19 Year Old Male. Scoliosis Progressing.

[jrnyc]

Cool, Ed..call me for your triathalon! wanna see you bike ride!


jess

[Suzy]

Thanks for your post. Who was your doctor? Was it Dr. Pichetti? I'm guessing you do a posterior surgery right? Also, did you gain any height? I know it's not going to be the same for me, but just to get an idea. And what do you mean running feels different? By different, does that mean it would hurt or I can't play bball or sports anymore or what? Also, is there a "limit" to the amount of weight you can do at the gym or can you do whatever you want, just don't put pressure on the spine? I already stopped doing some workouts like Squats and Deadlifts for my spine. Anyways, thanks for your post!
John

Dr.Mermer @ Kaiser Roseville was my Dr. He was @ Mercy San Juan at the time of my surgery. Posterior only, yes. I got back what height I had lost about 1 1/2". Running feels like the rods are pounding into my last 2 vertebrae, uncomfortable. I also notice this feeling when I was on our boat for the first time as well as on the chairlifts when up skiing. I am fused to L4. I don't know how b-ball will feel for you, I don't play. Running on hard surfaces might just be an annoying feeling to you or uncomfortable. I just don't like the way it feels. As for the amount of weight lifting you can do at the gym I would say from my experience as long as you don't "Load" your spine (as my PT said) you will be fine. Instead of squats I do leg presses, dead lifts are BAD for your spine weither you have spine problems or not. Just FYI and everyone else out, there bending forward to put your hands on the floor puts THE MOST stress on your spine. I was shocked to find this out as I always thought it was a good stretch. Learned this from my PT as well. (He has worked with 100's of scoli pt's) Dr. Pichetti is my Daughter's Dr. (She is 14 with a 21*L curve) He and I have talked about my back and he has seen my x-ray's. He said he would have stopped @ L3 as the statistics have shown future surgery for those fused to L4 or L5. Where as my Dr. said I had about 50/50 chance of future surgery & I need to keep my core strong to help avoid this. Also, the fact that if I don't work out at least 1X per week my back tightens up a bit keeps me at the gym. I had my PT come to my gym for my last session to make sure I was doing the machines correct. I even found out I can still do situps, I just don't go up as far. I even do push ups too, guy type, sometimes with my "power pushups."

[JDM555]

Dr.Mermer @ Kaiser Roseville was my Dr. He was @ Mercy San Juan at the time of my surgery. Posterior only, yes. I got back what height I had lost about 1 1/2". Running feels like the rods are pounding into my last 2 vertebrae, uncomfortable. I also notice this feeling when I was on our boat for the first time as well as on the chairlifts when up skiing. I am fused to L4. I don't know how b-ball will feel for you, I don't play. Running on hard surfaces might just be an annoying feeling to you or uncomfortable. I just don't like the way it feels. As for the amount of weight lifting you can do at the gym I would say from my experience as long as you don't "Load" your spine (as my PT said) you will be fine. Instead of squats I do leg presses, dead lifts are BAD for your spine weither you have spine problems or not. Just FYI and everyone else out, there bending forward to put your hands on the floor puts THE MOST stress on your spine. I was shocked to find this out as I always thought it was a good stretch. Learned this from my PT as well. (He has worked with 100's of scoli pt's) Dr. Pichetti is my Daughter's Dr. (She is 14 with a 21*L curve) He and I have talked about my back and he has seen my x-ray's. He said he would have stopped @ L3 as the statistics have shown future surgery for those fused to L4 or L5. Where as my Dr. said I had about 50/50 chance of future surgery & I need to keep my core strong to help avoid this. Also, the fact that if I don't work out at least 1X per week my back tightens up a bit keeps me at the gym. I had my PT come to my gym for my last session to make sure I was doing the machines correct. I even found out I can still do situps, I just don't go up as far. I even do push ups too, guy type, sometimes with my "power pushups."

Awesome. Thanks a lot for your post. I am trying to set a date but I doubt I can set it with only 5 weeks left. I still need bending xrays, blood samples, and many tests. I don't want to wait till summer and waste another 6 months from recovery time. I wanna get back in the gym by 6 months. So if my doctor says I need to go to L4 or L5, am I for sure going to get future surgery? I don't want to have more problems down the road. And you said "You gained back the 1 and 1/2 inch you lost", what do you mean by "you lost"? Where you like 5'7 and over the years went to 5'5.5? If so, F me because I keep getting taller lol. I don't want to be 6'5-6'7, that is way too tall.

[jrnyc]

Hi JDM
lots of people seem to lose height as their curves worsen...the more curve, the shorter you get...but for women, some also lose height due to osteopenia/osteoporosis, & anyone can also lose height from degenerated discs....

you sound like you could sure stand to lose some height...if you care to donate it, i need some! gone from 5'5" down to 5"3" due to all of the above that i listed!

take care, best of luck
jess

[WNCmom]

if my doctor says I need to go to L4 or L5, am I for sure going to get future surgery?

FYI:

My son was fused to L4 at age 13 a year ago. When I asked about the chance of future surgery, the surgeon (at Shriners in Philadelphia) answered that he has a 15% lifetime chance of future back surgery, and that (believe it or not), a longer fusion does not increase that chance. He agreed that seems to defy logic--I would think that a longer fusion would increase the chances--but in my understanding of what he said, that's what the research shows.

[Suzy]

I lost my height due to my curve, not degenerated discs. I shrunk from 5' 7 3/4" down 1" (I mistyped the extra 1/2") I had my husband measure me prior to my Dr. measuring me and was SHOCKED when he said 5' 6 3/4"! I told him "Measure me again" He said "I know how to use a tape measure!" LOL. Dr. verified the height loss.

As for future surgery one Dr. told me the statics show ending a fusion at L4, L5 = future surgery. I don't know if it was a sour grapes situation as he wasn't my surgeon. I never ran across this info when doing my research either. My Dr. said 50/50 chance depending on how I took care not to stress my lower back and keeping my core strong. I was back at the gym with my PT working out at 4 months. Nothing heavy but I was working out.

5 weeks to get on a surgery schedule? That is quick.

[JDM555]

UPDATE:

Well, the pain is getting worse and I am hating my scoli more and more everyday. I told my dad to talk to my surgeon to barely "squeeze" me in during Mid December when I get winter break. I will have 5 weeks to recover before going back to school. I just got a call today that I got the surgery date and my pre-op visit is on Dec. 7th. I hope my bending x-rays show that I have a flexible spine to correct my 53* curve to something hopefully under 20. I am a little worried about all the people complaining about their pain and aches and medication and sleepless nights. I just hope everything works out for me.

BTW, my surgeons name is Ivan Cheng at Stanford Spine Center in Redwood City, is there ANY way I can find some reviews/ratings/experiences with this doctor so I can double check I'm making a right decision by having him as my surgeon?

Any tips would be very much appreciated as well.

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?


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? He said he will use artificial bone graft as well.

[Job]

Been in the same spot.

Sorry that this post is kinda late and may be somewhat irrelevant in the conversation on here but I dont sign on that often. JD I was in the exact same situation as you. I am 6'4" after the surgery and I had it the summer before I turned 20. I was playing competitive basketball pre-op so I can relate to the desire to stay in shape. In terms of getting the surgery, DO IT, and dont look back. Ya the first six months were not fun at all, I couldn't put my own socks on and I lost about 20 pounds from the op. However, after 7-8 months I was back to playing contact bball at a competitive level although I could not move quite right yet. After a year I was back in the gym lifting and playing hoops again just as well as I did before the surgery. You wont regret the op in the long run. Now that I am about 16 months post-op, life is back to being as normal as it can be.

I know this is very rambly, but oh well. If you have any questions for someone with a similar story as you, feel free to ask. Either send me a private message or post it to this thread and I will try and check it regularly. When life gives you lemons, make lemonade.

-Job

[JDM555]

Sorry that this post is kinda late and may be somewhat irrelevant in the conversation on here but I dont sign on that often. JD I was in the exact same situation as you. I am 6'4" after the surgery and I had it the summer before I turned 20. I was playing competitive basketball pre-op so I can relate to the desire to stay in shape. In terms of getting the surgery, DO IT, and dont look back. Ya the first six months were not fun at all, I couldn't put my own socks on and I lost about 20 pounds from the op. However, after 7-8 months I was back to playing contact bball at a competitive level although I could not move quite right yet. After a year I was back in the gym lifting and playing hoops again just as well as I did before the surgery. You wont regret the op in the long run. Now that I am about 16 months post-op, life is back to being as normal as it can be.

I know this is very rambly, but oh well. If you have any questions for someone with a similar story as you, feel free to ask. Either send me a private message or post it to this thread and I will try and check it regularly. When life gives you lemons, make lemonade.

-Job

You don't understand how relieved I was after reading this. Thanks a lot for sharing your experience. I do have questions since this is very rare for another 19-20 y/o male who is tall/athletic to have scoliosis like me. I will send you a PM. BTW, earlier in this thread, someone said when they would play bball, she felt the rods pounding against her spine or something like that? When you run, does it feel like you were before or different in a good/bad way? I'll ask some more relating gym in the pm, again thanks a lot job.

[jrnyc]

Hi Job
can you say where you were operated to...what levels...did it go to L5 or below?

glad you are feeling better& getting back to doing stuff you love....

jess

[Suzy]

Hey JDM,

It was me who said it feels like the rods are pounding my last 2 vertebrae. You need to know how low Job's fusion is to gauge accurately his running comfort/ability. I am betting it is higher then mine or yours will be. Not trying to be sour grapes, just VERY realistic.

As for the "10 inch ugly scar" and "destroying your back muscles." My scar is 13" and I am very proud of it, I earned it. I am a pretty vain female and this is of no concern to me. My back muscles look better then ever, I am symmetrical and very toned. These are just some of the issues you will look back on and chuckle about, because of the concern you had about them pre op, as we all have.

[JDM555]

Hey JDM,

It was me who said it feels like the rods are pounding my last 2 vertebrae. You need to know how low Job's fusion is to gauge accurately his running comfort/ability. I am betting it is higher then mine or yours will be. Not trying to be sour grapes, just VERY realistic.

As for the "10 inch ugly scar" and "destroying your back muscles." My scar is 13" and I am very proud of it, I earned it. I am a pretty vain female and this is of no concern to me. My back muscles look better then ever, I am symmetrical and very toned. These are just some of the issues you will look back on and chuckle about, because of the concern you had about them pre op, as we all have.

Yes, I did notice his fusion might be higher than mine most likely, I asked him in a PM he has yet to respond to. But I'm not going to complain about my scar, but I would rather not have one. It won't even be noticeable on my skin tone I bet. And what I meant was, they won't "destroy your back muscles" as in they will rip apart your back and just start cutting everything, It's just to get to the spine, there is a lot of healthy muscle tissue in the way, so there is some damage done. Nothing major though I understand. I got your pm and responded. Thanks suzy.

[spinalfusion09]

hey there! I'm 18 and I'm 2 months post-opp today. I was fused from T4-L3 and my thoracic curve was at 60 degrees. I thought I'd reply because I totally know how you feel about not working out and being active and stuff. Before surgery I did yoga, turbo kickboxing, tap dance, ballet, and I did 40 minutes of cardio then weights 5 days a week. I never in my life thought I'd need surgery for my scoliosis but it wouldn't stop pregressing. If it had gone further, for me, it would have collapsed my left lung and do God knows what else. I was not in any pain other than aches on my right side but the x rays were not pretty. Not to mention if I planned on having kids in the next ten years the weight of a baby would have made it worse and more strenuous on my back. I do not regret having surgery at all. I know you're already tall but no matter how hard I tried I could never be 100% straight when sitting or standing. I also feel like I breathe more easily because my ribs are now even (they definitely were not before). I love dancing! Of course there will some things I can't do like certain dance moves in ballet due to loss of some flexibility. Compared to what I gained from the surgery, thats a very small price. Its a hard recovery for your body but its amazing how much your body can take and still come out victorious :} The 6 week post opp for me was the magic week when everything turned around for me. I'm walking and jogging lightly now. I can start strengthening excercises at 3 weeks to get stronger again and so I can get back to my gym routine. I hope all works out well for you and if you end up having surgery good luck + if you have any questions don't hesitate to ask :}
Maliha
Spinal Fusion September 2009

[JDM555]

hey there! I'm 18 and I'm 2 months post-opp today. I was fused from T4-L3 and my thoracic curve was at 60 degrees. I thought I'd reply because I totally know how you feel about not working out and being active and stuff. Before surgery I did yoga, turbo kickboxing, tap dance, ballet, and I did 40 minutes of cardio then weights 5 days a week. I never in my life thought I'd need surgery for my scoliosis but it wouldn't stop pregressing. If it had gone further, for me, it would have collapsed my left lung and do God knows what else. I was not in any pain other than aches on my right side but the x rays were not pretty. Not to mention if I planned on having kids in the next ten years the weight of a baby would have made it worse and more strenuous on my back. I do not regret having surgery at all. I know you're already tall but no matter how hard I tried I could never be 100% straight when sitting or standing. I also feel like I breathe more easily because my ribs are now even (they definitely were not before). I love dancing! Of course there will some things I can't do like certain dance moves in ballet due to loss of some flexibility. Compared to what I gained from the surgery, thats a very small price. Its a hard recovery for your body but its amazing how much your body can take and still come out victorious :} The 6 week post opp for me was the magic week when everything turned around for me. I'm walking and jogging lightly now. I can start strengthening excercises at 3 weeks to get stronger again and so I can get back to my gym routine. I hope all works out well for you and if you end up having surgery good luck + if you have any questions don't hesitate to ask :}
Maliha
Spinal Fusion September 2009

Awesome, Thanks a lot for this. It makes me feel a lot better about my surgery. My surgery is Dec. 16, ehhh 2 more weeks and I'll be getting cut open like a piece of steak lol. The thing I'm worried about is getting fused to L4 or L5, I already have extremely long legs and I'm not that flexible when it comes to bending, so if I get fused, ehh. I can't seem to have good posture no matter how much I try either, so I know what you mean. As far as breathing, I am always out of breath at the gym and it takes me a long time to recover/catch my breath. My rib cage is very uneven and is rotated. I think that might be why it's a little harder to breath. As far as being back in the gym at 3 months post-op? How is that possible? I thought it was 6 months when you can get back and light weights at that if your surgeon approved, but some surgeons don't even let you touch weights until 1 year. 3 Months sounds really quick. Anyways, thanks again and wish me luck on my surgery in 2 weeks.

[spinalfusion09]

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