Do I have This CCM or Angioma? Migraines & Fatigue R Symptom

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Do I have This CCM or Angioma? Migraines & Fatigue R Symptom

Postby Marcy » Tue May 15, 2018 10:44 pm

I have an appointment with my amazing headache specialist where I will demand a new MRI but in the 2012 one here is what I am reading. I’ve been struggling w migraines for 20-25 years & am done with it.

“small cavernoma the lesion measures 3 mm.”
“Another small subtle area of susceptibility Change, along the cortex of the left temporal lobe, that may represent another tiny cavenoma or area of pechtoral heme staining.”

“Post contrast there is an area of minor vascular blush with a small draining vein, consistent with a venous angioma corresponding to the cavernoma in the left temporal lobe”.

Thanks for any insight. Love & light to all.
Marcy in CT
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Re: Do I have This CCM or Angioma? Migraines & Fatigue R Sym

Postby Michelle2000 » Thu May 17, 2018 4:11 am

Marcy,

I am not an expert on radiology reports, but it sounds like you have a cavernous angioma with an associated DVA. It also sounds like it has seeped some blood in the past (the heme staining - hemosiderin is what is left when blood is reabsorbed - basically a type of iron).

Your doctor should have told you about this in 2012. Headaches are a common symptom for CCM patients, even though many doctors will say they are not related. You may want to consider an appointment with a neurosurgeon with CCM experience. Not that you need surgery, necessarily, but because NS are more likely to be an expert on them. A neurologist can manage symptoms, but you will learn more from a NS. You may want to look into one of the AA Centers for Excellence: http://www.angiomaalliance.org/pages.aspx?content=482

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: Do I have This CCM or Angioma? Migraines & Fatigue R Sym

Postby Marcy » Thu May 17, 2018 1:17 pm

Thank you SO much for the reply.
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Re: Do I have This CCM or Angioma? Migraines & Fatigue R Sym

Postby Michelle2000 » Thu May 17, 2018 4:22 pm

Marcy,

I should have added that fatigue is also extremely common. Brains that have been injured have to work harder and get tired more quickly. Hemosiderin is irritating to tissues, so even though you may not be actively bleeding, the remaining blood product from a previous bleed can cause problems.

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: Do I have This CCM or Angioma? Migraines & Fatigue R Sym

Postby Elizabeth » Sat May 19, 2018 3:47 pm

I agree 100% with Michelle. A lot of people with cavernous angiomas have headaches and often doctors dismiss the correlation but I think the dismissive MDS are probably wrong. I had headaches in my teens and 20s but thankfully they went away even as my cm was bleeding and growing. I think checking with some angioma experts might help you because regular neurologists seem mostly clueless about angiomas and my visits with them always left more questions than answers and usually frustration like all my complaints were "in my head"... :twisted: ...sort of correct...the angioma was in my head, but my complaints were very real...not imaginary at all.

I have terrible fatigue as a result of my brain inury and it is very slow to improve... Patience is the key...I'm still trying to learn patience myself even 7 years later.
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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