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 3×3 now it is less than 1×1 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?

To the question about who treats cavernoma at Mayo Clinic, please read more about our team approach here: https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/care-at-mayo-clinic/mac-20360944

Additionally, you can hear and see our neurosurgeons talking about the latest advances in this video on Connect, where Dr. Bernard Bendok, Dr. Alfredo Quinones-Hinojosa, Dr. Robert Spinner and Dr. Fredric Meyer, the Chairs of Neurosurgery at Mayo Clinic, discuss the latest innovations and techniques in neurosurgery:
– #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

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I have been diagnosed with cavernoma,. I was told that I was born with it,I'm 43 and never had any symptoms until I got in a car accident. I was wondering if the car accident triggered the symptoms. I have headache's, seizures, and memory loss never had any of those until my car accident.

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@needanswers1974

I have been diagnosed with cavernoma,. I was told that I was born with it,I'm 43 and never had any symptoms until I got in a car accident. I was wondering if the car accident triggered the symptoms. I have headache's, seizures, and memory loss never had any of those until my car accident.

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@needanswers1974, welcome to Connect.
I moved your post to this existing discussion group in the Cerebrovascular Diseases group, so that you can connect with members like @kat9606 @maria7521 @ees1 and others.

That's an interesting hypothesis that the car accident may have initiated symptoms after being asymptomatic until 43 years of age. Have you proposed that idea to your doctor? I assume during the accident you jarred your head and/or hit it. How long have you been living with the symptoms of headache's, seizures and memory loss? How are you managing them?

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Was in a car accident and found out I have ccm.Having sesure's,very bad headache's and memory loss

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@needanswers1974

Was in a car accident and found out I have ccm.Having sesure's,very bad headache's and memory loss

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@needanswers1974 I moved your message to this discussion about cerebral cavernous malformations so you can connect with others. While we wait for other members to join the conversation, here is some useful information about CCM whether inherited or sporadic. https://ghr.nlm.nih.gov/condition/cerebral-cavernous-malformation

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@kanaazpereira

Hi @brenda68,

I'm so glad the new you shared her story on Connect – Welcome!
We have several members talking about cavernoma – please meet @ees1 @jeans @bellisima @jc2buds @nancye3 @pegorr.You may also be interested in joining this discussion:
– Meningioma and Cavernoma https://connect.mayoclinic.org/discussion/meningioma-and-cavernoma/

To answer your concern about why cavernomas may bleed, here's some detailed information from the American Association of Neurological Surgeons (AANS): http://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Cavernous-Malformations
I've copied a few key points, below:

"Since the walls of cavernomas are weak, cavernous malformations can rupture and cause brain bleeding — also referred to as a bleeding, or hemorrhagic stroke. Symptoms that suggest brain hemorrhage are sudden onset of severe headache, nausea, vomiting, weakness or numbness on one side of the body, difficulties in speaking or understanding speech, loss of vision, double vision and balance difficulties. Brain hemorrhage from a cavernous malformation is a serious form of stroke, but one that is typically nonfatal. "

@brenda68, have you noticed any of these symptoms mentioned above? Has your doctor outlined any specific treatment between now and your next scan?

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Hi,
I had an MRI last october with lesions on my brain, and was diagnosed with "MS", and have had many MRI since then , and recently my headaches have been getting more persistent and also, now i seem to be getting "dizzy " spells, and more nausea. which is a new onset for me. at the time i had the MRI last oct , they had seen a "spot" on my spinal column, which was concerning, but was assuming it was MS , related. and now i had another MRI, with the new onset of symptoms. at this time few weeks ago, they have now diagnosed the spot on my C2, of my spinal column, a cavernoma, not anything MS related, at this time they took me off all my MS medications and i am not to take anything, to wait till the next MRI to see if there is anything changes. to make sure the lesions in my brain are "MS', or tumors, of the cavernoma relation. i am just concerned. if i should be worried?? having these blood vessel type tumors?? he wants to do a biopsy of the one on my C2 spinal column but states it is to risky at this point till we for sure do the next MRI to see what or if there are any changes at that time. has any one else heard of this or anything else related to this. in october i had a second opinion , at the MAYO. and they were pretty consistent with the hospital i am currently going to the doctor with. i just am concerned with my light dizzy spells, etc.
thanks for listening… any information will be greatly helpful 🙂 thx

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@gothope

Hi,
I had an MRI last october with lesions on my brain, and was diagnosed with "MS", and have had many MRI since then , and recently my headaches have been getting more persistent and also, now i seem to be getting "dizzy " spells, and more nausea. which is a new onset for me. at the time i had the MRI last oct , they had seen a "spot" on my spinal column, which was concerning, but was assuming it was MS , related. and now i had another MRI, with the new onset of symptoms. at this time few weeks ago, they have now diagnosed the spot on my C2, of my spinal column, a cavernoma, not anything MS related, at this time they took me off all my MS medications and i am not to take anything, to wait till the next MRI to see if there is anything changes. to make sure the lesions in my brain are "MS', or tumors, of the cavernoma relation. i am just concerned. if i should be worried?? having these blood vessel type tumors?? he wants to do a biopsy of the one on my C2 spinal column but states it is to risky at this point till we for sure do the next MRI to see what or if there are any changes at that time. has any one else heard of this or anything else related to this. in october i had a second opinion , at the MAYO. and they were pretty consistent with the hospital i am currently going to the doctor with. i just am concerned with my light dizzy spells, etc.
thanks for listening… any information will be greatly helpful 🙂 thx

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Hi, @gothope. Welcome to Mayo Clinic Connect. Sorry to hear about the dizzy spells and nausea you are experiencing.

You may be interested in this Mayo Clinic information about cavernomas: https://www.mayoclinic.org/diseases-conditions/hot-flashes/symptoms-causes/syc-20352790

Hoping some of the members who've mentioned cavernomas will return and share some of their experiences, especially about having to wait to see if anything changes in the next MRI and potentially having a biopsy. I'd like you to meet @needanswers1974 @kat9606 @maria7521 @brenda68 and @jeans.

Since you also mentioned multiple sclerosis, I'd also suggest you check out this Connect discussion on that topic: https://connect.mayoclinic.org/discussion/ms-1/?pg=1#comment-126254

What does your doctor say, @gothope, about the dizzy spells you've been experiencing? Did they have any suggestions for managing this while awaiting the next MRI?

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@gothope

Hi,
I had an MRI last october with lesions on my brain, and was diagnosed with "MS", and have had many MRI since then , and recently my headaches have been getting more persistent and also, now i seem to be getting "dizzy " spells, and more nausea. which is a new onset for me. at the time i had the MRI last oct , they had seen a "spot" on my spinal column, which was concerning, but was assuming it was MS , related. and now i had another MRI, with the new onset of symptoms. at this time few weeks ago, they have now diagnosed the spot on my C2, of my spinal column, a cavernoma, not anything MS related, at this time they took me off all my MS medications and i am not to take anything, to wait till the next MRI to see if there is anything changes. to make sure the lesions in my brain are "MS', or tumors, of the cavernoma relation. i am just concerned. if i should be worried?? having these blood vessel type tumors?? he wants to do a biopsy of the one on my C2 spinal column but states it is to risky at this point till we for sure do the next MRI to see what or if there are any changes at that time. has any one else heard of this or anything else related to this. in october i had a second opinion , at the MAYO. and they were pretty consistent with the hospital i am currently going to the doctor with. i just am concerned with my light dizzy spells, etc.
thanks for listening… any information will be greatly helpful 🙂 thx

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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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@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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I will be 70 (yikes!) in a few weeks. I was told when I was 30 that I had a malformation, but not to worry about it. So I didn't. I woke up one morning in early February/2018 with horrible double vision. I live in Prescott, AZ, and there are ZERO neurologists up here that have any clue about cavernous malformations. I saw a neuro opthamologist. He dismissed me as a patient, saying he didn't know enough about my condition, and I was not to use his name if I went to the ER. Seriously? I finally found a wonderful neurologist up here, Dr Mackenzie, and he said to use his name if I go to the ER. BUT, he told me if it looked like I had had a major bleed, he would put me on a helicopter and send me on my way The Barrow Neurologic Institute in Phoenix. ( I have been to Barrow and saw Dr. Lawton. He told me I have 3 angiomas in the pons (left) area, and surgery is not an option. Too deep.)
Luckily, my symptoms are not too bad. Because of dizziness, I have not driven since February. I hate that part. I am pretty exhausted all of the time. My speech is slurred. I have difficulty swallowing. The double vision has pretty much resolved itself. No seizures. No nausea. I am in speech therapy. Right now we are working on swallowing. I am also in physical therapy working on strength and balance. Baby steps.
Luckily, I am retired and so is my husband. He is my full time chauffeur.
Baby steps.

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@surfwid

I will be 70 (yikes!) in a few weeks. I was told when I was 30 that I had a malformation, but not to worry about it. So I didn't. I woke up one morning in early February/2018 with horrible double vision. I live in Prescott, AZ, and there are ZERO neurologists up here that have any clue about cavernous malformations. I saw a neuro opthamologist. He dismissed me as a patient, saying he didn't know enough about my condition, and I was not to use his name if I went to the ER. Seriously? I finally found a wonderful neurologist up here, Dr Mackenzie, and he said to use his name if I go to the ER. BUT, he told me if it looked like I had had a major bleed, he would put me on a helicopter and send me on my way The Barrow Neurologic Institute in Phoenix. ( I have been to Barrow and saw Dr. Lawton. He told me I have 3 angiomas in the pons (left) area, and surgery is not an option. Too deep.)
Luckily, my symptoms are not too bad. Because of dizziness, I have not driven since February. I hate that part. I am pretty exhausted all of the time. My speech is slurred. I have difficulty swallowing. The double vision has pretty much resolved itself. No seizures. No nausea. I am in speech therapy. Right now we are working on swallowing. I am also in physical therapy working on strength and balance. Baby steps.
Luckily, I am retired and so is my husband. He is my full time chauffeur.
Baby steps.

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Hello @surfwid, Welcome to Mayo Clinic Connect. Thank you for posting.

70 is the new 50! And you have your own chauffeur! lucky you! 🙂 sorry to hear about your side effects from your angioma and that you lost your ability to drive. That's tough. Have you met with a swallow therapist to help you with your swallowing?

Keep taking those baby steps and moving forward.

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@jamienolson

Hello @surfwid, Welcome to Mayo Clinic Connect. Thank you for posting.

70 is the new 50! And you have your own chauffeur! lucky you! 🙂 sorry to hear about your side effects from your angioma and that you lost your ability to drive. That's tough. Have you met with a swallow therapist to help you with your swallowing?

Keep taking those baby steps and moving forward.

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I am in swallow therapy. We started with speech therapy, but the therapist thought we needed to start first with the swallow. I'm fine swallowing food, but choke on clear, thin liquid. I have purchased nectar consistency drinks from the grocery store. You can find them (manufactured by KERNS) in the International section of the grocery store.

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@surfwid

I am in swallow therapy. We started with speech therapy, but the therapist thought we needed to start first with the swallow. I'm fine swallowing food, but choke on clear, thin liquid. I have purchased nectar consistency drinks from the grocery store. You can find them (manufactured by KERNS) in the International section of the grocery store.

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Hi, @surfwid – I'd like to add my welcome to @jamienolson's. I'd like to invite @maria7521 @brenda68 @kat9606 @needanswers1974 and @hopeful33250 from this discussion to meet you. Hoping they may have some thoughts for you on choking when swallowing thin, clear liquid; dizziness; exhaustion and speech slurring.

How are you managing the exhaustion and the dizziness, other than not driving presently?

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