New Member from South Africa
 

[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:rolleyes:[/FONT][/FONT]

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

Wow, Amina. Who can blame you for being scared? :hug:

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! :Wave-Hello:

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.

Welcome, Amina!!!!
 

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!:D

I think you will really like it here!:D
There are so many different forums...I find many very intersting!:D

I hope you find both the information and some of the support you would like here!:D

Again, welcome Amina!:hug:

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.

Hello Amina:
Welcome to NT.

So sorry to hear what you are dealing with. I hope that you find
the answers you are looking for.

Join in at anytime even when you just want to talk about something
other then your problem. We listen and talk about everything there is
to talk about.

Jappy :hug:

Hello Amina and another Welcome to NeuroTalk here. I too, am sorry to hear of your health probs. Hopefully you can feel at home here and gather some info or advice that will help.

I wish I could be of more help to you, but I see our Koala has given you some good directions. Please join in anywhere and wer'e glad you found us.

http://dl4.glitter-graphics.net/pub/...b42v666z9w.gif

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

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!!:hug:

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

Thanks guys for all your kind words.

Hi, Amina! :Wave-Hello: Welcome to NeuroTalk!

Yes, I sure do miss SA and my beloved Cape Town:)
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.
http://i21.photobucket.com/albums/b2...ttic/htbay.jpg

Guys, furhter to my introduction emial I would like to share my experience hopefully it might help some one out there or it could help me if some has had the same experience

I got up one morning with a strange feeling that something was not right - I almost felt like I was awake but still living in a dreamworld - if you know what i mean -

That morning my husband got me up as I had overslept - now my husband never gets me up in the morning I usually get up by 6.45am naturally - so I thought to myself maybe Im feeling drugged because my husband got me up and I got up with a fright.

I went to work as normal but I was still in a daze the whole day. That evening we went out for supper and during supper I become very restless and agitated - i could not sit on the chair and I felt nauseous. As soon as we got home I went to bed.

The next morning I could not sit up in bed - The moment I lifted my head I started vomitting the entire room was spinning, I could not even stand on my own - My husband then took me to our family doctor. During the whole trip I was sick in the car, every small bump on the road felt like hell. I kept falling towards the left. I felt like dying.

My family doctor diagnosed me with inner ear infection and gave me an injection, she described my condition as sea sickness. She told me to call her if I dont get better by the next day.

To cut a long story short I started getting worst and I was admitted into hospital as having an inner ear infection the next day.

The ENT specialist that saw me in hospital said that I had a viral infection in my ear and gave me some hectic medication.

After being in hospital to 2 days I started feeling better by the fourth day I was discharged. But I still had a balance problem my ENT specialist suggested that I should get a MRI scan on my left ear just to make sure.

THATS WHEN THE #### HIT THE FAN - They discovered a white spot on my brain the ENT did not know what it was but he booked me to see a Neurosurgeon the next morning.

Dr Frank Snyckers who is the best surgeon in our country saw me and he told be that I had CA on my brainstem. The MRI scan showed 2 rings which meant that I have bleed twice previously. His advise was that it be removed as the CA had bleed and the changes of it bleeding again was greater. Also he said that Im young and if I bled again I could have a stroke etc. In disbelieve I went and saw another surgeon for a second appinion hoping against all odds that Dr Snyckers had made a mistake and this guy would tell me that its nothing and it will go away and I would wake up from this nightmare. He gave me the same diagnosis as Snyckers.

As far as I was concerned this was a death sentence, In my mind I was no longer invincible. I was going to die and my chirldren would loose their mother.

I then went back to see Snyckers and he explained to me what the procedure with regard to the op would be. So we decided that i would have the op in March as I had just started a new job and I did not want to take sick leave just yet. Snyckers agreed that I could have the op in March if I did no bleed before then.

He also advised me to grow my hair - as it will help with the hiding of the scars.

When I returned to work 3 weeks later I asked to be reallocated from my stressful position and moved within the company to a less stressful position. I also tendered my resignation as the Chairperson of our Body Corporation.

Now all I do is stress about the operation. My husband who is very strong mentally cannot understand why Im stressing.

Im scared of whats going to happen - will I die on that operating table.

How is the qualtity of my life going to be after the operation. WIll i still be able to walk, drive,work play sport etc.(live normally)

Just so you know Im a very active person- correction im hyper active.
:eek:
Amina

Thats Hout Bay alright, it is so beautiful. Cape Town on the whole is stunning. you would not believe the amount of development that is being done in CT due to the 2010 world Cup, in fact its happening all over SA.

Florida's has great weather as well (Hurricanes excluded)

I hope you come to visit soon, Im sure you miss your family very much:winky:

(((((Amina)))))
it sure sounds like you have been through a very scary time with your health. I am glad you have a good doctor.

I sure can understand your concerns about surgery....one stresses on even minor surgery so it must be hard not to worry on something major. Still, the best thing you can do for your body is to try your best to keep the stress down as much as possible. I hope you will maybe also be able to connect with others who have had the surgery so that you can hear first hand from them and hopefully be reassured.

I noticed we had another member join recently with angioma
here is their thread http://neurotalk.psychcentral.com/sh...ad.php?t=48578

:hug:
Cheri


ps I will trade ya the Florida weather for Cape Town's summertime south easter and wonderful Mediterranean climate anyday LOL. I have been here almost 20 years and I still cant tolerate the summer heat and humidity , plus the storms freak me out each year:eek:

You have been in the States for a long time- When I was there I saw the amount of damage the hurriane had done. It is scary, do have good weather here. But I guess thats life.

I am coming to terms with my condition and Im getting advise from one of the best neurosurgeons in the States.

Its 14.30pm Friday afternoon Ive just come back from a huge lunch (had copious amounts of seafood) and Im stuck at work - I wish I could go home.

PS Guys have a great weekend:grouphug: