So you or your child have been diagnosed with Chiari malformation , syringomyelia, or both and you are told you need surgery for treatment... what do you do next? It's a perfectly good question considering it's one that needs to be asked before brain surgery, and we'd like to help take some of the anxiety out of your decisions!
To learn more about surgical treatment for Chiari Malformation and Syringomyelia, watch the CM/SM Patient Handbook video to hear leading neurosurgeons and scientists tell you what you should be talking about with your medical team after diagnosis. Read more about what to expect by downloading the Chiari Malformation & Syringomyelia Handbook for Patients and Their Families for free, or by purchasing a hard copy online here .
This is a list put together via Facebook poll, asking Chiari/syringomyelia patients like you what were some of their essential hospital items that helped make their stay more comfortable... despite that pesky "major surgery" thing!
* - Denotes an item good for Chiari Malformation/Syringomyelia patients and parents
- *Pillows (the comfier, the better!)
- Comfortable blanket
- A favorite stuffed animal
- Extra undergarments
- Pajamas (loose neck or button down)
- *Comfortable outfits (to change into)
- Oversized T-shirts/sweats
- *Notebook for note-taking
- *Eye/sleeping mask
- *Personal toiletries
- *Face/body/baby wipes
- Dry shampoo
- Hot/cold packs
- * Nonperishable snacks
- * Bottled water (with nozzle for easy use)
- *Disinfecting wipes
- Chapstick/lip balm
- * Books/magazines
- Portable DVD player
- *iPod or music player
- *Crayons/coloring books (adults, too!)
- Handheld toys (electronic & otherwise)
- *Phone charger
- *In fact, chargers for all devices you bring!
The most unsettling part of any surgery is what happens afterward, and what makes Chiari and syringomyelia surgeries so frustrating-- to patients and doctors, alike-- is that everyone's experience is different. Recovery can be quick, or take a few years. Some Chiari Malformation or Syringomyelia symptoms may persist (though usually at much more manageable levels), and some may disappear forever. Everything that does or does not happen with your body after any type of surgery is usually based on your body, and will wind up being different for everyone.
Therefore, it's extremely important to keep a dialogue going with your surgeon, general practitioner, and all other physicians who you see to keep track of your/your child's long-term health.
Last Revised: 10/2014