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guzzie
@guzzie

Posts: 6
Joined: Oct 29, 2016

Cavernoma

Posted by @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?

REPLY

@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?

@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

Jump to this post

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.

@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.

@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.

@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.

@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?

@lisalucier

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?

Jump to this post

Physical therapy has helped with the total exhaustion. When I had the double vision, I basically sat on the sofa day after day. My muscles atrophied and walking from room to room became a reason for a nap! Exhausted. I have been on Meclazine for the dizziness. Im still dizzy. I will call today for a new Rx. This one is for dizziness and has Valium. Should be interesting. Hope it works.

@lisalucier

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?

Jump to this post

nothing was really mentioned at this time, In the mean time i have been having more migraines with nausea and vomiting , and been taking zofraine. with little relief. my days of having longer migraines seem to be getting more frequent. I am in the waiting trial for the new migraine medicine Aimovig.?? has anyone heard of this or tried it?? I guess people say it is good . so im hopeful for some relief if my insurance company will help with the exspense of it. in the mean time, it seems like i go day by day. I have been continuing to see my neurologist on a monthly basis and getting injections in my head for migraines. they seem to help great for like the first week than slowly sibe side after that. work is hard when i have a migraine, life in general just takes a toll on a person. any feed back ?

@gothope

nothing was really mentioned at this time, In the mean time i have been having more migraines with nausea and vomiting , and been taking zofraine. with little relief. my days of having longer migraines seem to be getting more frequent. I am in the waiting trial for the new migraine medicine Aimovig.?? has anyone heard of this or tried it?? I guess people say it is good . so im hopeful for some relief if my insurance company will help with the exspense of it. in the mean time, it seems like i go day by day. I have been continuing to see my neurologist on a monthly basis and getting injections in my head for migraines. they seem to help great for like the first week than slowly sibe side after that. work is hard when i have a migraine, life in general just takes a toll on a person. any feed back ?

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Hi, @gothope – you mentioned you will be taking erenumab (Aimovig) as part of a clinical trial, is that correct?

A couple of members who have mentioned this medication include @jean42 @laluzhiker. I'd like to invite them into this discussion to offer any thoughts for you about erenumab (Aimovig). They may also have some input on the injections you mentioned you get for migraines and how they seem to work the first week and then subside, plus the toll having a migraine can have on a person.

You mentioned work is hard when you have a migraine. How are you managing your work at those times when you are dealing with the symptoms?

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.

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

@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.

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

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 ??

@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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