Feeling so alone here in DK!

[Kenneth]

Hi there!
First of all excuse my English , but I hope it's understandable..

I'm a 49 years Old male living in Denmark
I'm suffering from MGD , but walking in and out the hospital of the last 3 years without no results

In DK we are in front on many things but about dry eyes it feels that I'm all alone and don't know where to find help.
Maybe there no more to do...
Over the last 3 years I've been treated with many kinds of drugs, punctual plugs etc.... Only my scleral lenses gives me a little relief
I've been in Germany getting a MGD Probing and expression on my hospital afterwoods.. But with no progress in my comfort...

I'm using my facial sauna twice a day with massage.... Don't feel it works but I dare not doing it because that's what " people" says has to be done..

14 Days ago I went to try new plugs and now my eyes are full of water, that's nice, but I also know that's not helping my MGD....

I'm very much cocidering travelling to Bruxelles to get a minor salivary transplant....but in my head there's a question...... Is there anyone out there there can help me so that I can manage my MGD so that I can get through the day without so massive pain , wanting me lay down and close the eyes all day....

My doctor tells me that my meibomian glands deliveres nice and clear meibom but not very much of it, especially from the upper lid...

Kenneth
Denmark

[sunshinelover]

Hi Kenneth,
I know what you are talking about. I cant beleive DES is supposed to be som common, when you never meet one single person with the desease. And there are no patient groups or advocacy groups or anything. Noone really cares. I have been to doctors in Oslo and Paris and learnt a lot from there, and I am better now than I was in the beginning 1,5 year ago, but the upcoming winter will most certainly be very challanging again.
What an intresteing idea with the salivary transplant. Is it possible to go there from other countries and get the inplant if you pay yourself? I wonder if it would help, though. But who knows!
So far Restasis, Bleaphasteam googles and Sterilid shrub seem to have been the greatest help. I quit gluten also (have no idea if that have any effect but I seem prone to inflammation) and eating plenty of omega 3 and 7 (sea buckthorne).
Have you checked your hormones? There is a guy called Jads here who has a whole internetpage about that in Australia.

[spmcc]

Kenneth,

I'm so sorry that you're in such pain. Do you have a pair of goggles/moisture chamber glasses? They have a foam seal and really help.

What is probably happening is your tears are evaporating too quickly due to the lack of oils. Wearing protective glasses/goggles reduces that evaporation so your eyes feel more comfortable.

Can you find a Harley-Davidson store (that sells their apparel and other accessories) near you? Check here: http://motorclothes.harley-davidson.eu/ . Try on a bunch of goggles/moisture chamber glasses to find the one that fits best.

Let us know how you are doing.

[farmgirl]

.

I'm very much cocidering travelling to Bruxelles to get a minor salivary transplant....but in my head there's a question...... Is there anyone out there there can help me so that I can manage my MGD so that I can get through the day without so massive pain , wanting me lay down and close the eyes all day....

Let me preface this reply by telling you how badly I feel for your plight. I do have one question though. In the above quote you mention that you are considering travelling to Bruxelles to get a minor salivary transplant. I understood that this experimental surgery was for aqueous deficiency. If your problem is MGD why would you go to the risk and expense of surgery of this nature?...F/G

[Dog2012]

Did you check testosterone level..if it is low ask you docter to raise it by TS shoots..works best for me !!

[Kenneth]

http://www.dryeyezone.com/talk/showt...treat-dry-eyes

Read this thread, and articles written by Dr. Raus himself tells that the salivary gland deliveres mucin to subttitute the meibom very we'll...
I will try find the articles and post them herennn

[Kenneth]

Hi spmcc

Yes I do have wiley x glasses with foam seal.... Doesn't really help me....badly".....but thanks

[Kenneth]

Hi Dog2012

No that I haven't try .. I will write it down and ask my doctor to test it.....is that a common treatment for DES.. or how did u discover that??

[kylix]

Hi Kenneth, If I could advise you I would try to get meibography to see how your glands look like, it's available in Germany easily, hospitals in Munich or Dusseldorf have it among others. Also in other European countries it's available (unfortunetly not in mine AFAIK). Devices like keratograph 5m are able to show them.
Also please read this article here: http://dryeyezone.com/encyclopedia/mgcare.html . It's from some (I suppose very good) doctor who claims that low production of meibum (seems to be your case) is caused either by hormon problems or ocular surface nervers problems (caused e.g. by contact lenses or LASIK). So getting your hormones check could help you identify the source of your problems (or examination by confocal microscopy if your problems stem from ocular surface nerves impairment).

That treatment by Dr. Raus could definitely help, but question is whether they would be willing to perform it coz I suppose it's just for really hard cases. Don't know how they make decisions whether you are candidate or not.

[Kenneth]

Thanks kylix

I also think that my major problem is underproducing .....( I never wear lenses and had no LASIK )...
I was in Fulda Germany wisiting Dr. handzel because I was advised to get a probing, but when I saw him he didn't see me as a obvious candidate for probing... But ssince I travelled the long way he did the probing.... Since that , accually in these days I've got a swollen lid because of one gland reacting and I feel a hard " string" in my lid....

Well I think I have to work out from that I'm producing not enough meibom that gives me unbelievable pain .....

Off course I'm scared not ever to find relief but by increasing the main course to my problem I hope that someone can help me treat it the right way...

I've every time at hospital been told that my meibom is fine and clear , but not too much of it...

:-)

[kylix]

if you didn't have LASIK or have never worn contacts then I would definitely make an appointment with endocrinologist asap. Most obviously it could relate to androgen deficiency.

I've just read that post about Dr. Raus' treatment and it seems to be really interesting option. But don't fully understand it. Do you know how he can arrange that lipids are produced after the surgery?

[Kenneth]

What is androgen deficiency?.

I have felt dry eyes over many years but all day pain the last 3 years getting worse every year..

I will find articles for u about transplant

[Kenneth]

Ok it's the hormones :-)

[Kenneth]

http://www.dryeyezone.com/talk/showt...treat-dry-eyes

Here is an article written by Dr. Raus....I have seen more and I keep searching...

But it seems that the lipid level is very high in these glans there are been transplanted....

[Kenneth]

Oops the wrong link...
Here is it

http://www.articlesfactory.com/artic...-dry-eyes.html