New with lots of questions

[MATJESNIC]

Hi Nikki,
I was wondering if your daughter's curve was noticeable at 88 degrees. When do you think it first started to curve? Why wasn't it picked up at 30 degrees, for example? I hope you don't mind my asking.
My Nikki 's curve was noticed at 10 and a half. Her ped. told me it was starting to curve and to bring her back in 6 months. I never brought her back for that. I didn't think it was a big deal. We were dealing with bronchitis and fevers and other typical illnesses that year. She was at the doctor's about 3 more times since then, and it slipped my mind for them to check her back. We go to a group, so there is little "checks and balances." By the time she went back a year later for her 11 and a half check up, she had a 37 degree curve. When the doctor showed me her spine, I could see the shoulder blade sticking out. And when she bent over, I could see one half higher than another.
Melissa

[nikyergen]

Melissa,
Crystal wasn't diagnosed until she was 15 and we got her into Shriners for an eval. All of her various doctors would ask if she had ever injured her back. We would say no, and they would say okay and never go any further. With that, we thought she just had lazy posture. This has been going on since she was 5-6 years old, so for a very long time I was believing our pediatrician. Finally, a friend, whose daughter was in a brace, asked us about it. She recommended a particular doctor and then told us about Shriners. The big kicker. My husband is a Shriner and I never even thought about them. When one of the hospital board members talked to me about it, I looked at him and said "My child isn't crippled." He then informed me that if things weren't taken care of she could have other debilitating problems. Hopefully, this made a long story short and you can understand that we had a lot of faith in our doctors. Crystal should of been in a brace at 5-6 years old.

At 88 degrees, yes her back was very noticable, but we were trusting all current doctors. When Crystal was in the hospital with a bout of pneumonia before she had surgery, her GP couldn't understand why she was having surgery. I asked to see Crystal's chest x-rays so I could show her the problem. When I showed her the problem, then she could see it and understand. How, do you think I felt educating the doctor. Pretty scarey. Crystal is very active and never let it slow her down. Like I said, we were told by the pediatrician and a chiropractor that she had terrible posture, and that correcting her posture would solve her problem. WRONG. Crystal even took it upon herself at every appointment to see if there was a brace or something that would help correct the problem. What did we get told, NO there wasn't a brace that could fix it. We were shocked to find out that all three of our daughters have scoliosis/kyphosis at our first appointment at Shriners. Our oldest had surgery, our middle was a wait and watch and has been recently released from any further treatment, and our youngest has about 6 more months in her brace. The best day of Crystal's life was to walk back into the Chiropractors office and tell them she didn't have lazy posture and that she had a problem that needed surgical intervention.

THe best part is that Crystal's asthma has gotten much better. She doesn't get colds as frequently, because now her lungs can expand in her chest.

We feel terrible about our daughter, but we were trusting the doctors at the time. Now, 10 months after surgery, Crystal is doing great and a very happy 17 year old. She's glad her back is straight and she feels much better about herself now.

Hopefully, other parents will question their childs doctor when they are told their child has lazy posture.

It wasn't that we didn't see our daughter's back, we were just trusting and listening to numerous doctors. Everyone of them told us she was just a lazy postured child.

Hope this helps. Ask more questions if you want. I'll share my experiences.

Nikki

[Sir Jeffrey]

Nikki,

I know exactly how you feel. I too think Jamie's Kyphoscoliosis started years before she was diagnosed. Now that I know so much about it, I look back at pictures of her and wonder why no one picked it--me or her doctor. I know why I didn't pick up on it. No one ever told me what Scoliosis or Kyphosis looked like. My husband would walk up behind Jamie and pull her shoulders back and tell her "shoulders back, chest out" and her reply was always "I can't." We thought she was being a typical kid and becoming lazy with her posture. When I look back at pictures of her from the side, her Kyphosis is so noticeable!! I always take my kids in for a yearly check-up and her doctor never noticed anything wrong with her back until the day he diagnosed her and he did the forward bending test every year. The day after he diagnosed her he asked me to come into his office without Jamie to discuss what needed to be done. He apologized to me because he said when he walked into the room the previous day and saw her sitting on the table, he almost yelled at her for her bad posture. He was glad he didn't, but at first glance that's what he thought was going on also.


I'm sure you felt the same way as I did for awhile--guilty, guilty, guilty--for not seeing what was wrong with Jamie's back. I didn't let myself dwell on that because no one ever told me what to look for and we needed to move on and get her treatment started.

I think what we are doing on this forum and outside of the forum is awesome. At least we are getting the word out there and trying to educate people. Jamie had to do a speech about herself the other day and she said most of the kids were totally shocked to find out she has Scoliosis (Jamie is a freshman and this class is mostly with sophomores and just started last week so they don't really know her yet). Jamie and I have found that many people don't even know what Scoliosis is or why they are asked to do the forward bending test. Shoot, Jamie told me that she always thought they were checking her flexibility! Oh, how things have changed!

Mary Lou

[nikyergen]

Mary Lou,
We too have gotten beyond the guilty feelings we had for so long. But, when you don't know what scoliosis/kyphosis looks like you don't see it. Now, I look at every person that walks by, young and old. If it's a child and I know their parents, I'll talk to them about it. I try to do what I can to make parents aware of these problems. I sure wish someone would of done it for me when Crystal was little. We may not of had to have surgery then.

Michelle had to do a CIM Speech before the holidays. She did hers on Scoliosis and Kyphosis. Her classmates knew nothing about it before hand, but did they have the questions afterwards. Now, they understand why Michelle has a brace and why Crystal had surgery. It was pretty neat. The best part was that Michelle was the only one that passed her CIM speech on the first try, there were even freshman, sophmores and juniors that didn't pass and had to come back and do them again. Michelle is only in the 8th grade. So, she was real pleased with herself.

I see you are still royalty. Did your other sign in blow up? Several people have had a few problems lately.

The one thing I would like every parent to know DON'T FEEL GUILTY ABOUT YOUR CHILDS SCOLIOSIS OR KYPHOSIS. Our is genetic and it came from my side of the family, as I have it and my nephew has it too. But, we don't feel guilty about it any more. We've put the guilt behind us and gone on with our lives. We try to help out on the forums and outside the forums.

Nikki

[lnetzer]

Good tip!

Mary Lou:

I never even thought about the fire drill thing, that is good to know! I'm hoping they will let Josh leave before the end of classes a few minutes sooner, too. He goes to a very small Catholic school, and his class only has 8 students in it. I haven't called the school yet as our doctor called us yesterday and said she was having a packet of papers sent to us with additional info we would need, including the blood donation info, so I figured I'd wait until we get that. The teachers are all aware of what is going on, but I will need to get a plan worked out. I don't know if there is a homebound program even, since it's a parochial school. So many details to iron out, I have a running list so I don't forget anything!

Laurie

[lnetzer]

Risk of rejection?

Nikki:

Is there a risk of rejection since it is donor bone? I hope that doesn't sound stupid, but my mother asked me that and I figured I would ask and see if your doctor had mentioned that? We didn't touch any on it besides to say that was the way she did it.

I appreciate all of the feedback on school and everything, as I haven't a clue what to expect and when I sit down with the administrator of the school I want to have all my ducks in a row

Laurie

[nikyergen]

Laurie,
There is some risk of rejection of donor bone, but very minimal. The problem would be that the fusion wouldn't take and they would have to go back in and use the childs own bone. However, the rejection like this is very very minimal. Crystal's fusion healed just fine without any problems. There are no anti-rejection drugs or anything that they take for this. It either takes or it doesn't. We felt the risk was minimal, and that Crystal's recovery would be quicker without having to have a second surgical site for the bone harvest. From what I have read on the forums, the kids have more trouble with the bone harvest sites than they do the actual surgery. By trouble, I mean pain and inflamation.

You are on the right track with your school. Give them the heads up and help them prepare for your sons return to school. Don't be afraid to put your foot down with them on matters, if they disagree with you. I had a meeting with all of the teachers, principal, and superintendent a couple of days before Crystal went back to school. We discussed what she was allowed to do and what she wasn't allowed to do. You will find they will be your best friend. Crystal's History Teacher caught her shooting hoops in the gym when no one was around, or so she thought. He escorted her out of the gym and reminded her why she shouldn't be doing those things. Now, can you imagine having to do this with an almost 17 year old. So, it doesn't matter what age they are, they are going to try to push the issues and you need the teachers on your side. The teacher don't have to baby sit, but they will intervene if they need to.

Homebound may not be available since you are a private school. However, they have to abide by the law and be sure that he doesn't miss any of his education. It may mean you having to figure out how to help out, but that is all doable.

Keep asking the questions and we will all try to help you out.

Nikki

[Sir Jeffrey]

Nikki,

I don't know what's going on with my old username. My name doesn't show up on the members list, but yet when I try to re-register, it tells me that name is already in use. I tried to create a new name twice but never receive e-mail notification that my account has been activated. Also, I can go on one of those names, but I can't do anything---no responding to posts, no starting new threads, etc. Maybe I was just meant to be royalty?!

Mary Lou

[momof5]

Update on Graham

Hi Everyone!

I finally have a minute (maybe) to sit down and let you know how our appt. at Shriner's went on Wednesday.

First, we found out that the dr he saw before is no longer there. So, we have to see a new dr. But, that hadn't been figured out by the time we went for our appt. So, we just saw the assistant, who we saw before ( I really like her). She answered most of our questions and told us who our new dr would be. We set up an appt with the new dr for March 9th. That will give him time to review all the x-rays, MRI, etc.

The assistant did look over the MRI report and said that there was nothing at all that we should be concerned about. She said that noting the spondolilysis (sp?) was just something they do. It was not what that were concerned about. They were only concerned about anything cervical that might be affecting his muscle imbalance. She said it looks like the imbalance is simply from his curve. So, this is all good news.

Graham said he would like to wait until Sept. to have the surgery and she said that it shouldn't be a problem to wait that long. He wants to go to camp in August and since we homeschool it won't interfere with his schooling.

My husband was able to go with us and ask his questions and learn a lot more about what's going on. This was a really good thing for him. So, all in all, it was a good visit and it looks like we will do surgery in Sept.

On a side note, the assistant told us they had a patient right now with 140* curve!!! Wow!!! Makes me feel fortunate. She said they have had patients with scoliosis so bad they were unable to walk and how rewarding it is to see them walk again! This also gives me a lot of confidence in the drs ability.

So, everything looks good. Thanks again for all the support.

Katy

[Snoopy]

Katy,

I'm glad your appointment went well and that your husband was able to go along. I think they need that sometimes to make it "real" for them.

Keep us posted.

Mary Lou

[lnetzer]

Katy:

That's great news about Graham! Even better that he can wait until September to have surgery. I wish they would let us wait until June when school is out, but our school is going to work with us to keep Josh caught up on his homework so I guess I shouldn't worry about it too much.

I spent almost 4 hours on the phone going back and forth between making appointments, checking insurance coverage, etc. We are all set now, it's just a matter of getting the blood donation done next month and then the 2 pre-op appts.

Does anyone that has had the surgery heard anything about physical therapy afterwards? Our doctor said there isn't any, but how do they keep up on their healing/walking, etc? Just curious!

Laurie

[Snoopy]

Laurie,

Jamie had physical therapy starting at about 3 months post-op. I chose a place that offered water therapy as well as regular physical therapy. For the first 2 weeks or so, she did only about 1/2 hour of water therapy and after that she did 1/2 hour of water therapy first and then another 1/2 hour of regular therapy.

As for keeping up with walking, Jamie walked only in the house since it was December and too cold/icy for her to walk outside. Some kids go to the mall and walk for exercise, but Jamie didn't want to. When she returned to school, she was tired for the first week or so, but did just fine and by going half days, I think that helped her build up her strength.

Mary Lou

[nikyergen]

Laurie,
Crystal didn't have any physical therapy. She just increased her exercise, within the doctors limitations, as she gained energy. But, she did have a brace after surgery, where she had never had one before surgery. The brace was to just protect her from bending, twisting, etc. I think physical therapy and bracing after surgery depends on what each doctor uses for a protocol.

Jaimie and Crystal had the same type of surgery, for kyphosis, and the same number of vertabra fused. I think the only difference was where they started and ended the fusion. Crystals goes from T2-L2. And both girls were anything but couch potatoes. Both were very active in their everyday life. So, I am thinking physical therapy is a personal doctor preference.

Hope this helps. I hope it doesn't confuse you more.
Nikki

[LeaEvelyn]

Hi All,
I have a fourteen year old son with scoliosis. We started out with bracing when he was eleven. The brace slowed down the progression, but didn't stop it. He is our only child and we were very cautious, and extremely anxious with the whole thing. Before he had surgery, he had an MRI, which took about 2 1/2 hours and donated 2 units of his own blood. He also had donor bone mixed with his own, that they chipped off his spine during surgery. He had absolutely no problems with either. He did end up with a very rare complication afterwards though. His doctor used bending x-rays to show him which vertabras to fuse. {This shows while in the bending position, how far the spine will straighten on its own} By the time he reached eight week post op, he had developed an add on phenonmon at the bottom of his fussion. Talk about anxious mom, I about passed out from the stress. They sent us for a cat scan this time. Thankfully it came back just fine. He was also checked for Marfans syndrome, and again, all was fine. It is still unknown why this happened to him. He had to have a second surgery, to extend the fussion down two more vertebras. Again, he did just fine with this surgery too. He wasn't layed up too long. As a matter of fact, he was able to play basketball for his eight grade team after seven months post op. I just wanted to share with yous the pros and cons of surgery. Looking back, I wouldn't change anything. He needed surgery to stop his very agressive progression of the curve. He looks so much better now without scoliosis deforming his posture. I just wish he didn't have to go through it twice, which remember, is extremely rare. He wrote a story about his experience with all of this and it can be found at www.spinekids.com/shane.shtml.

[lnetzer]

Thank you!

LeaEvelyn:

Thank you for sharing your son's story! I have such anticipation about the surgery, even more than my own 13 year old son does. He is our only child and I am so afraid of the unknowns. He has to donate 3 units of blood next month for his surgery on April 10. Our doctor also does the donor bone. Is it realistic that they are up walking within 24 hours? What about being released from the hospital? They are telling us surgery on Monday morning and release by Saturday afternoon?

I will have my son check out your son's story, too. He's finally to the point where he wants to know a little more about it than what the doctor has discussed with him.

Laurie