Son who is 15 was just diagnosed with this while in the hosptial with perforated appendix surgery.. He has Chiari I. He really has no symptoms of this but the neurosurgeon says he needs surgery. Should I question her? She is the best neurosurgeon in town. She told me he actually had this on his last MRI which was 7 yrs. ago and no one told me. He also was diagnosed with Kyphosis of his back while we were there.
If he has surgery, does anyone know how long they are hospitalized?
In my opinion, I think you should find out if there were changes between the mri's from now and the one's 7 years ago, mostly if the syrinx was there or not.. If he had the Chiari malformation then, but no dilated central canal or centrally located small Syrinx (Syringohydromyelia) then that might be what is warranting her to want to do surgery. I have heard that small syrinx's can be prevented from worsening at this stage (Syringomyelia video on The Chiari Institute website). She might just be helping prevent it from worsening and causing permanent damage to the spinal cord.
If the Syrinx was there the last time he had the mri's 7years ago, they might monitor it. But Kyphosis and scoliosis are both linked to syrinx's both idiopathic and/or related to the Chiari.
You are doing the right thing by researching the conditions and being his health advocate, you are a good mom! Keep researching and if you want, look up your other options for a second opinion if you are not comfortable with the surgeon.
As for surgery recovery, that is mostly on a person to person basis. Some patients need more extensive surgeries than others, and there are a lot of health risks involved in this type of surgery that sometimes can prolong the recovery.
Many people with Chiari and/or Syringomyelia have connective tissue disorders like Elhers-Danlos and this can be something that will make the surgeon take extra care with things like closer of the surgical site with gentler closer methods.
Hope this helps, good luck to you and your son, please keep us posted! Stacey
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