seen by my optician last Thursday. I mentioned an increase in floaters and new flashing lights. She rang for an emergency appointment there and then. I've yet to see anyone!!!

[Jaineyq]

Apologies! There are some errors in my post and I don't seem to be able to edit it. Hope you can all read it ok?

[thom3patty]

Hope all turns out well keep us updated 🙏

[Hidden]

Hi, I think they have 2 weeks to get you seen under such a referral. I would have thought they'd have given you a date at least. I would chase it up .

If you get nowhere or if things worsen go to a&e, they will have an on call eye Dr.

Best of luck going forward.

[Jaineyq in reply to Hidden]

Thanks. The opticians are 'on it' so I should hear soon. Obviously my interpretation of "emergency" is slightly different to that of the NHS 🤔

[Macular_1]

Hello Jaineyq,

If you were referred last Thursday by your optometrist at your optician, the hospital do have 14 days as eyesright says.

That said, if you haven't hear anything by Thursday this week, I would give the eye unit at the hospital you have been referred to a call to ensure that they have got the referral.

Please see the following link to the Macular Society's 'Care Guide for Wet AMD' as this lays out the timescales and what should happen. I know you have PIC, but it should still be the same sort of timescale;

macularsociety.org/sites/de...

If you are concerned, you could 'present' at the hospital's eye department A&E.

If you would like to discuss further with our helpline, please call 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Macular Society

[Jaineyq in reply to Macular_1]

Thank you. The opticians have chased the hospital and they said they had received the referral letter. They are just waiting for a consultant to have a look over it.

I'm sure it'll be fine...

[cwc123]

Hi Janieyq

First of all Happy Birthday for next week.

I am 52 also and have a diagnosis of possible PIC. I have had CNV in one eye which may be a symptom of PIC or could be myopic MD.

Have you seen this?

uhb.nhs.uk/punctate-inner-c...

There is an expert in Birmingham, Mr Denniston who specialises in PIC. I went to see him a couple of weeks ago and he was fantastic. Very patient, answered all my questions and was very reassuring. I started the process by emailing his secretary, Jacqui. Her email address is on the website.

I am now having shared care with him and my consultant in Yorkshire.

As far as I know there may be treatment if you have an active episode of PIC.

If you have not seen Mr Denniston before I recommend you contact his secretary.

[Jaineyq in reply to cwc123]

I hadn't, no. However when I was first presenting I was told there was no treatment available. I fear it is now too late as even if the scarring - which I presume is CNV - was to be removed, the damage is too great that my sight wouldn't return.

At least I know that if it ever moved to my good eye it looks like I'd stand a chance of it being stopped.

Good luck with your treatment 😊

[cwc123 in reply to Jaineyq]

.The sight in my right eye is very poor due to the scarring. However as I am now registered with Mr Denniston I have a direct number to contact him should i get any further symptoms either in that eye or my left eye. Prompt steroid treatment can prevent damage from PIC.