|
|
Veteran
Posts: 192
 
Location: Bloomington, IN | I need advice about neurosurgeons. Who is best for detethering the spine? |
|
| |
|
Elite Veteran
Posts: 795
Location: Levelland, Texas | We used Dr. Mancuso in San Antonio. Dr. Mancuso was wonderful and since we are going to do all of our rib surgeries in San Antonio we just decided to use someone that works with Dr. Campbell. Does Marlee have a tethered cord? |
|
| |
|
Extreme Veteran
Posts: 424
| Caroline's Neurosurgeon is Dr. William Boydston in Atlanta, GA. He's at Children's Healthcare of Atlanta at Scottish Rite. Very renowned hospital and group.
Shannon |
|
| |
|
Veteran
Posts: 192
Location: Bloomington, IN | Thank you all. I just want the best for my little girl. This surgery scares me to death. One wrong move and Marlee could never move her legs again. I know that any doctor could do that but I just want someone who is going to do the best job. That's what Marlee needs and that's what I am going to find her. |
|
| |
|
Elite Veteran
Posts: 971
Location: nixa mo | Dr. Mancuso did Noah's very complicated TC release. If it wasn't for her reviewing his films and finding the lipoma at the cerivothoracic junction and his fatty tight filum I know Noah would have ended up with terrible neurological deficits. |
|
| |
|
Veteran
Posts: 192
Location: Bloomington, IN | Stacy-
Marlee does have a tethered cord and a syrinx. I also would love to see a doctor that works with the VEPTR team in San Antonio. Marlee has to have some MRIs and tests and I am going to be sending it all down there. I am just wondered that living so far away will cause a problem. Like will they want us to come back down there for a pre-op visit and then for surgery and then again for post-op. Because that would just not be practical. It was hard enough making the trip down there for the evaluation. I don't think that we could come and go that often. I just don't know what to do.
|
|
| |
|
Extreme Veteran
Posts: 424
| We live in GA and it's not an easy or inexpensive trip to San Antonio but we chose Dr. Campbell because Caroline is multifactoral. We mailed all of her records initially and went for an eval. She has had two surgeries there and due for another next month. We have gone about twice a year. Not as bad as we initially thought but still a haul nonetheless. Our insurance pays for the surgeries but the trip is on us! Luckily, we're able to plan far enough out to get time off work, arrange care for our son,etc. Also, we've lucked out with some Buddy passes through Delta for our transportation. Several of the hotels offer discounts, too.
Shannon
Caroline's mom 7 yr arthrogryposis, severe kyphoscoliosis, s/p tethered cord release, trach and G-tube dependence, VEPTR #263 SAT |
|
| |
|
Extreme Veteran
Posts: 424
| I forgot to add that San Antonio required Caroline have her laminectomy before VEPTR surgery and we had it done at our children's hospital at home and sent TX the records and post-op MRI.
Shannon |
|
| |
Neurosurgeons
