June Surgery Date

[tulsamom]

This is my first post to this forum. I have been reading them daily for the last couple of months. My daughter, Shelby, is 12 1/2 years old and she will be having scoliosis surgery June 19th. We live in Tulsa, Oklahoma. She is in the seventh grade and her scoliosis was discovered at a school screening in the beginning of her 6th grade year. This has been hanging over our heads for 1 1/2 years. We went back to see her surgeon yesterday and we have scheduled surgery. She has two curves that started out at 20 and 44, they are now at 40 and 64. She is having alot of pain now. She is very active in basketball and softball. She is being so mature about all of this, I think because of the pain she is experiencing she is ready for surgery. Even though we still have quite some time to wait it is a relief to actually have a date. I have really appreciated all of your stories, it feels better knowing we are not alone.

Kathy

[flowerpower]

Hi and Welcome,

Just wanted to send good wishes to you and your daughter. If you have any questions at all feel free to ask - this is a wonderful support group and someone will always answer you questions.

Renee

[AnnLF]

Welcome!

You've come to the right place -- you'll find an amazing group of folks who will stand by you through Shelby's surgery. There's a group of us on this forum who connected before our kids' surgeries back in November-December and have stayed connected.

What a relief to have your date...June will be here before you know it. Let us know if we can answer questions.

In the meantime, we will keep Shelby (and you!) in our prayers. Ann

[dancermom]

Hi and welcome to this forum. It is an incredible place of support and information. I also live in Oklahoma, but in Oklahoma City. My daughter had surgery at the end of November so we are 4 months post-op now. It was harder waiting on the surgery date to finally arrive than it has been after the surgery took place.

I will keep Shelby in my prayers as well as your family. Hang in there and know that you aren't alone.

Connie

[brittaboo]

First time visitor

This is also my first time to the site and I'm so glad I found it. We just scheduled my daughter's surgery for June 14, very close to your daughter's date. She is a junior and we've been dealing with this since 8th grade. we had high hopes that she would stop growing before surgergy was required, but no such luck. I have so many questions and am VERY nervous about the whole procedure, as I'm sure you are.

My daughter will be having surgery at the Mayo Clinic in Rochester, MN. Her surgeon is Dr. Stanz. We feel very lucky to have him as our physician. I'm curious if anyone reading has had him as their surgeon. If so, what was your experience.

I've been trying to prepare for post-op prepartion and am looking for any tips on things we can do or have at home to make her more comfortable. We have many stairs in our house and from what I read, it sounds like stairs can be very painful during the first few weeks. Any advice?

I will keep you and your daughter in my prayers.

[flowerpower]

Hi,

Sorry to hear your daughter will need surgery but you will get lots of help here. For home, we got a 3" (maybe 3 1/2) memory foam-type mattress for my son's bed. We found one for a reasonable price at Wal-Mart. Also some comfortable pillows for support. He liked a body pillow to support his head and shoulders, one regular pillow under each arm, one under or between the knees or behind the back if they are on their side. A cup with a lid and bendy straws came in handy. I kept by his bedside a small basket with a thermometer, extra dressing, baby or facial wipes, washcloth, chapstick, cotton balls & rubbing alcohol (to help remove sticky stuff on skin from bandages but be careful not to touch incision). I also kept some snacks like applesauce, crackers, bottled water close by. If anything else comes to me I'll add in later.

My son didn't have as hard a time with our stairs as I thought he would. He went up and down the stairs a couple of times the first night he came home. There may have been one time when he felt kind of dizzy. You should stay close when she manuevers the stairs the first few days at home. If her curve(s) is large, she may feel dizzy or off-balance as her body adjusts to its new position and her body recovers from the shock of surgery or the meds may make her dizzy also.

Hope this has been somewhat helpful. Take care -

Renee

[Snoopy]

Hi,

My daughter is 15 months post-op and I had my husband bring her bed downstairs for her recovery period which meant that she only had to go up the stairs when she wanted a shower. We found that since the TV, DVD player, and vidoe games were on the first floor, it made sense to have her bed downstairs.


Mary Lou

[tulsamom]

Yes, I am VERY nervous about the surgery as well but feel very confident
with our surgeon. He mentioned using BMP (bone Morphogenetic protein) to accelerate the fusion process. Has anyone heard of this? I guess it is fairly new from what I have learned on the internet. My daughter will be fused from T3 to L3. I am also nervous about the post op care but I guess you cross that bridge when you get there. I will keep your daughter (and you) in my prayers as well.

Kathy

[flowerpower]

I inquired about using BMP when my son had his surgery in Dec. From what I learned and my dr. also confirmed, BMP had been approved for limited use in adults by the FDA but not approved for use in children. My dr. also confirmed this and also said it is very expensive (I think about $3-4,000 per vertebrae) and insurance doesn't cover it.

Renee

[brittaboo]

Thank you for the great tips and kind words. I'll need to stock up on some comfortable pillows. I too am very confident about the surgery and my daughter, Brittany, is mentally ready for it to happen. She's beginning to struggle with back pain, so I know this is the right thing to do long term.

I spoke with the physcian's assistant yesterday and rather than using Brittany's own bone, they have a type of "bank" where they use bone fragments they have stored from hip replacement surgeries. Does that sound familiar to anyone? They have been doing this for quite some time with great results. It eliminates the pain of taking the patient's own bone because from what I understand, that is more painful than the spinal fusion.

Again, I am so thankful for this site! Conversing with mothers who understand
how scary this is, is so helpful.

God bless!

Sharon

[flowerpower]

Hi Sharon,

I think the use of donor bone is fairly common in scoliosis surgeries. Hope your daughter is doing ok with all this. Any other questions feel free to ask

Renee

[brittaboo]

I'm glad to hear this is common practice. I know it made me feel better when I heard they didn't have to take her own.

My husband and I both work full-time and I'm trying to anticipate the amount time we'll need to take off to help Brittany with her recovery. Any experience in this area would be very helpful.

Our doctor also mentioned that a blood transfusion may be required. Has this been something others have experienced?

Thanks to everyone for your help!

Sharon

[flowerpower]

Hi,

My DH and I spent 6 days in the hospital with Joe. My son was home about 4 weeks before he returned to school. I would say ask your dr. for an opinion as to how long you may need to be home with your child.

As for blood transfusions, Joe's dr. wanted him to donate 2 units of his blood for his surgery. Because of a recurrent strep infection, he only ended up donating 1 unit of blood and his dad and I also each donated a unit of blood 1 week prior to his surgery (fortunately, we all share the same blood type). He did not end up needing any blood during his surgery, although they transfused the unit he donated at the end of the surgery to give him a little "boost". If your child may need to donate blood for surgery I would recommend taking a multivitamin daily. Your surgeon may also recommend an iron supplement prior to donation/surgery.

Renee

[Snoopy]

I would plan on needing to be home maybe six weeks maybe less if you could leave work early if your daughter gets tired and needs to come home. The first week or so back to school can be exhausting. My daughter's recovery was very much like Joe's, but some others take longer to recover. Jamie is 15 months post-op and fused from T3-L2. She spent six days in the hospital; returned to school part-time at four weeks and full-time at six weeks and has never looked back!

I agree with Renee's suggestion of starting a multivitamin before surgery. Jamie's doctor also started her on iron pills before donating blood and continued them for several weeks after surgery. Jamie's doctor wanted her to donate four units of blood, but she was only able to donate two which were both given back to her in the O.R.

My thoughts and prayers are with all of you facing surgery. The day of surgery was the scariest, hardest and longest day of my life! However, having the surgery done, was one of the best decisions we've ever made!

Mary Lou

[billyjoe]

Another June Surgery!

Dear Tulsamom,
This reminds me of watching the 3 Elizabeth's. I have been watching and learning for several months now and feel that I could not go through this experience without this forum.
Our daughter Tori is 13 and also in seventh grade and her surgery date is June 1st. It is drawing near and we too are trying to prepare for the experience and the aftercare. Tori also has an S curve (approx. 50T 48L) and is going to have her upper curve corrected from T5 to T12. We will learn the exact measurements at our pre-op appt. on May 19th. The time goes so fast. June 1st is just around the corner now.
Tori is having her surgery done at Boston Children's Hospital. We live in Vermont so it is about a 3 1/2 - 4 hour trip for us. We have alot of confidence in her surgeon and in the hospital we chose. I am so nervous about the surgery. I just keep trying as hard as I can to do my best so that i can be strong for her.
It is so great to know that you and Brittaboo also have June surgery dates and that we can support one another.
Patricia

Daughter Tori having posterior surgery June 1st
curves: T50 L48
surgery: posterior with possible thoracoplasty
surgeon: Dr. Emans Boston children's Hospital