My mother story – still praying and with hope

By Carlos Freitas

March 27, 2013

First of all, sorry in advance for my English since I am not English native.

Thanks for all the stories shared here and mainly thanks for the amazing job that Angioma Alliance is doing in terms of sharing knowledge, sharing experiences and providing the best info you can find about all CCM.

My mother Maria Conceicao, 69yo, married, born in Portugal but she is US citizen now living back home in Portugal born with a Cavernous Angioma deep down on her brain on left hemisphere. She been having seizures since she was young (believe from her early 20's), but while she was young the incidents/seizures were very sporadic & random episodes that even somehow were full controlled by some drugs (we dont know what she was having) that she was taking back in US. I think back then (40yrs ago) even the Doctor wouldn't know that she had some CCM since her first MRI was done back in Portugal on a later stage.

As my mum was getting older the frequency and impact of the seizures was increasing which originate a rapidly downgrade on her life quality and consequently in all her close family life.

On top of her Cavernous Angioma my mum is very pessimist and should say 'nervous type' of person and since she is also very conservative with 'fears' for many things which seems don't help her illness. During all this years she been followed by different Neurologists and Neuro-surgeons. MRI's were done almost every year and there was no progression of her Angioma which at least that was positive. Also my mother never bleed which is something important. Part of her Angioma (the far and edges areas) are now 'partiality calcified' since its a old Angioma. Some Neurologists did told me that calcified parts dont emit any sort of 'electrical signals' which could cause more seizures, etc..

My mum learn to live with her Angioma and she adapt her lifestyle (less travel, stop driving, etc), but as she is getting older i can see she is getting weaker to fight and resist her illness. For some reason Gamma-Knife was never been offered as potential solution and all Neurologist/Neuro-surgeons always made clear only brain surgery would fix her case. My mum is very religious person and she always fear the surgery. Finally, a couple months back, after a depression phase she had last year, she decided to go for surgery. We chosen the best (complete clean records, lots success cases, good private hospital) neuro-surgeon in Portugal, this doctor was already following her for past 15yrs. When day come all family was there and we all were so afraid for the surgery process and for the recovery but we never expected that surgery wouldnt be what we all desired.

She had a difficult brain surgery, she was in surgery room for 5hrs and the neuro-surgeons team decided not to take the risk as her angioma was located very deep down on her brain and also was all wrapped with small tiny blood vesels, so the risk was too high and they decided not to try to remove it. They open her scalp and close it again...Have to say this was worst day of my life as we all push her to do it and it was so hard to explain her that they couldn't remove it.. Just to say that this neuro-surgeon is known worldwide and famous in US. I think he done right think, since risk would be too high with non-predictable consequences..

After surgery she was/is exactly like she was before, no brain damage occurred during the surgery (we had access to surgery video). This happened September 2012 and now that she had to deal with her older brother and her sister dead her overall condition didnt improve at all. The frequency of her seizures increase alot this year (believe not because of surgery but due to the stress due her close family happenings, due to the frustration that surgery didnt work, also other issues btw her and my dad, etc.).

I am desperately looking for a Neurologist that can help her at least with some medication that can control her CCM. She is taking some drug for long time and i am not physician but i doubt it is doing any work, she is having Tegretol (carbamazepine) 1g/day (400+200+400mg) among some other drugs for depression. This was given to her 20yrs ago.

I live in Dubai but I am thinking in give up of an successful career life in order to go back home and treat her back in Portugal, but before would like to try to find some other Neurologist anywhere in the world that could help her in more effective way.. also would like to hear your opinion about new drugs that could in a way reduce the number of seizures and give her some life quality.

 Also, i was not aware that the rate to pass CCM to next generation would be so high.. i am 34yo, thanks God i never had any seizures or other symptoms but i want to get checked, with a MRI to confirm.. Also i have two brothers (27 and 36) that are in same situation as me, never checked, no symptoms.

 If you have comments or suggestions pls feel free to share,

Thanks to all, God bless you,

Carlos Freitas