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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

About 4 years ago I got a excruciating headache. I’ve never had headaches before. I would only get a headache once every couple years. It was so bad after 2 days I went to the emergency room because it was like no headache ever. I thought my eyes were going to pop out of my head. They originally diagnosed me with a aneurism. Then they did more tests and said it was a Cavernous Malformation. I was in the hospital for 14 days at U of M in Ann Arbor, MI. My Cavernoma is in the left frontal lobe. It was only 3mm when this happened. It is now 6mm. They have sent me to Neurosurgeons, Neurologists and now pain management. The Neurosurgeon said they don’t want to do surgery do to it being so deep in my brain. Neurology tried every drug imaginable and nothing worked. They put me on Oxicodone which doesn’t take the pain away but makes it manageable. I have done nerve blocks which is 6ahots in my head to see if that work but it didn’t. They have tried Keppra, lamitctal, god there is too many to count or remember and nothing seemed to work. Now my pain management went Opiate free and they want to put me in some drug called Suboxone but I heard it’s a ugly drug and don’t even want to try it. Now I am in major pain daily with no relief. I take Norco but it seems to make my stomach feel yucky. Since you can’t take anything like Asperin, Alieve, Motrin or any NSAID it makes it hard to try to find something to take. I have also had anxiet due to this because you feel like your just going to hemerage it hurts so bad. A lot of people have seizures due to Cavernomas but I don’t have them. Hang in there I heard about a doctor in Ann Arbor that has found a new trial drug to help the pain. When I locate his name I will share. If you hear of anything please do the same. Hopefully people like us will find relief one day.

Hello @caira. Thank you for your post. I am sorry that you are not finding any real relief from meds. I did some research online and found this on the NIH website http://www.ninds.nih.gov/disorders/cavernous_malformation/cavernous_malformation.htm. and this from Mayo’s website http://www.mayoclinic.org/diseases-conditions/cavernous-malformations/basics/definition/CON-20034425. In these websites speech difficulties are mentioned as well. I am hopeful that you will find some relief as you consult with the new doctor in Ann Arbor. Please keep in touch, at Mayo Connect we want to walk with you on this journey to renewed health.

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.

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?

@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 @kanaazpereira, thank you for welcoming me and introducing @jeans, @bellisima and @jc2buds. I hope all of you are well.

I am waiting on my Neurologists office to set up the appointment with Interventional Radiologist and Vascular Cerebral Surgeon. I will let you all know when I do. As for right now my next MRI is scheduled for 12/12. If all looks good I should be able to return to work full time in January. I have my fingers crossed.

@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.

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@guzzie they did a angiogram and said that their is 2 different kinds of Cavernoma. One is extremely bad and that one can respond to radiation. The other kind is still dangerous but it does not respond to radiation. I have the later one. They don’t think radiation will work on me. Dr Saber is the name of the Neuologist that is doing studies on a drug for headaches. Here is a article I have seen. He was on a commercial for the same thing recently. https://www.google.com/url?sa=t&source=web&cd=2&ved=0ahUKEwis0qTK14HQAhXMLSYKHcBRChIQFggeMAE&url=http%3A%2F%2Fdetroit.cbslocal.com%2F2016%2F10%2F10%2Fmigraine-sufferers-sought-to-test-new-medication-in-ann-arbor%2F&usg=AFQjCNEzo5TrP-1o6MaWY_G705pMXSd0kg&sig2=6rrTsthWW-vfTwQe1d_www

Not sure if this drug will work. At this time though I’m like you I’m willing to take a chance to feel some relief.

@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.

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@caira Thank you for sharing the website for the doctor in Ann Arbor and the clinical trial for the new med!

@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.

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Your welcome @hopeful33250. This new med is for headaches but most of us with a Cavernoma have headaches like you can’t imagine. I’m willing to try anything to lessen my daily headaches. Does anyone’s headaches stay with them 24/7? I always have a headache now but it changes intensity levels. Using a pain scale from 1-10 some days I only have a 3 or 4 and some days I have a good 9 or 10. My doctors have tried triptans, anti seizure meds, nerve blocks and a hole garbage can full of different meds and nothing so far has worked. I’m willing to try anything at this point. The only thing that lessens the pain some is opiods but those aren’t good for long term. My Cavernoma is in the frontal lobe in the left side of my head. When the headaches get beyond a 6 on the pain scale my left eye starts getting to feel like someone is stabbing my eye from the backside. Then it gets blurry. Sometimes I have whiteout flashes. I get dizzy a lot throughout the day also. Does anyone else get these same symptoms? @guzzie have they done a angiogram yet?

@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.

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@caira If you become involved in the trial with this new med, please let us know how it works for you. I’m certainly hoping that you find some relief. Your condition sounds quite complicated and I’m sure that you are looking for relief. I certainly commend you in being proactive and trying so many different treatments. I’m a fan of U of Michigan Health System as well. I’ve had some excellent results as a result of consultations there.

@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.

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@caira yes I do have headaches everyday. You are correct, I have never had headaches as bad and constant before this. Would say a constant 4 on pain scale, dizziness a couple of days which they try to blame on my ears, ears are clear per ENT. I take Tylenol and try to lay down. Doctors have never prescribed anything for headaches just told me no meds will work on the migraines, supposedly they are only to last one year. Same thing, stabbing pain on top of my head to behind my left eye. My Cavernoma is on left parietal. No angiogram, I am highly allergic to contrast dye, found that out having an MRA in August which was only done to check my neck for blockages, have no idea why my brain was not checked. All CT and MRI are done without contrast which are harder to read. Thanks for Dr. Saber info, I will check it out.

@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.

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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

@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.

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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!!!

@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.

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@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.

C

@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.

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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!

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