CCM - strange sensation causing concern

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CCM - strange sensation causing concern

Postby DebbieW » Thu Nov 02, 2017 8:50 am

Hi all,

Hope everyone is as well as can be expected currently. I have a question and hoping that someone may have experienced similar / same symptoms and may be able to advise.

I have a CCM which has previously bled. This was discovered in July this year, after having tinnitus (not pulsatile) for about 2 months. Needless to say this is still ongoing, together with headaches (sometimes worse than others).

Since May when the tinnitus started, I have experienced dizziness, nausea, loss of balance, intermittent blurred vision, headaches, short term memory loss etc. Over the past 3 weeks or so, I keep feeling as though the top and right hand side of my head goes numb. I can almost feel it going numb and then the feeling coming back again. I was wondering if anyone else has experienced this please.

I need to add that I have some disc protrusions in the cervical spine as well as in the lumbar spine. This has caused sciatica issues and leg numbness as well as some nerve loss in my right arm.

However, the head numbness is what is concerning for me. I have not felt this previously. Could this be a sign of a new bleed? Or should I just watch and wait? I have no medical until January.

Thanks in advance and take care,
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Joined: Wed Aug 30, 2017 1:01 pm

Re: CCM - strange sensation causing concern

Postby Michelle2000 » Fri Nov 10, 2017 3:34 am


I don't know where your CM is located, but my son had many of your symptoms with his brainstem bleed. He is completely numb on the left side of his head/face from his jaw to the midline, except a small area behind his ear where his incision was. I am not sure when the numbness started (he was 9, scared, and had so many other symptoms), but it became more apparent after his surgery. Unlike yours, his has never left. I wonder if yours could be related to nerve irritation that relieves ???

Best wishes,

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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Joined: Thu Dec 02, 2010 7:40 pm

Re: CCM - strange sensation causing concern

Postby DebbieW » Fri Nov 10, 2017 5:49 am

Hi Michelle,

Thank you for your reply. Wishing your son a long future with as little issues as possible.

My CM is in the right cerebellum. Most of my symptoms as mentioned, are all on the right hand side (same side as the CM).

Once again, thank you and may you and your family be blessed in abundance.

Kindest regards,
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Joined: Wed Aug 30, 2017 1:01 pm

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