Chiari Malformation Community
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1375148 tn?1323166921


Hi guys, I know this is a bit of a strange one but I have chiari (3mm) and cervical disc prolapse, moderate scoliosis, for the past year I've had varied symptoms with the most debilitating being headaches, weakness in my kegs, vertigo where I have purple lights in my eyes, on n off electric shock type pains and really bad back n neck ache, no doctors think it's the chiari causing them which I can sort of get to a certain degree, as far as work goes I've forgotten things, can't organise myself as well as I did ( and I was so good at organising before) I get stressed out easily and can't get out what I want to say, it's like I know what things are called but I get muddled up, I've been rushed into hospital twice from work with extreme abdominal pain this year. I am the manager!! This has resulted in lots of sick days which ended in me being signed off for 4 weeks in august. I've returned this week 3 days a week which is fine, but I'm terrified cause there saying that if physio doesn't improve my symptoms then I need to consider if this role is right for me, but no one has diognosed me with symptomatic chiari. Just wondered if Anyones been through the same, I'm counting of this physio I really am.  
9 Responses
620923 tn?1452915648
Hi...not too many drs use the term chiari 0....chiari 0 is a relatively newer term used to describe symptomatic chiari of herniations smaller than 5mm.

Chiari is not the herniation, but, drs use an old means to determine if it is  or could be symptomatic and that is by the size of the herniation.

It is documented that larger herniations could have no significant symptoms while a minute one could have life altering symptoms.

Have u had a CINE MRI to see if u have CSF blockage and overcrowding? These along with symptoms r what most chiari drs look at.

Sorry, I can not remember who u have been to...being in the UK, I know u  do have chiari specialists, but I have no idea if they r using the chiari 0 term.

1375148 tn?1323166921
Thanks Selma, I went to see dr bassi, he did say that in some of my MRI slices it looked like there was over crowding but he said on one of them it showed obvious csf flow. I've had another MRI done recently and I'm waiting for that report if this one says obliteration of fluid space like my old one I'll push for a CINE but at the moment my GP is being dismissive cause dr bassi said he doesn't think I have chiari. It's like your talking Jibba jabber! My gp ordered normal brain scan when I specifically said CINE to her last time, so go figure.  I just want to be able to work bur it's becoming harder and harder
620923 tn?1452915648
I do understand ur frustration. And I also know how hard it is with work...I went thru that too...for 2 yrs I didn't know day to day how I was going to keep on going.

Unfortunately it does take time...from my dx it was almost a full yr till I got to my chiari ns.....and then a few more months till I had surgery.

There is no quick fix...and we  do have to learn to compensate to allow us to keep on moving forward with our lives and our health care.

Hang in there

1375148 tn?1323166921
Thanks Selma for the kind words, you did 2 years of this? Blimey, it's been a year for me in October when i first started getting poorly. How was your bosses with you??

  Maybe it's because i've done 7 hours today and it has floored me completely, leg gave in on the way home so made a *** of myself nearly falling over and limping home. Sofa and pizza tonight i think. x

620923 tn?1452915648
Well it was 2 yrs where I didn't think I could keep going, but I have had symptoms since I was in grade school...the symptoms did cycle, and I had some times that were better than others, but this quest to know what was wrong has been my whole life.

I am not sure y symptoms got worse, unless it was stress and the work load....my boss was not kind nor understanding at all which made it all worse.

While in high school I was in a MVA and sent to a shrink....the HA's were really bad.....over time they did get better, but I always had HA's and thought it was normal.

1336659 tn?1275890125
My son gets all the symptoms you state and others too. Touch wood his headaches have subsided lately.
I'm just wondering about your electric shock type pain? The other day he said it felt like electricity travelling down his arm. Would this be similar to what you feel?
I do hope you get some answers with your MRI.
1375148 tn?1323166921
Yeah the electric shock type pain is just that radiating bouts of sharp pain that happen suddenly in my arms, fingers, legs ( thighs ) toes ankles, bottom of my back,  some times they make me really jump.
1063386 tn?1287878569
So sorry for all ur frustration. Your story sounds very similar to mine. And so many others.  I only have a 4mm hernition and have had too many docs tell me it is normal to have even though it is very wide and blocking things aignificantly.  I can't find a facility that does CINE flow studies close heck I can't even get insurance to authorize a lumbar MRI.    Anyways don't get down. Just search for a different doc. There is one out there that will recognize symptoms and treat.  I didn't think so but I did find one.    I have been off work for almost a year and a half. As I am a hospice nurse and can't be cleared to drive yet they don't think I have anything wrong with me yet no one will take that chance.  I finally got them to release me and I had a drop attack my first day back.   So needless to say they put me on an as needed bases. And have choose never to need me.  Which means no disability and no income.   Please take it easy at work and adjust around your abilities.    Good luck.  
1375148 tn?1323166921
Oh god that sounds awful how on earth do u manage?? Thanks for the support, work have said that will support me doing 3 days a week while I'm having physio, but my job requires my to do a certain amount of hours ie full time cause I'm registered with the care quality commission, it's so hard we just cant survive without my wage,  that's stress full in it's self cause if I can't do this Job what else can I do! I don't know anything but care work it's my life, but now I can't even support my staff when there dealing with challenging behaviour as my GP said if I get sip lash from an ancient it will jault my prolapsed disc further ;-(  it's so hard not to support them.
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