Confocal Microscopy

[DryLondoner]

Reading you don't wake up with bloodshot eyes, the happiness that this could improve actually made me cry!! Are your eyes bloodshot at all now?

What is your routine at night? I'm desperately trying to get serum drops.

Thank you for your well wishes, I wish you the best and hope you can get serum drops. Well done for getting the clinic to get a confocal - mine aren't very supportive and have said I need to try a bandage lens. Even though my TBUT was down to 3 seconds and schirmer 3mm, they say I have no clinical signs of dryness. Has your clinic been supportive?

[DryLondoner]

Although I haven't been on this site for a while, I came across this thread about confocal microscopy and would wholeheartedly agree about its usefulness. I'm in similar position to you DryLondonder as I had Lasek 14 months ago, and have suffered dry eyes ever since. My eyes have improved a little in the intervening time, but they are still pretty bad in all honesty (TBUT varies but it's generally about 3 or 4 seconds in each eye, sometimes a little higher, sometimes a little lower).

After months of badgering, I finally persuaded the Laser clinic to send me for this test which I had yesterday. I had it done by Professor Dua at the Queens Medical Centre in Nottingham and it took about 10 minutes per eye. Not a painful experience, but it is fairly uncomfortable as the lens cover actually touches the surface of your (anaesthetised) eye during the test. Anyway, my results were possibly even worse than yours as I've only had 20% nerve regrowth in my right eye, and even less in my left.

Although it's bad news for me, I - like you - am glad I had it done as I know the root cause of my issues (although I long suspected it). The Professor is going to discuss treatment options and get back to me. I guess that serum (and time) are the only possible options for me now, but I guess I'll have to pay this myself as I can't imagine the laser clinic will (and I understand that the NHS won't prescribe it in the West Midlands area).

I would definitely urge anyone who had had Lasik or Lasek to insist on having this test as soon as possible (and I think it should be a mandatory requirement to have it done before surgery to see if there are any abnormalities) Fat chance of that though...

Anyway, I really hope you improve soon. Like I said, some of my symptoms have improved with time (I don't wake up with bloodshot eyes anymore for instance) so I hope yours will as well.

I paid £120 with Michael Hau at Moorfields, although if you call them in sure other people may offer it too.

May I ask about the PRP serum. NHS? Private? Has it helped with the comfort of your eyes?

[DryLondoner]

Has it helped with redness?

[Jovver]

I haven't started to use the serum yet, but it was mentioned during the microscopy session. I fear I'll have to pay for it myself as the NHS won't prescribe serum in the West Midlands and I'm sure my laser clinic won't pay for it either. The laser clinic are supportive now and they are paying for the consultations with Professor Dua, but it did take an awful lot of effort on my part to get them to take me seriously.

My eyes are generally not bloodshot at all as long as I keep using drops on a regular basis. I remember waking up with dark, red eyes for many months after my surgery but that gradually started to wear off at about the twelve months mark; they look okay in the mornings now although they still feel really dry obviously.

Inspite of my damaged nerves I now have a 15mm plus schirmer score in both eyes now (un-anaesthetised, but at the six months mark it was less than 4mm in both eyes) so perhaps there has been some improvement in the nerves, however small.

[littlemermaid]

Robster's LASIK company paid for Lipiflow back in 2013 http://www.dryeyezone.com/talk/showt...ght=#post81408 and it would be sensible for them to start paying and sub-contracting for autologous serum and PRP as the healthcare market changes. I don't have experience but do you think it might be useful talk to medicolegal speculatively? (Google 'medical negligence eye surgery')

Jovver, very impressed you've got HD. Let's hope he can help us all.

[littlemermaid]

Is there any alternative to London for Confocal Microscopy - is it available on the NHS?

Steve, I Googled 'NHS ophthalmology confocal microscope' and found loads. Just add your nearest large teaching hospital city eg http://www.cmft.nhs.uk/media-centre/...dy-participant. I think they've all got them now. I understand difficulty in accessing if we are not with the Unit eg ours would be UCL not our hospital. So much easier if it's in the next room. Maybe phone Manchester Royal Eye (Private) but try to get NHS referral once you've found the service. Is that your nearest?

[Jovver]

Jovver, very impressed you've got HD. Let's hope he can help us all.

Hi Littlemermaid,

Indeed I hope he can. I was very impressed by him; he is by far and away the most knowledgeable person I've seen so far (including people at Moorfields).

I have to say I have been a complete pain "in the you know what" with my laser surgery clinic, and I basically beat them into submission about being referred to an expert. I haven't given up hope on persuading them to pay for serum either!

I'm not sure about the negligence route, as I think it would be very difficult to prove this.

Did the surgery cause the dryness? Undoubtedly, but were they negligent and could they have foreseen how my eyes would react? Sadly, I'm not sure they could have done, as I had absolutely no symptoms or signs of dry eye beforehand. As painful as it is to admit, I've come to accept that I've simply been really, really unlucky (leaving aside the ethics of laser surgery in the first place). Having said that, I do blame them for not taking my symptoms seriously for many months though.

[DryLondoner]

Hi Littlemermaid and jovver,

I think my laser eye surgery were negligent in my case. For example in March, I went in and explained some symptoms and was told it was allergy related, go and see an expert. Despite, in the same exam the surgeon saying no pappilary on eyelids anymore and tear film is not very stable, oh just do hot compresses. I was so overwhelmed with his attitude and upset that at the time I didn't really know what to say and walked out very upset. I couldn't see the expert they referred me to (at my own expense) for 2 months either, so went elsewhere and now 5 months later things are so much worse.

Jovver, any advice on getting them to listen. My eyes hurt 70% of the time. And it's had an unbelievable impact on my life. I've been asked to wear bandage contact lenses, but I've tried 2 different prescriptions and both have made things very blurry. Too blurry to be functional. Despite this, they want me to wear them. I'm so confused as two other experts have advised against the contact lens as it might irratate the eye more (papillae on underside of eyelid) and further dry out eye. I explained this to my surgeon and he was obs. v. annoyed and told me it was all rubbish. But it sounds logical to me!

They have given sych little advice regarding managing my eyes. For example, I have night time dryness, but they have said, nothing you can do. Wear contacts during the day, no mention of goggles or any lubricants I could use. Also, when I said hurts to walk down a street, again, wear contacts, failed to mention anything about moisture chamber glasses etc.

What really upset me, on hearing about results of confocal which was lower nerve re-growth than expected for a LASIK patient at this point, they still won't concede there is an issue and he says everyone's nerves after LASIK at rubbish. Yes, but mine are more rubbish and any didn't you mention this before the surgery!! So frustrating, at one point he actually shrugged his shoulders in response to a question!

Jovver, have yours been more useful?

Any advice?

[littlemermaid]

Re serum: last year Medicines Management Department of our local large NHS Health Trust (University teaching hospital, specialist eye clinic) were interested in helping me buy, at NHS negotiated price, lubricant drops, Azyter, formulated cyclosporine, which the GP had refused to appeal to CCG Drugs Committee (despite variations on these eyedrops prescribed 6y by tertiary paediatric consultants for a chronic iatrogenic condition). The NHS Trust Medicines Management were helpful because they would sell to Private patients anyway, so there might be mileage in this for unfunded Blood products. I didn't follow up because the Lay Chair of the CCG and local Trust head of Ophthalmic Committee found it advisable to support me so I didn't have to go to Drugs Committee because they write the 'rules' anyway so the GP gave in.

It would be nice to have our purchasing supervised and monitored for problems by professional NHS hospital Pharmacists. This is obviously a slippery slope for NHS meds funding. It is shocking that people with eg autoimmune disorders, cornea melt or post-surgery cannot get serum https://www.evidence.nhs.uk/search?q...%20eye%20drops Can Moorfields Pharmaceuticals advise? They've been great at replying by email.

Drylondoner, maybe it's about finding who you trust to help you heal your eyes your way, as a priority. We have 2 main Consultants who both have my utmost respect but they have opposite approaches to intervention, both of which junior and I can see the point of and agree with most of the time. The surgeon has a post-surgery management Duty of Care which is recognised in the profession. Keeping a Diary and copies of all medical records, letters, scans, photographs, is a good plan. You've got expert 'second' opinion, which is good.

[DryLondoner]

Littlemermaid, you are right. I'm in KL now, so finding it hard to know who is good. Not the same as the UK. I have considered coming back. Would mean I leave a dream and fabulous job behind. Although, my eyes are obs. more important.

[littlemermaid]

Can someone local help you through the system? http://mso.org.my/memberlist_by_name.aspx Medical insurance? Is screentime and airconditioning a factor? There are some possibles in Google 'cornea Kuala Lumpur' http://www.isec.my/doctor_adrian_tey.htm. Maybe you're just as well off in KL if medical support is consistent for what you need once you've found your way around? The regional congress might be Asia Pacific Academy of Ophthalmology - sometimes specialist units are represented by speakers or poster presentations at conferences, also eg World Ophthalmology Congress, American Academy of Ophthalmology cornea subspecialty meetings.

[spmcc]

I paid £120 with Michael Hau at Moorfields, although if you call them in sure other people may offer it too.

I'm going to butt in with a little comment here... Negotiate with them on price for confocal microscopy. For example, we have a little group of 5-7 DES people here in the Vancouver area. We all wanted LipiView and LipiFlow so one person in the group negotiated with one of the providers in our area. We all referred each other and one person got a free LipiView. It may not be a huge amount, but it's something for someone who might not have been able to do it.

So, get together and negotiate a discount!

[DryLondoner]

Can someone local help you through the system? http://mso.org.my/memberlist_by_name.aspx Medical insurance? Is screentime and airconditioning a factor? There are some possibles in Google 'cornea Kuala Lumpur' http://www.isec.my/doctor_adrian_tey.htm. Maybe you're just as well off in KL if medical support is consistent for what you need once you've found your way around? The regional congress might be Asia Pacific Academy of Ophthalmology - sometimes specialist units are represented by speakers or poster presentations at conferences, also eg World Ophthalmology Congress, American Academy of Ophthalmology cornea subspecialty meetings.

This is so useful, thank you. Screentime has been low. But air-conditioning is a nightmare. Only been here 5 days but will get cracking. Thank you!

[Jovver]

Hi Littlemermaid and jovver,

I think my laser eye surgery were negligent in my case. For example in March, I went in and explained some symptoms and was told it was allergy related, go and see an expert. Despite, in the same exam the surgeon saying no pappilary on eyelids anymore and tear film is not very stable, oh just do hot compresses. I was so overwhelmed with his attitude and upset that at the time I didn't really know what to say and walked out very upset. I couldn't see the expert they referred me to (at my own expense) for 2 months either, so went elsewhere and now 5 months later things are so much worse.

Jovver, any advice on getting them to listen. My eyes hurt 70% of the time. And it's had an unbelievable impact on my life. I've been asked to wear bandage contact lenses, but I've tried 2 different prescriptions and both have made things very blurry. Too blurry to be functional. Despite this, they want me to wear them. I'm so confused as two other experts have advised against the contact lens as it might irratate the eye more (papillae on underside of eyelid) and further dry out eye. I explained this to my surgeon and he was obs. v. annoyed and told me it was all rubbish. But it sounds logical to me!

They have given sych little advice regarding managing my eyes. For example, I have night time dryness, but they have said, nothing you can do. Wear contacts during the day, no mention of goggles or any lubricants I could use. Also, when I said hurts to walk down a street, again, wear contacts, failed to mention anything about moisture chamber glasses etc.

What really upset me, on hearing about results of confocal which was lower nerve re-growth than expected for a LASIK patient at this point, they still won't concede there is an issue and he says everyone's nerves after LASIK at rubbish. Yes, but mine are more rubbish and any didn't you mention this before the surgery!! So frustrating, at one point he actually shrugged his shoulders in response to a question!

Jovver, have yours been more useful?

Any advice?

Hi Drylondoner,

The only advice I can offer is to be completely relentless and make them understand you are not going to go away. I'm not an expert on nerve re-growth, but I think there are studies which show how much nerve regrowth occurs at various stages in the healing process. I think that we are at the more extreme end of the bell curve sadly. My nerve regrowth is definitely well below where they would expect it to be at this stage, so I think it's very difficult for them to argue.

I can also be a pain in the ****, no-nonsense Yorkshireman when the mood takes me! The turning point for me was when I turned up at the surgery in person, and demanded action at the 10 month mark (when it became even more obvious that something was amiss). If I'm honest, I wasn't in a mood to take prisoners and I explained to them in no uncertain terms what was going to happen if they didn't start taking me seriously (at this point in time I was having a couple of erosions a week, and I couldn't sleep for more than a couple of hours without having to wake up and add more drops).

By the time I got home 20 minutes later, I'd already had an email from the clinic manager arranging for me to see the chief surgeon, who then arranged for me to see Professor Dua. I have to say, that the surgeons have generally been the least helpful people (Prof. D excepted of course), and the Clinic Manager was the key person in moving things forwards in my case.

Although I am still a long way away from being "normal", things did start to improve a couple of months ago, and my eyes are much better than they were for months after the surgery. I can keep my eyes open all day now, and I can sleep for five or six hours without waking up in pain. I'm still aware of them, but the searing pain has mostly gone now.

Small steps I know, but I do think that time (and the right help of course) will enable us both to get better.

I've tried the bandage lenses but they did not help me at all. They were very uncomfortable and I had a terrible erosion when I forgot they are there, rubbed my eye slightly, and ended up in hospital as the edge of the lens cut into my eye...

[DryLondoner]

I'o sorry Jovver, sound like you are having a very tough time. So glad that you are making progress. I really hope you get the serum drops. I wish I was in London, and could go in. I've been insisting they call me and emailing regularly. I don't understand how they sleep at night.

Thank you so much for your advice. And thank you also LM. I'm so ashamed of what I've done to myself that I don't really let on how much pain I'm in to my family and friends. This forum has been my saviour.

I completely agree with you with regards to surgeons being unhelpful. He doesn't have any sympathy. No idea how much this has impacted my life, or at least he doesn't care. I have to admit, I call and cry on the phone to them regularly. This is how I got them to pay more attention, not as dignified add your approach I'm afraid! However they are still not doing enough. He had the audacity to say, "you signed a consent form" which is crazy as he said to me during my pre-op consult that I shouldn't worry, and gave me stats and numbers which made it seem like what is happening is incredibly rare. I feel like a fool for falling for his sales pitch. I dream about walking out of his office. They are famous surgeons, and have a worldwide reputation, yet after the surgery at times you are left in the hands of the receptionist who give you basic advice on the phone. Crazy!

I can only pray now and hope for better care. I don't remember what it feels like to be happy anymore, or to laugh, I pray one day I will.