New with lots of questions

[momof5]

Laurie,

Just wanted to encourage you to hang in there. I guess it's a good thing to find any problems now before surgery. I imagine it is pretty nerve-wracking though!!

Please keep us posted on what you find out.

Katy

[flowerpower]

Laurie,

I sure know what you mean - I'm the one who ended up doing all the research, phone calls, etc., I guess just because I quit my secretary job to stay home with kids doesn't mean I stopped being one!

I would be frustrated too at the surgery date being put off. When you're this close you just want it to be over with. But to look at it positively, think of this as extra time to get Josh in even healthier shape than he is now. Eat a healthy diet, do exercises & activities that will help (gently) build up lung strength. This may be hard because of the asthma & I don't know if his activities are restricted while his heart is being monitored, but even just walking would be good to build up endurance & stamina. Hope everything goes ok & no more setbacks - keep us posted! Take care -

Renee

[LeaEvelyn]

Thanks for the reply Laurie. I hope everything works out ok. Good Luck with your new surgery date. I would assume you were relieved to have it bumped back. It is better to make sure everything else is ok first. Take Care, and keep us posted, ok.
LeaEvelyn

[momof5]

Exercise

Laurie,

extra time to get Josh in even healthier shape than he is now. Eat a healthy diet, do exercises & activities that will help (gently) build up lung strength.
Renee

Renee & others,

I'm curious what you all did (or your kids did) for exercise before surgery. We still don't have a date, but are still shooting for September (if the Dr. agrees next week). Graham does Karate 2 days a week (3 classes, black belt level) and we just added 2 swimming classes so he now has 3 swimming classes a week. He also still does stretching exercises that the Physical Therapist taught him. Both Karate and swimming will drop to 2 classes a week in May, but we may try to add some others or swimming in the lake once it's warm enough. Did anyone have specific recommendations from a Dr. of PT that might go beyond this? I know that it is important to have muscle strength plus lung capacity, which is why we chose swimming.

Anyway, I was just curious. Since we have so much time we want to make the most of it. I told Graham to just imagine that he is training for the Olympics

Katy

[flowerpower]

Hi Katy,

I think everything you and your son are doing is great. Swimming is good as it exercises all the muscles as well as strenghtens the lungs. The stretching is really good also. Walking, PT or anything to strengthen the leg (and arm) muscles is good also. Maybe someone else can chime with an opinion on this, but I don't know that the back muscles should be something to focus on strengthening right now, as that would toughen or thicken muscles that will be cut during surgery. With the exception of PT, we did pretty much everything you did though it was hard to get Joe to exercise and stretch with me. I made sure he took a multivitamin daily months before his surgery & I think this helped with his iron levels. I also made sure he ate a really healthy diet (almost) every day, especially lots of health drinks and homemade smoothies in the weeks prior to his surgery.

You are doing the right thing making the most out of the time leading up to surgery. I appreciate the way you compare this to training for the olympics, it sure can feel that way!

Hope this was helpful. Best wishes to you both. Please keep us posted & take care -

Renee

[momof5]

Thanks Renee,

My husband is kind of a fitness fanatic, so he is pushing hard for Graham to do as much as he can. The hardest part is having the time! A multi vitamin is a good idea. I think I will start that soon. We generally eat pretty healthy already, so I think we are okay there.

Thanks again for your input!

Katy

[lnetzer]

Thanks!

Katy, Renee, and LeaEvelyn:

Hi! I really appreciate your comments and support!

It was pretty disheartening to have the surgery date put back so far, especially when we were so close to it, but of course I'd rather know exactly what is going on. So far we've called in 10 heart events, but they want MORE so whenever he has them he will record them. I'm praying it's just stress and nothing really serious. Someone did mention to me something about Acid Reflux, so I am going to find out about that. It doesn't happen after he eats though, so I'm wondering if anyone knows anything about this? We never know when it'll happen, he can be sitting at school or even laying on his bed watching TV and his heart will start racing.

When I asked our surgeon back in January about PT she said there was none. I don't know how that can be, but we are going to join the YMCA and get Josh into swimming as that really is a great idea for strengthening his lung capacity.

Josh has been taking a multi vitamin for over a month now, plus 2 iron pills a day as we were supposed to be donating blood this month. He's going to continue to take them as the doctor said that was a good idea.

Laurie

[LeaEvelyn]

Hi Everyone,
I'm so impressed by everyones concerns for their children being in the best of shape for surgery. And every one of you are right. My son had scoliosis surgery about a year ago. We had him run cross country for exercise. His dad is also a distance runner, so he found it quite natural to be running. This helped him have excelent lung strength. Accually, during his recovery in the hospital, he was told many times, and by many different people who were taking care of him there, that he was one of their best scoliosis patients they had seen come through in a long time. I know it is because he was in such good shape going into surgey. So keep that in mind while you are preparing your children for surgery. Yes, exercise would be a great part of the preparation. Good luck to everyone preparing their child for surgery. I know what a diffucult time it can be in your life. I'll be praying for all of you's.
LeaEvelyn

[momof5]

Laurie,

I don't think surgeons are likely to stress PT or exercise. My husband and I discussed this. Partly because they are medical doctors and are used to correcting problems rather than preventing them. Also, I think because they often deal with patients who are in so much worse shape, from birth defects, disease, etc. that they are unable to do exercise. Our Dr. has a patient right now with a 110* curve! The Drs assistant did tell us that Graham would have it easier because he is in such good shape. I also have a friend who had a fusion in 1979. She is a swimmer. Her parents even put in a pool for her and she teaches Graham's homeschool swimming class. She has been a big encouragement to us. She highly recommended swimming and told us how important it is to improve his lungs so that he is able to keep them clear after surgery. So even though Graham is already very physically strong, his aerobic capacity is lacking. He hates running even though his dad and I both run (not distance, though, mostly trail running). So, we gave him the option of swimming which also offers no impact.

Anyway, I guess I am rambling, but this is an important subject to us. I think most of us could use more exercise than we get anyway (I know I could). My friend also told us that he will lose a lot of muscle strength with the surgery, so the more he has going in, the better.

Okay, thanks for all the responses. I'm glad to hear others views on this.

Laurie - keep us posted on Josh's heart.
Katy

[momof5]

An Interesting Turn

Hi Everyone!
I'm back with even more questions. We took Graham to Shriner's again yesterday and met with a different doctor. The original doctor is no longer there.

Anyway, this Dr. basically said that for Graham to have surgery now it would be mostly for cosmetic reasons. He said that because most cases are girls they choose to have the surgery at this point because of the way their back looks. Graham's curves are at 64* and 49*.

Graham has had no pain or numbness or anything else associated with his Scoliosis. The Dr. said that unless Graham's curve progresses to 70*-80* before he stops growing he wouldn't anticipate any medical problems in the future associated with Scoliosis. They did say that his bone growth measurement was a 4. I don't remember exactly what that means. I know the original Dr. said it meant he would grow 2"-3" more.

Now, I am happy to consider not having surgery due to the risks involved and the fact that if they do surgery he will have to have 2 fusions, one anterior which they said they could probably stop at T3? But, I am concerned that he will have problems in the future. The Dr. said that older people with Scoliosis have no greater problems with back pain than the average person. He said that because of where Graham's curves are there is no concern about organs being affected.

At this point we made an appointment for more x-rays in September. Then he said if the curve has progressed we can decide from there. However, I am hoping to get as much information as I can now to decide if this is the best course. I know that waiting won't make a huge difference as far as having surgery. We weren't planning on having surgery until September anyway. I'm just hoping some of you might have some good information that can help us determine if this is a good course of action. I hate to put off surgery now and Graham start having a lot of problems in 10 years.

So, thanks again for all your support and any and all help is very much appreciated!

Katy

[LeaEvelyn]

Hi Katy,
Where is Graham's curves? And how old is he? My son had spinal fussion a year ago. He is now 14 years old. He had one major curve, and is fussed from T-3 to L-3. He needed surgery, and his curve was measured at 57*. His doctor said that judging by the way he was progressing and the amount of potential growth left, he would eventually have problems with his heart and lungs. Has your son had scoliosis for very long? or is it something that was just receintly discovered? I guess if I were you, I would want a little more info from people who has scoliosis with larger degree curves, that haven't been treated with surgery. It seems with curves of that magnitude, he might be more prone to back problems later in life. The internet is a wonderful place for looking up information. I was on a site a while back that went into detail about adults with untreated Idiopathic Scoliosis. I can't remember the site, but the Scoliosis Research Society is a good place to start, from there, you can click on other related sites. Hope this can be of some help.
Good Luck to you.
LeaEvelyn

[momof5]

Graham actually has 3 curves. One at T1-T7 which as 49*, T7-T12 64*, and T12-L4 49*. He will be 16 in August. He is already 5'10", so I don't think they are predicting a lot more growth. His bone age was a 4 (I think ). Having the 3 curves really balances him. You almost can't tell even with his shirt off that he has Scoliosis if you don't know. He was diagnosed last July. His curves then were 45* 60* and 45*. The Dr. says this is still within the margin of error for reading from the x-rays, meaning it may not have even progressed that much.

I am wondering also if the PT and exercise he has done since his diagnosis has helped to stop it from progressing. We did PT twice a week for 5 months and exercises at home, plus swimming before he went to Shriner's. Unfortunately there is no way to know what effect this had.

Anyway, I did find the Scoliosis Research Society, thank you. I will keep looking for more information about untreated Scoliosis.

Thanks again for your input.
Katy

[LeaEvelyn]

Hope you find the answers you are looking for. Good luck in your search. I would assume that PT would help Graham, at the very least, it would keep his back mucles strong to support the curves he has.
Take Care,
LeaEvelyn

[lnetzer]

Still without answers......

Hi everyone! Josh has been wearing his event monitor for a month now and we still don't know anything. The pediatric cardiologist is the ONLY one in a 300 mile radius, so he is extremely busy. I've talked to his nurse and she said he's read all of the transmits that have come in and they are normal (the monitor Josh wears he hits a button and it records the heartbeat for a few minutes and when the unit has 5 events on it we call it in and they print it off like an EKG on a strip). I can't believe it's normal to have a racing heart at 176 beats/minute! I sat on hold for 40 minutes today trying to get an appt. I'm very frustrated. Josh wishes he could have surgery and get it over with as he's been having some back pain the past week or so. His original surgery date was this past Monday. Just wanted to keep everyone filled in. I hope everyone is doing well :-)

Laurie
mom to Josh age 13 due for surgery May 22 for 2 major curves....75 and 55 degrees.

[flowerpower]

Hi Laurie,

I hope things will be ok for Josh and no further delays for his surgery. 176 bpm, wow! That must feel scary for Josh when that happens. Thanks for keeping us posted, keep in touch and take care.

Renee