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Feb 22, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

We claim success with my daughter’s procedure.

Feb 22, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

Prayers to you and your son. My daughter’s nurse commented that nausea could last for up to 18 months after her procedure, but it seems to be getting better. She didn’t experience this prior to surgery. What I’m trying to say is that, even after a surgical procedure, it may not appear to help until a long while afterwards.

Feb 21, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

My daughter goes for her post op check up today. She had her procedure on 12/23/16. The procedure was 7 hours long, She spent several days in ICU before being transferred to a regular room. She was discharged on 1/9/17, with PT/OT three times a week. She will now finish up one more month of PT, and finally be able to get on with her life. She’s hoping to go back to work and be able to drive after her appointment today. She only takes one med, once a day now, and can laugh without a major headache. She’s seeing signs of success in other areas too.

Jan 10, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

Chiari really is a trip! I’m not sure how old your daughter is or where you’re from, but consider if you plan to stay in the same location as her procedure takes place, or if you’ll go back home. Visiting and bringing items she needs or wants need to be a consideration in addition to the obvious of where she’ll get the best care. When I wrote my post about not being happy, I think I was mostly scared because nothing was as we expected. Now that she’s home, I see things differently. Best of luck.

Jan 10, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

Just a quick update…after 17 days, she’s home and doing very well. She’ll need physical & occupational therapy but improving every day. She’s strong and beautiful.

Jan 4, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

I certainly wasn’t placing blame anywhere, but when he stated answers as nearly factual, we tend to lean our expectations in that direction. I would rather have heard, “I don’t know…” as opposed to stats.”
She’s strong, she’ll get through it.

Jan 3, 2017 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

My daughter had the surgery on the 23rd. It was much more than we thought. The surgeon estimated between 3-5 hours, but it took 7 hours. He knew before the surgery she would be in ICU, but not for 5 days. She was just transferred out of ICU to a regular room on Thursday last week. She’s really had a time of it. She had a lot of issues with pain control, and getting out of bed has been a real wow factor. She’s having physical therapy 3 hours a day. She can’t see well enough to read or watch tv, and she’s having trouble pee-ing so they had to cath her again. Think very carefully before having this procedure…it’s not the in & out we were told. We were told she would be in the hospital for a couple days. I asked for the scripts for pain meds and antibiotics prior to surgery so I would have them on hand when she came home. He told us she wouldn’t need anything. I’m not going to bash the surgeon, but I’m not dazzled or happy.

Dec 15, 2016 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

I’ll pray for your daughter too!
My daughter doesn’t have fluid in her head that I’m aware of…and she didn’t need the spinal tap. I’m sorry, I don’t know what normal protocol would be as this is my only experience with it.
My daughter was initially told that surgical procedures at the stage where she was diagnosed- was seldom helpful. Her symptoms are progressing to the point that it’s not at option to forego the procedure now…but there are still no promises that it will help at all, or even if it more procedures will be required.
There’s a young gal in Breckenridge that has had the procedure and it was a huge success for her though- so that’s encouraging. I’ve read several horror stories- I would stay away from those…and focus on the positives.
Best of luck to you and your daughter. I know it’s stressful for the family as well because we want so badly to help and fix things, and we can’t.

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