Were you misdiagnosed by your GP in y... - Cavernoma Allianc...
Were you misdiagnosed by your GP in your initial consultation?
yes
Hi, my name is Debbie. I have a friend who has a cavernous angioma and is wondering what essential oils will go past the blood brain barrier so it can be treated. Thanks, Debbie
yes
no
GP? They know bugger all about cavernomas. My hospital team misdiagnosed me as having an AVM. Most neurologists know bugger all about cavernomas too ;-).
I take it that's a "no" then? 
My siegery stil don't know and no interest even though they diagnosed me wrong..Also left me to suffer for many months
Yes! Sort of.
Yes
Yes
NO - After first seizure they found a bleed and thought I had had a stroke. Following second seizure they found a bleed again but refereed me to a specialist at St George's in tooting who correctly diagnosed my cavernoma
But the fact that the GP thought it was a stroke.... She/he may have been in the right ball park but ... Thanks for answering the question.
So the answer is actually "yes." Cavernoma is not a stroke and you were only correctly diagnosed following your second bleed by a hospital.
I was taken to hospital with a suspected seizure or stroke. They did not think that there was anything else wrong with me. It was my own GP who asked for further tests to be done, I was sent for an MRI which showed up that I had a cavernoma. So yes the diagnosis was wrong to start with.
yes
yes
GP had me admitted to hospital genuinely thinking it was a stroke - HOSPITAL CONSULTANTS STATED IT WAS STROKE FOLLWED BY SEPARATE BRAIN HAEMMORHAGE. Neurosurgeon said it was total misdiagnosis. It was a Cavernoma. 99% of GP's have never heard of it!!!!
CA UK are working on educating even some neurologists who cannot identify the condition. The trouble is that some neurologists, and especially GPs, take a dislike to be informed by a patient support group. Most of our expensively-produced literature - paid for by members - ends up in the trash!
yes - it took 20 years for it to be diagnosed - GPs have very little knowledge of the condition and regard it as a "specialist" subject
Thank you ros 55. Please join us - it's free - cavernoma.org.uk
Yes, misdiagnosed initially. My GP thought i had Labyrinthitis and so was sent home with tablets. I referred myself to hospital and was told i had wax in my ear and sent home with paracetamol and olive oil??? My third referral (in the space of 3 days) i was told i had a stroke and was being sent to another hospital for an angioplasty. By the time i was in the other hospital i was told i had a tumor and lastly (after nearly two weeks in hospital) i was told it could be a cavernoma but they were only 70% sure?????? My diagnosis; brainstem cavernoma (pons). My consultant has been brilliant tho.
Join us. cavernoma.org.uk. Its free Sparky. And you can use that pseudonym if you want. Best wishes, Ian.
No my gp referred me immediately after first Diplopia and I had gamma knife surgery 6 months later. Full follow up mri monitoring .
Thank you. Are you a member of CAUK.? Here is the direct link: cavernoma.org.uk/membership...
Sophie Eldridge, the CAUK Administrator, will be happy to answer any of your member-related questions. admin@cavernoma.org.uk
yes I went to my gp numbness in face and opposite leg...He said I had bels palay leg no resemblance to face as I said same feeling
Yes. My first occurred in 1992 and went undiagnosed until the second bleed in 2005 which was promptly diagnosed with MS. Not until 2006 was I correctly diagnosed upon many second opinions! These bleeds were multiple cavernomas, not one bleeding several times so I was a bit of an anomaly at the time.
I presented at A@E because the dizziness was particularly bad. It was the doctor there that told me it was my ears. I have no medical support at all and any information I have about this condition, I have got from Google . I asked my G.P for information but was told that it is rare and they have not come across it before. I am currently waiting for the results from the second MRI done at the end if October
My G.P initially thought I had a stroke so referred me to the stroke clinic. Correct diagnosis following MRI. I suppose my point is, that the doctor at A@E knowing that I had a carvernoma still said it was my ears clearly it was not
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