Chance of recurrence of Chiari Malformation?

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I had surgery two months ago. Felt fine after. Saw doctor for follow-up appointment August 10. All good. This weekend, I started having the dizziness and zombie head. Again. Anybody have any experience with this?

 

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  • Posted

    It takes time to heal. Some things go away and stay gone.. Other things come and go till you really heal. It takes at least 6 months or longer to really heal and know how well things are. If the symptoms tho persist and get worse. I'd talk to your neurosurgeon tho. I pray you feel well soon.

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  • Posted

    I had surgery May 9, almost 4 months now. I still have good days and some bad days. I get dizziness too, and some headaches in my left eye. I also have temderness to the back of head and neck yet. I continue to take breaks and lay down when I feel I need to. I know how you feel, try to be patient with yourself. I hope thinks continue to improve for you. Best wishes to you.
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  • Posted

    So far the MD said everthing is Ok.  I went to see him for a follow up, he sent me to another MD because they thought I had MS.  The second nuerologist said no. He thinks I had a small stroke, that caused the chiari malformation due to some swelling on the brain. Several other MDs and tests, and MRI before seeing him said it wasn't a stroke.  He said some strokes don't show up right away of the MRis. I am very confused. I try to stay positive though. The really bad all the time headaches are gone, but I do have milder headaches most of the time. I do get scaried when I get occasional bad ones, twice since the surgery. I get my stroke like symtoms which start with bad headache in my eye, then tingling in face, followed by facial drooping and slurred speech. Theu gave me two medicines to take, usually last 2-4 hours. They don't call it a stroke they call it a complex migraine.  I hope the symtoms iimprove soon, every time it happens I get so scaried, I end up in emergency and they send me home after a couple hours just to rest.  Sorry I am going on more then I wanted to. I just want to say keep a list of the symptoms, how long they last. If you are scaried or worried call and talk to the MD or his nurse. They are kind to me it helps, to know if what you are going through is normal or not. they will help, just ask alot of questions. best wishes to you

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  • Posted

    I have completely lost my mind and went on a FULL RANT directed at my Neurosurgeons on their FB page and Patient Portal. Also left a message for my GP. I AM NOT SATISFIED WITH THEIR FREAKING LEVEL OF CUSTOMER SERVICE!!!!  

    "I started having symptoms again. Dizziness, disorientation, Balance and soreness around scar. I called my neurosurgeon's office. My doctor is on medical leave. So I asked the nurse about these symptoms and do I need another MRI to make sure things are fine and this is just a fluke anomaly. 

    I was told to go back to see my neurologist.  

    A. I JUST HAD SURGERY JUNE 2!!!

         1) I just saw the substitute doctor at Goodman Campbell on August 10 for my post-surgery follow-up visit and everything was going OK then. So why can't I go see them again now (It's 2 1/2 weeks later). 

         WHY DO I HAVE TO GO BACK TO MY NEUROLOGIST?????? (who I  

         dislike ever since she referred me to a neurological opthamologist who

         told me my vision was 20/20 and it was "ALL IN MY HEAD!!"   I knew my

         vision wasn't 20/20 and had seen my eye doctor!!! More like 20/40. And

         telling a patient with Chiari that it is ALL IN YOUR HEAD is really not an

         appropriate approach!!!

    a) Maybe I have a CSF leak? 

    b) Maybe I'm having an allergic response to the dura patch. 

    c) Maybe I have a buildup of scar tissue. 

    So basically, I can't even TALK to a Doctor without going through another doctor and waiting for 2-4 months!!!  Maybe I have some other Chiari thing? Going to see THE NEUROLOGIST means I have to wait extensively to even get anyone to answer the phone there. And then it's usually 2-3 months to get in to see the Dr. And I've already had all of the tests that she recommended.  

    2) I don't want to have to be shuffled around until all my symptoms come back full blown!!! I don't want to have to lose my car driving privileges again and have to go to appointments in an UBER!!  And I'm tired of having a ZOMBIE HEAD and walking like I'm DRUNK without the satisfaction of getting to have a COCKTAIL!!!    This is really unacceptable!!"     

    So, I called and left a message for the person "in Charge"-  Office Manager  called me back and I told her all my symptoms and she just called back and said they are going to order up an MRI to check everything and then if all is good, will have nothing else they need to do. Hopefully it's all good. It's very frustrating because doctors don't listen or believe me. They go by their set script of what symptoms are associated with Chiari and if a patient doesn't have that symptom, they assume they don't have an issue. But in the case of the last MRI- which is a Cinne MRI where they video CSF flow, there was obviously a blockage. If they only do a regular MRI, it may not show anything.

     

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  • Posted

    I am so sorry for what you are going through. I remember feeling the same way before I got to see my surgeon. They kept telling me its just a migraine. No its not I would say, Migraines, you have a headache and take a medicine lay down and after a few hours would go away. My headache never went away. It started in Jan 2015, and nver went away. I finally was diagnosed in March 2016. I was so frustated I wanted to scream. Now after my surgery, I get daily headaches, but not constantly, and if I lay down and rest for a while it gets better. They say it can take 6 months before you feel better. But you know how you feel, if they don't listen, get a second opinion.  I know the frustation. Remember to rest, they told me to drink enough fluids because that can make you feel dizzy. I hope you feel better soon. Feel free to email me here, I will respond

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    • Posted

      But I already felt better. After I got over the nausea from painkillers, I felt steadily better every day. I went to the mall to see a movie and we had to rush to get to our reservation at a restaurant and I was fast-walking like I did when I was in college!!!!  I was Zipping in between people also!! Which I sure can't do when I'm in my zombie stupor!!!    I didn't feel better last week and weekend. So that is not right!! I will sure be p*ssed if my "feel Better" phase of recovery only lasted 1 1/2 months!!!

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