Eye problem

hankbartenbach · #1 01-29-2005, 01:49 AM

Hi everybody,

I was wondering if anybody has had a Arteriovenous Malformations in the eyes.

My eye doctor told me that it is a Chronic Arteriovenous Malformation and thinks that it might go into the brain.
He also told me that I have Wyburn Mason Syndrome (WMS). I am trying to find out if Sturge Weber Syndrome (SWS) is related to either of these new conditions that I have. I have been reading up on the WMS and the AM, and they mention each other, so I am sure they are related.

Thanks.

Hank

hankbartenbach · #2 04-07-2005, 09:07 PM

Just made an appointment with Dr. Yakes for April 27th for my eye AVM.

Dr. Kupersmith in NYC is taking to long to get back to me. Next Thursday will be two months since I saw him (also the day of my surgery). TLC might be there I have not got a confromation from my email if they are interested or not.

Hank

nickbar · #3 04-07-2005, 09:22 PM

good luck... KEEP US POSTED.

Corinne

hankbartenbach · #4 04-18-2005, 08:40 PM

Well after two months I finely got my report from Dr. Kuppersmith. Really was a waste of my time. He did not really have any answers for me, and did not know how to treat my condition.

Good thing I have my appointment with Dr. Yakes in a week and half. Maybe he will be able to answer my questions.

Hank

KristieinStMarysGA · #5 04-18-2005, 09:48 PM

Hank,

After your appt. with Dr Yakes can you tell me a little about him, I go May 24th and already beginning to get nervous, this will be my first and hopefully only treatment for my VM.
Good Luck!

Kristie

hankbartenbach · #6 04-18-2005, 09:55 PM

I will update on this very topic after I get back.

You have no reason to be nervous. He sounds like a very good doctor. We will be in good hands.

Hank

hankbartenbach · #7 04-27-2005, 11:49 PM

Well as I figured bad news. Dr. Yakes said I do have the option of surgery, but it is extremely risky. I have a better chance of getting my vision back by not doing surgery. I am not going to be able to support myself if it gets any worse. So I am moving back to Nebraska to live with my grandma. Until we can find out what is going on and get some surgeries with Waner out of the way.

Talk more later.

Hank

KristieinStMarysGA · #8 04-28-2005, 12:34 AM

That's too bad Hank, hopefully after everything with Dr.Waner maybe you will find other options.
What did you think about Dr.Yakes though?
Kristie

hankbartenbach · #9 04-28-2005, 12:40 AM

Dr. Yakes was an interesting guy.

He is very honest and he listens. Unlike most doctors out there these days.

I think you will be just fine.

Hank

hankbartenbach · #10 06-29-2005, 10:21 PM

Well for the update of the eye is not good news.

I saw my eye doctor today and he is running out of ideas of how to treat my condition. He thinks I might also have a detached retina as well as the extra blood vessels. The steriod injection did nothing to my vision. It is still getting worse the same pace.

I gave hime Dr. Waner's phone number and asked him to get a hold of him and to talk about what kind of options I have. Plus I do not want anything to interfer in my surgery in Aug. Maybe they can put there heads together to figure something out.

Hank