DRY EYE VETERNS!!! Advice please

[Angela810]

The flap lift helped the most with dryness and the painful feeling of dryness which is so classic after Eye surgery.

I did use plasma before the flap lift although only improved a little. After the flap lift the pain reduced substantially. It really depends what your diagnosis is. Does the amount of dryness you have explain the amount of pain?

Please be patient with the steroids. It took 4 months for inflammation in my eyes to die down after using cyclosporine. Longest 4 months of my life.

[Irina]

Angela,do you remember your pain after the first surgery? When It started , and how bad it was comparing to the pain you have now.I remember from your other post that pain wasn't such bad until third year after the first surgery.It that correct?

[nori2015]

The flap lift helped the most with dryness and the painful feeling of dryness which is so classic after Eye surgery.

I did use plasma before the flap lift although only improved a little. After the flap lift the pain reduced substantially. It really depends what your diagnosis is. Does the amount of dryness you have explain the amount of pain?

Please be patient with the steroids. It took 4 months for inflammation in my eyes to die down after using cyclosporine. Longest 4 months of my life.

Are you still on the cyclosporine or have you tapered off?

My current regime is steroid drop 4 times a day, cyclosporine (restasis) twice a day and tears as needed.

[Angela810]

Hi

After the first surgery I got an extreme scratchy dry sensation in my left eye by 2
months. Then I started to get facial pain (which was referred
pain from my eye) by 4/5 months. At that point I sought help but doctors just told me I had dry eye. Things just got worse from there.

I did have dry eyes but also the nerves must have been growing badly in my eye since I was developing neuropathic pain. I really wish I had started plasma earlier.

I have stopped cyclosporine because my doctor was worried about long term use and toxicity. I went on it for about 6 months.

I only had a flap lift on my left eye because that was the problematic painful one. I'm 3 months post the operation and feel cured now from the crazy pain. My left eye feels less dry now than it did before the operation. Eyes are still dry but that's improving with plasma - slowly but every month feels better than the last.

[Angela810]

It is early days, so I'll post again at my 6 month follow up.

[nori2015]

I often wonder if my issues are due to nerves too. Will push for answers on this at my next appointment.

[L8rgator]

My understanding of Restasis is that it's 'ineffective' if you have plugs and they don't really know why. But I find that interesting, because the first time I got my ducts cauterized my eye started tearing like normal again for a month. And then stopped again. I wondered if my unusual experience and/or the restasis issues are something related to how the nerves work together. Unfortunately Restasis alone did nothing for me. Neither did recauterizations, nor more plugs

[nori2015]

I've come to the end of my maxidex steroid drops. 4 weeks and no improvement.

I've lost hope.

I don't think I can carry on getting disappointed anymore.

I'm sick of holding out hope and praying for a miracle. Ive lost a year of my life and I can't see things getting better.

Doctors can't help me, family and friends can't help me and even I can't help me. I've begged for help, I've gotten in contact with strangers looking for hints on how they've gotten better. I've swallowed numerous vitamins and tried every diet. The fact is after 6 months, chances are you're stuck that way. At 11 months, I'm pretty sure this is it now.

I think I need to just stop trying, accept that this is my life now and go to a counsellor in the hope that they can at least help me to come to terms with it.

[LaDiva]

Hugs Nori. You've got lots of company. Hugs.

[nori2015]

My doctor told me once I went 3 mints without a corneal erosion that I could consider myself 'over it'
I'm now 3.5 months since my last one but woke up today with s little one. I was so disappointed. Anyone else have these gaps between erosions? What does it mean? I thought they were behind me

[littlemermaid]

The UK is the worst place on the planet to have dry eye or lasik issues because there is no help at all!

We have 2 health systems, NHS (public-funded) and private provider (self-pay or controlled by insurance companies). Citizens Advice Bureau can explain the difference and how to get help https://www.citizensadvice.org.uk/healthcare/

People here have successfully pursued their provider for aftercare, harm, and further treatment after refractive surgery and lens problems. Some sign a social media gagging agreement with their compensation (eg http://www.bbc.co.uk/programmes/b0735q3z includes Advertising Standards Authority investigation). Medical negligence firms can advise (see also 'medical indemnity', eg http://www.gmc-uk.org/doctors/inform..._indemnity.asp).

Request a complete Medical Record from all providers to show to doctors. A Summary is useful: date, doctor, observations, diagnosis, prescription. We use a Medical Alert ID bracelet for emergencies while dependent on eyedrops.

Anyone treating post-surgery complications needs your pre-surgery assessment data. 'You should give patients written information that explains the intervention they have received in enough detail to enable another doctor to take over the patient’s care. This should include relevant information about the medicines or devices used. You should also send this information, with the patient’s consent, to their GP, and any other doctors treating them, if it is likely to affect their future healthcare.' (GMC Good Medical Practice 2013, 'Providing continuity of care' 39, http://www.gmc-uk.org/guidance/good_...ecord_work.asp, conditions of GMC registration).

The NHS logs observations and data in the Medical Record which will be useful in future.

The State collects data during benefits, social care, and capability for work assessment.

Charities collect data on vision, medical procedures, and quality of life http://www.rnib.org.uk/knowledge-and...and-statistics, drive research http://www.sightlosspsp.org.uk/, and fund counselling and support (eye inflammation, pain, vision, anger) http://www.rnib.org.uk/cy/recently-diagnosed

University research consortia link national/international databases, and can access all the above (eg http://www.cnmd.ac.uk/research/activ...cular_Database).

Refractive eye surgery is currently regulated as a cosmetic procedure by the Care Quality Commission (as at 2016) http://www.cqc.org.uk/content/choosing-cosmetic-surgery 'Speak up and tell us by calling 03000 61 61 61, emailing enquiries@cqc.org.uk, or using our online form.'

http://www.gmc-uk.org/guidance/ethic...ance/28687.asp General Medical Council patient information summarises expectations with new (June 2016) guidance on cosmetic procedures http://www.gmc-uk.org/guidance/ethic...ance/29004.asp.

GMC blog on new regulation for surgery https://gmcuk.wordpress.com/2016/04/...etic-practice/ - 'We are also developing case studies to illustrate in more detail how the principles of the guidance apply in particular circumstances. If you have views on areas to cover or resources that would be helpful, do get in touch at standards@gmc-uk.org'

UK Department of Health https://www.gov.uk/government/organi...ment-of-health - search 'cosmetic' to find latest news on regulation eg Keogh Review of the Regulation of Cosmetic Interventions (2013) for the Royal College of Surgeons http://www.rcseng.ac.uk/surgeons/sur...smetic-surgery.

Evidence and histories are invited for parliament http://www.john-mcdonnell.net/refrac...rgery_campaign

PubMed is always useful http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3579556/. Hopefully honest providers will publish results and clarify post-op service soon.

[nori2015]

I went back to moorfields for my follow up. I have now been put on a course of antibiotics. So the new regime is

100mg Doxycycline once a day for 3 months
Restasis twice a day
Systane Ultra as needed
Compresses and meticulous lid hygiene

So much for not having any gland issues! I was told I was ok in that regard so I stopped doing compresses as often, I did them every day and lowered this to twice a week. Now I have signs of blepharitis so now I'm going to do them once a day again, right before bed.
I keep feeling like FML might help me as the 4 weeks after the surgery when I was using them I didn't have any issues. But since no doctor has prescribed them I don't want to ask for them, Theyre the qualified ones, not me. I was given Maxidex (another steroid) but that burned so much, and did not seem to help. I don't think I had that reaction to FML. But anyway, I'll carry on with the above and see how it goes. Anyone know how long it takes to notice a difference with DOXYCYCLINE? Any doxy success stories?

[nori2015]

Thanks for all the info Littlemermaid. I'm going to chase them for my records now.

[anncorr]

I did not notice much of a difference with Doxy (on month 5, down to 50 mg now) but I do think it helps a little. It seems like oils are thinner after compresses - before Doxy, I had whitish stuff after compress. Hang in there, I am in month 8 of severe inflammation and dryness after allergic pink eye. It sure is tough and very debilitating. I did have about 10 good(ish) days lately in a row! Then back to soreness. I think the Restatis is helping me make more tears. Sending positive thoughts your way.

[nori2015]

How long have you been on restasis ANNCORR? I think restasis is helping in that my eyes feel a little bit wetter but the soreness and redness remains. I've been on restasis since February and plugs since Decemeber. Doxy for less than a week! I am tempted to ask for the plugs to be removed, as I don't know if they are helping and I hate having them in , it makes me feel that all the toxins are staying on my eye surface longer. Then again, maybe they are helping. I really don't know anymore.