Might have Chiari malformation not sure please help me you need to answers so I know that I'm not im

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14 years ago I was diagnosed with a syrinx on in my spine my doctor told me that I had to do MRIs every 6 months. It frightened me and I stopped going. Now I am having all of the symptoms of Chiari malformation. Now I'm having blurred vision on and off excruciating pressure headaches stemming from the back of my neck. Constantly tired. Mind you I've never had a headache in my entire life up until 3 weeks ago. Sometimes I stutter or stumble on my speech and my legs and hands are always going numb. I feel like I am not thinking clearly my head is always in a cloud. What do you think just looking for opinions before I go in and see the doctor

1 like, 8 replies

8 Replies

  • Posted

    Hi, if you have had a syrinx for so many years that's gone without any kind of observation I would definitely advise you to see your doctor to investigate the new symptoms.

    I too was frightened when I was told I had chiari and a syrinx, but personally I feel the more knowledge you have about the condition the better armed you are to deal with it.

    • Posted

      Thank you tomorrow I will be talkin to my Dr about getting the proper testing done to confirm the diagnosis. I'm still scared though

    • Posted

      Off course you are, I understand. I was under the illusion I had carpal tunnel for almost a year then most of last year I thought I had a bulging disc. Getting a chiari diagnosis was totally unexpected and very scary, but I have to say I'm glad I now understand things better. The symptoms make sense and I don't feel like I'm crazy or dramatising how I feel. If you are really anxious, bring someone with you who can listen and verify how you have been feeling.

  • Posted

    Go to ur doctors and tell them everything. . They should send u for an mri scan ,, don't take no for an answer it took me 6 months to get my daughter seen. Go in morning sweetheart xx

  • Posted

    I am with you on being scared, My entire life i had issue's with headache's, blurried vision, dizziness, passing out, My doctor always blamed it on my back, i have scoliosis and DDD, she would never do the proper testing, for the past year the symptoms have gotten worse and new one's appeared, ended up in the hospital where they did a CT scan, that showed a Chiari so they referred me to a neuroligist, went to see her and she made me feel like i was crazy saying the ER doc doesn't know what he is talking about cuz a CT can not show a Chiari, that she feels i have Fibromyaliga and she scheduled a MRI, got my results back and it definitely is Chiari, but she is trying to say that the Chiari is NOT the cause of my symptoms, but reading everyone else's stories i believe she is wrong, cuz my symptoms are all the same and some i haven't seen anyone mention, she finally referred me to see a neurosergeon, but i am terrified and everything is getting worse, i don't feel normal at all, i am always in a daze, head constantly hurts, can't sleep but always so tired, etc...please leave us updated on how you make out, and remember you are NOT alone!

  • Posted

    You have lots of good respond, but please listen to your body and be firm with the healthcare team

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