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?

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

caira | @caira | Oct 30, 2016
In reply to @guzzie "Hi @caira. I have not had seizures either, thank goodness. I have not been on any..." + (show)
@guzzie

Hi @caira. I have not had seizures either, thank goodness. I have not been on any meds outside of the hospital. In the hospital they had me on Keppra, some pain med I don't even know the name. Did they advise you the cavernoma would grow over time? I'm sorry you are in so much pain, you're right without being able to take any OTC pain relievers stinks, Tylenol is all we can take. My Neurologist is trying to set me up with an Interventional Radiologist and Vascular Cerebral Surgeon in Pittsburgh, PA. He says Interventional Radiologist is supposed to be cutting edge tech especially for hard to reach cavernomas, have your doctors recommended either? Neurologist feels it should be removed but has told me I maybe as bad as I was after the bleed, my speech was non existent. I have regained about 98% of my speech. My long term memory was never affected, short term memory I am still working on but most people do not see any deficits. I am so thankful, which is why I feel like seeing about surgery is rolling the dice, not sure if I could start over again. Neurologist says there a 1 to 4% chance of rebleed, don't know how much I can depend on that. Let me know about the pain med. Once I have names I will definitely share.

Jump to this post

About a year ago they tried to blame my headaches on my eyes too. I do t even wear glasses. I have 20/20 My eye doctor said that my eyes were not the cause. They were telling me at one point that my headache couldn't be cause by my Cavernoma because there is no nerves there to send pain signals. Another person with Cavernoma actually told me that she has the same pain I'm having and her doctor told her it was also impossible to cause headaches. I think they are just learning about what we have and they are just starting to learn what this is. For example my son had a allergy called FPIES it's a intestinal allergy. Took him to the ER when he had a attack and I had to tell them what it was and they had to look it up to know how to treat it because it's a very uncommon allergy. I don't blame them for not knowing but when peaople have rare thing not everyone knows how to diagnose and treat it. If you find anything that works for you please share and I will do the same. I'm making a appointment with Dr Saber to see if this is something that might work. I will let you know what I find out

REPLY
guzzie | @guzzie | Oct 30, 2016
In reply to @guzzie "Hi @caira. I have not had seizures either, thank goodness. I have not been on any..." + (show)
@guzzie

Hi @caira. I have not had seizures either, thank goodness. I have not been on any meds outside of the hospital. In the hospital they had me on Keppra, some pain med I don't even know the name. Did they advise you the cavernoma would grow over time? I'm sorry you are in so much pain, you're right without being able to take any OTC pain relievers stinks, Tylenol is all we can take. My Neurologist is trying to set me up with an Interventional Radiologist and Vascular Cerebral Surgeon in Pittsburgh, PA. He says Interventional Radiologist is supposed to be cutting edge tech especially for hard to reach cavernomas, have your doctors recommended either? Neurologist feels it should be removed but has told me I maybe as bad as I was after the bleed, my speech was non existent. I have regained about 98% of my speech. My long term memory was never affected, short term memory I am still working on but most people do not see any deficits. I am so thankful, which is why I feel like seeing about surgery is rolling the dice, not sure if I could start over again. Neurologist says there a 1 to 4% chance of rebleed, don't know how much I can depend on that. Let me know about the pain med. Once I have names I will definitely share.

Jump to this post

That is the truth, no one seems to know anything about Cavernoma. When I went to ER 3 weeks ago because of burning in my head, numbness on my right foot and headache I had to tell them what I had. ER doctor actually asked me how to spell Cavernoma then admitted he Googled it. The nurse said he learned something new as he had never ever heard the name.....if anything works I will most certainly share. Keep me updated on Dr. Saber.
I hope your son is stable and does not get to many attacks. Through everything we are going through our kids/family keep us looking forward one day at a time!!!

REPLY
guzzie | @guzzie | Nov 11, 2016
In reply to @guzzie "Hi @caira. I have not had seizures either, thank goodness. I have not been on any..." + (show)
@guzzie

Hi @caira. I have not had seizures either, thank goodness. I have not been on any meds outside of the hospital. In the hospital they had me on Keppra, some pain med I don't even know the name. Did they advise you the cavernoma would grow over time? I'm sorry you are in so much pain, you're right without being able to take any OTC pain relievers stinks, Tylenol is all we can take. My Neurologist is trying to set me up with an Interventional Radiologist and Vascular Cerebral Surgeon in Pittsburgh, PA. He says Interventional Radiologist is supposed to be cutting edge tech especially for hard to reach cavernomas, have your doctors recommended either? Neurologist feels it should be removed but has told me I maybe as bad as I was after the bleed, my speech was non existent. I have regained about 98% of my speech. My long term memory was never affected, short term memory I am still working on but most people do not see any deficits. I am so thankful, which is why I feel like seeing about surgery is rolling the dice, not sure if I could start over again. Neurologist says there a 1 to 4% chance of rebleed, don't know how much I can depend on that. Let me know about the pain med. Once I have names I will definitely share.

Jump to this post

@caira, hope you are well. Did you make contact with Dr. Saber? So, my neurosurgeon has recommended against seeing an Interventional Radiologist, we are going to discuss further on my next appointment on 12/12. I have been battling an ear/swollen gland inflammation this past week, I'm now on Amoxillian and Prednisone, I get terrible headaches from the steroids but can not take anything else for inflammation.

REPLY
caira | @caira | Nov 18, 2016
In reply to @guzzie "Hi @caira. I have not had seizures either, thank goodness. I have not been on any..." + (show)
@guzzie

Hi @caira. I have not had seizures either, thank goodness. I have not been on any meds outside of the hospital. In the hospital they had me on Keppra, some pain med I don't even know the name. Did they advise you the cavernoma would grow over time? I'm sorry you are in so much pain, you're right without being able to take any OTC pain relievers stinks, Tylenol is all we can take. My Neurologist is trying to set me up with an Interventional Radiologist and Vascular Cerebral Surgeon in Pittsburgh, PA. He says Interventional Radiologist is supposed to be cutting edge tech especially for hard to reach cavernomas, have your doctors recommended either? Neurologist feels it should be removed but has told me I maybe as bad as I was after the bleed, my speech was non existent. I have regained about 98% of my speech. My long term memory was never affected, short term memory I am still working on but most people do not see any deficits. I am so thankful, which is why I feel like seeing about surgery is rolling the dice, not sure if I could start over again. Neurologist says there a 1 to 4% chance of rebleed, don't know how much I can depend on that. Let me know about the pain med. Once I have names I will definitely share.

Jump to this post

I have filled out the form to apply for the testing but have not got a reply back yet. My headaches have got worse lately. I was back in the ER last week due to the severity of the headaches and dizziness. Since I have went 4 yrs with these I have noticed they get worse with the cold weather. I have a appt with a different neurologist that specializes in pain management for these in Dec so I hoping I have better luck with him. I will let you know what the outcome is with this doctor. They say the steroids help with the pain but I have not had any luck with them helping me. Good luck and I hope you feel better soon!

REPLY
brenda68 | @brenda68 | Jul 21, 2018

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.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 21, 2018

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?

REPLY
1 reply
brenda68 | @brenda68 | Jul 22, 2018

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.

REPLY
maria7521 | @maria7521 | Jul 30, 2018

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!

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 30, 2018

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?

REPLY
View MoreView Less
Please sign in or register to post a reply.