Diagnosed with left frontal lobe venous angioma

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Diagnosed with left frontal lobe venous angioma

Postby Angioma » Sun Apr 23, 2017 5:46 pm

Hi, Im 19 and was recently diagnosed with a left frontal lobe venous angioma. I was told that there were no tumors anywhere on the MRI, just the developmental venous anomaly/angioma.

My Ent had ordered the scan because of headaches I had been experiencing. He told me the anomaly was nothing to ever worry about and was an incidental finding.

Went to see my neurologist for clarification and she told me that all I have is a venous angioma that is nothing to really worry about. She also told me that there is no need to check it again. Also, she informed me that there were no ccms present on the MRI.

Now a couple of questions: Im looking for a second opinion in NYC. I saw columbia's James Kirkland Roberts come up when I searched their site. Has anybody heard of him?

I was also told I was probably born with this..if thats so, how come it was never mentioned(at least not to me) on the previous brain Mri's I've had?

Lastly, should I be seeing a neurologist or a neurosurgeon for a second opinion? Ive already decided that ill never have surgery for it(would rather live with it), but I just want a good second opinion on this issue.

Thanks!
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Re: Diagnosed with left frontal lobe venous angioma

Postby Elizabeth » Mon Apr 24, 2017 2:08 am

Welcome,
This is one of those rare occasions when I actually agree with most of what the doctor said. If what you have is a dva(developmental venous anomoly/angioma), most of what the Dr said is correct. DVAs rarely cause problems or symptoms on their own, but can be associated with one or more cavernous angiomas that might bleed and cause problems. DVAs should not be operated on or otherwise disturbed...they are a part of the critical blood flow in the brain, unlike a cavernous angioma. Removal of DVAs can and has resulted in death....don't touch the DVA is the rule is an associated cavernous angioma(cm) is causing problems and need removal. The only thing I disagree on is no more follow up. If you have new or progressive symptoms, I think an MRI is required.
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 with left frontal lobe venous angioma

Postby Elizabeth » Mon Apr 24, 2017 2:15 am

Sorry, my phone only allows short replys...here's the rest...:
So with any new or progressive symptoms I would suspect a cavernous angioma developed and could bleed and cause symptoms. If you were born with this and had previous MRIs, why is it showing up now??? I would guess...I'm not a doctor that the MRI you recently had is superior in quality and more is shown that was not shown previously or the previous "reading" of the MRI wasn't good. Maybe it was there but they didn't identify it??? Anything is possible. As far as second third, more opinions....I'm in favor 100%. I feel like knowledge is power. You can deal with whatever you know about and doctors make mistakes all the time. Where do you live? West coast? mail ur scans to Dr. Spetzler soon because he's retiring...at Barrows in phoenix
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 with left frontal lobe venous angioma

Postby Debi32355 » Tue Apr 25, 2017 8:40 pm

I saw Dr. Robert Solomon at Columbia (head of neurosurgery) when I was diagnosed with my CM and a DVA. Elizabeth is correct that a DVA should never be operated on, and rarely will cause any problem. But I am a big believer in second opinions, therefore, I will suggest Dr. Solomon to you.

You may want to ask him if this DVA would be causing your headaches, could you just be one of those people who are prone to migraines, or could there be another reason for the headaches. My recollection is that a DVA itself doesn't cause any kind of symptoms. It's very possible that your headaches are not related to it at all. My suggestion is that you make a written list of questions that you want to ask and bring them with you along with your MRI. He was very open to answering my questions and pointing out everything to me.

As far as follow up goes, DVAs really don't require follow up (sorry but I'm disagreeing with Elizabeth here). However I do agree with her that if you have new symptoms, you should get a scan, but also know that you can have a DVA and never develop a CM from it. I'm guessing that your headaches and your DVA are two separate incidents and have nothing to do with each other.

As you know, a DVA is congenital. I've had it all my life, but my CM was not diagnosed until my late 40s, and was told it had developed recently. I've had 5 hemorrhages, my CM is not considered operable, and, although I've made some minor changes to my life, I pretty much go on as I did before and don't dwell on this bugger. Best wishes to you.
Debi (CM at left midbrain/thalamic juncture with 5 hemorrhages)
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Re: Diagnosed with left frontal lobe venous angioma

Postby Elizabeth » Tue Apr 25, 2017 10:38 pm

Debi, thanks for chiming in too and ur suggestion of Dr. Solomon, I've heard good things about him before too. I don't think we're disagreeing on things though. I dont think DVAs require f/u either UNLESS there are new or progressive symptoms...in which case its possible a cm developed and could bleed... So an MRI at that time could be helpful. Pretty sure we're in agreement there. ;)
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 with left frontal lobe venous angioma

Postby Angioma » Wed Apr 26, 2017 6:53 pm

Debi32355 wrote:I saw Dr. Robert Solomon at Columbia (head of neurosurgery) when I was diagnosed with my CM and a DVA. Elizabeth is correct that a DVA should never be operated on, and rarely will cause any problem. But I am a big believer in second opinions, therefore, I will suggest Dr. Solomon to you.

You may want to ask him if this DVA would be causing your headaches, could you just be one of those people who are prone to migraines, or could there be another reason for the headaches. My recollection is that a DVA itself doesn't cause any kind of symptoms. It's very possible that your headaches are not related to it at all. My suggestion is that you make a written list of questions that you want to ask and bring them with you along with your MRI. He was very open to answering my questions and pointing out everything to me.

As far as follow up goes, DVAs really don't require follow up (sorry but I'm disagreeing with Elizabeth here). However I do agree with her that if you have new symptoms, you should get a scan, but also know that you can have a DVA and never develop a CM from it. I'm guessing that your headaches and your DVA are two separate incidents and have nothing to do with each other.

What made you want to go see solomon? Wouldn't it make more sense for me to see a neurologist for a second opinion rather than a neurosurgeon? Surgery is out of the question for me.
As you know, a DVA is congenital. I've had it all my life, but my CM was not diagnosed until my late 40s, and was told it had developed recently. I've had 5 hemorrhages, my CM is not considered operable, and, although I've made some minor changes to my life, I pretty much go on as I did before and don't dwell on this bugger. Best wishes to you.
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Re: Diagnosed with left frontal lobe venous angioma

Postby Debi32355 » Wed Apr 26, 2017 8:53 pm

I am in NJ and was first diagnosed at a local hospital. The neurosurgeon literally had an MRI done on me and then went on vacation without giving me the diagnosis. I had to call my primary care. So I sought a second opinion with another NJ neurosurgeon. He explained a lot to me, but also said that this was not his specialty and he referred me to Dr. Solomon.

I think to get your questions answered, a neurosurgeon would have more answers than a neurologist. I have found most of the neurologists I have seen have few answers. Dr. Solomon would probably also be able to refer you to a neurologist who specializes in this type of diagnosis and follow up.
Debi (CM at left midbrain/thalamic juncture with 5 hemorrhages)
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