New here & just trying to figure out what the best options are for my daughter. Help

[Sierras Mom]

Hi thank you for reading this. My daughter had her first two spine surgeries in 2008 done by Dr. John Johnson in Louisville, ky. I did not like him from day one but my daughter's Pediatrician said he was the best. At first she was fine but then began to have pain at the top of her scar and over her right shoulder. After repeated visits with him only saying that she needed therapy, I got frustrated and asked to see Dr. Puno. Right away Dr.Puno found that her bars were coming through her back, one was - coming through the skin in the middle top of her back and the other had cut through the muscle on her right shoulder. So Dr. Puno did surgery on her taking out the original harrington bars and replacing it with a rod that only goes from her neck to midways on her back.

After repeated visits with Dr. Puno, he does not see a problem with her back, he won't even schedule an MRI until December. Her back has begun to hump over the right shoulder badly, the back of the spine appears to be pushing inward causing her stomach(what little stomach she has that is) to pooch out, and her body is beginning to twist around towards her front right side and she cannot walk straight. She's in pain everyday and it's horrible. She has also lost a inch of height now.

She had a horrible "s" curve to begin with, somewhere around 70% curve on the top and 60% on the bottom. When they opened her up they found that her spine was twisted backwards and they had to turn it around. I might also add at this point that she has also gone through 3 open heart surgeries because of Pulmonary Atresia with VSD and overriding aorta. She is being treated for seizures, has a slight learning disability and has recently developed acid reflux which could be a commom side affect to problems with the spine I have read.

I am scared to death, I look at her and wonder how much longer can she take this before something else happens, her back is so bad that it just looks like its about to explode. I fear if we don't do something soon there will be irreparable damage done to her.

I know this was lengthy but we need help. I am considering finding another doctor...would prefer him to be one of the best and I'm willing to travel out of state if I have to in order to get her the help she needs. I don't even know how we would manage or afford going out of state since my daughter recieves health insuance through the state but I don't know what to do. Dr. Puno is a wonderful doctor but somehow I think he is just taking the spine in consideration alone, she looks as if she needs her whole back reconstructed at this rate. Please I would like your feedback on doctors that you feel are the best and those to stay away from, or even just any advice. Thank you again for taking the time to look at this and if you prefer to reach me through personally, you can email me at:

krnoon1@gmail.com
.
These pictures were taken today of her back. If you would like to see what her back looked like before and after her first surgery you can see them on youtube at: http://youtu.be/UsqBZf44NVE

IMG_20111014_004717.jpg IMG_20111014_004728.jpg IMG_20111014_004747.jpg IMG_20111014_004758 (1).jpg

Have a wonderfully blessed day!

Kellie Noon

[Doreen1]

Hi Kellie,

Thank you for sharing your journey. I'll pray for you to have strength to find a solution for your daughter's situation and also pray for your daughter to keep strong. How old is your daughter?

Dr. Lawrence Lenke is one of the top spinal surgeons for both pediatric and adult scoliosis. http://www.stlouischildrens.org/cont...x12mem_id=1778

He does a lot of revision surgeries and specializes in the most severe cases.

Dr. Lenke is also head of the spinal dept. at St. Louis Shriner's Hospital who provide surgery to youth under the age of 18 at no cost. I suggest you call Dr. Lenke's office at 314-514-3500 and talk with Naomi to see what your options are.

I am traveling out of state for a surgery with Dr. Lenke for myself.

There are other families on this forum whose children have received help through Shriners. I'm sure you'll hear from them soon.

Warmly,
Doreen

[LindaRacine]

Hi Kellie...

I'm sorry to hear that your daughter has had such a difficult time.

Dr. Puno's partner, Steve Glassman, has a good reputation. I don't know if they allow patients to move from doctor to doctor in that practice, but it might be worth an inquiry. Also, I agree with Doreen, that Dr. Lenke would be an excellent choice. Unfortunately, there's usually a bit of a wait to get in to see him.

Regards,
Linda

[leahdragonfly]

Hi there,

I am so sorry to hear about all your daughter's troubles. From the photos and your description of her back, in really sounds like she needs to see another revision expert. As Linda mentioned, Lenke would be a great choice. He also has a partner, Dr Scott Luhmann, who is outstanding and specializes in pediatrics. Dr Luhmann did my daughter's surgery at Shriner's St Louis, and we loved him. Dr Lenke I believe also does some work at Shriners St Louis.

I would strongly recommend you contact Shriners Hospital St Louis directly. Dr Luhmann's nurse, Janet Schick, should be able to assist you. Her number is 314 432 3600 x 1611. In the meanwhile you can download an application (which is a simple formality) and send it in. The only requirement is the child would benefit from Shriner's specialized care, which goes without saying in your daughter's situation. All care is free of charge to the family, although they will bill any insurance that is available to defray the costs to Shriners.

My daughter had a simple surgery (vertebral body stapling), but we had wonderful care in St Louis. Family services there can assist with travel arrangements/lodging/expenses etc. Everyone was very helpful and supportive.

Good luck, don't be afraid to persist until you get your daughter seen. Please let us know how things are going.

[Sierras Mom]

I cannot tell you all how I appreciate the great information. I did call Dr. Lenke's office today and he does not go to Shriners any longer, they suggested Dr. Bridwell who actually taught Dr. Lenke. I called Shriners and they mentioned a couple other doctors as well one of which was Dr. Luhmann I believe. They are going to check and see if there would be a doctor who is just as knowledgable as these doctors at the Lexington Shriners so I would not have to travel as far. Honestly I don't care to go out of state if he means she is going to get the best care.

Linda, I know Dr. Glassman, he did surgery on my sister and messed up terribly, Dr. Puno had to repair his work and he would not even come in an apologize to my sister so I'm not a fan but I appreciate you mentioning him.

Doreen, thank you for the prayers we definitely can use them!!

Gayle, (my sister's name is Gayle and spelled the same!!) Thank you for the information I will give her a call. I have the application for shriner's pulled up now and am getting ready to fill it out.

I have to tell you all that your responses have given my daughter and I more hope than I have had in a long time, I'm just so thankful!!

I will keep you all posted!

Kellie

[LindaRacine]

Wow, sorry to hear that.

[rohrer01]

How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

[LindaRacine]

How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

I think Sierra is too old for crankshafting to be a problem.

[titaniumed]

Hi Kellie

I hope you can get hooked up with the right surgeon. There are times you have to make that move, this is probably one of those times.

If she is still on meds, they can cause heartburn. One of the things I do is sip on water all day long. Water dilutes acids.

Try not to worry, there is always light at the end of the tunnel.
Ed

[Pooka1]

Hi Kellie,

Sierra is such a beautiful child. You will find someone to help her.

It appears from the radiographs on the video that they used mostly hooks and not screws, is that correct? How old was Sierra for the first fusion?

Good luck.

Sharon

[rohrer01]

I think Sierra is too old for crankshafting to be a problem.

Yeah, I know you are definitely more qualified to answer on this one. I just can't see how such a good looking surgery wouldn't hold. Some girls are late bloomers and mature later on. I would say most are done by 16 though. I was still growing at 16 or rather shrinking. I lost 3/4 of an inch between 15 and 16 years old. But, I had a MAJOR growth spurt between 13 and 15. I went from about 5'2" to 5'8". This girl looked about 12? I'm just guessing, that's why I asked. I sure hope someone can help her whatever the reason for her problem. My heart goes out to her and her family.

[LindaRacine]

Yeah, I know you are definitely more qualified to answer on this one. I just can't see how such a good looking surgery wouldn't hold. Some girls are late bloomers and mature later on. I would say most are done by 16 though. I was still growing at 16 or rather shrinking. I lost 3/4 of an inch between 15 and 16 years old. But, I had a MAJOR growth spurt between 13 and 15. I went from about 5'2" to 5'8". This girl looked about 12? I'm just guessing, that's why I asked. I sure hope someone can help her whatever the reason for her problem. My heart goes out to her and her family.

The X-ray in the video doesn't look all that great to me. The implants look like they had already started to re-rotate. The fact that one shoulder ended up way higher than the other after surgery should have been a huge red flag.

Regarding crankshafting, I haven't done much reading, but I think crankshafting was really only an issue with very young kids. I'm not sure how old Sierra is, but she looked older than 12 to me (although I'm a very bad judge of age).

[Elisa]

I've done a bit of research on crankshafting b/c I was concerned about my son being only 14 at the time of his fusion and boys really grow a lot at that age. Anything I've read said crankshafting occurs mainly with much younger children, those under the age of 10 for girls and 12 for boys. If the original poster comes back perhaps she will let us know how old her daughter actually is b/c it is so hard to tell from pics.

[Susie*Bee]

I remember Aussiemum's daughter, Ellysia(?) had a crankshafting problem, and she was 16. I'm not sure what happened, but I know she would be glad to respond with her information if you sent her a PM. She was always pretty helpful.

[Pooka1]

I remember Aussiemum's daughter, Ellysia(?) had a crankshafting problem, and she was 16. I'm not sure what happened, but I know she would be glad to respond with her information if you sent her a PM. She was always pretty helpful.

No Elysia was about 11 when she had the first surgery. She had all hooks, no screws. That situation might be ripe for crankshafting.