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

[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]

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

[Guest]

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]

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

[Faith1989]

Congrats!! Can I ask what anti inflammatory drop?

[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

[patrick]

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

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]

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

[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..

[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.
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]

ah its pretty sad to read this, seems that all the "basic" ophtalmo have the same opinion on dry eyes, they don't even consider that treatments and technology about dry eyes have evolved (like lipiflow, that HRT device ect).

About the Quinze vingt HOspitals, you need to take an appointment ASAP because delays are long.Moreover you should mention that you have already been received by Baudouin + mentions that this is a emergency, that you don't have the help that you need in your country.

The "emergency" mention is very important, do not hesitate to be alarmist : when i took my appointment to the Clinical Center Of Investigation (it was in June) they told me they have nothing before OCTOBER. So, i lied, i said that the assistant who was followed me said that it was an ermegency and i got a appointment at the beginning of August !!!

About the Clinical Center of Investigation, its very very good, people are nice and they know what they do. They, first of all, give me a paper with questions about my dry eyes symptoms then they ask me about my "dry eyes story" then did a Schirmmer, the HRT exam (they explained me all the pictures they had took), then a complete exam with the slit lamp (TBUT, lids, MG ect) and then the treatment.

Moreover, i have just received the report of my exams (those people are serious), so here it is: -schirmer 25mn in 5 mn
-BUT 5 sec in both eyes
-A lot of inflammation
-Allergy
-mild blepharitis
-papillas and other stuff that i don't know
So hope you will get soon into the CIC's hands

[patrick]

Hello.
Thanks for your reply.
First time i went to prof baudouin it took 3 months before they were able to give me an appointment. That was fine with me. I was not in a hurry.
If i decide to go to this clinical center of investigation i won't forget to mention its an 'emergency'. A little lie for my own sake won't hurt anybody i guess. Thanks for the suggestion.

I think it is a bit surprising you have (very) good schirmer results, i think 25 mm in 5 mns is a lot,and still a tbut of just 5 seconds. Thats a lot of tears evaporating very fast.

Anyway,I hope for you that your current regimen will result in long lasting if not permanent relief of your pain.

Patrick..

[nicolasdu92130]

ok just a quick update about my eyes: i have been on that treatment for 2 weeks and nothing has changed... in fact my eyes burns more than usually ( maybe its because of the preservative in the steroid drop ). So i'm a litte depressed about it, i hoped i would have been a lot better by now but not (very anxious about the back-to-school in 1.5 week)^^.
However tomorrow im going to see one of the two specialisst of dry eyes in France, Serge DOAN, i hope he will help me, finger crossed .