Help! My 17 yr old son needs surgery

[LorDon]

Hi All,

I'm new here and I'm scared to death about my son needing surgery. His curves are 46 and 54 and we just saw Dr. John Flynn at Childrens Hospital of Pennsylvania last week. I've been reading so much on this forum and it's made me feel so much better seeing all of the positive experiences that so many of you have had. Melissa, I've read a lot of your posts because you just had the experience at CHOP and I would be so grateful if you could give me any tips about the hospital, staff etc. I'm praying that your daughter's recovery is quick. It's so hard to see your child in pain. It sounds like the worst is behind you and that must be a tremendous relief. Has anyone else seen Dr. Flynn or had surgery at CHOP? Any input you could give me would be appreciated!

Thanks,
Lori

[rtremb]

Just curious - why does your son need surgery with his curve measurements? I thought it was only necessary to do surgery if the curves are over 60 degrees or more. At 17 his growing should be completed. Is the doctor thinking the curves will continue to progress as he grows older?

[Snoopy]

Ruth,

Some doctors do surgery at 40* and others at 50* or higher. My daughter's curve was 46* when she had her surgery. At 17, a boy could still have a lot of growing to do, whereas most girls are done or almost done growing at 17. Boys tend to start their growth spurt at a later age, therefore, they also tend to stop growing at a later age than girls.

Mary Lou

[The Slice]

I'll add just a little to that. I knew a young man who was 6' 4" when he finished HS, within the next year or two, he grew to his final height of 6' 7".

[LorDon]

The doctor told us that once the curve is over 50, it's in the surgery range. His curve progressed 17 degrees in 17 months and the doctor thinks that it will only continue to get worse.

[vndy]

I wish...

Lori,

I am now 22, and a graduate student. My surgery has just been scheduled. I WISH I had taken care of this years ago, when the problem surfaced. While my family is certainly supportive and will care for me, I wish it could have been resolved before I became an "independent adult." He'll appreciate it later...

Just my two cents!

V

[rtremb]

That is very interesting. Thanks for the information. Our son is 17 years old with curves around 40 degrees. Our orthopaedic doctor said he won't need surgery now since he has stopped growing. We are going to be taking him to a new orthopaedic doctor within the next month or so for a second opinion - I hope we won't be getting a different prognosis since our son is sooooo relieved, after years of "watching and waiting", he hasn't needed sugery so far. He has NF too although we have been told the scoliosis is idiopathic and not caused by the NF.

[MATJESNIC]

Lori,

I hear excellent things about Dr. Flynn at CHOP. We had excellent care there. Let me know if you want to talk on the phone or e-mail.

[LorDon]

Ruth,

Just wondering how your doctor knows that your son has stopped growing? Did they do an xray to check his growth plates? Also, what is NF?

Lori

[rtremb]

Lori:
Having read some of the posts on this forum I now know the doctor did not do a proper check of his x-rays to make sure he had stopped growing. We won't be seeing this doctor again - we have a new orthopaedic doctor now for our children. Hoping there won't be any bad news for our son when we see him......

[scoliboymom]

My understanding is that if growing has stopped and the curves are below 45-50* then there is a chance the curves will not progress into adulthood. If at the end of adolescent growth the curves are above 45-50* there is a really good chance the curves will continue to progress in adulthood, although at a slower rate. In most cases the surgery is done to stop the progression of curves. So if at 40* the curves are not getting any worse then surgery may not be necessary.
Ramona

[rtremb]

Ramona: Thanks for your post - my son's curves are around 40. The lumbar curve went down by two degrees on his last x-rays - six month check-up. His back used to look a lot worse than it does now - it has straightened out considerably over the last year as he has grown taller.

[rosem]

Just had surgery with Dr. Flynn on Oct 1st

Lori,

My son just had T1-L3 spinal fusion by Dr. Flynn On Monday October 1st. I can't tell you how scared I was. My son has congenital scoliosis and could not get an MRI because he has a Cochlear Implant so I was especially nervous. Dr. Flynn did an amazing job and the surgery went better than expected. We are from Ohio and had seen several doctors including one at UCLA before deciding on Dr. Flynn. We picked CHOP not only because Dr. Flynn was here but also because of the hospitals excellent reputation and access to superb care in all disciplines should any complications arise. My son has Goldenhar's syndrome and one of the problems is that the nerves are not always where they should be. We have been to many other excellent hospitals including UCLA and Cincinnatti Children's and my opinion is that the hospital far exceeds them all with their excellent, knowledgeable doctors and nurses.

We are dealing with the pain which is not as bad as I thought it would be. They are also excellent with pain management. We are 3 days post-op and his pain is a 3 out of 10. I thought it would be alot worse but we are managing it right now.

I don't know what to say to you except that I was CRAZY with worry prior to this surgery especially because we could not have an MRI. I did not know how I would handle myself the day of surgery but AMAZINGLY enough I was very calm and at peace while he was in surgery(it was close to 9 hours, Dr. Flynn worked on him for 7.5 hrs with an 1.5 hr prep time). They have a nurse who comes out and gives you updates every hour. It was all good and still is (Try to get him in ICU post-op, its top of the line care with large private rooms and the nurse right outside the door).

Good luck to you and I hope this helped alleviate some of your worry.

Rose, son of 15 yr with spine anolamolies. Spinal Fusion T1-L3

[Sherie]

Hi Rose

I just wanted to tell you I'm happy everything turned out well for your son, if you could make it through that knowing he had these other issues, I think I'll be fine too. I'm pretty nervous now about my daughter's upcoming surgery, but knowing all of you have done so well gives me lots of encouragement.

Best of luck to your son for a successful recovery.

[LorDon]

Hi Rose,
I am so glad to hear that your son's surgery went well and that he isn't in too much pain. It's so hard to see your child in pain. Best of luck with the rest of his recovery. It must feel so good to finally be on the other side of the surgery.

I am very anxious and stressed about Chris' surgery. We still don't have a date and that is making me absolutely crazy. I've already contacted Joanne (is that who you dealt with?) once and she apologized for not getting back to me sooner, but she said that she still needs to go over the surgery schedule with Flynn and he has been very busy. Understandable, but I just want to have a date. Do you remember how long it took you to finally get a date? This surgery is beginning to take over my life. It is the first thing I think about when I open my eyes in the morning and the last thing I think about before I close my eyes at night. Please tell me how you were so calm and at peace during your son's surgery. I think I will fall apart. I know that I need to be strong for Chris and put on a brave face, but I don't know if I can do that.

Your post was very encouraging though and it's so nice to be able to talk to somebody who has had surgery with Dr. Flynn. I've heard nothing but good things about him and I personally felt very comfortable with him. Is your son still in ICU? I was under the impression that they automatically went to ICU after surgery. Is that not always the case?

Please continue to update us on your son's recovery. I'll be hanging on every word in your post.

Thanks,
Lori