i just cannot stand this anymore.... :(

[patrick]

Hello,

Thanks.
Yes, i read a little about the boston eyepain foundation of dr. Rosenthal.
I think it is unique for the world to have a clinic like this. In comparisson the developments in that field are still in the stone age here in the netherlands.
Unfortunately boston is a bit far away .

I discussed the hrt device with my opthalmologist yesterday already. (By email).
The reaction I received is kind of typical for the way doctors here think about treating dry eye; they generally seem to think that you shouldn't even waste any time and energy in pursuing a suitable treatment for dry eye because bottom line is that you really can't do a thing about it except accepting you have it and try to go on with your (miserable) life.

The opthalmologist litterally said that the hrt device is not at all meant to examine dry eye related issues and she never heard before of it that it is being used for that purpose by any colleague. I am sure she must have thought; 'where does he get all these silly ideas from'?
Thinking out of the box seems for opthalmologists just out of the question. a patient who knows a little more due to self education than the average patient and does a bit of his/ her own research is not at all appreciated. To say at least.

The suggestion to initially use a steroid drop for ten days and then shift to a non steroid drop for 6 months in order to get rid of the inflammatory cells on the cornea was dismissed by the argument of too many possible side effects and therefore too dangerous. End of discussion.

So i guess i will have to go to paris again to get a proper examination.
Fortunately paris isn't exactly the other end of the world. I can get there fairly easy by car or train.

Patrick..

[nicolasdu92130]

Hello,

Thanks for your reply.
It sounds promising and i hope for you that this anti inflammatory approach will prove to be effective to treat your dry eye problems.
Please keep us informed about your experiences with the course of (non) steroid drops your currently taking.
Never heard about the hrt technology before,but i'm very keen to have my own eyes examined this way to.
Since the good old slitlamp examinations always fail to reveal what exactly is causing my dry eye pain. ( which is quite severe).

I think i will visit my gp shortly and see what my options are to have this hrt examination done here. ( i'm in the netherlands).
If it turns out that due to whatever reason it is not possible to have it done here would you be so kind to provide me with the contact information of the clinical center of investigation you went to?

Does this center have any connection with prof baudouin in paris? Because i already been there like two years ago or so. it was at the hospital quinze-vingts in paris. I know prof baudouin is a very reputable opthalmologist,but he also couldn't find the cause of my pain. His conclusion was that for me it might help to go using a pair of reading glasses. Which i faithfully did,but of course didn't help a bit...

Patrick..

Ok, i think that i can maybe give you some good informations becauise i have read some stuff about eye pain.

First able you need to go to: http://www.bostoneyepain.org/ (Doc Rosenthal is a world specialist about eyepain and there are inspiring stories on this website)

Then, about the eye pain, if i'm not wrong, its because there is a problem with your cornea's nerves (cornea is very very very sensitive) and I know that the HRT can examinâtes your cornea because i have seen my nerves on pictures.

"Confocal microscopy with the HRT Rostock Cornea Module offers clinicians one of the most detailed views of cornea structure and pathology" http://www.heidelbergengineering.com...rt/hrt-cornea/

About Clinical Center Of Information, yes it has a connection with prof Baudouin, because he is the chief of the Clinical Center of Investigation.

For contact you have to ask for an appointment: http://www.quinze-vingts.fr/__1/accu...de_rendez_vous.

So if you don't have the technology in Netherland you can go in Boston or in Paris at the Quinze/Vingt
hope it helps

[patrick]

Hello,

Thanks for your reply.
It sounds promising and i hope for you that this anti inflammatory approach will prove to be effective to treat your dry eye problems.
Please keep us informed about your experiences with the course of (non) steroid drops your currently taking.
Never heard about the hrt technology before,but i'm very keen to have my own eyes examined this way to.
Since the good old slitlamp examinations always fail to reveal what exactly is causing my dry eye pain. ( which is quite severe).

I think i will visit my gp shortly and see what my options are to have this hrt examination done here. ( i'm in the netherlands).
If it turns out that due to whatever reason it is not possible to have it done here would you be so kind to provide me with the contact information of the clinical center of investigation you went to?

Does this center have any connection with prof baudouin in paris? Because i already been there like two years ago or so. it was at the hospital quinze-vingts in paris. I know prof baudouin is a very reputable opthalmologist,but he also couldn't find the cause of my pain. His conclusion was that for me it might help to go using a pair of reading glasses. Which i faithfully did,but of course didn't help a bit...

Patrick..

[patrick]

.............

[nicolasdu92130]

Congrats! Thats some huge progress!
May i ask what a hrt is? Is it an examination at the slitlamp?

Patrick...

thx

HRT is Heidelberg Rétinal Tomography. Its a high technology device that make thousand of pictures of your eye's cells, eye's nerves ect.

For me, its showed that i had a lot of inflammatory cells ( i could see it on the picture).

[patrick]

Congrats! Thats some huge progress!
May i ask what a hrt is? Is it an examination at the slitlamp?

Patrick...

[nicolasdu92130]

Congrats!! Can I ask what anti inflammatory drop?

Vexol -twice a day for 10 days then once a day for 10 more days (its a steroid anti-inflammatory)

indocolyre -once a day for 6 months - its a non-steroid-anti-inflammatory

[Faith1989]

Congrats!! Can I ask what anti inflammatory drop?

[nicolasdu92130]

Hi everyone, one month since my last post and things have changed

I have been to Martinique, high humidity but a lot of Wind everywhere and i did'nt find wraparound glasse adapted to my sight, so i created my own wraparound (very very ugly) but anyway, my counsins were there, they didn't judge me with those ugly sunglasse and my towel on the head and i laughed a lot with them, first time that i was having fun since 1 year.

So that trip was very refreshing for me and get me out of my depression

But, the good new is that 3 days ago i was at the CLINICAL CENTER OF INVESTIGATION of 15/20
i was very exited, i was finally examinated by specialists.

So they did a Schirmer => no problem.
Then they did a HRT, look at my eyes cells and the conclusion is: my cornea nerves are fine
my epithelial cells are fine
i have a LOT of inflammatory cells
Moreover after that, the doc examinated me at the slit lamp and i have MGD + Allergies.

The doc gave me a regimen of anti-inflmmatory drops, an allergy drop and he told me to continue lid hygiene and doxycycline and of course artificial drop. On my side I continue to take to 2 Fortifeye pills a day.

So i'm very optimistic and happy, because i know that exactly what my problem is and i have ( FINALLY) a good treatment that address the CAUSE of my problem.

Hope i will be well soon

Wow... sucks when they don't offer any help. Not sure how your medical system works there, but if there is any way to get a referral to someone else, I'd try that route for sure.

I wasted over 3.5 years on my LASIK surgeon (corneal specialist), who was useless and insisted at every appointment that I was doing "GREAT!" (picture big cheesy grin on his face... ugh) I can relate to feeling hopeful that the dr. will at least TRY to help you, and being let down when they don't seem to care.

Finally, I found out how one goes about getting a referral to someone else, and the new dr. I started seeing was fantastic (I still see him to this day) - he doesn't treat me like my problems are nothing, and he tries to help. And one of the best things about him is that no matter when my next appointment is scheduled to be, he ALWAYS makes lets me know that if I need anything before that, to contact his office/make an appointment sooner etc. I no longer feel the need to use that option very often, but when I first started seeing him, I used it regularly. You need to find someone like that, and trust me, it is soooo worth any aggravation/hassle you go through to find them. Good doctors are out there... you just need to keep looking.

In the mean time, study dry eye treatment guidelines that are published in your country since that is what your doctors are most likely to be familiar with - I'm not sure what the major journals are over there, but you should be able to figure it out, (although honestly, the DEWS report is all you need and I bet you that whatever dry eye treatment guidelines are published in your country will use the DEWS report as a reference at least once... but in case the doctors you see are only familiar with the treatment guidelines as published in your local medical journals, it would be good for you to be familiar with them) - come up with a treatment plan that you'd like to follow based on what you've learned - maybe while you are waiting to find a new dr. you'll be able to get the current guy to at least prescribe for you what, if anything, you need? And if he won't, then carry on looking for a referral to someone better.

No-one will ever care more about your eye problems and finding a solution than you will, so make yourself an expert on possible causes/treatments/solutions. Don't be intimidated by the prospect, it's not that hard Then you just need to find a dr. who is not arrogant, and willing to assist you in sorting this out - someone to prescribe things if need be, someone to make sure nothing serious is going on that needs instant attention, someone with experience to ask opinions of etc.

[nicolasdu92130]

Okay, i have just comeback from my appointment with an assistant of professor Baudouin at 15/20 hospitals.

I'm just astonished, stonned by what i have heard and how it went:

so first, a girl came to see me, i told her that everything i was doing do not work and that i have not had any improvement since the begining of my dry eyes... She looks at my eyes, did not say anything and walk away. So i was waiting and i looked at what she wrote about me on the files : ...... white eyes.....
i was like "she is kidding me", my eyes are just freaking irritated (almost like a conjontivitis) and she said they are normal, just wow, if she had cameback, i would ask her to compare our eyes....

At that point, i was already pissed

Then the assistant came, smiling, full of joy, did a TBUT and WOW: 18 seconds on the right eye
Just for the information, my right eye is the worse, very very dry, outside i can barely keep it opened and every time i blink, it not smoothy like a normal blink

Anyway, i have the same symptoms that when my TBUT was 5 seconds...

So the doctor scratch his head, he did not know what to do, i told him about the other opthaloimologist rapport that says that i have MGD, told him to look at my meibomiand glands. He didn't care and said that my MG are inflammed without express them. I asked about cyclosporin and i he said that it did not help with MGD...
Okay, he was wrong because there are studies that prove the contrary but anyway...

Thend i asked: " IF, ACCORDING TO YOU, CICLOSPORIN DOES NOT HELP WITH MGD, WHY THE F*** DID YOU GIVE IT TO ME SINCE MGD IS MY PROBLEM ????!!!" (im very upset because im very uncomfortable with ciclo even at 5 months, but my since my TBUT increases, i asked me to continue)
He told me that it was because they have nothing else (no warm compress, no omega 3, no doxycylcin, nothing...) they are basically only ciclosporin distributors.
He gave me an appointment for Clinical Center Of Investigation (impressive name right ?), but they will only look at my cornea and stuff like this instead of looking at my MG which are the problem since the BEGINNING in September (very very far away ) and results should come out in October and after i will have to ask for a new appointment ect.... so it will not be before November....)

The appointment lasted 5 mns... ( didn't have time to ask about safety of long term cycloporin, sorry littlemermaid )

So bottom line, very very frustrating appointment , i was putting a lot of hope into this...and a SPECIALIST of dry eyes is essential to get throught this...

I am at a loss right now, my theory is that Blephasteam + doxy + omega 3 are at issue for this dramatic increase in TBUT and that cyclosporin only make my eyes drier and very sensitives.
So no cyclosporin anymore, i think i am allergic/hypersensitive to it, and i will continu my current regime
hope i will be better

[farmgirl]

what is the procedure to get it adapted to my view ( i have myopia and astigmatism)

I just sent them my prescription and they put it into the lenses once I had chosen a frame. I am farsighted with astigmatism. I have to say that they are not as good as my regular readers for everyday use but I can read a label or menu etc. I wouldn't want to use them to read a novel though as I find the curvature distorts a bit. Driving is no problem and that is where the astigmatism comes in. Hope that helps...F/G

[nicolasdu92130]

there is that thread

http://www.dryeyezone.com/talk/showt...osporine-drops

but i can't find studies about higher concentration, i have only seen that mentionned in articles.

i will ask the ophtomaloggist about this

[littlemermaid]

http://www.moorfieldspharmaceuticals.co.uk/
Good news, Nicolas Would you be kind and post up what he is thinking these days about eg cyclosporine in long-term use? I can't see how increasing the concentration would help and I'm interested in what bases you've got access to. What's working for us has been reducing anti-inflammatory drops after control of flareups to the absolute minimum, then off as soon as possible. I think any chemicals we use seem to change the environment and we are trying to coax the eye systems back to 'normality', especially because I believe I am dealing with an immunology problem. Although it sounds as if yours is more like chemical harm and apoptosis on the eye surface, it sounds like you have got an allergic sensitive component. It would be great to get his thoughts. Good luck!

[nicolasdu92130]

thx for replying

farmgirl :

you are definitely right about the glasses i will get information about it (because outside Wind is my main problem, my eyes seem to be very sensitives) and what is the procedure to get it adapted to my view ( i have myopia and astigmatism)

littlemermaid :

im using ciclo 0.05% that is all i know^^. On Wednesday i will see my ophtalmologist and i want him to increase ciclosporine concentration like 0.5% because 0.05% doesn't nothing for me and studies have proven that higher concentration or more frequent usage benefit people like me.
Don't worry about the allergy stuff, i have already put many chemicals into my eyes when i was not aware of that stuff, so i will only clean my bedroom ect^^
Thx for Azyter, i will talk about with the opth on wednesday
About Holiday, i'm going to Martinique for 2 weeks, a tropical island (about 70% of humidity), with no computer, so hope it will help because its very hot and dry in Paris right now

Good news, i have an appointment with the very best specialist of France(he is very implicated with dry eyes, has a good reputaion and have written good articles about it) Doctor Serge Doan, the 23 August, so i know i will be in good care with him