my doctor just found a cavernous angioma on my cerebellum

Discussions of issues related to living with cavernous angiomas

my doctor just found a cavernous angioma on my cerebellum

Postby achenn » Fri Mar 31, 2017 2:32 pm

After a three week long headache, my therapist suggested I see a doctor. (Prior to this week, I have not seen a doctor in 5+ years.) The doctor referred me to a neurologist, who sent me out for an immediate MRI. Hours later the neurologist calls to say he saw a Cavernous Angioma on the left cerebellum. I have a follow up appointment to discuss more in-depth this afternoon.

My symptoms were/are - constant and persistent headache lasting 3ish weeks, short term memory loss, blackouts (I lose bits of time), mood depression, pressure in the head and ears.

To say I'm scared would be an understatement. A brief bit of googling has me more than concerned. What's going on? What can I expect short and long term?
achenn
 
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Re: my doctor just found a cavernous angioma on my cerebellu

Postby Elizabeth » Sun Apr 02, 2017 3:13 pm

Welcome,
I'm sorry you've been diagnosed but glad u found us. Try reading all you can on the main site especially the newly dx section... Lots of good information there. The general rules we suggest are: No blood thinners of any type(no advil, aleve, aspirin, etc) thin blood bleeds more and if u have a bleed while ur blood is thinned it could be worse, NO roller coasters, and NO scuba diving.

Chances are that you were probably born with this. It's most common to be diagnosed in your 20-30s although a dx can come at any age. You probably had a recent bleed and that's probably why you are suddenly symptomatic. Once the bleed reabsorbs, you will probably feel better, but might be left with some deficits or maybe seizures. The black outs, could maybe be seizures and so you should get that checked out since driving could be dangerous...etc. Read as much as you can and come back with any questions.
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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Re: my doctor just found a cavernous angioma on my cerebellu

Postby achenn » Sun Apr 02, 2017 3:41 pm

Thank you for your response, Elizabeth! I've been slowly making my way through all of the info on the site - it's a lot to take in but incredibly helpful.

My neruologist prescribed an anti-inflammatory called Indomethacin, which I'll go on for the next 4 weeks starting Monday. I also plan on seeing a cerebrovascular specialist for a second opinion/more in-depth analysis.

Fingers crossed..
achenn
 
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Joined: Fri Mar 31, 2017 2:28 pm

Re: my doctor just found a cavernous angioma on my cerebellu

Postby Elizabeth » Mon Apr 03, 2017 1:08 am

Humm....Anti-inflammatory sounds kinda scary to me...I'll google the drug and see what my opinion is, but most anti inflammatories are blood thinners. If its a blood thinner I personally wouldn't take it and look for another option fast. Its pretty normal after a recent bleed, for doctors to prescribe a short course of steroids to reduce swelling, but antiinflammatories are most probably contrainterdicated. I'll get back to you after I do a little reading.
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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Posts: 1622
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: my doctor just found a cavernous angioma on my cerebellu

Postby Elizabeth » Mon Apr 03, 2017 1:13 am

Oh...no way!!! I would fire the doctor that prescribed that drug immediately. Its a powerful blood thinner. I personally would NOT take that medication and look for another MD asap. I'm not a doctor so I'm not giving medical advise, but go find a new doctor fast...that guy doesn't know what he's doing.
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
Moderator
 
Posts: 1622
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: my doctor just found a cavernous angioma on my cerebellu

Postby achenn » Mon Apr 03, 2017 3:13 pm

That's what I was afraid of - definitely seeking a second opinion with a specialist. Until then, no blood thinners!
achenn
 
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Joined: Fri Mar 31, 2017 2:28 pm

Re: my doctor just found a cavernous angioma on my cerebellu

Postby Elizabeth » Mon Apr 03, 2017 4:43 pm

Yes, exactly!!! Good luck, I'm sorry your dealing with this and forced to become ur own expert too. Where are you? There are a few notable experts depending on where u are geographically.
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
Moderator
 
Posts: 1622
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: my doctor just found a cavernous angioma on my cerebellu

Postby achenn » Tue Apr 04, 2017 12:15 am

I'm in Los Angeles. I've spoken with specialty centers at both UCLA and Cedars Sinai. Nothing scheduled just yet, though.
achenn
 
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Re: my doctor just found a cavernous angioma on my cerebellu

Postby Elizabeth » Tue Apr 04, 2017 4:17 am

I'm in LA too. ;) you might want to see Dr. Neil Martin at UCLA. I saw him, but he wasn't a good fit for me. He's really smart though, but he was annoyed by all of my questions and sort of abrupt with me. He is considered one of the top experts though. You can also mail ur stuff to Dr. Spetzler in phoenix at Barrows. They will call you with an opinion and will answer all of your questions. These ordinary non expert neurologists are useless if not dangerous in my opinion. I saw 10 or more of them...all giving me bad/dangerous advise. If you have seizures there's a doctor at UCLA that is really good, he's the best neurologist I saw, but he only treats seizures. I'm blanking on his name right now though. Dr. Marc?
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
Moderator
 
Posts: 1622
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: my doctor just found a cavernous angioma on my cerebellu

Postby achenn » Tue Apr 04, 2017 3:46 pm

Thank you, thank you, thank you for your help and advice. I will have a look at Dr. Martin today.
achenn
 
Posts: 7
Joined: Fri Mar 31, 2017 2:28 pm

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