Not got many symptoms what are your thoughts

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Hi everyone, just a little bit about myself I’m a 22yo femail and have recently found out that I have Chiari Malformation type 1 has really bad neck shoulder top back & arm pain since may so bad a mri and came back with Chiari, but other than the original reason for my mri I have been having panic attack’s & left leg is starting to play up to the point we’re i literally can not walk or put any pressure on it what so ever, other than them couple no other symptoms I have an appointment with a neuro serg on the 17th of this month what should I expect at this appointment as I have no idea, any replies would be great thankyou 

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  • Posted

    Hi,

    I started having weird symptoms in 2008.  Like you I started having strange neck movements and anxiety attacks.  My blood pressure would go up and I never knew why.  I fell in 2011 doing a total body slam hitting my head.  In 2012 the pain in my neck was awful.  Finally had an MRI and had herniated c5/c6.  I had surgery Feb 2013 and continued to get worse.  Chiari found and had surgery Oct 2014.  I have continued to get worse.  I have sleep apnea, balance problems, eye pain,neck and shoulders pain,stomach pain, throat pain, burning pan in arms/legs, back pain.  Some people have a positive experience.  The operation is not a fix for chiari. You can continue to have symptoms.  There isn't much you can do if your CSF flow is blocked. I wish you well on your journey.  Do you have specific questions I can answer for you?

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    • Posted

      Hi thanks for quick reply, I’m sorry to hear that surgery didn’t help you I’m not to sure yet weather surgery would be an option for me as don’t have many symptoms right now my blood pressure also keeps going up what would be your opinion on surgery at this time for me thanks 
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  • Posted

    Hello Danielle,

    What kind of pain do you have on your back,arm and leg? Do you feel some pressure/heavyness/stifness on them.

    Was it build up progresivelly your symptoms?

    Did they took only an mri of your head or also your spine to look for syrinx. Also ask for a cine mri to check your csf flow. Some symptomatic patients have blocked csf flow. With a cine mri it is possible to see it. Where are u from

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    • Posted

      Hi thanks for your reply my doctor sent me for physio for my shoulder and it was the physician who sent me for the mri my leg feels like it’s to heavy and is really painful to put any pressure onto it the pain was coming from my neck which was stiff going down in to my shoulder and my arm & hand my arm and hand tingles and feels numb when the pain is there also when my arm is hurting I can’t carry anything even like bread from the shop when I had the bag on my arm it just give way and I dropped the bag like the muscle is weak I haven’t had a cine mri I will ask the Neuro surgeon on Wednesday at my appointment I live in Manchester and hear that most dr’s are igronant to Chiari so I’m feeling abit sceptic about seeing him incase he is one of those dr’s only a week till I find out I suppose thanks again 

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    • Posted

      Hi there, just wanted to say I know how you feel being uk based with chiari. I live in Northern Ireland and trying to get a diagnosis and then help with that diagnosis has been difficult. I was first diagnosed with carpal tunnel then a disc bulge and had cortisone injections and physio before actually receiving a proper diagnosis. What I've found with UK is that because we are NHS we can't really demand specific things, we rely on our GP to refer us for tests. I hope your appointment with the neurosurgeon goes well x

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  • Posted

    Hi there, you have an MRI and got Chiari....please\ get his advice..and ask him to refer you the best surgeon so that you can be operated successfully, it is only going to get worse if you leave it too long..I did not have too much symptom but in 18 months after that..its just unbelievable I could not live anymore, but once I had decompression all the symptom gone..so if you can..do it as soon as possible...
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