Upcoming Chiari malformation surgery

Good Morning. Our daughter (11) is about to have decompression surgery next week at Mayo as well. It is a scary time but we have faith. While it is not the same doctor, I am anxious to hear positive responses. Good luck to you.

@kobefam1103 first and foremost, you are at the best place to have surgery with the best doctors. I had decompression surgery for Chiari and Syringomyelia in Sept 2015 at the Rochester MN campus.

The minute you step in the hospital for check in, you will be treated like you are their only patient. Absolutely every single Mayo employee and volunteer provides this treatment no matter what their job entails. Which is how they treat all their patients. Which blows my mind as there are quite a few people around you that are checking in for their surgeries. I would love to know their secret! The care you receive throughout you entire stay at the hospital is phenomenal!

My surgery was successful with a smooth recovery . The surgery did what it was suppose to do, it stopped the progression of my Chiari and Syringomyelia. I was warned by my surgeon that I would be in pain, but they would prescribe pain meds, but I still would be in pain. I was very blessed that my days after were nausea and an air headache. This was helped with Dramamine and ice packs. I was also prescribe pain meds to take, but one the anesthesia wore off I only had the headache and nausea so I asked if I could discontinue the pain meds. My surgeon told me, at my three month checkup when discussing how my recovery was, that I was a rare patient to experience only nausea and a headache.

Make sure you follow all direction provided by your doctors and nurses this helps make your hospital stay and home recovery so much smoother. I was back at work in six weeks working full time. I did receive a call from from surgeon’s nurse asking how I was doing a week after surgery. The patient portal is very useful after surgery for any non emergency questions.

Just remember that everyone’s recovery will be different. I asked family, friends and co workers for their prayers in so I would calm and at peace before and after surgery and that surgery was successful. I had faith in GOD and my surgeon. I know GOD was working thru my surgeon.

I consider my entire medical team at Mayo as members of my family. I love them like family. I can no longer remember what my life was like without them.

Sending prayers to you for a successful surgery and smooth recovery! 🙏🏻🙏🏻🙏🏻

Thank you all!

Did they drain your cyst, or did it reduce in size because of surgery?

So great to hear a success story. I have a young adult child that was diagnosed with syringomyelia at age 16. Is managed with medication which takes edge off pain and allows him to function. Anyone with chiari or syringomyelia or both, asap.org if you don’t know about it is awesome. We have attended some conferences and our teen at the time got to meet others their age with same issues. Unless things have changed they don’t tend to drain the syrinx because they say it just fills up again.

@kobefam1103 the syrinx was drained. Upon opening of the dura the surgeon could see it and decide to drain it as well due to the severity. I have attached my before and after surgery MRIs.

Wow, great info!
How was your pain after surgery?

Did you go to Mayo J’ville?

How have you been since-did your symptoms get better, any subsequent surgeries, leaks, etc?

Thank you!

Thank you to all these replies and back and forth. We really appreciate it!

Our daughter had decompression surgery with Dr. Ahn on Wednesday - March 29, 2023. Mayo and Dr. Ahn’s team are Amazing!!! Almost no pain after surgery- we were released to the area Friday for a few days before heading back to MI. This has been amazing!!! Her central sleep apnea is nearly gone. What a relief to watch your child breath at night instead of these long pauses of no breathing. We are blessed!!! Thank God for Mayo and Dr. Ahn!

Is he w Jacksonville?
Did your daughter have a syrinx or cyst? Thx!