cavernoma activated by accident?

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Re: cavernoma activated by accident?

Postby Michelle2000 » Tue May 17, 2016 9:17 pm

Sue,

I'm sorry you are still having to fight this. My son's symptoms started the morning after he hit his head hard at wrestling practice. His NS said he couldn't prove that caused his bleed, but he thought it probably did. He was treated for a concussion at first, with the first doctor calling his CM an incidental find. I don't know what level of proof is required, but it seems like there is a strong correlation.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: cavernoma activated by accident?

Postby SueBlue » Fri May 20, 2016 11:56 am

Hi Michelle,
thank you for your reply. I think in my case the connection with my accident is being questioned as my seizures happened a fortnight post accident. I had a contusion and believe that the cavernoma bled slowly until it reached its impacting size.
We do not need 100% proof, but we do need medical evidence that a correlation between contusion and the bleed cannot be categorically excluded. Any pointers to other similar cases would be of great help!
Thanks again and best for you and your son,
Sue
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Re: cavernoma activated by accident?

Postby Michelle2000 » Thu Jun 02, 2016 2:47 am

Sue,

Have you asked on the closed Facebook page? I think I have read some other cases there. It isn't easily searchable (or at least I don't know how to do it), but if you asked you would probably get responses. I know Connie has said head trauma is risk factor, but I'm not sure what research there is.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: cavernoma activated by accident?

Postby Monica737 » Thu Jun 09, 2016 2:19 am

Hi,

I stumbled on this thread through a Google search and I'm glad to have found it. I have just under gone a very similar experience as yours and am just reading about this rare condition I find myself having.

I was in a traumatic car accident a few days ago where our vehicle rolled over several times and I got a nasty concussion from it. One of the investigative exams I was given in the ER was a CT scan and I was told that I had suffered a brain lesion as a result of the accident. A few hours later the ER Doctor consulted a neurologist who said I appear to have a cavernous malfunction. I'm 42 years old, I've never had a seizer, numbness, dizziness or the kind of headaches I've had ever since the accident. I wonder what unlucky coincidence had me bump my head in the same spot as my lesion during the accident and produced these incidental findings. To me it is very obvious that an accident can and did activate a cavernoma.

I'm due to get my first MRI in a few days and will find out more. I hope you find answers soon as I think I'm going to be dealing with the same issues as well. I will update you as soon as I know more, as this is all still days new and very confusing to me.
Go on and smash 'em. It's all atoms and faerie dust in the end! :-)
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Re: cavernoma activated by accident?

Postby SueBlue » Thu Jun 09, 2016 4:38 pm

Dear Monica,
first of all I'm sorry to hear of your troubles. Brace yourself for a lot of learning, patience and dealing with the side effects of your cavernoma, which are similar to effects of brain injury. Please get yourself a good solicitor and the best consultants possible.
You were lucky to be scanned right after your accident, as this is clear evidence of a connection. My problem is that they don't believe my haemorrhage a fortnite later had anything to do with the accident, although literature suggests that this can happen (type 2 bleed). You will discover how many people do not know anything about the condition, including your solicitors and many consultants. You will become an expert on the topic and do a lot of research, and you will need to help people understand your circumstances.
For now, I wish you a good start into recovery. Follow your brain's need of sleep and give yourself a lot of space. There is a whole journey ahead of you and your family now.

I feel for you, best of luck, a virtual hug and sunshine to you,
Sue
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Re: cavernoma activated by accident?

Postby MCP » Mon Nov 06, 2017 8:36 am

Hi Sue

Did you find any evidence in the end to prove your cavernoma bleed was activated by an accident?

I am in a similar situation to how you were, with two instances of cavernomas bleeding in the past, then nothing for 25 years until I was in a car accident!

Regards

Miles
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Re: cavernoma activated by accident?

Postby SueBlue » Thu Nov 09, 2017 11:06 pm

Hi Miles,
I'm sorry to hear about your situation.
My road traffic accident case is still ongoing. We got as far as proving that it never was a cavernoma, now we're on the journey of proving that my haemorrhage had anything to do with my accident. We're still trying to find an expert who is willing to write that into a medico legal report for us...
four years on...
Best of luck to you! Watch out for the red herrings and the hierarchies ;-)
Sue
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