I had the surgery to remove a cavernoma on my thalamus in Feb 2010, when I was 28yrs old. Was at work with horrible headaches and nausea and that's what we found (I'm a CT technologist) Since surgery, everything was going well until on vacation with my 4 boys and husband and had my first seizure. Was admitted to a local area hospital in Florida, transferred to a trauma hospital in Miami and was finally sent home. Went to see 3 different neurologists until I found one that could stop my seizures. Haven't had one in almost 2 years, but it is scarey.
Post op I would suggest to relax. After surgery I told myself that I could do everything just like before, but it wasn't that easy. With 4 boys, my husband and I relied a lot on our families who were nothing but wonderful!!
Best of luck to you!
Post op I would suggest to relax. After surgery I told myself that I could do everything just like before, but it wasn't that easy. With 4 boys, my husband and I relied a lot on our families who were nothing but wonderful!!
Best of luck to you!
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I am going through a similar circumstance. I had a seizure four years ago that left me unconscious and requiring stitches. I was put on medicine and was told I had a brain tumor. The seizures continued, but the doctor said it was due to a traumatic birth injury. I went to another doctor for a second opinion and she said it was growing and moving so she said it was a tumor. After several MRI and CT scans, I was told it was probably MS. This was then ruled out. Then, for a year a half, I was told I had a worm that was causing the seizures and this was from uncooked pork. A blood test was done and it came back negative. So now I am diagnosed with cavernoma. My doctor said there is no choice but have surgery because the seizures still happen with the medicine and hemorrhages are occurring.
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HI, I am 72 in good health and had my surgery in July of this year. I had a Cavranoma, can't spell, that bled into my brain and triggered a seizure. On the MRI the bleed was about the size of my thumb. It was close to the speech and decision making area on the left side of my brain. I was told that it was a birth defect, a bomb waiting to go off. I was very afraid, age etc. However, my recovery has been wonderful. At first I could not speak or read, couldn't make sense of the letters for 2 days. Now, two months later I am greatly improved. I stammer a little but so what. I can finish crossword puzzles, complete Suduku puzzles even the difficult ones.
I still do not drive but fortunately the public transportation near me is excellent and I live in LA. DO NOT let the fact that driving is not an option dismay you. I find that people thing this is such a big thing. Do your research and find other ways to get around. Public transportation options have improved dramatically in recent years. Many local municipalities provide an on call service that is really inexpensive and I am sure you qualify.
Do what your doctors tell you to do. I cannot stress this statement too much. Be patient, if you are tired lay down, you have had really serious surgery. Don't feel the need to push, I pushed at first and all I got were very painful headaches. As soon as I relaxed and let nature take it's course the headaches situation improved. Don't waggle your head around or bend over, another cause of headaches.
Things will get better. They did for me and I am 72. I am pretty old to be having this type of surgery and I am getting better all the time. It may take you longer to recover or not as long, everyone is different. Be positive and do what the doctors and therapists tell you to do.
I still do not drive but fortunately the public transportation near me is excellent and I live in LA. DO NOT let the fact that driving is not an option dismay you. I find that people thing this is such a big thing. Do your research and find other ways to get around. Public transportation options have improved dramatically in recent years. Many local municipalities provide an on call service that is really inexpensive and I am sure you qualify.
Do what your doctors tell you to do. I cannot stress this statement too much. Be patient, if you are tired lay down, you have had really serious surgery. Don't feel the need to push, I pushed at first and all I got were very painful headaches. As soon as I relaxed and let nature take it's course the headaches situation improved. Don't waggle your head around or bend over, another cause of headaches.
Things will get better. They did for me and I am 72. I am pretty old to be having this type of surgery and I am getting better all the time. It may take you longer to recover or not as long, everyone is different. Be positive and do what the doctors and therapists tell you to do.
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Hi, I live in New York, I had a seizure the reason of the cavernous malformation, that was in westchester. I did ask for a second opinion in Columbia prebysterian hospital at west 168 in Manhattan, by the chairman neurologist professor Doctor salmon Robert. Everything was ok according to his prediction so far, it was about 7 month from now it s ok to reach me
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Hi everyone. I am 5+ years post surgery for cavernoma. living in Australia. I am fully functioning although the odd thing still frustrates me - not adding up without a calculator unless I write it down and flipping/ spelling of certain words every time I type them. Like health and helath. I was about 36 when I had a brain bleed and had run a half marathon in the 3 months prior. They thought it was a stroke / cavernoma from outset. Totally out of blue. Symptoms for me were huge migraines vomiting and passing out. All settled down until about 6 months later when I had my furst grand mal seizure. Started meds then 6 months later another. The specialist said I should have it removed or risk another stroke. No guarantee on nil future seizures.
I did.decide on tablets and surgery. It was very scary esp with two young kids and a career I felt valued in. I was terrified of not being able to function and not rememvering them. I had surgery and thankfully no seizures until about 20 months ago whete I went to tge gym, pusged gard wiyhout hydrating myself..drove home then managed another grand mal but we had been titrating my antiseizure meds to a lower dose in tge preceeding months too. I figured my seizures are related to over tiredness and heat exhaustion/overheating.. am hopeful to be meds free if I can get myself sorted with balacing activity with not overheating.. still fully functioning, back to work and driving. I have modified my career ambitions and work to reduce risks of more seizures.. good luck. Xx
I did.decide on tablets and surgery. It was very scary esp with two young kids and a career I felt valued in. I was terrified of not being able to function and not rememvering them. I had surgery and thankfully no seizures until about 20 months ago whete I went to tge gym, pusged gard wiyhout hydrating myself..drove home then managed another grand mal but we had been titrating my antiseizure meds to a lower dose in tge preceeding months too. I figured my seizures are related to over tiredness and heat exhaustion/overheating.. am hopeful to be meds free if I can get myself sorted with balacing activity with not overheating.. still fully functioning, back to work and driving. I have modified my career ambitions and work to reduce risks of more seizures.. good luck. Xx
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Hi all,
I have just been reading all your messages below. I am in South Africa. I have recently been diagnosed with a cavernoma in the right cerebellum, which shows previous bleeding. I also have a DVA (Developmental Venous Anomaly) in the nearby vicinity. My neurosurgeon has said not to have any surgery and only to repeat the MRI on an annual basis. The problem I am having is that I suffer with persistent headaches, nausea and dizziness. They seem to think that my symptoms are ear related, which is why I had the MRI done, but all is fine with the ear. After reading all the stories here, it seems as if cavernous angiomas should be surgically removed, but I am being told no. I am 52 years old. Is it due to my age, diabetes, high blood pressure and high cholesterol perhaps or should I obtain another opinion.
Thanks so much for any assistance you can offer.
Kind regards,
Debs
I have just been reading all your messages below. I am in South Africa. I have recently been diagnosed with a cavernoma in the right cerebellum, which shows previous bleeding. I also have a DVA (Developmental Venous Anomaly) in the nearby vicinity. My neurosurgeon has said not to have any surgery and only to repeat the MRI on an annual basis. The problem I am having is that I suffer with persistent headaches, nausea and dizziness. They seem to think that my symptoms are ear related, which is why I had the MRI done, but all is fine with the ear. After reading all the stories here, it seems as if cavernous angiomas should be surgically removed, but I am being told no. I am 52 years old. Is it due to my age, diabetes, high blood pressure and high cholesterol perhaps or should I obtain another opinion.
Thanks so much for any assistance you can offer.
Kind regards,
Debs
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