Hi everybody,
I was wondering if anybody with SWS has ever had a Carotial Hemangioma behind the eye. I just found out from the eye doctor that I have this behind both eyes. Still do not have Glacouma, but the Hemangioma behind my right eye is leaking. I will be seeing a Retina Specialist as soon as I can get in to see if Radiation will work to bring my sight back.
Thanks,
Hank
Hank,
I am so sorry to hear that you are having through this. Unfortunately, this is a part of SWS and it happens in 40 to 50 % of SWS patients. There maybe other treatment options out there. Dr. Fay that works with Dr. Waner is really good. If I can help you in anyway please let me know. We are here for you. I will keep you in my thoughts and prayers.
Jinny
Hank:
There are medical articles that indicate that choroidal hemangiomas affect those with SWS - about 40-50%.
I agree that you might want to contact Dr. Faye who works with Dr. Waner, and get his opinion. He is highly regarded.
Please let us know if we can do anything to help out. We are all here for you.
Please keep me posted on how you are doing and don't hesitate to call me at any time.
Glenda
Is the spelling Choroidal, or carotial? Carotial is that Marion wrote down when we where at the dr's office.
Thanks for both of you for your support.
Hank
Hank:
It's choroidal.
It took me a while to be sure of the spelling too!
Glenda
Update on my eye problem.
It comes to find out that the eye specialist really did not know much about my eye. He thinks I might have Wyburn Mason Syndrome, and a chronic condition of Chronic Arteriovenous Malformations behind the eyes on top of the hemangioma. He does not think it is SWS related, but then again the only kind of SWS this doctor ever sees is Glaucoma. Also, on both eyes the veins look like cork screws, and they can not figure out why it is doing it.He wants me to see a neurologist, because he thinks it is coming from the brain.
Only good news is he said it should not interfere with my surgery next month. I just talked to Waner and he said not to worry about it, he will have Dr. Barensten, and Dr. Coopersmith see me when I am there for surgery. I think they might be part of the dream team that Waner is involved in.
Talk to everybody later.
Hank
Hank:
I'm glad you will still be able to keep your appointment with Dr. Waner.
What does Dr. Coopersmith specialize in?
Let me know what else you find out about Wyburn-Mason syndrome, and if this is a definite diagnosis.
We will all keep you in our thoughts and prayers.
Glenda
Hi Glenda,
Coopersmith is part of the Dream Team with Waner. He is a Neurl according to Waner.
This is deffently what I have, just from reading up on it. It is pretty much a ticking time bomb, which means lights out. I could happen in a matter of minutes or years. Pretty scary if you ask me.
Hank
Hank:
I hope Dr. Waner will have his team give you a thorough check, and help provide a definite diagnosis and treatment plan.
We are all praying for you, and will be here for you every step of the way. I hope you know how much we all think of you, and appreciate everything you do to help others with vascular birthmarks. We will do anything we can to support you and to help you through this difficult time.
Let me know if I can help in any way.
Sending lots of love your way.
Glenda
An FYI,
In some of the info I have found on WMS, some say it is related to SWS.
If anybody would like the info I can send it to them or go to google, msn, or yahoo websites and search the syndrome. It says I have had it since birth and is just evolving now, and it says in the info that around thirties is when it is suppose to start evolving. So it started early for me.
Hank
I found these links hope they can help.