Greetings from Mae, CM "rocks" removed from R parietal lobe

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Greetings from Mae, CM "rocks" removed from R parietal lobe

Postby Mae » Sat Oct 02, 2010 2:16 pm

Update: I had the 2.5 cm lesion removed by Dr. Spetzler on Dec. 17th, at Barrow Neurological Institute in Phoenix, 2000+ miles from my home. It was so heavily calcified from many, many micro-bleeds that they had to break it apart and remove it piecemeal because it was attached to my motor cortex. They referred to it as a brain rock! I also had a secondary growth. Waiting to get the pathology report but they thought it looked benign.
+++++++++++++++++++++++++++++++++++++++++++++++
From my original post in Sept 2010......
I am middle-aged person in the USA, a Ph.D. student, a wife, mother, a daughter, and a person with a brain cavernoma. I have been very fortunate with my cavernoma, so far.

My bilobed cavernoma (2.2 x 1.5 x 1.2 cm) is in my right anterior parietal lobe. It was diagnosed by MRI w/and without contrast and a CTA Fall 2008, at age 50. There are no other vascular malformations elsewhere in my brain and an EEG was normal. Neurosurgeons I’ve consulted are divided about whether I am symptomatic or not. :? What sent me to the doctor was a severe headache that lasted for a few days that was associated with a bilateral sensation that my face was on fire. Not just hot, but on fire! The headache didn’t improve with over-the-counter meds. I had the same experience 6 years earlier at age 44 but didn’t seek medical attention because I thought it was due to my thyroid condition then. With that first episode, I recall being a bit confused, but my doctors tell me that this can’t be attributed to the cavernoma because it is not in “that” part of my brain. I have had these episodes about 6-8 times since the diagnosis two years ago. The first neurosurgeon I saw basically said that doctors don’t like to remove cavernomas and since she thought I wasn’t symptomatic, I simply learned as much as I could and hoped that I would remain in that group of people who don’t have symptoms. I get MRIs w/and without contrast routinely every 6 months to 1 year now. There has been no change in the lesion since the diagnosis. Now I have Fioricet to help with the pain.

However, the most recent radiologist said that because my lesion is heavily calcified and atypical, he couldn’t rule out the possibility of a neoplasm (a tumor, such as an oligodendroglioma, not a cavernoma). When I collected all of my radiology reports, I found that another radiologist had previously raised that possibility as well. So, I sought opinions from 2 leading neurosurgeons who specialize in cavernomas.

The neurosurgeon at one of the best hospitals and neurosurgery departments in the US, Johns Hopkins, who is the coordinator for cerebrovascular neurosurgery, thinks that mine is “definitely” a cavernoma, not a neoplasm. She also thinks that I <am> symptomatic; I am hemorrhaging (not leaking, but hemorrhaging) when I have these face-on-fire/headache episodes. Although she generally does not favor removing cavernomas, she thinks mine is becoming more active and therefore favors surgical removal. She prefers to do the surgery within 2 weeks after a bleed because the blood pool would allow her more room to work and therefore minimize the likelihood of damaging surround tissue.

The head of neurosurgery and coordinator of the cerebrovascular section at another major research hospital in the US, Univ. of Pennyslvania Hospital, believes it is “probably” a cavernoma. If it is an oligodendroglioma, it has not grown. He does <not> think I am symptomatic because my headache/facial burning is bilateral, not just on the left side. However, he said he could tell from my MRI that I had had at least 1 hemorrhage. He is slightly in favor of removing it now, at a time that is convenient to me, but is OK with having MRIs annually to see if it changes. If it does change or there are other symptoms, he definitely favors surgical removal.

Both of these cavernoma specialists agree that I should get a CT if/when those symptoms reoccur or if I have other symptoms, as well as annually.

I would probably be more comfortable with the idea of surgical removal if it were not for that fact that a childhood friend had a bad experience with cavernoma surgery. His cavernoma was in the same region as mine, the right parietal lobe, and about the same size as mine, except he had multiple symptoms beforehand. They never removed the whole thing, so it is still there, and he has at least 1 in his spine. He no longer goes for MRIs but believes that he has many lesions. Some symptoms improved with surgery, but he had many other negative side effects because of the surgery, leaving him disabled. He says his surgery also resulted in drastic, negative personality changes. His surgery was conducted about 10-12 years ago at the Mayo Clinic in MN, one of the top hospitals in the country. My friend was a medical professional himself who continues to read the medical literature on cavernomas. It is his opinion that medicine is an art, not a science, and that there are often many unforeseen negative consequences of neurosurgery that doctors never discover because they don’t follow patients for very long after surgery, and he is quite against surgery. My nephew is a radiologist and he also says, “No surgery!”

So, that is my story and my conundrum. Is it a cavernoma or a neoplasm or both? If a cavernoma, am I symptomatic or not? Surgery or no surgery? :? Again, I consider myself really very lucky. Thanks for listening. I am especially interested in learning about other people’s experiences with surgical removal of cavernomas, good or bad, as well as what life is like for those who live with cavernomas that are symptomatic. :?: Has anybody else been told your lesion might be a neoplasm? I thank you all in advance for sharing your stories with the rest of us and for your feedback, and thanks to those who keep this web site and organization going!
Last edited by Mae on Mon Dec 27, 2010 4:05 pm, edited 3 times in total.
Mae, CA right parietal lobe removed 12/17/10 @ Barrow. Cav mal found to have 3 distinct parts & to be heavily calcified-- called "brain rock" by surgeons.
http://angiomacommunity.org/forum/viewtopic.php?f=1&t=315
http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
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Re: Greetings from Mae, lesion in R parietal lobe

Postby PattiG » Mon Oct 04, 2010 11:43 pm

Hello Mae,
Yes, it's a very scary world living w/CM's and so many confusing answers out there! My heart goes out to you as you have a lot of emotions and unpleasantness to cope with all the while trying to do what's best for you.
Have you considered another opinion?? It's not unusual to get multiple opinions, or at least until you are 'comfortable' with the decision and direction of treatment. And you can get copies made of your films and send them ANYWHERE.
I'm on the west coast, so am less familiar whose the best over there, but I do know the following are reknown for specializing in CM's: Dr. Christopher Olgilvy, Boston, Mass, Dr. Issam Awad and Dr. Hunt Batjer of Chicago to name a few. I'm sure others on the forum know of someone in your area. Just keep asking.
I too had a bleed and surgery in the right parietal lobe. For more on that surgery (my 2nd), please visit: http://www.youtube.com/watch?v=2QhE4sAWuhc.

Best wishes to you,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Greetings from Mae, lesion in R parietal lobe

Postby Mae » Wed Oct 06, 2010 12:18 am

Thank you, Patti, for your understanding and support, and for sharing your beautiful video with us on YouTube.I will recommend it to my friends and family. It is informative and inspirational--you are doing all of us CM folks, and the general public, a service with this video.

I think I will get another opinion.

Take care and be well.
Mae
Mae, CA right parietal lobe removed 12/17/10 @ Barrow. Cav mal found to have 3 distinct parts & to be heavily calcified-- called "brain rock" by surgeons.
http://angiomacommunity.org/forum/viewtopic.php?f=1&t=315
http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
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Posts: 145
Joined: Wed Sep 29, 2010 10:40 am
Location: USA

Re: Greetings from Mae, CM "rocks" removed from R parietal l

Postby ihanna » Sun Jun 10, 2012 6:48 am

Mae wrote:Update: I had the 2.5 cm lesion removed by Dr. Spetzler on Dec. 17th, at Barrow Neurological Institute in Phoenix, 2000+ miles from my home. It was so heavily calcified from many, many micro-bleeds that they had to break it apart and remove it piecemeal because it was attached to my motor cortex. They referred to it as a brain rock! I also had a secondary growth. Waiting to get the pathology report but they thought it looked benign.
+++++++++++++++++++++++++++++++++++++++++++++++
From my original post in Sept 2010......
I am middle-aged person in the USA, a Ph.D. student, a wife, mother, a daughter, and a person with a brain cavernoma. I have been very fortunate with my cavernoma, so far.

My bilobed cavernoma (2.2 x 1.5 x 1.2 cm) is in my right anterior parietal lobe. It was diagnosed by MRI w/and without contrast and a CTA Fall 2008, at age 50. There are no other vascular malformations elsewhere in my brain and an EEG was normal. Neurosurgeons I’ve consulted are divided about whether I am symptomatic or not. :? What sent me to the doctor was a severe headache that lasted for a few days that was associated with a bilateral sensation that my face was on fire. Not just hot, but on fire! The headache didn’t improve with over-the-counter meds. I had the same experience 6 years earlier at age 44 but didn’t seek medical attention because I thought it was due to my thyroid condition then. With that first episode, I recall being a bit confused, but my doctors tell me that this can’t be attributed to the cavernoma because it is not in “that” part of my brain. I have had these episodes about 6-8 times since the diagnosis two years ago. The first neurosurgeon I saw basically said that doctors don’t like to remove cavernomas and since she thought I wasn’t symptomatic, I simply learned as much as I could and hoped that I would remain in that group of people who don’t have symptoms. I get MRIs w/and without contrast routinely every 6 months to 1 year now. There has been no change in the lesion since the diagnosis. Now I have Fioricet to help with the pain.

However, the most recent radiologist said that because my lesion is heavily calcified and atypical, he couldn’t rule out the possibility of a neoplasm (a tumor, such as an oligodendroglioma, not a cavernoma). When I collected all of my radiology reports, I found that another radiologist had previously raised that possibility as well. So, I sought opinions from 2 leading neurosurgeons who specialize in cavernomas.

The neurosurgeon at one of the best hospitals and neurosurgery departments in the US, Johns Hopkins, who is the coordinator for cerebrovascular neurosurgery, thinks that mine is “definitely” a cavernoma, not a neoplasm. She also thinks that I <am> symptomatic; I am hemorrhaging (not leaking, but hemorrhaging) when I have these face-on-fire/headache episodes. Although she generally does not favor removing cavernomas, she thinks mine is becoming more active and therefore favors surgical removal. She prefers to do the surgery within 2 weeks after a bleed because the blood pool would allow her more room to work and therefore minimize the likelihood of damaging surround tissue.

The head of neurosurgery and coordinator of the cerebrovascular section at another major research hospital in the US, Univ. of Pennyslvania Hospital, believes it is “probably” a cavernoma. If it is an oligodendroglioma, it has not grown. He does <not> think I am symptomatic because my headache/facial burning is bilateral, not just on the left side. However, he said he could tell from my MRI that I had had at least 1 hemorrhage. He is slightly in favor of removing it now, at a time that is convenient to me, but is OK with having MRIs annually to see if it changes. If it does change or there are other symptoms, he definitely favors surgical removal.

Both of these cavernoma specialists agree that I should get a CT if/when those symptoms reoccur or if I have other symptoms, as well as annually.

I would probably be more comfortable with the idea of surgical removal if it were not for that fact that a childhood friend had a bad experience with cavernoma surgery. His cavernoma was in the same region as mine, the right parietal lobe, and about the same size as mine, except he had multiple symptoms beforehand. They never removed the whole thing, so it is still there, and he has at least 1 in his spine. He no longer goes for MRIs but believes that he has many lesions. Some symptoms improved with surgery, but he had many other negative side effects because of the surgery, leaving him disabled. He says his surgery also resulted in drastic, negative personality changes. His surgery was conducted about 10-12 years ago at the Mayo Clinic in MN, one of the top hospitals in the country. My friend was a medical professional himself who continues to read the medical literature on cavernomas. It is his opinion that medicine is an art, not a science, and that there are often many unforeseen negative consequences of neurosurgery that doctors never discover because they don’t follow patients for very long after surgery, and he is quite against surgery. My nephew is a radiologist and he also says, “No surgery!”

So, that is my story and my conundrum. Is it a cavernoma or a neoplasm or both? If a cavernoma, am I symptomatic or not? Surgery or no surgery? :? Again, I consider myself really very lucky. Thanks for listening. I am especially interested in learning about other people’s experiences with surgical removal of cavernomas, good or bad, as well as what life is like for those who live with cavernomas that are symptomatic. :?: Has anybody else been told your lesion might be a neoplasm? I thank you all in advance for sharing your stories with the rest of us and for your feedback, and thanks to those who keep this web site and organization going!



Hello, Good day to you, my aunt has been experiencing the same thing and we don't know what to do. can we ask for some advice? I give you lots of hope and strength. More power and God Bless. Thank you :)
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