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violet47232
violet47232

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

0 likes, 7 replies

7 Replies

  • gary01475
    gary01475 violet47232

    Posted

    Makes every symtom so much better,makes it a lot easier to handle at only 45 you can get quality of life back.go for the op as soon as possible
    • violet47232
      violet47232 gary01475

      Posted

      Thanks Gary. I am booked for 7th March for op. Im am pertrified. Should nvr have read about peoples stories. I had in ma mind id be cured after op. Didnt realise long revovery process.
  • Mrsbudge
    Mrsbudge violet47232

    Posted

    I am sorry you are going through so much! Since you have MS and chiari, and both share similar symptoms I would want to ask the NS which symptoms are likely chiari related and would improve or go away post op. I had the surgery at 54 and double vision went away almost completely, up and down nystagmus completely disappeared, and balance got a lot better. For me it was terrific, and of course it keeps things from continuing to progress and get a lot worse as chiari does. The surgery was not a breeze and recovery slow but it wasn't too bad. You will need several months of rest and taking it easy. I hope you get the answer you need to make a decision take care

    • violet47232
      violet47232 Mrsbudge

      Posted

      Thank you mrsbudge for your reply. That is very reassuring. NS is sure symptoms are relating to chairi there is enough evidence threre esp with having the ICP monitoring done. Theres a chance ms could be mild. Tho op could give me relapse. But chance i have to take x
  • b2wc97455
    b2wc97455 violet47232

    Posted

    Hi Violegt, it will get worse though...get the op.you will have your quality of life back
    • violet47232
      violet47232 b2wc97455

      Posted

      Thanks for reply. Something i have been born with but NS can understand how just gtn worse now. And she cudnt answer if dont have op if will get alot worse. I am booked got op 7th march. Not scared of op. But the aftermath of the op.
    • b2wc97455
      b2wc97455 violet47232

      Posted

      Well, its depend whether you are accepting it or not, every surgery have 5% chance of complication , just like when we drive a car or walk across the road, there is a 5% that we might get accident, but do you have to stop driving or crossing the road because of that 5% chance? then we do not work not enjoying the life that GOD given us ?, even if you stay at home, you still have a chance of getting accident (myself, 2 weeks ago, trying to clean the kitchen-wooden choping board accidently slided down hit my toe) and my bone was fracture....(LOL)..so my opinion is, if you think you can manage with medication - just go for it - otherwise - get rid of it (operation)- mine could not be managed by the drugs you see, and the side effect of prolonging use of drugs will also unpleasant. Butnow, I am drug and pain free - I am going to go back to Mr Flint the NS who operated me for post check up - I am going to ask him, why I keep having this back pain - my orthopaedic surgeon said thatis nothing wrong with my spine etc..etc..(via MRI/SCAN) so..I just have to try to wor k on it, but I chance my life style completely..eating a proper healthy food, no fried food, no gluten.2 ltr of liquid daily , walk daily..and I hope in 18 moths time I am able to go back to work again. But take everything with positive manner..there are far more worse than just getting Chiari..so..praise and count your blesssing.
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