Hello Community!

I think I might be out-of-luck here but I thought I'd give it a try. I'm a 45 military wife born with Spina Bifida -( lipomyelomeningocele ) and suffering from Tethered Cord Syndrome. I've had 21 surgeries so far and have some more in my near future.

Due to the current level of deterioration, my spinal cord is tethered in two places and even with my high tolerance of pain...I'm needing another procedure. This time, however, I was referred to a group of neurosurgeons at the Barrow Neuroscience Institute in Phoenix, Arizona. There are a couple of surgeons there doing a radical new procedure called Posterior vertebral column subtraction osteotomy or "PVCSO" for short.

The surgeons literally amputate a portion of the spinal column and then bring the two pieces together with hardware and hope a fusion between the two halves comes together. I will have at least my entire T12 removed and possibly T11.

I don't suppose anyone has heard of this or had this done? Or maybe has had a surgery at Barrow's?

Thanks so much! Karen

Karen,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Looks like you checked into the Spinal Disorders, you will find some help there.

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hey Karen, I've not heard of the surgery, but I live here in Phoenix and know all about how AWESOME Barrow is. Matter of fact, the dr. that did my brain surgery in Texas in 2004 was "Barrow-trained". You'll be in GREAT hands at Barrow - it's one of the best Neurological hospitals in the US AND it's a teaching hospital, so you know it has to be great.

Praying your surgery goes really well and that your spine fuses easily. Keep us posted!

Thanks for the encouragement - I was only at Barrow for a couple of hours but it seems like a good place to have this type of surgery performed. I'll be driving in from Atlanta...so it just makes it a little more challenging to be so far from home.

Thanks for your prayers...I'm going on faith with this one!