Hi. I am a 19 yr old male who is so glad he found this site. I have had intractable seizures since age 9 and have tried many different meds without success. I recently had brain surgery to remove the seizure focal area and was told that I had a leptomeningeal angiomatosis which is very similar (infact it is a synonym) for sws. I have never heard of this before and I do not have any sws on my face. The surgeon removed most of the lesion but wasnt able to get a little bit because it was too dangerous. I had a 70% chance it would cure my seizures. I am 3 weeks post op and havent had any complex partial seizures but still have the auras so I still cant drive or be independent. I didnt know sws was highly associated with seizures too. I am considering radiation treatment for the part of the lesion that was left in hopes it could be whats causes the residual seizures. For anyone with sws on the brain do you have any advice an what I can do since I have tried many meds and have had brain surgery for the seizures . Does anyone know anything about treating epilepsy with radiation(radiosurgery)? An oncologist told me to contact a sws support group becasue my leptomeningeal angiomatosis was about the same thing. Has anyone ever heard of this association? I know Im lnong winded but I desparately need help with the seizures. Thank You
Hi and welcome!
My grandson has SWS/PWS and was diagnosed as an infant. He is now 12 years-old and doing very well.
When were you diagnosed with SWS? What area do you live in and where did you have your surgery? I would like to hear more about your condition.
We will be chatting tonight, so please join us. Please register for the chat room. If you have any problems, let me know. We would love to talk to you, and hope to see you in chat!
Glenda
Im not sure how to sign up for the chat or how to do that yet. I need to learn more about this site. I had my surery 3 weeks ago in Atlanta Ga. and was told at the time of the surgery that I had a tumor called leptomeningeal angiomatosis. An oncologist said it was the same thing as SWS. Since my surgery I keep having auras and so my epilepsy surgery was helpful but not 100%. I am desparate to end these seizures for good through any way I can. I have had 2 brain surgeries for epilepsy now. Before the oncologist told me about SWS I had never heard of it at all so I am researching ad much as I can now.
I'm sorry I don't know your name (Scott? - first or last name, maybe?), but I would suggest you contact Dr. Anne Comi of the SWS clinic in Baltimore. I know there are alternate treatments, like the VNS to help manage seizures, but Dr. Comi would be the one to consult on this.
You can email her from our website:
http://swscommunity.org/expert/ask_comi.php
If you would like to talk, you can contact me at the phone number listed on the "Contact Us" link.
Glenda
Also, for Chat, click the Group Login link, and you should see the link for Chat.
thank you so much. I am Scott. I have been told by my neurologist that I am not a candidate for VNS and thats why I had the brain surgery. I am going on Wednesday to see a radiation oncologist who treats tumors and lesions of the brain in hopes that he can "kill" the part of the tumor that was left in me that they couldnt get to.
Scott:
Who is your neurologist, and is he/she an expert in SWS? I'm not sure of your condition, but do you have the birthmark on the brain, and any calcification? (Do you have pws on the brain or an AVM?)
Why is additional surgery required?
Are you living with your parents?
I urge you to speak to Dr. Comi.
Glenda
My condition is leptomeningeal angiomatosis which I am told is a similar disease but not exactly the same as SWS. My doctor is not an expert in SWS. I do live with my parents and am disabled. I cant have more surgery in the traditional fashion but I am considering radiosurgery (radiation treatment) becasue all of the LA in my brain could not be removed. My biggest interest in SWS is how it correlates to LA as far as seizures go. My main interest is to try to eliminate my seizures and I know SWS patients have this too. I have not been diagnosed with SWS, just told that my condition is in the same family. I dont believe I have calcification or a birthmark. I am really trying to find out all I can about how others are treating and curing their epilepsy. I am just desparate not to have the daily seizures anymore after 11 years.
Hi Scott, My name is Tom and I live in Canada. I'm 40 years old and 5 years ago I was diagnosed with SWS. They tell me I was born with it but my seizures only started in my mid 20's. So I kind of know what you're going through because I also have been operated on since Jan. of last year to remove a portion of my brain in hoping that it would stop my seizures. But I was given an 85% chance of not having seizures anymore but that I would come out of the operation half blind from both eyes.
I still have seizures like the auras that you have.
If you need to talk more about this, let me know and I can post you my e-mail address.
Talk to you soon hopefully.
Tom
Scott:
I hope you will talk to Tom. Also, I don't know if your doctor is an expert in vascular anomalies, but in any case, I have heard one doctor call a condition one thing, and another doctor call it something else. I know some doctors still refer to port wine stain as hemangioma. I would urge you to talk to Dr. Comi or another expert, especially before more surgery. I can give you the names and contact info for several doctors. If you would like to talk, you can email me privately or call me at the number listed in our contact information here.
I hope you don't mind me asking all these questions! Did your doctor say why you aren't a candidate for VNS? And if you don't mind my asking, who is your neurologist?
Glenda
My neurologist is Paige Pennell at the Emory Clinic in Atlanta. I really am impressed with her. I cant rememeber all the details about the VNS but I know I learned on my first trip to her I was not a VNS candidate. Then we went the surgical route. Tom if you still have the auras did the strong CP seizures go away? Do you drive now? I was give a 70% chance of curing my seizures. Actually I havent had a seizure in a month (since the surgery) but I still have the daily aurs (which are actually simple partial seizures). I dont know if I want to drive while having the auras but maybe I havent given my brain time to completely heal. I saw my MRI report today and it did say "calcification". I have a lot of questions for my neurologist and brain surgeon when I see them both in 2 weeks.
Scott:
First let me say that I'm in no way an expert on SWS, so anything I tell you is from my personal experience with my grandoson and talking with other patients, families, etc.
You don't have to have a facial port wine stain to have SWS. The pws is on the brain, and there are documented cases where there is no visible pws. Also, when you mention the calcification showing on the MRI, this leads me to believe that you may have SWS. The surgery you mention in relation to SWS causes me concern, but again, I am not a doctor or expert. Please contact Dr. Comi or another doctor who is an expert in SWS, pws related conditions, and vascular birthmarks.
As always, if you would like to talk, email me, call me or email me your number and I will call you.
Glenda
Thank you so much Glenda- I will talk to my mom
Scott:
Have you any news about your condition? Did you contact Dr. Comi? I hope things are going well for you. Please keep us posted.
Glenda