Diagnosed 9/14/17 with cavernoma at base of brain

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Diagnosed 9/14/17 with cavernoma at base of brain

Postby heathflick » Fri Sep 15, 2017 9:56 am

I don't know anything about this. I am scared to death. It was found by chance on an MRI because they thought I had a herniated disc in my neck. They found staining? Does that mean it has bled? I was driving home from work and my left arm started hurting like crazy, I thought I was having a heart attack. I'm 40 yrs old by the way. I went to the chiropractor and doctor to get relief from the pain. Found a small herniation between my c5 c6. I have been in pain now for almost 4 weeks. The cavernoma is 9mm diameter at the base of my brain. I have had a headache now for 4 straight weeks. Also i forget everything, i lose everything, my husband bought me a car with a push start because i always lose my keys, and a front door lock that takes a code because i forget where i put everything. I feel like i always have a headache, going on 4 weeks straight now. I go to the neurosurgeon on Monday but I'm still scared. Any info or anything would be great. I read that the staining is a sign of a bleed. God only knows what's in the rest of my brain.
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby Elizabeth » Wed Sep 20, 2017 5:47 am

Welcome,

I hope your appointment went well on Monday and you got some answers. As far as your symptoms...I'm not sure if the pain would be from your disc problem or your cavernous angioma. The tricky part could be getting the disc part to calm down without antiinflammatories which can thin blood. With a cavernous angioma, we usually recommend no blood thinners of any type. You will want to read as much as you ca, especially the newly diagnosed section so you can ask the doctors the right questions. If you can't remember anything, maybe a family member or close friend could help you.
When you say "base of the brain" is that brainstem or do you know the exact location? "Staining" I'm not sure what that means exactly. Usually the terminology says something about hemosiderin... Which is old blood...new blood is usually called hyper intensity. Sometimes they call it "blooming" if there is old blood and new blood visible inside the angioma. If you list out what the report says I could try to offer my best guess of what they say they saw...I'm not a doctor...just a patient that spent hours and hours trying to understand my own case.
Being scared is totally normal, we've all been there...but the truth is...most likely you will be fine. Come back with any specific questions, and we will try to help.
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: Diagnosed 9/14/17 with cavernoma at base of brain

Postby Michelle2000 » Wed Sep 27, 2017 12:24 am

Welcome, heathflick,

I hope your appointment went well and you are feeling better.

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby DebbieW » Tue Oct 03, 2017 11:09 am

Hi all,

Sorry to jump in, but i have a question of my own here and hope someone can shed some light please:

I would like to ask a question, to your point above regarding the bleeding please. Hope you are able to help me with this.
The interventional radiologist wrote: "Adjacent to the DVA, a small area of blooming is seen on hemosiderin imaging, probably related to a cavernoma" This is in my right cerebellum hemisphere. Does this sound like there is new and old bleeding? Should I be concerned? I have not been given sizes, grades or anything else that people mention. I am really struggling with severe headaches, nausea, high pitched ear ringing, dizziness etc.

Thank you so much,
Debbie
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby Michelle2000 » Tue Oct 10, 2017 2:58 am

DebbieW,

I am the last person to ask about MRI report language - it always confuses and scares me. I suggest you post this question as its own thread on this Questions and Answers forum so someone who can help is more likely to see it. Have something about needing help understanding the MRI report be the subject. You may also mention DVA/CM in the subject.

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby DebbieW » Tue Oct 10, 2017 7:15 am

Thank you so much Michelle. I appreciate your advice and assistance.

I have taken your advice and posted.

Take care,
Debbie
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby Elizabeth » Fri Oct 13, 2017 12:22 am

I'm sorry for my delayed response. I'm not a doctor but my best guess at the report terminology is "probably an angioma that has old blood aka " hemosiderin " near a dva. "Blooming" is usually just a word to describe the type of lesion. Angiomas tend to "bloom" on MRI because the blood inside the "caverns" lights up. I don't see anything that seems to indicate a new bleed which is usually read something like "T2 hyperintensity"

With all that said...clearly your doctor should be more knowledgeable and more helpful than I am...sadly not always the case. If you don't like or agree with your doctor... Seek out expert opinions.The experts can tell you if its bked and about how long ago, as well as about how many times.That's the only way I could get any straight answers. The rest of the clowns I saw, knew less than I did...not reassuring. :(
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: Diagnosed 9/14/17 with cavernoma at base of brain

Postby DebbieW » Fri Oct 13, 2017 6:34 am

Hi Elizabeth,

Thank you so much for your response and helping me understand a bit more.

I am considering seeing another doctor, as the neurosurgeon that I saw, who sent me to the interventional radiologist, says that he does not need to see me again. Sadly, this will need to wait until the new year, due to lack of funding. There really are some clowns around, who are just out there to make loads of money from us. I think the reason is because Angiomas in general are not very well known about by the general public.

I think I was also so blown away with being told what they had discovered, that I forgot (memory loss) to ask about the previous bleeds, how large etc. Hopefully when I see a different specialist in the new year, I will be more prepared and knowledgeable, that I can ask all the relevant questions and obtain answers.

Again, thank you and take care,
Debs
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Re: Diagnosed 9/14/17 with cavernoma at base of brain

Postby Elizabeth » Fri Oct 13, 2017 2:56 pm

Yes, it is not uncommon to get bad, wrong, even dangerous advice for "us". Most doctors know very little about cavernous angiomas. One guy I saw told me, " oh its nothing....just like a birth mark." Duh....nope...WRONG! Unless you are talking about a birth mark that bleeds into your brain and can cause seizures and disabilities.I don't know anything about doctors in your part if the world, but here...I saw a lot of "misinformed" doctors. As far as i know, you can still consult with the doctors at Barrows in Phoenix. When Dr. Spetzler was there, international patients could mail in their scans and he would provide his opinion for free. Hopefully Dr. Lawton, Dr. Spetzler's replacement, continues the offer. You can reach out to them, so that at least you have a good opinion for little or no cost.
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: Diagnosed 9/14/17 with cavernoma at base of brain

Postby DebbieW » Mon Oct 16, 2017 5:50 am

Thank you so much Elizabeth,

I will certainly investigate that option, as there does not seem to be many knowledgeable specialists here.

Thanks again for the advice,
Take care,
Debs
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