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06-23-2008, 08:07 AM | #1 | |||
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Junior Member
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[F]Hi
My name is Amina, I was diagnosed with an cavernous angioma last year September and then re-diagnosed with a venous angioma. Presently Im doing research on this condition so that I can make a fairly educated decision with regards to having the operation and removing the DVA. I would love to hear from people with a similar condition or experiences. Before I was diagnosed I lived a fairly active life. I am a mum of two and I have a "sometimes" wonderful supportive husband. I have never really been sick before (childbirth excluded) so one morning on the 19 September 2007 when I got up I could not lift my head of the pillow, the entire room was spinning and I was nauseous. I could not even walk to the loo, to cut a long story short I was admitted into hospital for a suspected middle ear infection. By chance my ENT specialist suggested I go in for a MRI scan thats when the world turn upside down literally. They discovered a growth on my brain and I was referred to the best neurosurgeon in South Africa who told me that I had a cavernous Angioma. I then went to 2 more opinions and eventually I was told that I have a venous angioma from the same surgeon. I have been advised to have the operation and have it removed, my DVA is situation on the roof of the 4th ventricle. And apparently this is the worst place to have it as this is a life threatening area. Presently I am struggling with the decision to have or not to have the op. Im basically scared of having the operation, I am also struggling to come to terms with my diagnoses. Thats my story[/FONT][/FONT] |
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06-23-2008, 08:37 AM | #2 | |||
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Administrator
Community Support Team
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Hi Amina
so sorry to hear what you have been going through with your health and hope you find answers you are seeking here and much support. It isnt a condition I know anything about, but I hope and pray that you will have correct guidance on how to proceed and will make a good recovery I just wanted to say a special welcome as I am South African too, tho havent lived there in many years. Most of my family are still in Cape Town area. blessings and welcome to NeuroTalk. We look forward to getting to know you Cheri
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 08:42 AM | #3 | |||
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Grand Magnate
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Wow, Amina. Who can blame you for being scared?
I hope you are able to get some good information so as to make the right decision whether to get surgery. Welcome to NeuroTalk! Glad you found us!
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Rochelle . . I've lost my mind ... and I don't miss it! LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF! |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 08:57 AM | #4 | |||
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Wisest Elder Ever
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Hi Amina and welcome to NeuroTalk! I wish you the best as you make your decision on the surgery. That's got to be scary.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 05:41 PM | #5 | |||
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Senior Member
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I am sorry for the problems you have been needing to deal with!
However, I am very glad you have joined in with us all here! I think you will really like it here! There are so many different forums...I find many very intersting! I hope you find both the information and some of the support you would like here! Again, welcome Amina! |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 06:57 PM | #6 | |||
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Legendary
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Hello Amina, and welcome to NeuroTalk from an Australian with some South African friends.
At the top of the page you'll see a search option. I did one for you on cavernous angioma and these links are the results I got from that : http://neurotalk.psychcentral.com/se...g_searchinfo=1 Maybe if you were to try the other conditions that you mention, you may find others with similar issues to your own. Welcome again; it's so good to have you with us.
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Eastern Australian Daylight Savings Time and my temperature . Last edited by Koala77; 06-23-2008 at 09:23 PM. |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 09:06 PM | #7 | |||
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Wise Elder
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Hi Amina:
Just wanted to say hi and welcome also. What do the doctors say (if you choose not to have surgery).? Do you have any other options? Hard decisions ahead of you. You will find supportive friends here as well as lots of good information. You've been given good starting references. I most certainly wish you well. Melody
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. CONSUMER REPORTER SPROUT-LADY . |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-23-2008, 10:25 PM | #8 | |||
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Senior Member
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Hi Amina!! Welcome to our wonderful community!!
My Mom had brain surgery 10 years ago. She had a tumor inside the left ventricle. Her recovery has been long but she is doing so well. The words of advice I would like to give you...please..talk to your surgeon and also get some councelling for you and those close to you. This is such a big deal. None of us, including Mom, talked to a councellor regarding our fears and concerns. This we all believe was a big mistake...we were not prepared...Mom never told anyone of her fears of not waking up...she journaled but kept it all to herself and ended up with hoorifying anxiety.......please...do this for yourself..you won't regret it! Praying for you...take care!!
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. . LOVE DORRIE!! |
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"Thanks for this!" says: | Amina (06-24-2008) |
06-24-2008, 03:13 AM | #9 | |||
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Junior Member
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Thank you everyone for your kind words.
Melody the neurosurgeon dont know enough about this to give me a straight answer, they can only give me statistical information, people can live there lives with this condition and some people have bleeds which sometimes have dibilatating effects, and the decision to have the op is mine to make, if I have the op there are no guarantees that I will have no deficits. So basically Im stuck between a rock and a hard place. Koalla I will definately check this site out - thanks - I have two sister in laws living in Sydney and the Gold coast in Australia. I really like Cairns and the barrier reef. I am a member of the Angioma Alliance forum which is based in the States. One of the members there referred me to this site. I have had 3 opinions so far. 2 from neurosurgeons and on from a neurologist. My neurosurgeon here is Dr Frank Snyckers and he is highly respected in his field. I am also sending my MRI scans to a Dr Spetzler in Phoenix USA for a 4th opinion and he is one of the best in the States. All my friends on the Angioma site sing his praises. Dorre thank you - It is a very anxious time for me and I will be seeing a counsiler for sure. Chemar - Hi from a fellow native. where are you based now and do you miss SA. It is such a lovely country its just the crime that is spiralling out of control. Amina |
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"Thanks for this!" says: | Koala77 (06-24-2008) |
06-24-2008, 08:39 AM | #10 | |||
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Administrator
Community Support Team
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Quote:
I am married to an American, and we now live in Florida, tho we did spend 8 years in SA after we got married....he loved it there too. We had a place in Hout Bay valley and my kids were born there.
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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