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Growth and recent bleed in cavernous hemangioma. I am scared to death!!
Hello. Well, where do I start. Last September, my whole world turned upside down when I started getting all kinds of strange symptoms. Tingling and numbness in extremities, bad headaches, vision issues, dizziness, muscle and joint pain, loss of balance, shocking sensationsin the left side of my face, a sensation that something was crawling across my scalp. You name it, I had it.
Before this started, I was and always have been a very healthy person. I went to the E.R. during one episode where they did a brain MRI. They informed me that I had a 5mm cavernous hemangioma in the left frontal lobe of my brain but that it was of no concern and not at all related, that I had likely had it since birth. Over the last 8 months I have seen numerous specialists, had a massive amount of tests..many repeated by various doctors, and more medication thrown at me than I know what to do with. No one has answers or a diagnosis.
In March, my neurologist took a second MRI of the brain to compare to the one from November. His nurse called to tell me it was normal. Imagine my surprise when just 2 days ago, I logged in to look at my medical records online and find that in that few months, the hemangioma had doubled in size and shown signs of a recent bleed!! NO ONE TOLD ME!! My symptoms have never gone away. I had a week where I was so bad I felt like I couldn't function, was falling down, etc.
I called a neurosurgeon for a consult next Wednesday but I already get the impression they are going to just want to watch this issue. I am looking for advice on what to say to this doctor, is it possible that the week that I was really bad was when it was bleeding, what tests do I need to demand...I am at a loss and terrified. To me, ANYTHING no matter how big or small going on in my brain is a bad thing, especially when I have had bad symptoms for almost a year. Any insight you could give would be great!
Before this started, I was and always have been a very healthy person. I went to the E.R. during one episode where they did a brain MRI. They informed me that I had a 5mm cavernous hemangioma in the left frontal lobe of my brain but that it was of no concern and not at all related, that I had likely had it since birth. Over the last 8 months I have seen numerous specialists, had a massive amount of tests..many repeated by various doctors, and more medication thrown at me than I know what to do with. No one has answers or a diagnosis.
In March, my neurologist took a second MRI of the brain to compare to the one from November. His nurse called to tell me it was normal. Imagine my surprise when just 2 days ago, I logged in to look at my medical records online and find that in that few months, the hemangioma had doubled in size and shown signs of a recent bleed!! NO ONE TOLD ME!! My symptoms have never gone away. I had a week where I was so bad I felt like I couldn't function, was falling down, etc.
I called a neurosurgeon for a consult next Wednesday but I already get the impression they are going to just want to watch this issue. I am looking for advice on what to say to this doctor, is it possible that the week that I was really bad was when it was bleeding, what tests do I need to demand...I am at a loss and terrified. To me, ANYTHING no matter how big or small going on in my brain is a bad thing, especially when I have had bad symptoms for almost a year. Any insight you could give would be great!
I'm wondering if you (or anyone) has any more information regarding this case? My wife is in the exact same situation. Also, I share your perception that that there is little accountability for results in the bloated medical industry. The revenue related performance metrics tend to dominate. Not necessarily a bad thing if there were competition and transparency, but myopic leadership.
Absolutely dear. I don't blame you one bit for feeling like you do. You definitely don't want to end up like your FIL......that's horrible.
I was "that patient" a couple of times in my life and had to fire a couple of physicians too. Hey, in the end it's YOUR life and YOUR body they are toying with. I guess some of them (physicians) don't care so long as they are able to drive a Porsche and live a ridiculous lifestyle with the loads of money they made regardless whether you live or die.
Just food for thought.
I was "that patient" a couple of times in my life and had to fire a couple of physicians too. Hey, in the end it's YOUR life and YOUR body they are toying with. I guess some of them (physicians) don't care so long as they are able to drive a Porsche and live a ridiculous lifestyle with the loads of money they made regardless whether you live or die.
Just food for thought.
Thank you. I aprreciate that. Hopefully, I will have some answers or at least know where to go from here soon. I may have to become "that patient" in order to do so but I think I am more than entitled to have a temper tantrum at this point.
I absolutely agree with your dear. Not sure why physicians are becoming more and more about "let's wait and see what happens." Plus, you weren't even informed about that bleed you had.
So sorry about your FIL....that's terrible dear.
So sorry about your FIL....that's terrible dear.
He was going to suggest waiting 6 months for another MRI and I said that was too long. He has no idea or explanation why I am having the symptoms in my face and head. I find it really hard to believe that this is not at all somehow related. There is never one single moment of my day where there is not pain, aching, headache, burning or tingling/shocking going on in the left side of my face and head. I have made up my mind that I am going to have the EEG done Monday and if they find nothing to explain anything, I am demanding another MRI or an angiogram. This is just not something to be swept under the rug. And I am NOT crazy, which is what they have all made me feel like for almost a year now. This kind of passing patients around is what causes people to die. I know first hand. I just buried my father0in-law one month ago due to complications from a hip surgery...6 months after the fact and MANY MANY doctor's appointments where he was tld he was fine. Blood clot in leg made it to his brain and lungs...he was with us for 2 weeks and then suffered a brain bleed. I don't want to be next because of someone negligence.
Well...since he doesn't think the hemangioma is causing your symptoms what is his opinion about what is the cause of your symptoms?
When was you last MRI? In March?
He should be repeating the MRI now in my opinion, not waiting 3 more months.
Still think he should have ordered a Cerebral Angiogram or Magnetic Resonance Angiogram (MRA).
When was you last MRI? In March?
He should be repeating the MRI now in my opinion, not waiting 3 more months.
Still think he should have ordered a Cerebral Angiogram or Magnetic Resonance Angiogram (MRA).
The neurosurgeon that saw me today advised that he just wants to follow up with another MRI in 3 months to check for change. He advised that the hemangioma I have on the left side is in no way responsible for the numbness, tingling, burning, or headaches that I have on the left side because the left side of the brain only affects the right side of the body. They have scheduled me for an EEG on Monday of next week to rule out seizures and to see if anything shows up there.
I have had neither at this point. I see the neurosurgeon in 2 days and am going to inquire about those tests.
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