19 Year Old Male. Scoliosis Progressing.

[JDM555]

I totally know hwo you feel about feeling like a piecesteak haha. Don't worry too much about flexibility because you don't wanna let it bug you. And you're not alone after. My physical therapist helped me so much! And you'll learn to move your body and they make sure of that. I bend using my hips and knees now (I probably should have been bending like that before surgery considering the main curve in my back was in the thoracic region haha) I'm sure you'll be great! Thats interesting that you can tell its harder to breathe. I never felt like I had shortness of breath but then again my back was not straight all my life. Now it feels like I have more "room" for air :} I haven't been to the gym in a while but I've been walking everyday and it feels great on my back. My doc said I'm in the clear to try elipticals at the gym. He said treadmills arn't good because of how they're cushioned and how they distribute weight so I walk outside and on trails and stuff. But elipticals take stress off of your spine. My doc really excourages elipticals :} I still can't do light weights for a couple more weeks but it makes sense because your muscles have been cute and are healing. He also said it was great that I was healthy and in shape because you'll recover a lot faster. Not to mention you're young and thats definitely an advatange for a procedure like this. I was scared not gonna lie but came out victorious like many other people who go through this :} Keep us posted and I hope you have a Merry Christmas + happy new year!!
Maliha

Thanks, I will definitely walk daily when I can because it's better than sitting in a bed eating a hamburger all day lol. I just can't wait to see how much my back improves in the appearance (rib hump and unevenness) and in the pain department because just walking hurts my lower right back, it throbs and it hurts from that damn rib hump. I will probably stand taller/have better posture, I just hope I end up healthy and in shape and no complications go. I will have my pre-op visit next monday on the 7th and I will take bending xrays and I hope they can tell me good news saying it might bring the 53 degree curve to under 20.
John

[rich1752]

John, I have my lumbar surgery on December 9th at Cedars Sinai in Los Angeles. I also need disc repaired in the lumbar area. keep in touch with your process

rich

[txmarinemom]

Yeah, I understand about 8-12 months after surgery I will be able to play. But I wouldn't want to risk any collision and causing damage to my spine. Also, I've worked very hard at the gym for the past year to get where I am at.

JDM,

If you *want* to play badly enough, under typical circumstances, you can. If you choose not to play because of worry about "collision and causing damage", that's your choice. And it is a choice. We all make them.

Like Sally, I refused to give up what I loved before surgery (for 33 years prior to surgery, actually) - and that love was softball. I had surgery (T4-L1), recovered solo and fairly quickly, and was chomping at the bit - literally counting the days - until I could go back.

At 7 months post-op, my surgeon finally let me off that last restriction. I played a double header that day and hit the ground sliding 4 times.

Am I saying this is for everyone? No. But surgery is only an excuse to give up (especially at your age) if you let it be. Don't throw in the towel before you've even met your opponent, kiddo.

There's a LOT more hope for you than that.

Hang in there.

Pam

[spinalfusion09]

I hope all goes well with your xrays! If its any consolation my thoracic curve was at 60 degrees and barely flexible but my doc got more correction than he anticipated. All I can say with me, and it might be different for you because every case + person is different, is let your body heal and it will take a few weeks. My physical therapist said is you have to listen to your body and if it hurts don't do it. The first few weeks were hard for me because of the drugs and my body not wanting to do a lot. But then the 5-6 week came and I felt like a different person. I have never felt better about myself physically and my back supports me now rather than hindering me :}

[txmarinemom]

Also, If I have surgery on the 16th, is it possible to go to a Christmas party that is 1-1.5 hours away? I will be on medication, lying down with plenty of pillows in the car. That is 9 days after my surgery. I would hate to force my parents to stay because they wouldn't celebrate Christmas while leaving me home alone. So is it possible?

9 days after surgery, a 1-1/2 hour car ride (and hanging out at a party?) probably won't be high on your to-do list. Just my guess.

ALSO! I just read something about XLIF which goes through the side for Lumbar scoliosis and my surgeon actually does these types of surgeries. Do you think it is a possibility to get it done this way or would he still have to do the posterior 10" ugly scar and destroy my back muscles to get to the spine?

The only XLIF I'm aware of just substitutes that approach for an anterior approach - and still utilizes the posterior entry for rod placement.

I'll echo what someone else said about the value of walking (I did a 5K AIDS Walk at 33 days post-op); it makes a huge difference, I think.

BTW, my scar was white by the summer after my surgery (in Feb.), and I don't feel my back muscles were "destroyed" at all. Temporarily shocked? Yeah. Not permanently.

[spinalfusion09]

I have to agree with txmarinemom about the car ride. Couldn't you have people come over to your house? My mom drove me for my 2 week post op appointment to get 9 staples on lower back hip area removed and it was the worst day of my recovery. I have a very high pain tolerance and I was crying. The muscles in my back started to spasm non stop and the physical therapist told it was because of the car vibrations on a wounded back. If you're feeling up for it try it but drive slow. I definitely did not feel up for a car ride for a good 3-4 weeks after surgery. It sucks I know but its part of the healing process.

[JDM555]

I hope all goes well with your xrays! If its any consolation my thoracic curve was at 60 degrees and barely flexible but my doc got more correction than he anticipated. All I can say with me, and it might be different for you because every case + person is different, is let your body heal and it will take a few weeks. My physical therapist said is you have to listen to your body and if it hurts don't do it. The first few weeks were hard for me because of the drugs and my body not wanting to do a lot. But then the 5-6 week came and I felt like a different person. I have never felt better about myself physically and my back supports me now rather than hindering me :}

Awesome. I can't wait to have that same feeling in 5-6 weeks after surgery.

9 days after surgery, a 1-1/2 hour car ride (and hanging out at a party?) probably won't be high on your to-do list. Just my guess.



The only XLIF I'm aware of just substitutes that approach for an anterior approach - and still utilizes the posterior entry for rod placement.

I'll echo what someone else said about the value of walking (I did a 5K AIDS Walk at 33 days post-op); it makes a huge difference, I think.

BTW, my scar was white by the summer after my surgery (in Feb.), and I don't feel my back muscles were "destroyed" at all. Temporarily shocked? Yeah. Not permanently.

Awesome, I don't care if the ride will hurt me, I'm guessing I won't be all happy and giddy about christmas dinner with friends 1.5 hours away, but I would HATE to ruin christmas for my family by keeping them home. I will know by the car ride home from the hospital (30 mins) if I can last 2-3 times that distance again in a couple of days. Hopefully I recover quick or the pain meds are strong lol.

I have to agree with txmarinemom about the car ride. Couldn't you have people come over to your house? My mom drove me for my 2 week post op appointment to get 9 staples on lower back hip area removed and it was the worst day of my recovery. I have a very high pain tolerance and I was crying. The muscles in my back started to spasm non stop and the physical therapist told it was because of the car vibrations on a wounded back. If you're feeling up for it try it but drive slow. I definitely did not feel up for a car ride for a good 3-4 weeks after surgery. It sucks I know but its part of the healing process.

We can't really have people, everyone is already invited at this place 1-1.5 hour away and we can't really have everyone just cancel and come to our house. I feel bad about this because I know my mom wouldn't leave me on christmas at home all alone, so if my mom won't go, no one else is going. I would hate that.



UPDATE:

I got an envelope in the mail by my surgeon and it says I will need to be fused from T4-L2....I don't know why, but I think that is incorrect. T4 seems way too high up and L2 is not low enough, by looking at my spine, I would guess T8 or even T9-L3 or L4. Or am I going crazy?

[txmarinemom]

Awesome, I don't care if the ride will hurt me, I'm guessing I won't be all happy and giddy about christmas dinner with friends 1.5 hours away, but I would HATE to ruin christmas for my family by keeping them home.

It's obvious how badly you want to make this trip for your parents, and the only things I can tell you with any certainty are:

1. Your body run the show after surgery, and it will CLEARLY tell you what it can (and can't) do. I hope it cooperates with your plans. You'll know, without a doubt, what it's decided when the time comes.
   
2. Your mother couldn't *possibly* have her Christmas ruined by staying home with the kind of 19 year old who worries it would ruin her Christmas. I know you can't fully understand what that means, but I hope someday you will.

UPDATE:

I got an envelope in the mail by my surgeon and it says I will need to be fused from T4-L2....I don't know why, but I think that is incorrect. T4 seems way too high up and L2 is not low enough, by looking at my spine, I would guess T8 or even T9-L3 or L4. Or am I going crazy?

Bear in mind that what you're seeing on the x-ray very likely involves compensatory curvature in addition to structural curvature. If you're not familiar with this, compensatory curves only exist to balance out structural curves. Your body will always fight to keep your head centered over your pelvis, and compensatory curves are one way it tries to achieve that. Compensatory curves have a very good chance of straightening (partially or completely) when the structural curve(s) are addressed.

While it may look like you're curving severely in the lumbar area, your surgeon has apparently decided some of this this curvature is compensatory - and doesn't need fusion.

In looking at your A/P x-ray, it does seem you have some curvature in the thoracic area (notice how it curves right and then goes back left?) with an apex (the point furthest away from the midline) at or above T9. That would explain a decision to fuse to T4. The apex is never the last involved vertebra, and failing to fuse all involved vertebrae can allow the fused vertebrae (above and/or below the fusion) to continue curving. There's a method to (what seems like) your surgeon's madness.

T4-L2 isn't going to be a big deal once you're healed. Your flexibility will barely be limited - if at all. Fusion through the thoracic area affects very little because very little bending is done in that region to begin with (because of the ribs).

I've remained extremely flexible after a T4-L1 fusion. I do yoga, and in addition to having NO problem with any of the poses, I'm probably more limber than most classmates.

I can still lie on my back, bring my legs up over my head, and not only touch my toes to the floor - I can place my *shins* on the floor. I can do a backbend again, although that took time (everything else had tightened up after surgery ... chest wall, abs, quads).

There actually isn't anything I've found that I can't do because of my fusion. Fusion to L2 will limit you a little more, but unless flipping your legs over your head and/or doing a backbend are important to you, I think you'll be okay.

You probably won't notice any range of motion loss with fusion up to T4. I can turn my head around without difficulty.

Plenty of people on this forum have managed very, very well with higher and lower fusions, but I'm glad to hear your surgeon has limited yours to the mid-range.

Although it's scary to you right now, I understand why: You can read a million stories, but it's still a huge unknown until you have your own experiences for reference. I know you don't want to put your life on hold, but I promise it'll be right there waiting for you ... minus a lot of heartbreak and pain an unfused spine can cause as you age.

Again, hang in there! You're going to do just fine.

Best regards,
Pam

[JDM555]

It's obvious how badly you want to make this trip for your parents, and the only things I can tell you with any certainty are:

1. Your body run the show after surgery, and it will CLEARLY tell you what it can (and can't) do. I hope it cooperates with your plans. You'll know, without a doubt, what it's decided when the time comes.
   
2. Your mother couldn't *possibly* have her Christmas ruined by staying home with the kind of 19 year old who worries it would ruin her Christmas. I know you can't fully understand what that means, but I hope someday you will.

Bear in mind that what you're seeing on the x-ray very likely involves compensatory curvature in addition to structural curvature. If you're not familiar with this, compensatory curves only exist to balance out structural curves. Your body will always fight to keep your head centered over your pelvis, and compensatory curves are one way it tries to achieve that. Compensatory curves have a very good chance of straightening (partially or completely) when the structural curve(s) are addressed.

While it may look like you're curving severely in the lumbar area, your surgeon has apparently decided some of this this curvature is compensatory - and doesn't need fusion.

In looking at your A/P x-ray, it does seem you have some curvature in the thoracic area (notice how it curves right and then goes back left?) with an apex (the point furthest away from the midline) at or above T9. That would explain a decision to fuse to T4. The apex is never the last involved vertebra, and failing to fuse all involved vertebrae can allow the fused vertebrae (above and/or below the fusion) to continue curving. There's a method to (what seems like) your surgeon's madness.

T4-L2 isn't going to be a big deal once you're healed. Your flexibility will barely be limited - if at all. Fusion through the thoracic area affects very little because very little bending is done in that region to begin with (because of the ribs).

I've remained extremely flexible after a T4-L1 fusion. I do yoga, and in addition to having NO problem with any of the poses, I'm probably more limber than most classmates.

I can still lie on my back, bring my legs up over my head, and not only touch my toes to the floor - I can place my *shins* on the floor. I can do a backbend again, although that took time (everything else had tightened up after surgery ... chest wall, abs, quads).

There actually isn't anything I've found that I can't do because of my fusion. Fusion to L2 will limit you a little more, but unless flipping your legs over your head and/or doing a backbend are important to you, I think you'll be okay.

You probably won't notice any range of motion loss with fusion up to T4. I can turn my head around without difficulty.

Plenty of people on this forum have managed very, very well with higher and lower fusions, but I'm glad to hear your surgeon has limited yours to the mid-range.

Although it's scary to you right now, I understand why: You can read a million stories, but it's still a huge unknown until you have your own experiences for reference. I know you don't want to put your life on hold, but I promise it'll be right there waiting for you ... minus a lot of heartbreak and pain an unfused spine can cause as you age.

Again, hang in there! You're going to do just fine.

Best regards,
Pam

Thanks a lot for your post, I really appreciate everything you did. I will ask him more into detail why he chose to do the fusion from T4-L2. It would be awesome if it straightened out my lumbar curve and I was still able to keep my flexibility. He will probably have a more accurate opinion when he sees the bending xrays I will take next monday. I will update everyone what happens on next monday and as it gets closer to my surgery day.

13 days to go.

[JDM555]

My father scheduled this surgery pretty short notice. And when we asked if I needed to donate blood, the surgeon said that it wasn't necessary because they didn't want my blood count to drop. Does this mean they will most likely use Cell Saver or have me use donated blood/transfusion, because my mom doesn't want me to have a transfusion and says you never know what that blood might have, even though it's really rare, but she doesn't want me to take any chances. Most likely it is cell saver correct? I will ask again tomorrow at my Pre-Op.

[LindaRacine]

Hi...

Yes, I think scoliosis surgery is always performed with Cellsaver, at least here in the U.S. There's no guarantee that you won't need additional blood, but it's really very low risk. The risk of complications if you don't have enough blood volume is probably much greater.

Regards,
Linda

[spinalfusion09]

I was just reading and thought I'd tell you something in case you were wondering. I donated 2 units of my own blood which they used during my surgery (which was about four hours long). On my third or fourth day in the hospital, my blood count dropped from 12 to 8. So I received an additional 2 units of donated blood. I was hoping that I wouldn't need to receive donated blood but after a 4 hour surgery of having your back worked on, then 4 days in the hospital not eating anything and barely drinking, and having blood taken by the hospital every morning for tests...I needed some blood. Everyone's case is different though. They're extremely careful when it comes to donated blood. I've been a donor and receiver so there ya go. Hope that helps

[rich1752]

my doctor said that he would rather have extra on had just in case. He wanted 6 units available. He said that the blood bank runs low during this time of the season, so I donated 2 myself and family members donated, so actually have 8 in storage. He did say that they use the machine to clean my own blood and recycle it, but he wanted to be prepared.

Linda, sorry to bother you again, but my doctor wants to go down to S-1. My concern is that once you fuse that area, there is no going back. I feel with medical progress now a days, what happens if they can fix the area without fusing in the future. He did say that I have some DDD in the L5 area, but was going to look at my MRI and xrays one more time, to see if he can skip the S-1. Have you heard about doctors forgoing the S-1 in order to give the patient flexibility?

thank you for all your knowledge

rich

[jrnyc]

Dear Rich
just a note...i was told by 2 surgeons in nyc that i had to be fused to S1 because of the disc damage that i had..that i would end up right back in surgery within a couple of years if i didnt go to S1 for first surgery...cause believe me, i dont want to be fused to the pelvis, despite some on forum telling me it is not as bad as i think...they both said that they do not advise their patients with disc damage in lower area to do otherwise, as it just leads patients to problems & more surgery....

best regards
jess

[JDM555]

Alrighty, Tomorrow is my pre-op appt and I wrote out a list of questions that I will ask tomorrow. I will take some before shorts of my back/rib hump/etc. and some after shots after surgery and compare the two. Hopefully everything will work out.
John

Only 10 days to go.