NL letter says Chiari Malformation does not look to be of any significance, is not a cause of my symptoms and does not need any further intervention.
This btw from a NL who has never met me. So I am in 2 minds, 1 part would like lots and lots of people to see this and say derr no that a perfectly good head, nothing on that that scan would explain you falling over or having dizziness, earache or your head hurting or you losing your mind.
The other smaller one is saying so why then do I feel like I do? Does anyone in Uk have any advice about asking for a neurosurgical referral? I think it all has to go back through GP again ,Gp always told me its just migraine I feel as if nobody is on my side at all with this. It feels like a Dr Who Brainwashing Migraine conspiracy. Maybe they're right?
I live in the UK and have been suffering constant headache at back of head (feels like brain's popping out!!), constant dizziness (I have also fell) and have problems walking.
These symptoms have progressed over 10 years (I am female now 45). I have had 6 MRI's (most of them private),seen numerous neurologists and the only thing htey say is ' a slight chiari malformation 5mm but is not cause of thesesymtoms!!
Oh Helen I feel your frustration, where do you live? I wish I understood , every Dr ( and a well versed physio) knows the " its just a coincidental finding" script, but nobody gets an MRI for no random reason it took months of balance problems and dizzyness for an ENT referral to be organised and them to request a scan, the scan to show the chiari and then till now for NL conclusion . Have you seen a neurosurgeon,? I just want to feel better, or to even to understand what's wrong with me and deal with it ....tell me more about you?
I live in the North East, Newcastle. I did see a neurosurgeon 3 years ago, but he was very dismissive as the flow study scan showed that my CSF was OK, so therefore there is no way my symptoms are caused by the chiari malformation. He told me to go home and forget about it and that it would probably all go away, basically he meant that it was all 'in my head' literally!!
My symptoms impact on my every day life, I can't stand up for long, even dizzy when sitting down, my head is constantly 'bobbing', using the computer is difficult as I have to lean forward, no way on this earth can I go to the hairdressers, I get my sister to do my hair....
Sorry for being negative, I do sometimes try to see the funny side...
I live in the North East, Newcastle. I did see a neurosurgeon 3 years ago, but he was very dismissive as the flow study scan showed that my CSF was OK, so therefore there is no way my symptoms are caused by the chiari malformation. He told me to go home and forget about it and that it would probably all go away, basically he meant that it was all 'in my head' literally!!
My symptoms impact on my every day life, I can't stand up for long, even dizzy when sitting down, my head is constantly 'bobbing', using the computer is difficult as I have to lean forward, no way on this earth can I go to the hairdressers, I get my sister to do my hair....
Sorry for being negative, I do sometimes try to see the funny side...
Aw really don't apologise for being negative , I wish I knew the answer, I live in the North West and am under Manchester and Stockport Hospitals. I got the pain in the back of my head very suddenly 13 years ago, it was so shocking and specific I was in no doubt that it would be easy to diagnose how wrong was I. I was finishing my optometry degree which I did as a mature student. It had been full on studying, travelling to Bradford cos I have 3 children who were all young, and practicing to use instruments . Anyway my first job after qualifying was doing home visits so loads of equipment to carry, meanwhile head got worse, when I had time to speak to dr it was dismissed as migraine, wear and tear . Gradually everything has deteriorated I'm bored with myself. Over the years I've had 2 bad episodes of hyperthyroidism, been found to have a leaking Aortic Valve and now the Chiari . The balance and ear problems along with very painful shoulders led me to go off sick for the first time before Christmas,.iv had to go back now as no sick pay ksft but really struggling,. I am hoping to ask for a referral to Liverpool, The Walton Centre is a specialist unit I just feel too exhausted to face the inevitable trauma. Where did you see the NS , could you ask for another opinion, your symptoms sound so like mine, :-(
Thanks Helen I'll email when I'm on PC , prob Wed as got day off then . Use tablet for this but prefer to use PC for yahoo ,I'm looking forward to chattng more
