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Hi everyone. New to this site. I have chairi malformation which was diagnosed 2 years ago. Which i have been told i was born with the defect. I have had symptoms from the age if 11 and I am now 45. I was never away from Doctors when I was younger. I always got told it was migrains, panick attacks or in my head. Growing up in the 80's there was no MRI's. So had to just get in with life. But it has ruined my life.
Then 2009 took turn in dentist chair, they got ambulance for me and was taken to hosp, they thought was mini stroke I had taken. I had numereous scans, lumber puncture etc. 2010 got results have MS. I wasnt too bad was walking unaided not in any pain and working full time. Now in last 3 years symptoms have got worse. Neurologist didnt think all was related to MS so he went away looked over all my MRI scans (6 in total) and then the Chairi was discovered. It had been present in all my MRI's and no one noticed it. I was then referred to neurosurgeon. It wasnt clear cut because of the MS so to be sure I was admitted to hospital and had ICP fitted to measure pressure on brain.
14 months later had follow up and told all evidence points to chairi. Pressure on brain is 32. We spoke about the operation. I did not need to think about it. Said yes right away. But now after reading stories about other peoples operations its making me scared. As i think im not bad. Im not in loads pain. Managed with pills. It is my balance that is away and i have to use wheelchair when out house. And hold on to walls etc to get about indoors. Also suffer from ataxia which was my main concern. But started on tablet for that and I have it under control now. So is it worth getting operation just for the dizzyness/balance and the nystagamus that I have. They do think I will have MS relapse after op.
Should just add have become recluse. And cant get out doors on ma own. So i was hoping operation would help. But i now have concerns about being worse off after op.
Does anyone regret getting operation done. And does it give better quality of life
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