I'm New my 11 yr old has to have surgery

[Risa]

Hello,

My 11yr old daughter has been diagnosed with scoliosis 6 months ago, I took her back 2 weeks ago for her 6 month follow up appt, and her scoliosis has developed so quick they want to do surgery. Her curve went from 30 degrees to 72 degrees in 6 months. I'm very sick about the whole thing. i really hate to put her through this, then on the other hand I cannot let her get all twisted up. Does anybody know or have any children that has had the surgery? They are talking about doing the surgery in April.


Thanks Risa

[LindaRacine]

Hi Risa...

You might be better off posting in the Parents forums:

http://www.scoliosis.org/forum/forumdisplay.php?f=100

Regards,
Linda

[Lura]

Hi Risa,

My 12 year old son (who has Down syndrome) is having scoliosis surgery on March 29 in Spokane, WA. His curve progressed rapidly between April and December (27 degrees to 43). Your daughters is much further. Anyway this is a great site. A lot of children have recently had the surgery and the mom's are providing great information.

Welcome and read as many of the threads as possible!

Lura

[Mary Lou]

Risa,

I'm sorry to hear about your daughter. You've come to the right place for help. My daughter had surgery three months ago, so feel free to ask any questions/concerns you may have. You might want to read some of the other posts. We always have something about what to take to the hospital, what you need at home after surgery, etc. Also there a several kids who have just had surgery in the past week or so and you can read how things are going with them.

Mary Lou

[Risa]

Hi everyone thanks for all your replys. Still trying to figure out how to use this site. Marylou how is your daughter doing? Does she have a rod in her back too?
How did the recovery go?
Thanks Risa

[nikyergen]

Risa,
We just got home from the Shriners Hospital with our daughter Crystal. She is doing well as can be expected. She isn't running or jogging, but is moving around. The surgery went well. She has two rods in her back and is fused from T2-L2. She has an 88 degree curve, which the doctor got over a 50% correction in. We will find out what her final curve is when she has her check up in April.

My biggest recommendation is to find a surgeon that specializes in pediatric orthopedic surgeries and a hospital that does the same. We had a wonderful experience at Shriners Hospital. They took the scariest day of my life and made it an incredible experience. Their number one concern is the pain management for your child after surgery. They stay hot on it. The nurses feel that with all the medications they have, there is no reason for any child to hurt or be sick from medications.

Ask any questions you want. Someone will reply to you.

Love and prayers to you.

'til later,
Nikki

[Mary Lou]

Risa,

Jamie is doing great. She has a big fusion and has two rods in her back. Her only complaint is her restrictions right now. With the weather getting warmer, it is getting harder and harder for her to comply with her restrictions, such as no riding her bike, no rollerblading, no skateboarding, etc. Physically she is doing great. The change in her appearance is dramatic to say the least. Her recovery from day one wasn't nearly as bad as we were expecting. She returned to school four weeks post-op for half days and by six weeks she was back in school full-time. If there's ever anything else you need, feel free to ask. We are all here for you and your daughter and everyone on this site prays for each other, and trust me, that means a lot.

Mary Lou

[Risa]

Thanks everyone,
For replying, I still haven't recieved my date yet. Did any fo your kids have to have a blood transfusen? The docter spoke to us about it being a possibility if so I would like my family and friens to do the donating. I'm so glad your kids went through it fine, this is got to be one of the hardest things to go through. My prayers are with them. Does anybody know a child that is a couple of years passed thier surgery? If so how are they doing? Hows the pain? Thanks and Prayers Risa

[AC13]

Hi Risa: My daughter (13) had surgery Feb. 15th (T6 to L3) for an "S" curve. She had the rods placed and went from 67 degrees to 29. Her curve moved very rapidly also. She wore a brace for two years. She donated two pints of her own blood and they used one of them during surgery. It's really difficult to come to terms with all of this - no one can stand the thought of their "baby" being put through this but these kids are AMAZING what they can go through and "bounce" back. It's harder emotionally on Mom and Dad. She is doing terrific. Was telling me today she should be able to jump rope - ha-ha - NOT! Hang in there!
Melinda

[Alison]

Hi Risa

I'm six years post fusion surgery as of November 23rd this year. To look at me, you would not know that I've had a spinal fusion, and most of the time I don't really remember I've even had one :-). I would say that I have minute pain (if that), the only time I get sore is if I am exponentially exhausted or after those 3 hour school exams. There's very little I won't do (bungee jumping and sky diving basically being it), or "give it a go at least once", I do more stuff than my sister does whose rodless :-)

Alison

[Risa]

Thanks agian,You are all such an inspiration to me. we will get through this and move on. This site has been such a help to me already. If you have any suggestion on what to ask and or expect please fill free to let me know.
Love and Prayers Risa

[jc3]

hi risa
my daughter is 15 and had surgery 4 months ago and i know it is such a scary thought to have to have them go through this surgery, but if you read all these posts here everyone that is recovering is doing so great. As a parent it is the hardest thing to have to watch your child go through this, but these kids are amazing how quick they recover. Waiting for the surgery is the hardest and most stressful part.
feel free to ask as many questions as you can think of. Everyone here is so great
jennifer

[Mary Lou]

Risa,

My daughter didn't need a blood transfusion, but she did receive two units of blood in the O.R. Her doctor wanted her to donate four units, but she was only able to donate two and they gave both units back to her.

Mary Lou

[susannajon]

Hi Risa,

My daughter had a double major curve and had surgery two weeks ago and she's doing great. I'm curious where you are from and who your surgeon will be?

[Risa]

Dear Susannajon,
We are from central California, my daughter will be having surgery at Valley Childrens in Fresno, Dr's will be Dr. Halsey And Dr. Gatoni (spelled Wrong) there will be two Dr's. They have a scoliosis unit there, and where are you from and where did your daughter have surgery? Risa

[susannajon]

Hi Risa,

We're from Baltimore, MD, and we had surgery in New York City. Our doctor is Dr. Boachie-Adjei at the Hospital for Special Surgery. He was wonderful.

Susanna

[Celia]

Risa,

Your daughter's curve progressed very quickly within a six month period. Was she wearing a brace ?



Celia

[Risa]

Cecil,
In Sept, 2004 I noticed Marisa was very uncomfortable ((Marisa has cerebal Palsey, I have to do everything for her. She does not speak, so I have to guess at whats going on with her) so I took her to her therapist at school and some Drs. that are there, thats when we notice a slight curve. She was referred to an Pediatric Orthopaedic Surgery & Scoliosis Surgery. X-rays were taken and she was diag. with scoloisis at that time her curve was 30 degrees and they weren't going to treat her at this time. She was put on Muscle relaxers for the pain she seemed to be in. (Ikept telling them that this was happing very fast I told Teachers, Therapist Clinic Dr's at her school, Scoloisis Dr. and Primary Dr. I kept calling him to get me referrals, and a Pediatric Physical Medicane Dr. Hes the one that put her on Muscle Relaxers. Marisa is serverly hanicapp and since this has happened to her I never knew that most of her classmates has scoloisis some even worse than marisa. The Therapist and Teachers at her school are shocked that they are going to do surgery on her, because they usually don't. Marisa has no health problems like most she healthy and happy she is aware of her surroundings. She can stand assisted. I just feel blessed that she is a canidate for surgery and at the same time feel sad that the other kids are not. I will try to post a picture of her she's our little angel, she blessed our lives so much.
Risa

[susannajon]

Risa,

Thank you so much for sharing your story. I have such tremendous respect for you! I had no idea what challenges you were facing with Marisa. I feel so blessed to have a child who is self-sufficient, other than the past month during this surgery. I don't know that I would have the strength to face the cards you have been dealt.

There is no greater representation of maternal love than that of a mother for her disabled child. There is no rest for you. You must be ever vigilant, and forever the child's voice and advocate, and your daughter is incredibly lucky to have you! I think that God and the universe sometimes join souls with their perfect match, and it sounds like Marisa has found the very best person to care for her!

Just to comment on blood donation, my daughter self-donated one unit (she was 110 lbs pre-op), and I donated one as a back-up. She used her own and did not need mine.

My heart goes out to you.

[Risa]

Hello,
Marisa's surgery date is for May 18th, I asked about donating our blood and she said it would be a $500.00 fee. has any body ever had to pay for donating their own blood for your children? Risa

[Mary Lou]

We didn't have to pay for Jamie to self donate, but I know it would have cost a ton for myself or my husband to donate and the insurance wouldn't cover us.

Mary Lou

[jc3]

risa
i was going to donate for my daughter and there was a fee. I think it was a hundred and something, definitely not $500. That is ridiculous!
jennifer

[Celia]

Risa,

Marisa is an absolute angel. The love a parent feels for their child is unconditional. I'm glad she was accepted for the surgery. :)



Celia

[nicoles mom]

Risa
Hi My name is Theresa My daughter Nicole is having surgery on march 30 at the hospital for special surgery with Dr. Boachie. My husband just donated blood for her surgery and the cost was 139.00 for one pint.

Theresa

P.S. your daughter is beautiful and in my prayers

[Risa]

Hello Everybody,
Thanks for the sweet remarks I really enjoy reading them :o Also for the information on the blood, I will be looking into it a little further.Risa

[vxsmith]

Risa,

My son is almost two years post surgery. Please let me know if you have specific questions I can answer, or I am available to just listen. My son's surgery was performed at Children's Hospital for King's Daughter's in Norfolk, VA by Dr. Cardelia.

[jc3]

we'd love to hear how he is doing at two years post op. Most of us here our children just recently went through the surgery so we'd love to hear from someone who is 2 years post op
jennifer

[Carlos Alberto]

First i´m sorry about my english, my mothertongue is spanish. I live in Cuba and had a daughter, who has a congenital Kyphoscoliosis. She has been surgical three times. She needs another spinal surgery because staphicococus Aureus caused failure in the last. I noticed of Shrinners and filled aplication to the one of Montreal where my brother live, but the dr equipment says they cannot do this case. Can you tell me about your Shrinner hospital ? How to contact?

greetings Carlos









Risa,
We just got home from the Shriners Hospital with our daughter Crystal. She is doing well as can be expected. She isn't running or jogging, but is moving around. The surgery went well. She has two rods in her back and is fused from T2-L2. She has an 88 degree curve, which the doctor got over a 50% correction in. We will find out what her final curve is when she has her check up in April.

My biggest recommendation is to find a surgeon that specializes in pediatric orthopedic surgeries and a hospital that does the same. We had a wonderful experience at Shriners Hospital. They took the scariest day of my life and made it an incredible experience. Their number one concern is the pain management for your child after surgery. They stay hot on it. The nurses feel that with all the medications they have, there is no reason for any child to hurt or be sick from medications.

Ask any questions you want. Someone will reply to you.

Love and prayers to you.

'til later,
Nikki

[daffyduk911]

Hi, I just had surgery a month ago and the whole thing is easier than it seems in the long run. I reached about 50 or 49 degrees, so 72 would be time to have a surgery soon. the only difficult part was the first week. then everything just sorta went back to normal. i could sit, stand up, do almost anything. i no longer have any pains except for a little pressure when things touch my back. Everything turned out great and its much better in the longrun bc u dont want to have complications when ur older.

Im sure that everything will go well. :)

[MegansMom]

First i´m sorry about my english, my mothertongue is spanish. I live in Cuba and had a daughter, who has a congenital Kyphoscoliosis. She has been surgical three times. She needs another spinal surgery because staphicococus Aureus caused failure in the last. I noticed of Shrinners and filled aplication to the one of Montreal where my brother live, but the dr equipment says they cannot do this case. Can you tell me about your Shrinner hospital ? How to contact?

greetings Carlos

Carlos,
Here are some toll free numbers that may be of help to you. I am sure if you call they can give you the right hospital that can help with your daughter. Good luck. If you need any other help feel free to ask.
Tracy

To refer a patient to the St. Louis Shriners Hospital, referring physicians can contact Chief of Staff Perry L. Schoenecker, M.D. Application forms can also be obtained by calling any Shrine Temple or Shrine Club, or one of the toll-free information numbers: in the United States, 1-800-237-5055; or in Canada, 1-800-361-7256.

For emergency burn admissions to one of the Shriners Hospitals that treat burns, referring physicians should telephone the chief of staff at the Shriners Hospital in Boston, Cincinnati, Galveston, or Sacramento and indicate that the patient needs emergency care. Non-emergency admissions of burn patients for reconstructive or plastic surgery can be arranged in the same manner as orthopaedic admissions at the nearest Shriners Hospital for Children.
Supporting Shriners Hospitals

To make a donation to Shriners Hospitals for Children, you can send a check, made payable to "Shriners Hospitals for Children," to any of the 22 Shriners Hospitals (see addresses of individual hospitals) or to the Office of Development, International Shrine Headquarters, 2900 Rocky Point Dr., Tampa, FL 33607-1460. To make a donation in memory of or in honor of another individual, just include a note indicating who the donation is in honor of or in memory of, and the name and address of the individual who should receive the acknowledgement.

For more information on how you can help support the mission of Shriners Hospitals, see How you can help.

March 08, 200