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Thank you it took me a minute to figure out how to reply. 

Hi @mlowe, I have a bunch of info for you. Let me collect my thoughts, and I'll get back to you soon. I think what I have to write will help you better-evaluate this big decision. Please keep an eye out for another reply!

I hope that you will please share with the whole group! Thank you!!

Certainly! I'm writing it up and gathering photos/images.

Thank you so much!! We went today to her Scolosis dr we don't live near Mayo. He said her Scolosis is 60 plus now. X-ray was so blurry. He said surgery in the fall. I want to get referrals for opinions. She's special needs epilepsy non verbal. It's just a very scary decision! What if I make the wrong decision, what if something happens to her? Thank you so very much!!!! 

@mlowe, this is a very big decision to make, especially on your own, and having as much up-front info as much as possible makes it easier.

The surgery definitely helped. I’m not sure what different surgeries are out there to treat this. I know this was called spinal fusion.

(Note: I will post photos soon; currently the Connect platform is having an issue with posting images, but they are working diligently to resolve this.)

Prior to surgery: If you decide to move forward with it, they do pre-surgery testing the monitors how her body/spinal cord/nerves work, and record it. It’s painless. They hooked my daughter up to wires on her head, arms, and legs. Then, they run this recording while performing the surgery to ensure that they spinal cord isn’t injured while they are repositioning the spine.  They will also have a pre-op appointment and run labs, just like any other surgery. They also tried to collect her own blood in the event that she needed a transfusion, but they couldn’t make it work as they needed to use large needles to prevent clotting while collecting, and her vasculature was just too small for the needles.

During surgery:  Her surgery was scheduled for 7:30 a.m., and she was in recovery by 4:00 p.m. They estimate how long it will take, but the doctor told us that he will take his time and take as long as necessary to do the job correctly. They called us every two hours to give us updates; they were actually in the operating room about two hours before they even made an incision. They let her bring her favorite stuffed animal into the operating room with her; I think most hospitals do this. That made her feel a lot better!  

The surgery: They inserted two titanium rods using titanium screws. Light-weight yet very strong. Her incision went down the length of her spine from the base of her neck to her waist line. It actually healed so nicely that it’s virtually-invisible now. It was glued shut, so there were no sutures or staples that had to be removed afterward. The nice thing after the surgery was that she no longer required a back brace any longer.

After surgery:  The hospital allowed me to stay in her room with her the entire time. They had her start sitting up the next day, and it progressed from there regarding movement, but after the third day, she wasn’t progressing quickly enough, so they decided to do a blood transfusion; it was amazing how quickly she progressed after that. They taught me how to change her dressings by having me help them in the hospital. After a couple of days, they have a physical therapist come and start having her walk more and doing stairs. (They should ask if she has to use stairs at home.) The requirement to be discharged was to walk a bit, do stairs, and gave a bowel movement, but my daughter hadn’t had a BM yet and they let us go home anyway with guidelines regarding bringing her back if she hadn’t had one by a certain day.

Post surgery (at home): Someone had to be with her at all times for a while. She had to use prescription pain medications for a few weeks, but that tapers down to Advil or Aleve eventually (they like Aleve because it's longer lasting). Kids usually go back to school at six weeks, but my daughter took longer… they made it clear that every kid is different and to go by how the kid is doing. They aren’t allowed to go back to school if they are taking heavy-duty, prescription pain meds though.

In June 2015, she did fall at school right on her butt -- hard enough to knock the wind knocked out of her -- so I took her to the doctor the same day.  They said she was fine despite a little bit of a sore tailbone, and that her back is actually the strongest part of her body now.

She’s good now. She does come home every day from school and plunks down on the couch, but her sister does, as well. Sometimes she says that the incision is itchy, but it doesn't bother her too much. She has more, regular pain from other issues (migraines and peripheral neuropathy in her toes and fingers) than she does from her back. (She's had the peripheral neuropathy since age 10, and this surgery actually seemed to help a little with this.)

Of course, whatever doctor you see and hospital you go to might do things somewhat differently, or technologies may have changed/improved, but this info should give you a good idea regarding what happens.

As mentioned above, this is a big decision, and you’ve already been through a lot raising a daughter with needs on your own. Hopefully, this info helps; please let me know if you have any more questions.

@mlowe and @vickiekay, here are photos associated with my post above.

For the photo of her scar, that was taken December 30, 2014, and her surgery was December 9, 2014. Her scar is virtually-invisible now.

Wow. I am thankful that the surgery went well and that everything looks corrected! My spine looks like the "before" photo and I am in constant pain...even with meds. Thank you for the encpuragement that this post provides. Xoxo

Thank you, as well @vickiekay! It is a very difficult surgery to go through, and it's had to watch your child be in pain as such a young age, so you wonder if you've made the right decision. Knowing what she has avoided in the long run as she ages, thanks to your insight, makes me feel like we indeed did make the right decision. {{{hugs}}}

<3 I am thankful!!