update on my check up about what happened with my results of cat scan ! good or bad?

[Syd]

Hi again,
Im Syd you probaly know that already but today I went for a check up on my results of my cat scans and my idea before the cat scan would be terrible news but surprisingly It shocked me because it was the best news I've have heard in 2 months ! Well it started off with a hello of coarse but than he sat down and said how did my plumenary testing go and I said that he tested me and said that I had a 41% breathing compasity out of 80% and that he said was half normal and than after that He knew already that I had a restrictive lung disease so.. he didnt say anything to remind me of that. After that he told me that I would hav to get new x-rays of my back because he wanted to see if I had any movemaent in my curviture at all and If i did in my neck to. After the x-rays he sat down and told me I barely had movement in my curve and that kinda upset me but than he told me he could fix it except my neck because he would have to take a whole chunk out of my neck and hes afraid that it would parelize me so... that was upseting to that he couldnt fix my neck but the good news is that he can fuse my back to 50 or less and thats great news ! Also what really scared me was the surgery part I didnt enjoy that part at all !! PLease if you had any experience or ideas on the surgery (fusing my back) please give me help on it and tell me how it felt and how long did it take to heal and if it straightend the spine???PLEASE REPLY ADDVICE

Thank you,
Syd

[MitoMom]

Restrictive AirWay

Hi Syd,

I'm glad you got some good news at your appointment.

Your restrictive airway is caused partly by scoliosis.

Pretend that a piece of string is your spine. Your lungs are located on both sides of the string. Take a piece of tape and put it on the string in the middle of the tape so it looks like a T. Take another piece of tape and put it on the sticky side of the first piece of tape so no sticky sides are out.

Now make your string straight. What do you see? The string (your spine) is straight and there is equal amount of space on either side of the string for the tape (your lungs). There's a lot of room for both sides of the lungs to get bigger when you breathe.

Now take your string and bend it to one side. What do you see? The length of the string didn't change did it? But the space for the tape, on one side of the string was less than the space on the other side. Just like this (. That's how your scoliosis is restricting your lungs.

I hope this helps you understand how the scoliosis affects your breathing. I know it's all hard for you to understand but if you stick with it, I'm sure you're going to become an expert and help other kids just like you.

[Syd]

Okay thank you lots ! I understand completely ! And ya I hope to help others the way you are helping me soon I am going for a sleeping test to see if I sleep apnia and I dont know what that even is and how they do that test Hey and I hope everything is going to be alrite for john like it is going to be alrite for me ! Im am very sorry to hear about john to I hope he will have a smooth going surgery with no problems and I hope he will be healthy after the surgery! I hope for the best !!!!

Thanks again!,
Syd

[MitoMom]

Hi Syd,

John's favorite football team is the Baltimore Ravens. Tonight there is college basketball on TV so he's excited to watch that.

Sleep Apnea is what happens when your brain sometimes forgets to tell your lungs to breathe when you are sleeping. Your brain suddenly remembers and you take a big breath. Sometimes it interrupts your really deep sleep but not enough so you know it like you would if you were awake.

The test isn't hard because the main thing you have to do is: SLEEP! How cool is that!! . They will probably have one of those pulse oxymeter things on your finger. You've probably had that for other tests. If you haven't had those before it looks like a small bandaid with velcro on it or it can look like clothes pin. It doesn't hurt, they just wrap it around your finger. We call it the ET thing because it reminds us of ET's finger in the movie.

They will probably put some EKG leads on your chest to see what your heart is doing while you sleep. If you haven't had those, they look like little patches that have sticky stuff like a bandaid does. They stick to your chest and when the test is over you peel them off and put them in the trash. They don't hurt either.

You might even have some EEG leads pasted to your head so they can tell what your brain is doing while you sleep but not everyone gets that step done. EEG leads look kind of like EKG leads only much smaller. They get glued to your head with a glue that washes off when you wash your hair. It doesn't hurt at all.

Both the EKG and the EEG leads are connected to wires that connect to a machine that reads the activity of your heart and brain. The dr or assistant can't do anything to your heart and brain through those leads.

You are asking really good questions Syd. I hope you are asking your Mom and Dad these questions too.

Have a good weekend.

[Syd]

Thank you haha ya im asking my mom and dad like a million questions but they dont really know how they are going to do the sleep apnia test hah they are researching and asking the docter everthing we need to know though but the things we dont know I usally ask it on here for advice And thank you for taking your time out of the day to help me with advice ! And also I hope every thing is going good with john!! What surgery is he getting? And I hope it will go well for him like it going for me I hope for the best and best wishes!!!

[MitoMom]

Hi Syd,

I'm glad you are asking your parents these tough questions.

John is 20. He is in special education for kids after high school. He likes it a lot.

John's surgery is being planned for the middle of June this year when he is out of school.

He will have his kyphosis (hump) and scoliosis (curve) fixed at the same time. It will be a BIG operation because they have to fix the hump so he can breathe better. His airway function is 67% out of 100%. Part of that is because his muscles don't work right. You use muscle in your back and chest every time you breathe in and out. Part of it is because his hump makes his one lung not inflate completely. Does that sound like any one you know?

Then because they are fixing the hump and going down his back so far, the dr will fix his curve too. The dr thinks the lower curve will get worse if he fixes only the hump and not the curve because John's muscles are slowly wearing out. Sometimes when John's muscles are really tired, he uses a wheelchair when we go to the store or the mall or on big trips.

Anyway, John's surgery is not for 5 months so we try not to think about it too much.

Take Care,

[Syd]

Im am so happy he can get fixed ( tears of happieness!) But that is a huge operation but I believen in him to have faith before that surgery that he will be a sucess !!! And I will be praying for him and your family. After the surgery if you can tell me how it went if you can ? I would love to hear how he is and your family about the surgery to see how he is doing keep in touch best wishes syd !


Sincerly ,
Syd

[JenniferG]

Hi Syd. Glad to hear you are making progress and getting some answers to your questions. It's so important to know exactly what's going to happen even if it's not always good news. For most of us, just knowing and not wondering, is important.

So keep asking questions. There are some knowledgeable and helpful people here. Did you try the Spinekids forum?

[Syd]

Hey,
ya I have tried that but I like this forum much better becuase there is more caring addvice here than that forum! It was nice to hear from you and thank you for the addice so far and also soon Im getting a sleeping test and im kinda scared if I hear that I have sleep apnia or not thats why and The bad part of the appointment was that the docter cant fix my klipple fiel syndrome but I still have hope! thank you for all the addvise!! hey jennifer how bad is your scoliosis and how are you doing and feeling??

[Sherie]

Hi Syd

I'm glad you're happy about your appt. If you look closely at the before and after xrays of my daughter, you can see how her right rib cage squeezed her lungs before surgery and then after, both sides are very even. It has helped her breathing a bit.

It takes about 6 mths to 1 year to be completely fused, but kids tend to heal faster. At 1 year post op, you should be released to do just about anything with a few exceptions, like bunji jumping maybe. Most kids will feel pretty good by about 2 months though, some even sooner.

When is your surgery date?

[Syd]

Hey nice to hear from you agin haha My surgery is march 24 and im kinda scared and ecxcited thank you for showing me the pictures ! I have a question what degree curve did your daughter have because they did a very wonderful amazing job (sucess) on her it amazed me!

[Sherie]

They really did an amazing job, we're really happy with the results.

Her upper curve was 56 and the lower one was 62. She had a lot of rotation in her bottom curve though and it caused her a lot of discomfort. She couldn't stand on her feet for more than an hour before, now she's fine. She gets occasional shoulder pains when she does too much but that's probably because she's not very active.

Of course you're scared, we all were, patients and parents alike but you're going to do fine. When you have the surgery so young, your body heals much faster. You will have this past you in no time at all.

[Syd]

Ya thats true I will heal much faster than adults so thats one great thing! But im happy that your daughter got fixed (cheering yah) hahah I hope I have good results like your daughter had but my curve is a little worse though mine is a 89 degree curve. when I was younger I was soppost to be in a wheel chair But luckly im not and Im active and running but I hurt big time after words my parents make me stay out of anything I can get hurt in haha but I have things wrong with my neck also that why I have klipple fiel syndrome they cant fix that but they can deffentely fix my curve done to 50 or less ( tears of happieness!) hey does your daughter do any sports or is she still recovering or does that hurt her back?

[JenniferG]

#9 The sleeping test won't be anything to worry about, Syd. It may involve sleeping one night with some equipment attached which will produce a readout to show whether you're forgetting to breathe while you sleep. Don't worry, they are not taking any chances with you, in fact they seem to be looking after you very thoroughly.

In answer to your question, my scoliosis has been surgically corrected to 22 degrees (was 68 at time of surgery). It was a posterior surgery, and I now have no pain whatsoever. Although my spine isn't 100% straight, it's hard to tell unless you know what you're looking for and the rib hump I had is gone. I'm very happy with the result. I am sure you will too.

I see you were wondering what fusion means. Well, when they straighten your spine, they hold it in place with metal rods and sometimes they need to remove some of your bone to do this. This bone is crushed and sometimes mixed with something called BMP which helps promote fusion and is placed back onto your straightened spine. In time, this crushed bone fuses together onto your spine and becomes even stronger than the metal rod. You know how, when you break a bone, it grows back? Well fusion is the same process, the bone actually grows back solid. When this has taken place, which can be a year or more, your spine will stay in place even if they removed the rods, (which they don't normally do, unless there's a good reason.) The rods are only put there to hold the spine straight until the fusion process takes place.

I hope this helps you understand the process a bit better.

[JenniferG]

Oh and, you are very young. Even if they can't help you with your Klippel–Feil syndrome now, perhaps in time they may. Surgical techniques are improving all the time. Even the scoliosis surgery has improved immensely from just 20 years ago and is quite a different surgery these days.