2 yr old, dx sm, but no chiari, no hydrocephalus, sm syrinx is near tailbone, any ideas how to have less pain

Answers (3) to: "2 yr old, dx sm, but no chiari, no hydrocephalus, sm syrinx ..."

• Irony

  
  
  
  shaynmack, this sounds like a very complicated illness. from my experience, the best thing to do in those cases is to go to hospitals that have a medical faculty (a good one if possible). they have the most experienced staff there and very dedicated students that will investigate this all way through.
  where do you live?

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• shaynmack

  
  
  
  I have been to OU childrens in oklahoma city, cooks children in Dallas/ft. Worth area. I have done everything I know to do. We are currently seeing reg. dr., neurologist, neurosurgeon, physical therapy, and have been put in for occupational therapy. Her feet will be casted on Tuesday for braces. I am so lost. Dr. finally called yesterday (15 days later from 4th MRI) said their is nothing they can do based on location of syrinx. She is unusual patient. MRI once a year. Gave us no suggestions. This is from the neurosurgeon.......Even Shriner's turned us away. She takes Elavil. I give her hot baths often 2-3 times a day, tylenol, and motrin, and somtimes on desperate days I giver her Benadryl. I am tempted to treat the syrinx area with DMSO but no one seems to know or use the stuff....any suggestions?
  
  Thanks
  
  shayla

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• Catherin

  
  
  
  Hi,
  
  Syrinx leads to pain in back, shoulders, arms and legs, and thus she feels the pain in the butt. This leads to loss of sensation of temperature. Other than Chiari, it may also be due to spinal cord getting misaligned, tumor, scoliosis etc. Since she already had MRIs, for unknown reasons, obstruction of cerebrospinal fluid pulsation in subarachnoid space can result in syrinx. EMG study can be performed and drainage is opted as first option. Avoid activities involving straining. The cavity can be reduced by decompression, but neurosurgeon in the only person who would be able to decide on this as she is just 2 years. Give her the prescribed medications without fail and follow up with your physical as recommended. Periodical MRIs are indeed necessary to follow the progression, which would help in deciding appropriate treatment option.
  

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