A Poll: Over 5 years, 10 years, 15 years post op- How are you?

[Lkershner]

A brief background- Our daughter, Madisyn, (age 10) was just diagnosed with scoliosis. We are waiting to meet with the surgeon in a few weeks after her MRI results come back. Primary surgeon- Siambanes at St. Joe's tampa. We met with his partner that doesn't perform the scoliosis operation. He stated she's over 50 degrees and she will need surgery. I have no clue Thorasic, Lumbar, nothing. But I know it's a big S. We were in shock and unprepared as we knew absolutely NOTHING going in.
We will see two other surgeons. 1. Neustadt at All childrens in St. Pete and 2. (if we can get in) Shriners in Tampa

I don't know her risser but she's not hit puberty and has at LEAST 10-12 more inches to grow, easily (Mom and dad are both 5'10 she's not even 5' yet)

We're concerned and need to know how this will change her life in the long run.

So, please help me with a poll and tell us-
1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op)
2. Are you in pain?
3. Were you in pain before the surgery?
4. Have you had normal relations with others?
5. Do you feel any part of your childhood was stolen?
6. Did the surgery improve your life?
7. Did you have any complications?
8. If you had the option to go back- would you do it again?

Is there anything else you'd like to share?

I appreciate all of your thoughts and efforts in advance

Madisyn's Mom

[texfinn]

I dont have surgical experience but wanted to tell you that my 9 year old was diagnosed less than 2 months ago. Push the shriners option and reach out to Dr Betz at the Shriners in Philadelphia. I have done a ton of research and Shriners seems to be the best with kids. We will go to Shriners in Houston first and then make an appointment with dr betz in Philadelphia.

Don't panic, she will be ok. I know it is scary and devastating but things do settle down after a plan is set.

I will keep you and Madisyn in my prayers.

[Sherie]

Texfinn

Another option for you would be Texas Scottish Rite in Dallas. They're awesome and services are free of charge just like Shriners. I took my daughter there for a consult and really liked the hospital and staff. Ultimately, did not have the surgery there but they were at the top of our list.

Best wishes.

[Sherie]

[B]

So, please help me with a poll and tell us-
1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op)
*I'm responding for my daughter and she's 3.5 years post at this time and doing very well.
2. Are you in pain?
*No, she doesn't have much pain.
3. Were you in pain before the surgery?
*Yes, she was in a lot of discomfort prior to surgery, especially in the lumbar area where her major curve was.
4. Have you had normal relations with others?
*She's 18, soon to be 19. I wouldn't say she's like a typical teenager (partying, shopping, etc) but she never was. She likes to read, study history, draw and she's a complete homebody but I guess that's normal for her :-)
5. Do you feel any part of your childhood was stolen?
*My dd was 12 when diagnosed. Her curves progressed over the next 3 years. We tried many different therapies and braces but nothing worked to stop or slow down the progression. So, yes, all the doctors visits and therapies did interfere with her carrying on with a normal life but it wasn't so bad that it has left lasting scars. I think she's a stronger person for what she's been through, I'm sure most people on here would attest to that.
6. Did the surgery improve your life?
*Yes, surgery has improved her quality of life. She's able to go all day without being fatigued and in pain.
7. Did you have any complications?
*No major complications, a possible hematoma at the site of the drainage tubes that caused her quite a lot of pain for some time but that resolved eventually and I don't think that's common anyways.
8. If you had the option to go back- would you do it again?
*Yes, for her and myself.

Is there anything else you'd like to share?
I think your greatest concern is the growth factor, I would be concerned too. There are several cases on here of kids who've had crankshafting after surgery because of spinal growth. This is probably the thing you really need to get answers to.
Otherwise, kids your dd's age usually do very well after surgery, they bounce back quickly.

I appreciate all of your thoughts and efforts in advance

Madisyn's Mom

Take care!

[Lkershner]

Thank you

Thank you so much for your kind words and thoughts.
This forum gives hope and a sympathertic ear.

It is so good to hear your daughter is leading a "normal" teenage life! (are any teenagers actually normal? I'm sure we all think they have their quarks)

But sincerely, I really do thank you for your opinions and responses. I hope to hear many more from others.

We have our first follow-up with MRI results Thursday, then a second opinion at Shriners next week.
I'm biting my nails already. Crankshafting happens to be #1 on my concern list.

[arairdon]

fusion

I am hoping others will add to this thread.

It looks like fusion is in my daughter's future. Most likely T-4 to L-4. Would like to hear more about how people are doing who had fusion as a teen (especially that goes to L-4). My daughter loves to dance.

Ann

[Pooka1]

I just want to suggest that it is important to compare the answers to this polls to the answers not only from fused patients but also from untreated patients, especially 10 yo girls with curves >50. You might need to correct for if they are still alive. For example, I do not think my daughters would necessarily be alive now absent their surgery. It's important to capture those data when evaluating surgery.

So there are essentially three groups:

1. untreated large (i.e., surgical) curves
2. fused curves
3. normal

The (tacit) comparison we so commonly see is made is between #2 and #3 but that really isn't relevant. The only relevant comparison is between #1 and #2 because normal is off the table at that point. It becomes a game of cutting losses. The reason surgey is recommended is that the situation for many kids is that #2 appears to be FAR superior to #1. So superior that it outweighs even the (small) surgical risk. Otherwise it wouldn't be recommended. And yes there is only a bit of data for the out years on surgery. There is some data on the out years for untreated large curves. But like my daughters, you have to actually survive in the short term to even have a chance at any out years.

Good luck to everyone.

[LindaRacine]

I am hoping others will add to this thread.

It looks like fusion is in my daughter's future. Most likely T-4 to L-4. Would like to hear more about how people are doing who had fusion as a teen (especially that goes to L-4). My daughter loves to dance.

Ann

Stopping a fusion at L4 is pretty unusual these days, so you may have some difficulty finding someone.

Best of luck.

--Linda

[Pooka1]

Stopping a fusion at L4 is pretty unusual these days, so you may have some difficulty finding someone.

Best of luck.

--Linda

I can only think of three cases of a kid being fused to L4 on the group since I started reading in early 2008. One is an active poster so maybe she will see it.

[Karen Ocker]

Poll

So, please help me with a poll and tell us-
1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op) My first surgery was in 1956(old fashioned technique) I was 14. We tried CHiro but I think it made it worse. I became an RN and later a nurse-anesthetist. Revision in 2002 at age 60.
2. Are you in pain? Very bad pain at age 14~ 100deg triple curve/At age 60 pain woke me up at night. I am totally pain free- now 9 years post op. Worked until age 68
3. Were you in pain before the surgery? See above
4. Have you had normal relations with others? Totally
5. Do you feel any part of your childhood was stolen? In 1956 I was not allowed to walk for 1 year. Nowdays child walks right away. Failure to correct a visible curve effects child's self esteem. My mom delayed my surgery and I got worse/more deformed.this resulted in less correction.
6. Did the surgery improve your life? 100% both times.
7. Did you have any complications? no
8. If you had the option to go back- would you do it again? Of course. A significantly curved spine is NOT healthy and progresses permanently without surgery.

[les130]

I was diagnosed with congenital scoliosis at age 7. I was fused at that time (L4-L2) - bone graft, no hardware, casted for 4 months. I lived relatively pain free until about age 23. My curve was about 70 degrees when they operated.

1. How many years post op are you? My first surgery was in 1993 when I was 7. My next surgery is Monday.
2. Are you in pain? Yes. This is my main motivation for more surgery, as my fusion has not progressed and is stable.
3. Were you in pain before the surgery? Before my original 1993 fusion, no. As a 26 year old right now, yes.
4. Have you had normal relations with others? Definitely.
5. Do you feel any part of your childhood was stolen? If anything, the opposite. Getting homebound lessons from school and hanging out with my parents was AWESOME. I already suffer from "only child syndrome" and so this probably added to my spoiled ways. Seriously, though...I do have self esteem issues regarding my short torso, because I was fused so young. I'm 4'11. I should probably be around 5'4, 5'5. I cover it well by how I dress, but it's something I've never really talked about with anyone because of how painful it is. I hate my body - not because of my curvy spine, but because of how disproportionate I look. Others notice, and it is uncomfortable for me.
6. Did the surgery improve your life? Of course. It would have progressed and I don't like to think about what would have happened.
7. Did you have any complications? Nope. Like I said, I started developing pain about 3 years ago... and on Monday i"ll be fused T5-sacrum with pelvic fixation.
8. If you had the option to go back- would you do it again? Sure. Kids are so resilient. As an adult, I'm terrified.

My doctors (and I read similar things) always told me that I'd probably live a normal life, and my back wouldn't be much of an issue. They were wrong. Prepare yourself for that. Not saying it will happen the way it did for me, but it could. Obviously I had to be treated and I'm not sure anything could be done differently. I am who I am through all of this, though, and I wouldn't change much.

Lindsay

[arairdon]

fusion

Thank you everyone for taking time to post your stories. Still hoping to hear from someone that has been fused to L-4 and whether they were able to dance and ride horses.

Ann R.

[les130]

L4 to what? I was originally fused L2-L4 and am currently L1-L4.

Lindsay

Edited: Ah, I see, T4-L4. Well, I can tell you that I didn't notice that I lost any mobility because I was fused so young. I was able to do absolutely everything I wanted to do without any problems. I did gymnastics, ballet, etc. I'm not sure if my situation helps you at all, but since most mobility occurs in the lumbar spine, maybe what I'm saying is applicable.

[Lorraine 1966]

1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op) 45 years post op
2. Are you in pain? only for the past 13 years
3. Were you in pain before the surgery? No not really only like a bit down my right side
4. Have you had normal relations with others? absolutely
5. Do you feel any part of your childhood was stolen? definately not
6. Did the surgery improve your life? totally
7. Did you have any complications? No only had to have a blood transfusion
8. If you had the option to go back- would you do it again? most definately, I have had a normal life have danced and danced never rode a horse because I did not have one, I have had a normal life totally normal truly.


All the best
Lorraine

[AndreaM]

1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op)
32 years
2. Are you in pain?
Yes, both from an unconnected health problem and scar tissue around the base of my spine from the surgery.
3. Were you in pain before the surgery?
Only slight discomfort sitting and walking.
4. Have you had normal relations with others?
Yes - totally.
5. Do you feel any part of your childhood was stolen?
No, I was 15 when diagnosed but still kept very active.
6. Did the surgery improve your life?
Yes, most definitely. It improved my shape and allowed me to wear fashionable clothes.
7. Did you have any complications?
Yes, the rod loosened several months later and had to be removed, however, this was my fault as I crashed my motorbike! Also, the scar tissue issue was never able to be resolved despite further surgery to remove it and I had to remain permanently on NSAIDs (anti-inflammatory meds).
8. If you had the option to go back- would you do it again?
Absolutely! (Apart from riding a motorbike months after having it done). It was by far the better option of the two.