Cant even believe I am saying this but we are HOME 2 days after surgery! Julia is doing great! I cant wait to have the time to write about our entire experiance and I will as soon as I stop feeling like I was run over by a mack truck. I just wanted to let all of you know that it will get better. And one day, everyone will know about Chiari and then we will have a cure! I really love you all because of the bond we share, truly remarkable people and so happy I found you when we neede you most!
I promise to write soon!
Love,
Nicole
Proud Mommy of one of the bravest girls I know!
Thanks for letting us know. Sooooo thrilled to hear Julia is doing so well and that you're home with her. Things must have gone VERY well.
Keep us updated.
XO Christine
Thanks Christine, still can't believe it- What a week but if you saw her right now it was all sooooo worth it!
Thank you !
Tradee30 said:
I am so glad to hear Julie’s surgery went well and she is recovering nicely! Alexa is now 4 weeks post-op and despite a few setbacks she is doing better and goes back to school tomorrow. Did your daughter need a duraplasty? Unfortunately Alexa developed chemical meningitis (which we were warned about) and it set her back a week in recovery. It was bumpy for a while! Take care, JoAnne
Hi Joanne, Yes Julia had duraplasty along with c1 laminectomy and the decompression. I feel like im walking behind her as much as possible just to stare at her scare to make sure it hasnt changed ! Dont tell her that though! :) SO far so good. Having some mother daughter attitude issues because she thinks she is fine now and doesnt rest as much as she should but considering the alternatives Ill take some attitude from her! Good luck with sending your daughter back to school!
Love,
Nicole
Joalexa said:
I am so glad to hear Julie's surgery went well and she is recovering nicely! Alexa is now 4 weeks post-op and despite a few setbacks she is doing better and goes back to school tomorrow. Did your daughter need a duraplasty? Unfortunately Alexa developed chemical meningitis (which we were warned about) and it set her back a week in recovery. It was bumpy for a while! Take care, JoAnne
Thank you so much Abby, this site and everyone here has helped so much! I am so grateful!
Abby said:
Wonderful.
So glad it is behind her. Now rest and recover.
God bless you all.
Thanks! She got through the day fine but crashed the minute we got home 
She’s a freshman in high school and has plenty of work to make up (ugggh). I like the attitude, it means they feel better! And Alexa already noticed her neck and arm don’t have the constant ache she had before surgery, so perhaps the syrinx is shrinking already (fingers crossed). We have the repeat MRI in December to check on her progress, and other than that, she’s cleared for physical therapy and normal activities. Hope Julia feels better and better every day and don’t forget to take care of yourself! Take care, JoAnne
Nicole Casella Piotrowski said:
Hi Joanne, Yes Julia had duraplasty along with c1 laminectomy and the decompression. I feel like im walking behind her as much as possible just to stare at her scare to make sure it hasnt changed ! Dont tell her that though! SO far so good. Having some mother daughter attitude issues because she thinks she is fine now and doesnt rest as much as she should but considering the alternatives Ill take some attitude from her! Good luck with sending your daughter back to school!
Love,
Nicole
Joalexa said:
I am so glad to hear Julie’s surgery went well and she is recovering nicely! Alexa is now 4 weeks post-op and despite a few setbacks she is doing better and goes back to school tomorrow. Did your daughter need a duraplasty? Unfortunately Alexa developed chemical meningitis (which we were warned about) and it set her back a week in recovery. It was bumpy for a while! Take care, JoAnne
Good to hear some happy news :)
I am so happy things went well for your daughter! This is great news!
Hi Nicole! Hope everything is going well with Julia. Unfortunately Alexa has a large pseudomeningocele. Who did Julia’s surgery? I think I need a second opinion.
Thanks for any help!
Take care, JoAnne
Hi JoAnne, SO sorry to hear about Alexa. I know so far everything is going ok with Julia but I keep holding my breath waiting for something to show up, Im trying to be postive but I am a nervous Mommy. Julia was seen by Dr Feldstein at Columbia and then by Dr Wisoff at NYU. We went with Dr Wisoff at NYU because he listened the most about Julia's Chiari symptoms. Feldstein was wonderful too but he told us to stall surgery where Wisoff was ready to help Julia asap! Please let me know how Alexa is doing and if I can ever help out with anything know I am here! Love, Nicole
Hi Nicole! I am happy to hear Julia is well. I am just a wreck as you can imagine. What patch did Dr. Wisoff use? Dr Sutton used Duragen which is laid on, but said IF there is a revision surgery he would use a synthetic patch that is sewn on. .They are hoping with the meds the PM will resolve but this is so, so hard. I may contact Dr. Wisoff for a second opinion. Thanks for the info on the patch and your support. I really need it!
Love, JoAnne
I'm glad you are home a feeling great but remember rest is the key to getting back to somewhat normal.
take care
tradee30