Update on Saylor

[jennilynn]

Took Saylor to her 2nd opinion doctor at Rady Childrens in San Diego. Much happier with this doctor.

Redid xrays and measurements, she's measuring at a 66 vs. 56 as originally done in April. Could be the way it was done last time, could be the injury/swelling etc that gave us different numbers, not sure. But what we do know is that she recommends surgery sooner. Due to the level of Saylor's curves, she is not comfortable with performing surgery herself, she's not as up to speed on the surgery (wish our insurance had known that); but she is referring her to one of her colleagues who is exceptional in the surgery. Forgot his name at home, but from what I found online he's good.

She feels that saylor's growth spurt is probably nearing the "end" at this age, and has recommended the MRI to see why she's in pain and a hand xray to see the growth plates. This will identify her growth and if she's in the 4/5 range of growth, we move on the surgery this fall... definately need to see the MRI first though. So at least we have a plan for now and we'll see when the MRI is done, probably later this week. Waiting for insurance approval right now - then we'll schedule it. Finally!

I'll keep everyone posted. The one thing she did say, she called her colleauge and he agreed, the brace is not working for her, it's hurting her where she had the injury, and to stop wearing it for now. At 66 with impending surgery, and pain associated with it, it's not worth it right now. Needless to say the child was thrilled.

Jen

[ArabianFancy]

Prayers for both of you. I hope the MRI shows the cause of her pain. I am glad you have a Dr. that you feel confident with. If you don't like the one you see next, KEEP LOOKING. Your Mother's instinct will let you know when you have found the right one. I am glad she no longer has to wear the brace to but am sad that she has to have surgery. It was really the only option for Mandy and she is doing GREAT. Keep us posted please and let us know what the MRI shows. As a former MRI Tech I really want to see that! Did not have one done on Mandy.
((((((((((((((((((((Hugs and prayers)))))))))))))))))))))))
Gina

[Gryffindor]

Jennilynn: I'm glad that you found a Dr. that you're happy with. It can make this difficult experience much easier when you are comfortable with the level of care.

My daughter was originally terrified of having the MRI done. I scheduled an emergency appt with her primary care physician so he could calm her down about the process. She was mostly worried about the contrast dye as when she was given it for her CAT scan she said she didn't like the way it made her feel.

It turned out her fears were for nothing. The MRI was ordered w/o contrast (we didn't find out until just before she was to enter the MRI). She took a CD of music she had on her ipod and they were able to play it for her through the MRI. She thought she had only been in for about 1 hour when it was actually a bit over 2 hours. Luckily, nothing was found abnormal, except for the scoliosis, with the results. Make sure you ask for them to send you a copy of the disc.

We never did have the hand x-ray done but I believe they got my daughter's Riser score from the x-rays they did in March (I think they determined her score based on her pelvis).

If for any reason you run into problems with your insurance, just let me know and I can get you in contact with the Shriners. All of their care is free and it is not income based but it would require you to come to Phoenix for one of their outreach clinics, and for the surgery you'd need to go to SLC. Shriners will pay for your and your daughter's plane ticket to SLC.

[jennilynn]

update

I updated one of my earlier posts, forgetting about this.

Surgery is scheduled.... not enjoying the tension in my body right now!!!

Jen

[Gryffindor]

Jen: Try not to dread it too much. You can read my post about the experiences I had while my daughter was in the hospital for her surgery to see what possible scenarios you may be facing.

If you have any questions, post them. If it weren't for this forum I would have been so lost. This was my safety net when things got tough.

I don't know if this will make you feel any better or not but my daughter hardly remembers anything about her hospital stay. She says she keeps trying to remember but can't.

Best words of advice:
1. Pain management. Make sure the hospital stays on top of this.
2. Digestive tract: This is the big one. Because of the high powered meds they'll likely put her on, getting her digestive system moving again can be difficult.
3. Trust your mother's intuition. If something doesn't feel right, stick to your guns.
4. Take care of yourself during the stay.

[ArabianFancy]

Jen, give me a call any time you want to talk to someone and ask all those crazy questions you have. Mandy almost 9 months post op and had the perfect surgery and follow up. She is doing GREAT!!

601-67- 5707
Gina