TO ALL CHIARIAN TAKE IT EASY HAVE A WONDERFUL CHRISTMAS

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Hi every one, whether you are waiting for surgery, just being diagnosed or just having the symptom and waiting to be reffered to neuro surgeon...please accept what you have..Christmas soon..pray..take your time..space it..don't do too much..I know it is hard some time..mostly if you have responsibility as a parent..however it will be better for you and your family if you look after yourself as well so that every one (to include you) will  be able to enjoy christmas..try to meditate..have a lot of warm bath..if possible with magnesium flake..drink plenty of fluid..eat plenty of fruits/vegs and possible take omega 3 oil (its good for the brain) and try to meditate or take a deep breath if you can even just 5 minutes 2 x day, that wil relief your pain.. a little bit

Any way..if you have black out..under no illusion at all please contact 999 (UK) get the qmbulance to take you to A&E. Merry Christmas all - may God bless you all and your family

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  • Posted

    Hi ,I was just diagnosed with chiari malformation.I've been dealing with the symptoms for a few months and they seem to be getting worse, the NP told me it's no big deal but I can feel it. I admit I almost feel like I'm over reacting but i do want a second opinion because i don't like feeling sick 24/7, like my head has been run over i can't see half the time i loose the feeling in ny hands and feet. Any recommendations as to werei should go for a 2nd opinion
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    • Posted

      hi Erin,

      I am very sorry to hear about your condition, i am fully understand your pain, as i have it for nearly two years now, and have to resign from my excellent job because of my condition. That is really such unsyphathetic for your NP to express to you ''ItS NO BIG DEAL'' I really hope him or his love one one day wwillhave it..then he realise how he feel. First of all, do you live in the UK?, if you are which part?, if you are in the State you can choose where ever you go because you are cover under insurance aren't you? if you are in the UK, you are cover by NHS so it is depending whether or not you likely wanting to travel either to Walton, Northampton or Birmingham..best thing to do..go to the website..go to Ann conroy organisation or brain & spine organisation..have a look at the list of the chiari specialist near you..talk to some nurses in the Ann conroy trust ..ask their opinion..contact several hospital ask to them (that was I did..I contacted several hospital and talk to some of their pa) then I have up to 3rd opinion..and I chose the 3rd one..my primary care GP were really fantqastic because I always rpoactive about my condition..I TOLD them what is chiari..explain it to them (after I read from the website and study from you tube) - i used to have 8 medication..i used to be house bound can't ev3n bend down..now i only take paraqcetemol or tramadol..after i take supplements I dropped all my medications... please dont give up..drinks 2 littres of waters daily take supplements (grape seed extract) and magnesium spray oil each day..try to walkl 10 - 15 minutes - be positive...keep asking your gp..tell them how suffering you are ask then to help you..if it get no where if you are in the uk write to PALS

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    • Posted

      Thank you I'm in the us i found a clinic near me that specializes in it so I'm going to send them my info and see what they say. I love water walking and my big brother has been a big help it makes me feel crazy that no one knows how i feel thank you for your words of encouragement they mean a lot
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    • Posted

      Hi \erin, which part of state are you, what about Mayo clinic are you far from them?, do you feel inbalaance as well like '' when i walk i have to be careful..as the month goes by my condition getting weaker hence I AM so glad that I get to be Op soon, just do not give up..be careful when water walking anything that making yourself dizzy..look..just accept our condition..its not the end of the world..and the blessing of it is that we have been diagnosed so we know what to do ..just perservere..there is the end of the tunnel..lots of them get better and enjoying it their quality of life gain..lots of them who have success story do not join this site..and if you reqad of helen and others they have good a story to tell..so be brave and always be positive..you ll get better...just up date us how you are getting on..do not do too much..
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    • Posted

      I live in new York i feel shakey sometime i keep a smile on my face for my kids i don't want it to effect them to bad
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    • Posted

      yes, you have to!!!, the same with me, my twosons are growing up, but when I see them, i trynsooo hard not to show them.. even though its so hard..but some time..\i have to go for a nap if  I really can't stand it..very rarely.. you must too, but you to think about yourself too, I suppose in New York must be easier there are lots of brilliant specialist there..give Mayo clinic a rinng pleasr erin they can advise you..and come back to us see what they say
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    • Posted

      Hi Erin, I am in the UK so dontknow much about the US however prior to getting into a UK support forum most of what I learned was in a US FB Support group. I understand one of the leading specialists in CM is based there. He was called Mr Greenfield of the Weill Cornell Brain And Spine Center.

      I cannot recommend him or his clinic as I have no personal experience but he was well thought of by others in the group

      Good luck with your journey

      x

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