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Help please

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hanneley1022
hanneley1022

My son is 11 and was diagnosed with chiari malformation tipe 1 a year ago. The neurologist that attended to him said the tissue is out by 15mm on the right side. He gave him Xefo rapid 8mg tablets to drink if he has pain. For a few months now he puke and complaining about chest pain heavy breathing. He also does not have bladder control. There are days that his really weak, his sweating badly at times and does not want to eat, sore throat.  What must I do to help my child.

0 likes, 6 replies

6 Replies

  • madara
    madara hanneley1022

    Posted

    Hi!

    I think 15mm is quite extreme herniation, and since your son is symptomatic, I think he could be a candidate for the decompression surgery.

    You should seek a neurosurgeon's opinion. CM (Chiari Malformation) symptoms usually tend to get worse. I haven't met anyone here, on the forum, who has gotten better without the surgery.

    Before my surgery, I had plenty of symptoms, the worst being the headache and the vomiting, for a couple of months I was prescribed Xefo 8mg, but it didn't help at all. 

    • madara
      madara hanneley1022

      Posted

      Your welcome. If you have any further questions don't hesitate to ask. My CM experience is certainly different, since I'm 27 now, but still it's the same condition.

      Many doctors aren't familiar with CM. You should find one who specialises in treating CM. It took me 2 years and 5 neurologists to finally get an appointment with the neurosurgeon who didn't think I have migraine and diagnosed me with CM.

  • enchanted
    enchanted hanneley1022

    Posted

    So sorry for your son...you must see a neurosurgeon preferably in a larger city. I do not know where you're located but if you're close to Pittsburgh they are the leading facility dealing with Chiari. I've been a year going through the insurance loop but I will tell you for sure if you inform a neurosurgeon of your sons condition you will be seen immediately. If that doesn't work my neurosurgeons office said to go right to the emergency room of the hospital for which neurosurgeon you're wanting to see. That's what I did and it worked!

    • hanneley1022
      hanneley1022 enchanted

      Posted

      Thank you so much for your kind assistance. Unfortunately I live in South Africa and it work differently this side. I did went to a neurosurgeon but they are not so clued up with Chiari like you guys are. There is very little neurosurgeons that do know and have experience with Chiari, but to find one is not always so easy. That is way I ask for help so when I do see another neurosurgeon that I have my all my facts. 
  • Linleel
    Linleel hanneley1022

    Posted

    He should be condidered for decompression surgery!!! 15cm is pretty long- probably has CSF Flow blockage!! See a different NS. Some NS's don't seem to understand Chiari at all!! Many try to blame the symptoms on other illnesses. Bottom line: if you have it, get surgery to prevent any further damage!!

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