Hi Everyone!!!!!!!! April 2nd Shawn had hi 2nd MRI done and it showed he has a RIGHT CEREBELLUM VENOUS ANGIOMA. I have talked to a couple people and their stories are different Our neurologist here in pittsburgh says it has something to do with his SWS. The neurologist at John Hopskins hsp says it dosen't. His PWS is on the right side of his face)
I have looked on the internet and the stuff I read is really scary. Does anyone know anything about this?
Chasity:
Thanks for sharing Shawn's story. I see that you will be taking him to John Hopkins SWS clinic at the end of the month, but have you been there before? Please let me know your impressions of the clinic.
My grandson has SWS, will be 11 years old in less than 2 weeks, and is doing very well.
I really have no expertise, and I'm not familiar with venous angiomas, but typically SWS involves angioma of the meninges (outer layer of brain). What you describe sounds like something entirely different, but again, I'm not an expert. I would be interested to learn more about this. If you have any additional information, please let me know.
If you wish, you can email me privately at swsc@swscommunity.org.
There is a private group for parents/individuals/family/friends at MSN groups, with a chat group. If you would like to join, here's the address:
http://groups.msn.com/Sturge-WeberSyndro...tySupport/ There are a lot of great parents and individuals with SWS on the group.
Please let me know if there is anything we can do to help. I hope Shawn is doing well. Please keep me posted.
Glenda
This will actually be our first visit to John Hopskins Hsp. We will be there for 3 days seeing various doctors. I will let you know how it goes. We go to see our Neurologist here in Pittsburgh May 17 so hopefully they will explain things to me a little better. They said they will show me the actual MRI. When it was read it showed a right frontal lobe venous angioma and the right cerebellum venous angioma. The only things I know about the right cerebellum venous angioma so far is what I have read on the internet and it says on there that an angioma in the cerebellum area is more prone to hemmorage than an angioma anywhere else in the brain. But then again that was just information from the internet until I actually get some answers from the doctors I'm not sure what it is or what caused it. I'm very frustrated over all of this. If anyone knows more about this than me or if it was seen on anyone elses MRI please let me know.
Chasity:
I have found that sometimes doctors use medical terms interchangably. Some call Glen's port wine stain a hemangioma! So maybe this might be the case with your doctors, too.
Please let me know what you find out about the MRI, and also about John Hopkins. And please keep me posted on how Shawn is doing.
Hopefully, someone else reading the board will be able to answer some of your questions.
If there is anything I can do, please let me know.
Glenda