Macular Holes, Dry Eyes, Retrobulbar Optic Neuritis at 18 Years Old

[NicoleCatto]

Hi All

I am new here... looking for some insight on my ongoing problems, found at the age of 14. Here is my story... ps, the photo is 4 years ago when the macular holes where first found, it has got worse but i do not have an up to date photo and thought some people may find it interesting!

When I was 14 Years old, I went for my general check up at the eye clinic. It was found that I had what was thought to be 'blisters' on my Macular. Went to my GP for a referral as advised, turns out that I had Macular Holes, not blisters. I haven't done anything of the sort that could cause this to happen.

No history of diabetes etc too...

Electrodiagnostics - normal

MRI - normal

after about 2 years it was picked up that my right eye has developed a macular hole too... both stable and not rapidly getting worse

after the second eye having this problem was picked up, this is where i feel things started to go rapidly downhill...

one morning i was sitting on my bed and this sharp stabbing and shooting pain in my left eye had started to overwhelm me. i was in agony, crying and trying to get this pain to stop. no prev issues with migraines or this pain was known to me.

the pain stopped around 4 hours later.

ever since that day i have always had a constant sharp pain through and in my eyeball, strength can vary day to day.

Cluster Headache maybe?

I had found out that on several occasions when i have seen the Ophthalmologist, that i had optic neuritis. - i read online optic neuritis shouldn't be persistent... so why am i getting it so much? is this the pain in my eye?

then i done some more research and found out that MS is also a reason that optic neuritis could be happening so often, due to the issues with this and my bladder issues of not knowing when i need to urinate until last minute, could also be a sign, i have constant numbness and pins and needles in my fingertips, arms, toes, feet and legs. could this all be linked?

last year i went to the opticians to be told that the discs in my eyes are swollen, and that my pupils aren't dilating the same as one another. sent to the AE dept. for observing. i was told and discharged with them advising me that i have a migraine... doesn't make sense if you ask me...

I went to the AE dept recently as my eyes were extremely uncomfortable, i couldn't bare the pain and was diagnosed with dry eyes... could this also be linked with the above?

i have began to notice that i am getting black areas in my vision and most days it feels like i am looking through water.

I only just found out that you can have Macular hole surgery, should i do it??

[jjjeka]

Hi Nicole, my heart is with you as I read your post. I do not know about your case, but I am praying and claiming that you will be ok, in the mighty name of Jesus Christ (If you're a christian). Anyway, I am 23 yo had a problem with my macula due to a severe myopia. I hope any one who knows your story will be of help. God bless you and keep holding on.

[NicoleCatto in reply to jjjeka]

thank you jjjeka

hope you keep well

[tez101]

Hi Nicole, this may be interest to you.

Dr M Greger has an article about MS

nutritionfacts.org/video/tr...

Also you can read about it in Dr McDougall's website

drmcdougall.com/health/educ...

[NicoleCatto in reply to tez101]

thank you

[Hidden]

Nicole Where do you live?

When you were diagnosed with dry eye were you not prescribed drops?

I can't make any informed comment on your condition but it is clear that you need referral to a major Eye Hospital ASAP.

[NicoleCatto in reply to Hidden]

hi Rennatk,

i was told i have dry eyes 2 days ago. drops are working great with the uncomfortable feeling, i attended moorfields in london a few weeks back, they discharged me trying to say it is a migraine, but it clearly isnt ... i dont know how to get the help i need when nobody believes me or looks at the issues i have i guess my age has people thinking i am overreacting!

[Hidden in reply to NicoleCatto]

I am not sure of the specialist eye hospitals around your area. I know that Sheffield Hallam and St Paul's Eye Research Clinic at the Royal Liverpool are both excellent. If you are prepared to travel and can get a referral I would suggest trying for one of those.

[NicoleCatto in reply to Hidden]

thank you

[NicoleCatto in reply to Hidden]

& i live in hertford, hertfordshire

[Hidden]

PS Macular hole surgery is common and generally effective.

[NicoleCatto in reply to Hidden]

i hoped so. but i read online it is only properly effective if it is within 6 months and i have passed that majorly. do you think it will be alright 4 years later if i get it done?

[Hidden in reply to NicoleCatto]

I am afraid I don't know the answer to that. You need to speak to a professional. Techniques are constantly changing and improving so there is a chance it could be done.

[rosyG]

my son's mother-in-law had surgery on both eyes for macular holes and results are excellent- bright sunlight is the only thing that troubles her now.

I agree with what others have said- you need to attend a major eye hospital and also have the numbness etc properly investigated. Keep going to A and E until they refer you if need be

[NicoleCatto in reply to rosyG]

thank you rosy. glad to hear she has had good results! i am annoyed that nobody has told me about macular hole surgery 4 years ago when diagnosed, i could have had this done by now haha!

[rosyG in reply to NicoleCatto]

i hope you can access a good eye hospital where you are- if you are near enough try to go to Moorfields in London

[NicoleCatto in reply to rosyG]

i went to moorfields 2 weeks ago and they tried to tell me that it is a migraine, i tried to explain how it isnt and this is my history but unfortunately the man just wouldnt listen i am online trying to find other good main and really well known i can hopefully go to and get the care i need just hard when my GP says that i am fine and doesnt want to help me with referrals when he doesnt actually know about eyes

[cyprusbaby10]

Hi make an appointment at the London eye hospital for a consultation ,once your condition is diagnosed you can be treated at any other eye hospital .It is a private hospital so treatment there would be expensive.but you would get a correct diagnosis

. I did this as I kept getting different opinions from various doctors.Believe me they can help.

[NicoleCatto in reply to cyprusbaby10]

thank you this i something i am now looking into as i feel pushed from pillar to post s nobody wants to help

[nanapat112]

I have read that if you are worried by symptoms you can ring 111 and get a Dr to talk to you. Call them early in the day as they will call you back,you may be able to ask them on line. It may be bast not to call on a bank holiday. Voluntary Associations will give you very good advice. Good luck.

[NicoleCatto in reply to nanapat112]

will do. thank you!

[Hidden]

Hi Nicole, sending you a hug. You've got a lot going on at such a young age x

I agree with what's been said so far but why is your gp not getting you the right referrals? That's their job! Note I said referrals - plural - insist gp gets all your symptoms checked out, this may mean you see more than one specialist.

I must say, I would be very cross re the macular holes not being fixed asap if there was no good reason. I would tell gp this and consider a complaint via PALS. (easy, just email them with all the details. Their contact info should be on your gp/hosp webpage).

Re the migraine diagnosis - agaiin, what is your gp doing about it?

It is possible for migraine to affect the eye in a serious way so must be controlled if persistent. (I know as my hubby suffered this way despite not having them normally).

Dry eye is very painful and not to be underestimated. I would be in pain every day if not using drops 2 hourly. There's more than one kind of drops, again get your gp to help you if yours need changing. If eye tears up it's dry and needs drops (counterintuitive I know).

Hope you get sorted - some private hospitals take NHS referrals so don't spend your money until your gp has done his job properly.

Having said that, black areas in vision needs explanation quickly. Have you spoken to the Macular Society? 0300 3030 111. They will give you good advice.

[NicoleCatto in reply to Hidden]

Heya, thank you for your reply! it has helped a lot. my gp isnt going anything about my migraine diagnosis, they are just leaving me be. moorfields said to put me on meds with beta blockers and when i went to see my gp to do this i never got anywhere, just palmed off unfortunately.

yes, when i found out that macular holes very rarely get left with no surgery i was so shocked! because best results are within 6 months of it developing and now i have such a small success rate as it is 4 years later!

ah i see, i just assumed that it wasnt a migraine as optic neuritis hurts in the way i get my migraines but it is good to hear that it can happen in that way and i am not again being palmed off

yes, i have my eye drops and use them 2 hourly too, it helps so much! its half my daily worries gone at the moment as i have half the persistent issues there to worry me

thank you for all your advise, you have really helped me!

[Hidden in reply to Hidden]

I agree entirely about contacting PALS. A macular hole has been treatable for many years.

Clearly, you need to attend a different eye hospital. Given the NHS protocol you might find that you have to be referred by an ophthalmologist rather than your GP.

Once again, black areas in your vision need immediate assessment, that alone is every reason to present yourself without delay at an A&E unit who could refer you to a specialist clinic. If they suggest Moorfields then explain your issues with them.

[RosMacularSociety Partner]

Dear NicoleCatto,

I am sorry to read of all your eye concerns.

Please contact us for our macular hole factsheet which could prove to be a useful tool for discussion with an ophthalmologist.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

Please do not hesitate to contact us for further discussion. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,