1. < Stroke & Cerebrovascular Diseases

Cavernoma

Posted by guzzie @guzzie, Oct 28, 2016

Hi, has anyone been diagnosed with a Cavernoma? I had a bad hemorrhage in July, they originally diagnosed me as having a stroke then cerebral hemorrhage. I have byeen in and out of the hospital until mid September when finally being diagnosed with Cavernous Malformation or Cavernoma. Neurosurgeon says to not do anything that most likely it will go dormant but my Neurologist wants me to see a Vascular Cerebral Surgeon. If you have a Cavernoma what treatment have you received? My bleed was 3x3 now it is less than 1x1 and starting to show some calcification. I'm not on any meds, can only take Tylenol for headaches which I do get daily. I have severe anxiety now, every pain I automatically assume another bleed. If you have been through this, how long did it last?

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placyhall | @placyhall | Feb 3, 2019

Hi Placy Hall. I’m sooo sorry you’re going threw same problem. 9/30/2018 I was diagnose with stroke and I was in ICU for 4 days, then the Dr. send me out of ICU, I was in the other room for a few Hrs, when star to feeling my left side going to sleep, I lose my vision on my left eye for a few min. I call the nurse, they run to get Dr. when I realize I was ones again in ICU. With my Stroke #2. Next day Dr. Flores neurosurgeon scripps La Jolla Ca. Give me the news that, I have caverneus malformation in brain stem. I was in hospital for over 2 weeks then transfer to a rehabilitation center

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placyhall | @placyhall | Feb 3, 2019
In reply to @kat9606 "Hi @gothope I’m very sorry to hear you’re in this situation. I’m glad you got a..." + (show)
@kat9606

Hi @gothope
I’m very sorry to hear you’re in this situation. I’m glad you got a 2nd opinion from Mayo and the answers were consistent. I had a brainstem cavernoma that bled out. It created tremendous nausea and vomiting on a daily basis throughout the day. All I could do was lay in bed with a cold washcloth over my forehead and eyes. This went on for four weeks and I was in and out of the hospital three times. Finally I was told my situation was too delicate for the local hospitals to address, I’m in Arizona, so I went to to the BNI at St.Joe’s in Phoenix where Dr. Spetzler specialized in cavernoma’s. He performed the brain surgery, removed the cavernoma and my life has been back to normal ever since....keeping in mind I went through PT at the hospital, I spent 1 week as an inpatient at a specialized treatment center called Health South and several months as an outpatient at the same place.
After the surgery I learned the intense vertigo symptoms I had been experiencing were the result of the brain’s inability to process the blood that was bleeding into it. Apparently the iron in the blood made the brain go haywire.
Did your docsmention the possible causes of your dizziness?
My MRIs showed the cavernoma was bleeding but my original docs wanted to wait for it to heal naturally. After a month of throwing up 10X/day day there was no way I was going to wait to see if it would heal itself. Truth be told the hospital finally admitted they were not equipped with a surgeon talented enough to perform the needed brain surgery because it was so delicate.

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Hi my Placy Hall 9/30/2018 I was diagnosed same problem as you. Few months later I had a visit with neurosurgeon and he told me to wait for a year to have n other MRI because I still have blood in my brain, and surgery was out of the ? Because a was very dangerous. But I have headache and nausea, my body hurt and I cannot sleep well. Do you think they can help me ? I’m sooo over it feeling bad every day.

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1 reply
placyhall | @placyhall | Feb 3, 2019

Me Placy Hall! The neurosurgeon told me caverneus malformation in brainstem, same as Cavernoma

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placyhall | @placyhall | Feb 6, 2019

Good Question! I had similar occurrence with me I have caverneus malformation of brainstem. I was I hospital for a month. Now I’m sacare of everything, I cannot sleep, have bad anxiety and panic episodes. Do you feel same as me ??

REPLY
Lisa Lucier | @lisalucier | Feb 7, 2019
In reply to @placyhall "Hi my Placy Hall 9/30/2018 I was diagnosed same problem as you. Few months later I..." + (show)
@placyhall

Hi my Placy Hall 9/30/2018 I was diagnosed same problem as you. Few months later I had a visit with neurosurgeon and he told me to wait for a year to have n other MRI because I still have blood in my brain, and surgery was out of the ? Because a was very dangerous. But I have headache and nausea, my body hurt and I cannot sleep well. Do you think they can help me ? I’m sooo over it feeling bad every day.

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Hi, @placyhall, and welcome to Mayo Clinic Connect. I'm sorry to hear you still have blood on your brain and also suffer headache and nausea, body aches, anxiety, panic episodes and insomnia. I can imagine that would be very challenging.

Hoping that members in this conversation like @gothope @surfwid @kat9606 @brenda68 @maria7521 @needanswers1974 will return and offer some suggestions about remedying these symptoms you are experiencing. I'd also like you to meet @jenniferhunter and @hopeful33250.

If I understand correctly, @placyhall, you have experienced two strokes due to your cavernous malformation?

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Lisa Lucier | @lisalucier | Feb 12, 2019
In reply to @thatstrangeone "I know that I'm really late to the party but I feel like I have some..." + (show)
@thatstrangeone

I know that I'm really late to the party but I feel like I have some helpful input on the subject at hand. I was 6 when they told me I had a cavernoma, and my mom flipped her lid because they originally thought it was a cancerous tumor. They took me to the urgent care office near me for a CT scan because I had a seizure during nap time at school, and they saw a tumor. My 6 year old self with autism had absolutely no idea what was happening and all I knew was that I was in a hospital getting pampered like crazy and that I couldnt eat much and it sucked. Because I'm fat. It was on my left frontal lobe and it was the type that got worse the longer it stayed in the brain so they surgically removed it. The only effect I've had is that due to my 6 foot 300 pound frame I've decided to play football, but I think even with the brain surgery that I'll be fine because the chance of me getting a concussion is still the same as the next guy.

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Hi, @thatstrangeone - that is an encouraging story that you have had your cavernoma surgically removed and have been doing well enough to play football. Have you noted any other aftereffects of your surgery, then?

@surfwid - how is your dizziness? How is your new prescription to help with this working for you?

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