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Surgeon doesn't think he can help me. Any other options?

Posted , 5 users are following.

cokeguy223
cokeguy223

So after 2 months of waiting I finally saw my neurosurgeon about my MRI results.  He showed me that my tonsils were extended 11mm in to the foramen magnum and that the normal tolerated amount was up to 5mm.  But he said that he saw no cysts forming and it didn't look like any fluid was being restricted.  He said if I were to have surgery it would be "high risk low reward".

I'm not sure what I should do.  Just give up?

0 likes, 6 replies

6 Replies

  • Linleel
    Linleel cokeguy223

    Posted

    See another Neurosurgeon. Even if it's not blocking fluid, it can still significantly relieve symptoms and it won't get better. Get a second opinion. Some NS are nervous about doing decompression and haven't done alot. Also, you can request to have a CINE MRI. That would show if fluid is blocked. How can he tell if fluid is blocked with a standard MRI.  When did you get diagnosed? What are your symptoms? Are you close to a neuroscience center affiliated with a university? 

    • cokeguy223
      cokeguy223 Linleel

      Posted

      I seem to have a lot of common symptoms others have.  Extreme dizziness and pulsing headaches at the back of my head are the worst symptoms.  Also have extreme exhaustion on most days which stops me from holding any type of full time job as i've found myself literally passing out during work.  I have tinnitus, difficulty swallowing, blurry vision.  Hard to say if any or all of this is related to Chiari, and that's basically what he said as well.  Maybe it is, maybe it isn't.  I will send him an email asking to have a cine MRI.  I had a CT scan done about 1.5 years ago while in the ER and they noticed it.  They were more worried about immediate problems so nothing was ever followed up on it until I had an MRI two months ago or so which is what I went over with him today.

      I have no idea, I live in Colorado xD.

    • Linleel
      Linleel cokeguy223

      Posted

      I went through the passing out while at the computer. Better to be cautious than passed out!! 

      I disagree with the High Risk, Low Reward statement. If you don't have surgery, there is really nothing that will fix your symptoms. You can get medication, but it won't make things go away. Your brain is being squished through a hole in the skull. That truly affects functioning!! Your doctor apparently has little experience with Chiari. There are not very many doctors who are well-versed in it. Many doctors can cut into the brain and look around, but they don't really understand exactly what Chiarians are going through!! 

  • julia_89059
    julia_89059 cokeguy223

    Posted

    I would say get a second opinion and get a CINE MRI to check if there's any blockage. Especially if you have symptoms.

  • Mrsbudge
    Mrsbudge cokeguy223

    Posted

    My NS was as concerned about symptoms such as central sleep apnea, and double vision, as he was with the issue of CSF blockage in determining that it was time to consider decompression. CSF blockage was one factor but not the only one. Decompression surgery relieved the blockage and improved many symptoms. I would consider a second opinion
  • b2wc97455
    b2wc97455 cokeguy223

    Posted

    Hi there,

    Depending how do  you feel though, why would ammend something that does not bother you - either your NS does not understand the pain of their chiari patients have or perhaps you do not suffering like majority of the chiarian are - i was detest the surgery option 2 n a half year ago but as the time went by my condition getting worse-I ended up being a house bound - so after surgery I am now have my life back free fr om pain and drug. So what I am saying is, if the condition does not bother you then why would you have surgery?, surgery only being done when the patient wuality of life is effected, so thus also reducing the pressure of pain, tremble , intense migraine, echoeing on their ear, vomitting, blur vision, imbalance, uncontrol bladder etc..etc. if tyou have none of that, then stick with the conventional theraphy

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