Surgery --- 50 Degrees

[billz45]

Once again, I would just like to thank everyone from the bottom of my heart for any advice and/or opinions you may have had to offer for my specific case.

Having all this said, I would like to address one last issue:

My curve seems stable at 50 degrees and it has been like this, with bracing, for many years. Of course, the brace helped at first from 70 to 50 (middle of spine), but every year thereafter it just remained at 50, period.

Since I know that I should do EVERYTHING I possibly can to avoid surgery (knowing how serious it is, etc.), if the curve remains at 50 throughout my life (I am now almost 17 and wearing brace), the questions is – do I REALLY need surgery here?

I mean, of course, it is better safe than sorry to prevent problems NOW – knowing that if a curve is 50 or greater just before your spine starts growing – however, I am VERY frustrated because I am right on the boarder!

I only wish that my case was either at 20 degrees or 80 degrees, where I could sit down and EASILY tell myself “Look, it is the only choice buddy”, but the reality of the situation is that the curve may be at 50 for the rest of my life and I would be doing the surgery, and risking the following:

1. Paralysis – of course, this is rate but is guys are only affected 0.05% of all scoliosis cases in the word, who’s to say this SAME ‘rare occurrence rate’ won’t make me paralyzed?

2. Bending, Twisting, Lifting – all will be limited FOR LIFE. This is no joke and I will have permanent limitations until I die.

3. The Scar – Sure, looks shouldn’t be more important than your health, but hey, ask yourself if this was true why do so many people get cosmetic surgery? Obviously, everyone is going to understand when the child is younger (I’m talking to parents here guys), but trust me, AS A TEEN, I’m telling you it will cause embarrassment, depression, anger, and LOTS of frustration. Then I ask myself -- Is all this REALLY worth it?

God I’m just SO FRUSTARTED that I am stuck with 50 degrees in this situation and I am very angry with myself!

[phaden]

Re: Surgery --- 50 Degrees

[i]

1. Paralysis – of course, this is rare but if guys are only affected 0.05% of all scoliosis cases in the word, who’s to say this SAME ‘rare occurrence rate’ won’t make me paralyzed?[/B]

Ok, I'm a statistics teacher, so I can't resist. It's easy to think "a rare event happened to me once, so it will happen again", but that's not mathematically accurate. Getting severe scoli (for a guy) is extremely rare. It happened to you, and that's very unfortunate, but it doesn't change the probabilities of *subsequent* events. The odds of paralysis apply prior to your surgery, completely independent of what has happened before, and they are very, very low.

Second, it's important to consider how that stated probabilities are calculated. If they are based on large meta-studies of surgical records over a long period of time, they may include data from inexperienced surgeons, procedures done without spinal cord nerve monitors, and people who were at greater a priori risk of surgical complication than you are. People who, for example, had other health issues like cerebral palsy, or who were elderly at the time of the procedure. Some of these are things over which you have control (as opposed to the randomness of getting scoli in the first place). You can improve your odds by making sure you are seeing a reputable, experienced surgeon, having the op done in a modern hospital with proper spinal cord montiors, making sure you are as fit as possible, and so on. This can effectively give you better than the 1:2000 odds that one sees quoted.

Granted, you will never get the odds of bad things down to zero, but hey, the odds of getting hit by a meteor aren't zero either (not to mention the odds of getting in a bad car crash every time you head out onto the freeway).

Having said that, this is undoubtedly a difficult decision for you to make. If you are at skeletal maturity and stable at 50 degrees, perhaps you will not progress. There are some studies that have been done that show the probability of progression for various curve sizes at maturity (the reference escapes me, but you can probably find it from Linda Racine's site). This probability is very low for curves under 30, and rises steeply from there. The probabilty at 50 is quite high, but not 100%. There is also a recent study that determined that quality of life is high among scoli patients from the 40s, 50s and 60s who were never fused. Perhaps there is no need to make any decision now, but just to wait until there is evidence of curve progression (if it occurs) before committing to surgery (or deciding to decline it). This also gives the medical community a chance to get better and better at treatment. Your future surgeon can even get in some more practice.

(If you're wondering why I've been giving these issues so much thought (besides the interesting theoretical considerations), my 13 year old daughter is scheduled for spinal fusion on 2nd May, and we don't like those probability tables either. But she's got lots of growing left and two curves already over 50, so we don't get to choose.)



Good luck with your decision.

Patricia
New Zealand

[celestin1170]

Ok....i'm gonna jump in here for a minute.
My daughter just had surgery two weeks ago today. She is 12 years old and she had a 65 degree curve.
Of course paralysis was always in the back of our minds when we thought about the upcoming surgery. But, we also thought about how rarely it actually happens and we had all confidence in our surgeon that everything would go ok.
As for the limitations. You won't be totally limited for life. Yes, you are limited for the first year because it takes a long time for the spine to be totally fused with the rods. But afterwards you are able to go back to pretty much what you did before the surgery. Depending on where you are fused, you can still bend and twist. My daughter is fused from T3 to L4 which is pretty much the whole center of her back. She is able to bend and twist at the waist. She is two weeks post op and she already went out shopping!! I read a story on one of the sites that a little girl was able to continue with her gymnastics after she healed up. It's just a matter of getting used to bending a different way.
As for the scar. We thought it was going to be really nasty!! But it isn't. The incision was cut really clean and thin. We couldn't even see where it was stitched. It almost looked like it was glued shut even though I don't believe that it was. There are already small places along the incision that you can't even see the scar hardly at all. It will fade in time.
Having surgery is not an easy decision. Your so close on the borderline. Does your back bother you at all? Do you have a rib hump? My daughter had quite a large rib hump. But now it is pretty much gone and we can barely see it at all.
I hope that i've somewhat put your mind at ease about things. Feel free to contact me anytime with any questions.
Good luck with your decision.

Kim
Keri's mom

[lrmb]

Kim... I'm so glad to hear that your daughter is doing so well!! Congratulations to you all on getting through it. It's wonderful to hear some positive stories. All the best for the next while and for continued recovery ~Laura

[Sandra]

I can only give you my own experience----I am 46 years old and had surgery in 1984 when I was 26. I had a curve of 39 degrees and it corrected to 16 deg. I play tennis, swim, have snow skiied and have given birth to two girls. My scar is very tiny and really is not that noticeable. Remember, rare things happen rarely and common things happen commonly. My friend, Joan, had surgery 8 years before I did and she leads a completely normal life also. She is 10 years older than I am! So basically we had surgery back in the dark ages and it has only improved since then.
I wish you the very best with your decision.
Sandra

[Karen Ocker]

Sandra:
You think 1980s are the dark ages for spine surgery? I had scoliosis surgery in 1956 for a 100 deg curve at age 14. No rods, no walking for a year, 3 casts and I had to learn to walk again. Because I had no hardware I lost most of the modest correction obtained then and was re-done at age 60 2+ years ago.

One of the biggest advances was hardware-that enabled a person to walk right away while the fusion healed and further reinforced it. Otherwise it was a year in casts, bedridden for the fusion to solidify.
Karen

[Sandra]

Wow, I feel pretty humble now------Karen I hope you are doing well since your surgery 2 years ago. Thank you for your reply.
Sandra

[annie16]

bill z!
I can totally relate to you! I had my surgery about 7 months ago. I had it 2 months prior to my 17th birthday. Like you I was done growing, however I had 3 curves of 45 at the top, 56 in the middle, and 35 at the bottom. They corrected the top two with both anterior and posterior surgeries. Mine was progressing slowly, so I knew it would probably get worse. To answer your questions in order.
1. Paralysis- I am a control freak. I hate not being in control of whats going on around me. I am afraid to fly, so obviously putting my life, and the ability to walk, in my doctors hands was frightening. People told me statistics and all that stuff, but it didnt help. What I did was talk to my doctor, it is allowed to ask if hes ever messed up. I talked to people who had had similar surgeries and learned about their experiences with my doctor.

2. Limitations- I thought I was not going to be able to do anything ever again. More than 1/2 my spine is fused, and at 6 months I started back on swim team again. Doing the dives and flip turns and all the strokes as I did before. Im going on a ski trip at 9 months post-op, and I will be skiing with doctors permission.

3. Scar- I have 4 scars one a foot long down my spine. One 1 1/2 feet long curving from my back to my stomach. I have a deep inch scar on my side where the chest tube was, and a bone graft scar on my hip. I look like I got in a knife fight and lost. But its also a great conversation starter. Also, people will only see it when your in a swim suit/ (guys)have your shirt off. I dont know where you live but the time people can actually see it isnt that long. Also, I thought it was going to be one of those raised scars, but for most people they end up being a white line over time.

Surgery is a major decision. It should not be taken lightly, I totally understand where you are coming from. However you need to think of your health first. I hope I helped. Sorry if I sounded condecending. I didnt mean it. Best of luck.
God bless
Annie

[susannajon]

Bill,

I hate to seem doom and gloom, but from everything I've read, when you stop wearing the brace, there's a very high likelihood that the curve will progress. I would get at least three opinions from doctors who specialize in scoliosis surgery. Remember, the older you get, the less flexible the curve will become, meaning less correction. It's not going to hurt you to take your time, and get lots of opinions.

One caveat... if money is an issue for you and your family, you should seriously consider the Shriners hospitals. You need to make an appointment as soon as possible. They will treat you for free as long as your first appointment is prior to your 18th birthday. Shriners has some of the finest scolisis surgeons in the country. Here's a link if you're interested:

http://www.shrinershq.org/

Good luck with everything!

Susanna

[billz45]

About Shriners..............

I don't know if you know this, but I am in canada and this kind of treatment is 100% free in all of canada...so it cannot be an issue for me.

however, since apparently shriners uses minimally invasive techniques, it *MAY* be worth going there just for that since all other scoliosis surgeons do only traditional scoliosis surgery.

on the other hand, i live in toronto and nearest shriners hospital is montreal (quebec), which means that i will have to travel for hours to get there.

therefore, is all this worth doing just for minimally invasive benefit, plus i cannot keep travelling there for all post-op checks (complicated, expensive, far).?

[susannajon]

Bill, I think it's worth an opinion. We are travelling 4 hours for our daughter's surgery, because the surgeon is considered one of the best in the world. I would travel to the ends of the earth for the best doctor! What's a little inconvenience for the chance at a healthy happy life for you! I wouldn't worry about the distance, because you will only have to go back a few times. Someone local can take care of most of your follow up.

[JillfromCanada]

3. The Scar – Sure, looks shouldn’t be more important than your health, but hey, ask yourself if this was true why do so many people get cosmetic surgery? Obviously, everyone is going to understand when the child is younger (I’m talking to parents here guys), but trust me, AS A TEEN, I’m telling you it will cause embarrassment, depression, anger, and LOTS of frustration. Then I ask myself -- Is all this REALLY worth it?

I have to say I wasn't at all excited to be getting a scar, but now 5 years later I rather love mine. It makes me unique, and that's what I like about it. Mine is a rather curvy line from my neck to my tailbone (it really is huge!). I use it as conversation-starter, and everyone I talk to is always amazed to see it. Of course at first I was a little self-conscious, but everyone gets past that. For those people who have judged me because of my scar...I just tell them that I was the Terminator in a past-life and I had a scary stint on the top of a building. Laughs laughs...

Learn to love your body and anything that happens to it.

[Ber3188]

Billz... Believe me i know how you feel... I am only 17 years old, I too have a 50 degree curve which recently just progressed to 52 degrees. I actually just got scheduled today for surgery on june 21st. I have NEVER had surgery before in my life. But i have choosen to just because i have chronic back pain due to the scoli, and have been to many chiroprators and drs who dont know what the exact cause to this is... I have tried bracing and it has gotten me no where. Also the fact that I cant wear anything nice fitting, In the middle of june im always wearing a sweater because my back is that noticable. So i know where you are coming from with the things you are afraid of... but i guess for me its the fact that im going to the chicagos childrens hospital and I have a dr who specializes in back and scoliosis. Also i know there is going to be someone monitoring the nerves in my back the ENTIRE surgery to make sure nothing goes wrong. But the only thing that scared me was when my dr (Dr. Sullivan) told me that one out of every 50 people are allergic to the metal they use in the back, and some actually need a secondary sugery.

If anyone has any information about this surgery for me, or especially about Dr. Sullivan and the chicagos Childrens hospital please contact me at Aol at Ber3188

[LindaRacine]

Hi Billz...

I agree. I think it's most difficult to make the decision when the curves are either smaller or larger. Statistically, your curve is likely to return to the original 70 degrees when you discontinue the brace. So, since the brace seems to be holding your curve, it seems to me that you should at least hold off on making the decision until you stop wearing your brace.

Good luck with your decision.

Regards,
Linda

[N.S.]

Dont Worry

Hello I am actually new here but I was in your situation about 10 years ago. I am 22 and when I had my surgery I was 12. Listen, the scar is not that bad, nobody ever made fun of me. People would be curious and ask and I would tell them that I had surgery. Trust me, the scar now a day is far worse then the one I have. At that time they took hip from your bone so I have a large scar on my hip as well. I understand your worry and frustration but the scar is small and most people never even notice it. Also, I do not have any problems lifting anything and I behave the same now then before the surgery. Also, though I cannot twist completly around I have absolutely no mobility limitations whatsoever. I never even no it is there. Well I hope I helped give you some insight from a fellow patient. Just me, if you get the surgery you will be the same person as you are now(except with a straight back).

Good Luck,
N.S.