looking for a better clinic

[Ross1983]

Hello all,

This is my first post in this community.

I have been driven to this forum after my today's visit with a specialist that have quite upset and made me sad. I hope I can have your opinion on the below.

I am a high myopic patient, I am 29 years old and have around -16 per eye with also some astigmatisms (about 1.5). 2 years ago I have been diagnosed with Myopic Macular Degeneration on my left eye, luckily with 1 injection of Avastin the problem has been solved and so far I don't had any relapse. I am Italian and live in Berlin (Germany).

Since a week or so, on my right eye I started seeing a grey and blurry spot. I have been to my doctor and consequently to the retinal specialist that has been following me since the mCNV on my left eye. After the usual checks (sight accuracy, tonometry, SD-OCT, funduscopy, fluorescent angiography), the specialist shook me off confirming that it's not mCNV but the RPE  is getting damaged and nothing can be done to help me.
To be more specific, upon my question to clarify the picture produced by the fluorescent angiography, he got kind of nervous/impatient and answered -well, it's difficult also for us to understand these pictures, this is our job- (with the tone like: "it's not your job")
No cure for it, nothing I can do to help. Shook my hand and told me to let him know if I start seeing any distorsion (sign of mCNV), or any additional visual change. We didn't even sit to discuss the issue, as I sat on the chair he stood up, then I stood up as well not to be rude, eventually to realize that standing up it was too high for me to see the papers he was (kind of) showing me and had to lower down to get closer to them. (imagine a -16 after a fluorescent angiography how sees).

I have been almost one week awaiting for this visit almost sleepless at night, as I am very afraid of my eyes condition, I am only 29, have a family to build up, a job I like and still want to do; I want to live my life like a normal sighted person as I have done until 2 years ago.
All of this seem of course not to be of any interest to my specialist who sees hundreds of AMD patients everyday. AMD patients have lived their lives, they do not have to work any more, they have seen the world. I have the whole life in front of me and starting to have issues with my eyes that might start to affect my everyday. Besides mCNV and AMD are not to be considered the same issue (I am not saying he does that, I do not have enough knowledge (yet)).
Until now I have been very afraid that mCNV could come back or appear in the other eye, and in the past 2 years I really have been frustrated by this fear alone. Eventually I now am faced with the reality that not only mCNV could change my life, I have just been confirmed that I have to live with this huge grey spot on my right eye for the rest of my days (if the diagnosis it's correct; and there really are no solutions). Tomorrow something even worse can happen to my eyes, and I want to be treated by the best specialists for my specific case, if they are considered as the best, I think they also look at your patients as humans and not as a pair of unhealthy eyes (2 of the hundreds they visit everyday). Therefore I am looking for specialised center for high myopic people like me.

I believe I need to change doctor and am looking for a specialized center for high myopic patients like me (no matter where in Europe, will consider also to move in the US). I believe the current specialist does not know the meaning of empathy and he is too used to deal with seniors at their gold age.
On top of this story, I finally realized that the time spent waiting in his clinic makes me feel bad. I am sitting in a room full of seniors affected by AMD. Please do not misinterpret me, I give all the due respect in this world to elderly, who have lived a much harder life than I did (world war included), and are surely wiser than I am. I will be old too (hopefully); it's just that so far it made me feel like an abnormal case (no patients of similar age), today thanks to my doctor I am just realizing I probably am in the wrong clinic. No matter if his diagnosis is right.

What do you think about this story? Am I overreacting? Do I expect too much empathy?

Sorry for being so long I just needed to share my feelings with people who can understand me as my doctor apparently doesn't.

Thank you,
Rosario

[Ross1983]

-Big heart*- I meant :)

[Ross1983]

Hello Sherry and Luvtoski,

Thank you so much for your posts. For a moment I was afraid the only answer would have been the one of Dr. O, which with all the due respect, is not exactly what I was looking for :).

Both of you have given me vey valid suggestions, I am going to check in the clinics you suggested Sherry.

As for Luvtoski, your story makes me understand that probably is a general attitude (I guess you also partially nailed the reason why) these docs have. Very cool the Starbucks idea too..

I am now waiting for the beginning of October when I will have my regular visit with my opthamologist (not the retinal specialist of the story) which is a guy with a big hurt, want to hear also his opinion on this event too.

Meanwhile any other feedback is more than welcome.

Thanks guys that really helps to raise my moral a bit up.

Cheers,
Ross

[Luvtoski]

Hi Ross,
I only have a few minutes to post, but wanted you to know that I feel your pain.  I am 57 and had ERM/Vitrectomy surgery a year and a half ago.  Before this eye issue I NEVER had to visit a Doctor my entire life.  I went to several (4) Retina specialists and found different bedside manners, but all of them were condescending and threatened by my research.  I wanted to review my OCT's with them but they barely pulled them up on the screen and then changed the screen images so fast it was ridiculous.
Anyways, I settled on the one that was only doing surgery for 2 years, he seemed to try a little harder than the other "old school" specialists that seemed to be a little burned out.

Guess they think about "liabilities" most of the time and are hesitant to give out incorrect diagnosis's ?  Just guessing at that, but the real issue is what can we as patients do about it ?  

My advice would be to not let this guy continue to frustrate you, as stress is not good for your eyes or any part of your health.  Do whatever it takes to get several more opinions and go in armed with education and a short list of questions written down.  I found you lose their attention after the second or third question.  Also, make friends with the Doc's technicians who actually perform the OCT tests, etc.  They can be more informative than the Docs.
I bring in $5.00 Starbucks gift cards for the techs and am amazed how nice they get when they see someone appreciates them.

Gotta run, hope something I said was helpful.  Hang in there and keep a good attitude !  

[sherry5544]

Hi Ross, i'm sorry -- i too am a high myope and have had difficulty finding opthamologists who understand the word compassion.  If you can come to the US, the Wilmer Institute at Johns Hopkins is one of the world's best -- Dr. Julia Bressler, i am told is terrific -- another option is the Bascom Eye Institute at the Univerity of Miami, in Miami, Florida -- actually rated the highest in the US for eye care.  i know what you are going through and wish you the very best....teaching hospitals, as both are, are often on the cutting edge of treatments and clinical trials.

[Ray T Oyakawa, MD]

You will have to find a retinal specialist who will spend the time explaining things to you.  Get a referral from a friend.


Dr. O.