Jamie's six months check-up

[Mary Lou]

Some good news and some not so good news today. First for the good news: she is allowed to start running and jumping; she can take regular gym class starting in the fall; she can change classes with everyone else; carry her own books in the fall; can increase the amount of weight she carries (was limited to 5-10 lbs). She was happy about all of this but a little disappointed, even though we expected this, because he said no to all of the following until the 1 year mark: no riding our 4 wheeler; no hunting (which only starts about two weeks before her 1 yr mark); no amusement parks; no rollercoasters (he repeated this twice); no diving in the pool. All in all, it was what we expected to hear.

Now the bad news: he discovered that she has some Kyphosis (about 26*-from the C6-T2 area) starting above the fused area. He told us this sometimes happens after surgery and we knew this going into the surgery. He also told us before surgery he doesn't like to fuse the cervical area unless absolutely necessary. We will keep a close eye on it and pray that he doesn't need to fuse further. When he started examing her back he got a funny look on his face. He looked for a long time and then compared her x-rays from the past and today's x-rays to make sure there wasn't a problem. He noticed a "bulge" toward the top of her scar. He told us he thought it was her rods, but wanted to make sure it wasn't a problem like a broken hook, etc. He showed us on the x-rays that it was just the end of the rods. Made me worry for a few minutes.

Well it is starting to thunder here so I better get off the computer. All in all, Jamie was happy with what restrictions were lifted. It's funny though, when we left the office it was pouring down rain and she didn't even run to the van even though she is now allowed to run! Kids!

Mary Lou

[jc3]

hi marylou
i am going to definitely keep my fingers crossed for you. Now i am nervous for when we go. My doctor never mentioned that they could get kyphosis after the surgery. Hopefully it will not get any worse. What degree is normal and what is not for kyphosis?? You see we will never stop worrying. That is funny that she is allowed to run now and she didn't. She is so used to not being able to.
I know it is hard to wait for all these restrictions to be lifted. They feel like they can do these things and they are not allowed. Nicole is not allowed to jump or dive into the pool either. will talk to you soon.
Jennifer

[Joe's Mom]

My son has Scheurmann's Kyphosis and Scoliosis. His scoliosis now measures at 45 degrees. His kyphosis measures at 31 degrees. That was described to us as mild-moderate kyphotic curve. Some kyphosis (curve) is normal but I would imagine that when it is in the upper 20's to 30's it is significant.

If he eventually needs surgery, hopefully it will address both simultaneously?

[Mary Lou]

Jenn,

I'm not sure what is normal Kyphosis, so I'll have to check into it and see what I can find out. I'm not sure how many people actually develop Kyphosis as a result of surgery. Remember, Jamie already has Kyphosis, so I'm not sure how common it is. Maybe Linda will get in on this and help us out. Linda?

Joe's Mom,

Jamie's had surgery six months ago to correct both her Scoliosis (46*) and her Kyphosis (72*). This Kyphosis is new and above the fusion and we were told this was possible. If I remember correctly, it comes from the stress of the fusion.

Mary Lou

[jc3]

hi marylou
you said that her kyphosis (sp) is now at 26 and before the surgery it was 72. Do you know what it was at her first x-ray after her surgery
jen

[Mary Lou]

Hi Jenn,

Let me try to explain this a little better. Jamie had a Kyphosis of about 72* in the area of T3-T11 before surgery and it corrected to about 33*. The Kyphosis that was discoverd yesterday is about 26* and it is from about C6-T2, just above her fusion. This Kyphosis wasn't on any x-rays (or at least it was never mentioned before) after surgery until yesterday. She is fused from T3-L2. Does this help clear it up a little? I know it is all very confusing sometimes to me, let alone to someone else.

Mary Lou

[jc3]

marylou
thanks, i understand it now better. Hopefully it will just stay at what it is now and not get any worse.
jen

[nicoles mom]

Marylou
Well Its Great She Is Able To Do Some Things Now. Nicole Is Going To Drive Us Crazy She Not Able To Do Much Of Anything.but Keeps Trying And Then Hurts Herself.hopefully The New Kyphosis The Doc Sees On The Xray Doesn't Get Any Worse. Could They Brace Her To Stop It From Happening Until The Fusion Takes Place. Nicoles Doctor Said She Had 47 Kyphosis And I Honestly Don't Know Were It Was On The Spine And If It Got Better. He Had To Tell Me But I Think My Brain Is A Little Fuzzy Later.
Theresa

[Mary Lou]

Theresa,

I don't know if they could brace Jamie or not--it is very high up on her back. From what the doctor said, it is from the stress, (I'm not sure) of the fusion. We were told that sometimes the disc above or below the fusion sometimes gives people problems because of the extra stress so I'm assuming that is the same with the Kyphosis. Anyway, even if they suggested a brace, I probably wouldn't put her in a brace again. I'm guessing again, but since it is so high up, she would need a Milwaukee brace and she had one and wouldn't wear it. Neither of us could face that fight again. Thank you all for your thoughts/suggestions. I'm open to most anything. Even if we don't come up with anything, the support of others is always appreciated.

I know exactly what you mean about Nicole driving you crazy! Jamie has been driving me crazy for the past six months! In some ways I'm glad when they drive us crazy, because it means they feel better, but it doesn't make it any easier on us when we have to say no. Hang in there.

Mary Lou

[Carmell]

Hi Mary Lou,

Glad to hear Jamie is doing well! Sounds like her doc is being good and conservative on the restrictions, just to make sure. Did the doc say if the fusion is looking good/getting solid? I would imagine it is.

I have heard that sometimes some patients develop a kyphotic curve just above the fused area. Don't know why. This hasn't been an issue for Braydon. However, his ortho did keep a close eye on the scoliosis for several years after his fusion. He always commented that no kyphosis was developing. For a long time I wondered why he would say that. Now I know it's because it's a possibility after fusion in certain patients. Good luck with that. Hopefully as Jamie continues to be strong and healthy and physically active, the kyphosis will re-correct itself.

Keep up the great work!

[Mary Lou]

Carmell,

Thanks for you support. No, her doctor didn't say anything specific about how solid the fusion is. I always get a report from his office, so I'm sure he will mention it there. Like you said, I would imagine it is coming along or he wouldn't have lifted her restrictions.

What would we all do without this forum? We are constantly learning from one another. Now you know why Braydon's doctor checked for Kyphosis.

Mary Lou