Frontal lobe cavernoma

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Frontal lobe cavernoma

Postby NYC126 » Sun Dec 24, 2017 2:53 am

I have neurofibromatosis type 1 and I’m supposed to get yearly media. Last year there wasn’t anything signifant going on. This year they discovered a 1 cm cavernoma in my right frontal lobe. I guess it was there’s last year but it grew in size. I’ve been so scared about it since. Haven’t had any major side effects. Tonight i have a headache and can’t stop thinking the worst. How does one live knowing their brain can hemmirage at any time? My neurosurgeon just told me to go to an ER if the beaches get really bad.
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Re: Frontal lobe cavernoma

Postby Elizabeth » Wed Dec 27, 2017 1:51 am

Welcome, I'm sorry you are going through this. Its all very scary, I know. I don't know what neurofibromitosis is..guessing it means something about neuro-cellular changes or something. But I do know angiomas and the uncertainty. Easier said than done...is try not to worry. Worrying won't help, and I do it too so you're not alone. Nobody knows exactly why some bleed and others don't, or when they might bleed. Only recommendations I can suggest are: no blood thinners of any type(no advil, aspirin, alleve, etc)thin blood bleeds more so if you had a bleed while your blood is thin it could be worse, no rollercoasters, and no scuba diving. If you experience any really significant or new symptoms I think its a good idea to go to your doctor to get checked...just in case. Hopefully you just had a headache and it went away.
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: Frontal lobe cavernoma

Postby NYC126 » Wed Dec 27, 2017 2:40 am

Thank you! The headache did go away. I don’t think I have any bleeds right now. So what painkillers are ok? I do take something when I have a headache
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Re: Frontal lobe cavernoma

Postby NYC126 » Wed Dec 27, 2017 3:03 am

I also have high platelets counts. Docs never knew why. Could it be connected? Neurofibromatosis is a gentetic condition that causes tumors to grow on the body. I don’t have any in the brain itself but I do have in my scalp. That’s why I go for MRIs to monitor growth.
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Re: Frontal lobe cavernoma

Postby Michelle2000 » Thu Dec 28, 2017 7:01 pm

NYC126, welcome. I'm glad the headache went away. You should avoid medications with blood thinning properties, like aspirin or ibuprofen. Tylenol is OK. Blood thinners shouldn't cause a bleed, but if there is a bleed, the thinking is, thinner blood will bleed more, causing more damage. You can learn more here: http://www.angiomaalliance.org/pages.aspx?content=60

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: Frontal lobe cavernoma

Postby scuba_kiwi » Sat Jan 06, 2018 12:56 am

Hi NYC126,
Good news, I do know what neurofibromatosis is. And a cavernoma (I have had one for many years, and it has recently bled). Bad news - I can't tell you about your platelet count...ask your internal med doc, but I suspect it's unrelated.

I can give you this statistic - only .08% of cavernomas *ever* bleed - it's super, super rare. I've had one in my head for many years. During that time I've lived my life - I'm a scuba diver, have traveled the world, been to deep dark places and seen amazing things - with NO problems.
Back to you - If it hasn't bled - I won't say don't worry because it sounds like that horse has left the barn. But statistically you less chance than being struck by lightening - do you walk around worried about that? No. For your peace of mind, please get a neurologist at an academic institution (I actually mean a doctor who is likely to read up studies on cavernomas & headache)....and keep an eye on that demon raspberry. You have more advantage than me in this insurance, cost cutting world - they are already watching you for the neurofibromatosis. With any luck at all - you will be one of the millions and millions of people for whom this is no problem. I wish you well - go forth and live your life to it's fullest.

Me? I have no luck at all if it wasn't bad luck LOL! But...I just won awards for my photography and that's going to incent me through this very scary surgery. I am getting the best possible person to do it, I'm confident in science - and I'm going to fight my way back to swimming with Flipper by July.

Elizabeth - I can definitively say that there is NO medical reason for a person with a cavernoma (which has not bled) not to scuba dive. Intracranial pressure is not affected by scuba diving within recreational limits. If you want to double check on that, call Duke Hyperbaric Medicine, I can give you a contact. They are the backup for Divers Alert Network. These guys are in my backyard. I'm happy to help clear your mind on that.
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Re: Frontal lobe cavernoma

Postby Elizabeth » Sat Jan 06, 2018 5:43 am

Scuba kiwi,

Welcome! Those are the "general" recommendations we usually give everyone...we are not doctors nor are we giving medical advise but rather speaking from our experience and with the limited knowledge we have of the research and the posters background. Although, it might be fine for some people with cm to scuba dive...it might pose additional risks to others especially in terms of seizure risk. Here are the research based guidelines...there's a lot of info there. This would be a more complete list but maybe exhausting to someone new who wants a quick answer and to feel relatively safe without reading 20 pages. The activity recommendations based on the research can be found here on page 18 http://www.angioma.org/CCMGuidelines

Reading the entire document is advisable but might be overwhelming to some...so we try to narrow it down to a more digestible amount and language. Also, the water related restrictions are more likely based on seizure risk and its hard to know who might or might not have seizures. Frontal lobe is a common area for seizures with cms....but not a guarantee. Everyone is so different. We can help to offer support but your doctors really need to be giving out the medical advise...sorry if my answer was not helpful. Best wishes!
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
Elizabeth
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