A disturbance in the Force

Discussions of issues related to living with cavernous angiomas

A disturbance in the Force

Postby Libby » Wed Oct 13, 2010 6:11 pm

A week ago Sat I was having a great day and called my friend at 11. By 11:30 when she called back, something had happened in my brain. It definitely was not a major bleed. Maybe a drop or two. Maybe a little infection or flu. I don't know. I knew when she called that I wasn't right, but I wasn't horribly wrong either. We went for a drive to see the foliage. I mean, we live in Maine. However,suddenly I had that stimulation overload of color EVERYWHERE and looking and it felt like each tree was just slapping me in the face and taking part of my brain with it. It was bad. Beautiful, but BAD! :shock:
The next day I moved into my "high anxiety" mode that was such a problem after the big bleed in 99. I just got through the next couple of days because the rest of me cognitively seemed ok.
Next day I was fine and on the computer when my left arm and left leg got all tingly and numb. Alarming? Yes, but they would still do what I told them to do. When I start to get nervous, but not really really worried, I go to bed. My theory is that I will either be worse in the morning and call the doctor or it will pass. (I really wouldn't reccomend this to anyone who has this as a sudden NEW symptom.)
It passed. No more trouble in anyway. I am volunteering, going to class. It is just amazing how much I have been out of the house! AND I LOVE IT! Life is good! :D
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: A disturbance in the Force

Postby heidihi » Thu Oct 14, 2010 12:25 am

Hi LIbby,

Glad your ok... When that happened to me, the tingely, numbness, prickley thing I was actually bleeding and it did clear up but the next day I went into surgery after being transferred to a higher level of care. They told me I had bled twice within a week... I never imangined this was going on. Don't want to scare you but maybe you should advise your doctor just to be sure and see what he or she wants to do...
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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Re: A disturbance in the Force

Postby Libby » Thu Oct 14, 2010 1:34 am

I'm not easy to scare. If you have never had the feelings before, I believe you should probably call your doctor, I have had 8 significant bleeds - and I recognize them when I have one. My brain suddenly doesn't work like it did before.
For me, and I am speaking only for myself, they are not operating on me. Even on the significant bleeds I was only in the hospital once (Winter of my discontent) As long as it passes and leaves no new damage, that's all I need to know.
And soon I'll forget :D Seriously if it happens again in the near future, I will call. But it is often difficult for me to see the point in that.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: A disturbance in the Force

Postby heidihi » Thu Oct 14, 2010 3:27 am

Hi Libby,

I totally understand what your saying... It's such a known thing to you, it must be hard when it happens more often than not.

I guess mine had bled so much emergency surgery was needed asap! I had totally lost my ability to walk by the time I got to the ER! I was terrified to say the least, my poor husband held together really well but I know he was also very worried... I also had a seizure as soon as we got to the hospital. But I am here, no need for me to dwell right?!?! And my CCM Is supposively gone but I am still healing and unable to work due to weakness.

To me it also sounds like a seizure you may be having ?!?!

I am a Nurse but I certainly have lot's to learn ;) Hope you've since fully recovered. Keep me updated.
Heidi
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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Re: A disturbance in the Force

Postby Elizabeth » Thu Oct 14, 2010 6:32 am

Libby,
You are so funny! Glad to hear things went back to "normal" and you seem to be doing well. If that happened to me...I'd be in the ER in about 2 seconds :lol:
Take care,
Elizabeth
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: A disturbance in the Force

Postby PattiG » Thu Oct 14, 2010 2:49 pm

Libby,
Ditto, Elizabeth!!
Elizabeth wrote: If that happened to me...I'd be in the ER in about 2 seconds
Then I would have my husband contacting my NS asap!! ;)
Take care and congrats on volunteering - yay Libby!
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: A disturbance in the Force

Postby Libby » Thu Oct 14, 2010 4:57 pm

I am not saying I didn't freak out, but I always freak out after the fact (That is why I was good with behavior kids). As soon as the day came when I realized it had passed, I got wicked freaked out. It really was scary, BUT it is over. I kind of look at it as a Godsmack to make me realize how good things are right now. :D
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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