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I’m lost

Posted , 4 users are following.

Nyla_girl
Nyla_girl

hello. I’m 37 yrs okd and have had 4 craniotomies to decompress and try to eliminate what chiari malformation has done to me. Since December of 2017, I’ve been suffering with so many symptoms fro severe head pain to numbness and weakness to double vision and so on. I returned to my previous surgeon but he seems that he is finished in helping me. So I went to the chiari institute thinking they will be able to help me since this is there specially. The dr said that my ventricsls are larger than normal and that he thinks spinal fluid is not being absorbed properly and that a shunt will be the next step. But befor that is to happen, I have dro endure a very painful spinal tap which the spinAl fluid pressure measured 14- normal. The dr now emails me and says that because the test was normal, there is nothing that can be done for me.  I’m totally lost and confused. I’m still experiencing may symptoms and these drs expect me to just live with them. has anyone been through similar experiences?

1 like, 9 replies

9 Replies

  • cakal76334
    cakal76334 Nyla_girl

    Posted

    Hello Nyla,

    Did you had 4 chiari surgery decompression?

    Did you had a syrinx..what were your symptoms and what is it now..how is your back feeling?

    Did they took a cine-mri

    • Nyla_girl
      Nyla_girl cakal76334

      Posted

      Hello. Thanks for responding. I’m not sure if all the surgeries was considered decompression. The 1st surgery, a titanium metal plate was put in to discontinue the cerebellum tonsils from further herniating. The 2nd one was to remove the plate because my body rejected the plate and  so much scar tissue covered over the plate. The 3rd one, the surgeon lazered the cerebellum so to not allow herniation to continue. And 4th surgery a pocket of fluid developed and needed to be drained. I was told that I had Sphinx befote the first surgery but is no longer seen on mri images.  I’ve asked ny neurologist to let me have one but he refused and said that a regular brain mri was sufficient. My symptoms are many: severe pain deep inside my head- at tones feels like a sharp needle is piercing through my brain,  difficulty swallowing at times, Blu-ray and double vision, pins and needles feeling in fingers and feet- sometimes feels like burning pins poking me, nausea, vomiting, dizziness, pain I’m legs and arms. I feel like doctors are not attentitive to how I feel, they only care what the radiologist writes about my mri images. And when I go to the same neurosurgeon that has done my surgeries, all he says is that I’m complicated. So I’m going to have a second opinion since it seems that this dr doesn’t care to help me anymore. I’m so frustrated 
    • JustinLowe
      JustinLowe Nyla_girl

      Posted

       It seems that we’re in the same boat, when it comes to finding a doctor that will look into our condition. I am a male though. Currently 33 years old, I have been dealing with this since I was 28. They just keep thinking that it has something to do with my previous surgeries (Decompression and shunt placement) 20 years ago, in the late 90s. Which it doesn’t seem like it, to me at least. I have the same symptoms as you except I am not in any pain, and I am not nauseous! I can barely walk tho, I have no balance, have a hard time controlling my fine motor skills to even eat, and go to the bathroom. I saw a neurologist that didn’t even look at my MRIs and just read what the radiologist wrote on the reports (which are incorrect) it says I have Chiari II which in fact I only have Chiari I. Which is a big deal when it comes to symptoms, he thinks that the problems are already too late to correct,(according to what he read). I didn’t like him. My original NS(neurosurgeon) said that it could be my fourth ventricle, which is inlarged, which he only saw when I pointed it out to him on the images, He said it was a IFV(isolated fourth ventricle)! This guy and a NS from UCLA just say that I’m complicated. It all started when I hit my head in 2012 (it started with slurred speech), in 2015 I started having the walking problems.  I wrote about my conditions on the Chiari page on Reddit. How is your fourth ventricle? 
    • Nyla_girl
      Nyla_girl JustinLowe

      Posted

      Hi Justin. I’m not sure if my 4th ventricle is the one that is enlarged but when I went to the chiari institute, the dr said that i have larger than normal venticles which causes poor absorption and a shunt will be needed.  Yet, after he sent me to have a very painful spinal tap and the pressure was so called normal to them, he said he can’t do anything for me. The previous neurosurgeon that did my craniotomies said that a shunt will only let my brain be dependent on the shunt, which made no sense me. If my brain need a shunt, obviously it will depend on it. I asked him what he meant and he never answered my question.  So I’m going to give it another try to get a 3rd opinion with a neurosurgeon who is supposed to be top of the line dr. If he can’t figure it out, I’m done.  I’ll update you after that appointment which is next Monday. 
    • JustinLowe
      JustinLowe Nyla_girl

      Posted

       Yes, back when I was like 13 or 14, all my ventricles (and spinal cord [syringomyelia]) were enlarged also, so they put a shunt in to help keep them at the correct level, (just remember that everyone is different, though) and I’ve been good ever sense (almost 20 years).  So thank you, keep me updated, please! I am not looking for a cure just a way to help with the problem. 
    • Nyla_girl
      Nyla_girl JustinLowe

      Posted

      Thanks for responding. I’m praying that get concrete answers to why I am suffering soooo much and hope the dr will be able to correct it. I’ll let you know what happens
    • JustinLowe
      JustinLowe Nyla_girl

      Posted

       Yes, I forgot to mention that, I am praying for you that the doctors are able to correct the problems that you are having! I just spoke with a doctor from UCLA, and he was saying that he does not know what’s going on with me.  When I get another MRI I can compare the images to see what has changed.
  • Ttraye
    Ttraye Nyla_girl

    Posted

    Hello and yes i totally feel what you are, i am sitting in my recliner because i was in such head pressure i literally thought it was going to explode. My chiari has caused me to have prisms put in my eyeglasses because the pressure was actually making my eyes cross, and they are so tired. I just told my husband i am thinking of calling New York just because i know i will be seeing a dr that knows chiari, not keep being blown off by stupid drs. I just wish if im going crazy that i would go. Im scared, as i assume you are. Best of luck, i hope we both can get our heads clear. So scary! Scared i have to live like this,... i can not do much longer. 
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