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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

Hi. I am Brenda and found out I have a cavernoma on my thalamus. I had pneumonia and it was discovered then. The doctors in Asheville didn’t know what it was so I sat with it for about a year and a half. Then I think it bled again and I went for another scan. I didn’t feel comfortable at all with the brain doctor. Kinda strange for going back. It stayed on my mind and I ask for a second opinion. Thank goodness his new doctor referred me to Duke. Within 30 mins the doctor told me I had a cavernoma. He sent me for a angiogram and a couple more test. I have to go back sometime before the end of the year for another scan. I’ve read a lot about these cavernous malformation but still have no idea what makes them bleed. That is my main concern. I want it to go away!! I try to go on with my normal life then I get scared I have made it bleed again. I also have to take blood thinner because I have a
Factor 5 Leiden. I have decided this is the new me but at the same time I’m not sure about the new me. I pray about it so I know I will have the answers I need. Thanks for letting me share. Brenda.

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?

Hi thank you for your response. I have symptoms of going out. I go to sleep. That is what happened on my first bleed. The second time was a mild one just made me feel out there. Not concentrated on anything. I am blessed I still work. We all have things to get through. I’m very blessed just wish I knew what made them bleed.

Liked by EES1

Hi all! Just wondering if anyone has had a cavernoma removed in the pons? I’m struggling with shocking pain on my right side. Does anyone have examples of these? What’s your experience? Please help!

Hello, @maria7521 — I moved your post on cavernoma in the pons here to this discussion about cavernoma, thinking that you would be most likely to connect with others with similar experiences here. Hoping members like @guzzie @caira @jeans, @bellisima, and @jc2buds, will offer more insight and have some suggestions to offer on the pain you've experienced. @kariulrich may also have some thoughts for you.

I also wanted to mention this helpful information on cavernomas, or cavernous malformations, from Mayo Clinic here: https://mayocl.in/2Ou4n4J.

What has your neurosurgeon said about the shocking pain on your right side, @maria7521?

Yes! I had one in 2006, I was 43 years old. I’d spent a month in bed due to severe nausea and vomiting all day long. I was admitted to Scottsdale healthcare on two different occasions and left each time still vomiting. They did multiple MRIs and Tests only to eventually tell me they could not do anything for me I would have to wait it out. They finally admitted I needed surgery but the location of the brain bleed was in such a high profile area they had nobody qualified to perform the surgery.

After much research by multiple people and family members I ended up at the Barrows Neurological Institute and Dr. Spetzler performed the surgery. After scouring the country for a qualified doctor we discovered Spetzler was considered the best in the world at this particular surgery and at that time. People came from around the world to see him, he even developed his own specialized instruments. Anyway, he saved my life and I’m perfectly fine and happy. Spetzler retired recently but his team is highly trained to smoothly continue his work. If you needed surgery I don’t know who would do it at Mayo?
I hope this helps!

@kanaazpereira

Welcome to Connect, @guzzie; you’ve come to right place to find people with the same diagnosis to share information and experiences with you. I can only imagine how anxious you must be with a diagnosis of Cavernoma or Cavernous Malformation. I’m so glad that @caira connected with you.
Caira, it must be so frustrating that you are not finding any relief from your medication. Hopefully, the new doctor will have more to offer; please do keep us updated.

@guzzie I would also like you to meet @jeans, @bellisima, and @jc2buds, who will hopefully offer more insight as they have dealt with this condition.

guzzie, when is your next appointment with the doctor? What steps do you need to take next?

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Hi @guzzie. Sadly I just realized this post was from 2016!!! Ugh! It came on my feed today.
If you’re still connected to this site but did you decide to do?

For others who may be going through this now…In regards to the comments about many neurologists not being able to treat Cav Mals that have bled out, BNI (Phoenix, AZ) and Dr. Robert Spetzler’s team have operated on thousands and my surgery was in Dec 2006.

My CM was at the back of my head at the top of my brain stem which they said was an extremely high risk/profile area “like Park Place in the Monopoly game!” Of course they told me that after my surgery was a success!
Spent a week in in-patient rehab at Health South in Scottsdale and around 3 months in out patient rehab there as well. Everyone who dealt with me and my CM was AWESOME!

Who would do it at Mayo or who wouldn’t do it at Mayo?

@kat9606

Yes! I had one in 2006, I was 43 years old. I’d spent a month in bed due to severe nausea and vomiting all day long. I was admitted to Scottsdale healthcare on two different occasions and left each time still vomiting. They did multiple MRIs and Tests only to eventually tell me they could not do anything for me I would have to wait it out. They finally admitted I needed surgery but the location of the brain bleed was in such a high profile area they had nobody qualified to perform the surgery.

After much research by multiple people and family members I ended up at the Barrows Neurological Institute and Dr. Spetzler performed the surgery. After scouring the country for a qualified doctor we discovered Spetzler was considered the best in the world at this particular surgery and at that time. People came from around the world to see him, he even developed his own specialized instruments. Anyway, he saved my life and I’m perfectly fine and happy. Spetzler retired recently but his team is highly trained to smoothly continue his work. If you needed surgery I don’t know who would do it at Mayo?
I hope this helps!

Jump to this post

Hi, @kat9606 — that's a high compliment that your doctor saved your life with your surgery for cavernous malformation (CM). That's wonderful.

You asked whether if someone needed surgery for CM, who would do it at Mayo Clinic? Here is some information on neurosurgeons (as well as neurologists) who treat this condition at the Mayo Clinic campuses in MN, FL and AZ: https://mayocl.in/2Mrj07G.

@kat9606, you also wondered about why you would be getting notified via email for a post from 2016. I realize that would seem puzzling. Though the discussion started with @guzzie in 2016, it's continued on till the present. You may have been notified of more recent posts by @maria7521@ees1 and @brenda68.

Have you had any residual effects from your CM surgery?

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/

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.

@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.

Jump to this post

@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?

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

@needanswers1974

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

Jump to this post

@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

@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?

Jump to this post

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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