I am just curious in finding out how many people out there that have some form of a vascular birthmark also have some form of eye conditions.
Being that I have Sturge Weber Syndrome I know about glaucoma already. I am more interested if anybody has had any other type of eye conditions.
I have only talked to a hand full of people that have a vascular birthmark that have some form of the similar eye condition that I currently am dealing with.
For those that do not know I am dealing with a detached retina in both eyes (bilateral) with a AVM in the left eye and a chrodial hemangioma in the right. They think it is caused by the below pressure behind the eye that is pushing my eyes and causing the detachment (for those that do not know glaucoma is high pressure). I have lost vision in both eyes but a lot more in the right. I have been to several doctors in several different states and none of them have ever seen anything like it. The Wilmer Eye Institute at John Hopkins hospital in Baltimore MD had never seen anything like it and said they have only seen it in text books. They mentioned options that I might be able to do but where not willing to give me any treatment.
This monday (Jan 9th 2006) I will be going to MA Eye and Ear Infarmary in Boston MA. We are going to find out if they will be willing to attempt radiation treatment with a Proton Irradaition machine. With low dosage. If so they will treat me the following week four days straight. (will keep this group updated if they attempt to do so)
So now that you all know what I will be doing for the next two weeks, is there anybody else out there that has any kind of eye condition that is related to a vascular birthmark (besides glaucoma)???
Gab doesn't have any eye issues from her PWS or eye issues period, but I wanted you to know I will be praying for you while you are gone. I hope that when my daughter is your age she displays the same amount of grace, courage, respect, and kindness you display every day here. Please have a safe trip sugar, and keep us posted.
Well, I am finely home from Boston. I ended up having four radiation treatments to both eyes. It was pain free and went quickly. Thank goodness there is no after effects from the treatment since it is such low doseage. I will not find out for several months if the treatment worked or not because it has to heal. I am suppose to come back in six months for my check up.
How did you like Boston? Did ya'll do anything? Lol sorry I know I am full of questions. Where did you stay? I am glad to hear you got back safe and that they were able to do something for you, and that there isn't any pain.
I sent you an email, then I read this post. Like I told you I work for the Dean A. Mgee eye instatute in OKC. We have 4 retinal specialist that I work very closely with daily and tommorrow I will demand any answer I can get from them!! LOL!! I'll let you know wht I find out. They are some of the best dactors in the country, we have people come from all over the world to fix mistake of other doctors, maybe one of them will have seen a case like yours?? We can sure hope....
Amy if you want I can send you doctors reports and MRI,MRA, and films if you think it would help.
I had Proton beam radiation treatment at MEEI in Boston back in Jan and they said it would take three to four months before I see any really good results. Since the treatment my vision has been getting worse and faster. I have already give up driving all together about a month ago. I hopefully will be starting school at the commision of the blind.
Did you get my email?? I talked to Dr. leonard today and he said that the best type of treatment (and something that is very new and a lot of doctors are not yet using)for retinal hemangioma is called photo dynamic therepy PDT. He said that he is willing to see you or that the absolute expert on this is a Jerry Sheilds in Phylidelphia. This type of therepy apparently is safer than radiation because radiation can cause other diorders in the future. If you want to contact him let me know and I'll get you in touch.
No I did not get youre email did you send it to firstname.lastname@example.org if not that is my email. I can not remember last time we talked, but I am interested in learning more about this doctor. Anything at this point to try on my eyes.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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