On Friday my neurologist called to give me the results of my MRI. She said they found I had cavernous angiomas in my brain stem. She said it is leaking blood & that that is the likeliest cause of my seizures. She is concerned that I probably was born with it but only recently started having symptoms... seizures, headaches, horrible musculosceletal pain etc. She also said before they knew anything about this they treated patients for muscular dystrophy or multiple sclerosis (can't remember which one) because the symptoms mimic those diseases. I am scared to death to end up in more horrible pain in a wheelchair :( She said brain surgery is way too risky in the brain stem because that is the most sensitive part of the brain & that if touched, it could cause paralysis or death. Has anyone else had bleeding in the brain because of these malformed blood vessels? Any suggestions or hope? Scared out of my mind :( Jewels
Cavernous Angiomas - Has anyone else had bleeding in the brain because of malformed blood vessels ?
Added 17 Sep 2012:
I am also going for a sleep deprived EEG in several hours to see what else they can detect :/ thank you in advance for your kind words of support & kindness :) sweet dreams those of you who can or are able to sleep! Hugs Jewels
Hi Jewells, so sorry to hear of your diagnosis. I don't have an answer either right now, but will put the research into action. If I find anything, I will let you know right away. I also think a teaching hospital such a a University is a good idea. They have the newest & best of ideas & doctors. Never give up hope. New ideas & procedures are coming up each & every day. We'll just have to find you a doctor that can help you! My thoughts are with you my dear...
i am so sorry to hear about your diagnosis!! never ever give up, there are great universities out there, there are alot of top universites in pa, i don't no where u are from, but they have alot in pa! i definitely would not just stick with once neuro's opinion, get a second and even a third opinion if need be, they come out with new treatments all the time so please hang in be strong and don't give up hope! turn your worry's over to your higher power trust me he is there for u, i no he has been there for me in my most darkest hours and got me through things i never thought i would come out of!! wishing u the best of health, peace, and happiness
Sorry to hear the news! At least you know what it is now. I'm sure they will figure out something to do for you. Other people I'm sure have gone through this. Hopefully someone here knows about your diagnostic and can give you some info and relief.
Hey Jewels, my wife went through a treatment with tasigna and as a post side effect she's been experiencing severe headaches that often end up in seizures. She had been diagnosed with an aneurysm in the Willis polygon and her neurologist gave her a similar diagnosis to yours to explain the cause of the pains and seizures. He said that the drug -tasigna- was prescribed to improve the quality of her blood and these side effects were sot of normal because the drug also might help her vascular system since she's been taking too many drugs to relieve the pain caused by the pressure of the aneurysm. However, it gave her blood leaks in the brain and the best they can do is to keep her as calm and sedated as possible but that they will stop or diminish in intensity and frequency. We have been like this for almost a month and no changes. We're desperate as well. So far, hope, faith and family are keeping us in one piece. Receive our solidarity and prayers.
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