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rosa.smm
09-14-2010, 02:57 PM
Hello:
I am new to the forum and have appreciated all the information on the site.

Our 19 year old daughter Kristen is now scheduled for surgery April 2011. She was diagnosed at 13 (congenital, 24 and 26 degree curves) original surgeon xrayed every 6 monthes and said there was no change and surgery wouldn't do anything for her. When Kristen moved away to University las year she saw a new doctor and it was "Oh My God, Why Has Nothing been done!!!). Her curves were now 60 and 70 and she is in really bad pain. New surgeon thought the surgery may be way to tricky, but has now decided on an approach going form the back and front, fusing and rods from C2 to L4 (or close to that).

I am looking at trying to decide if the surgery will help her pain, if it will get her more mobile, add or diminish quality of life?
Also trying to figure out how long her recovery may be. When should she go back to university? What kind of class load she should work with and when? How mobile will she be and when?

ANY Infromation from families who have been here would be great.

Thanks,
Kristen's MOM

ddb
09-14-2010, 09:43 PM
Hi Kristen's Mom - My DD just turned 20 - she is scheduled for surgery 11/9/10T-3 -> L-3. She is also in college, but taking online classes this semister due to surgery. She expects to be able to be able to return to a few classes in Jan'11. Surgeon agrees with her plans. She is in a local school so this will work well for her at 6 weeks out. She will return to normal full schedule next fall -she will be transferring so will have further to travel.

My younger DD has surgery in Feb and returned to school in 6 weeks. She had BLT restrictions until her 6 month check.

Dee

Pooka1
09-14-2010, 10:07 PM
Hi. I am sorry to hear about your daughter's curves. I have a few responses below based on my experience with my daughters' fusions.


Hello:
I am new to the forum and have appreciated all the information on the site.

Our 19 year old daughter Kristen is now scheduled for surgery April 2011. She was diagnosed at 13 (congenital, 24 and 26 degree curves)

This is the first testimonial I have read where there was a congenital double major curve. Usually it's just one malformed vertebrae and there is one curve as far as I can tell. So your daughter has two malformed vertebra to produce two curves I guess.


original surgeon xrayed every 6 monthes and said there was no change and surgery wouldn't do anything for her. When Kristen moved away to University las year she saw a new doctor and it was "Oh My God, Why Has Nothing been done!!!). Her curves were now 60 and 70 and she is in really bad pain. New surgeon thought the surgery may be way to tricky, but has now decided on an approach going form the back and front, fusing and rods

How long was it after her last set of radiographs (at maturity?) and the set where the curves were so large? Was it at least 3 or 4 years? Isn't it possible the curve just continued to progress in-between?


from C2 to L4 (or close to that).

That is almost her entire spine leaving only one unfused vertebrae in her neck. Did you mean T2 to L4?


I am looking at trying to decide if the surgery will help her pain, if it will get her more mobile, add or diminish quality of life?
Also trying to figure out how long her recovery may be. When should she go back to university? What kind of class load she should work with and when? How mobile will she be and when?

ANY Infromation from families who have been here would be great.

Thanks,
Kristen's MOM

I think only a surgeon can answer some of those questions. In general, your daughter is still young and I would predict she would have a recovery like many of the teenagers (i.e., relatively fast).

As for reasons for fusion, ask the surgeon about the need to halt any more progression and the ability to reduce the curves a lot. I am guessing those would be the main reasons for fusion along with hopefully reducing the pain.

Good luck. And please consider getting a few opinions if you aren't comfortable with the one you have.

rosa.smm
09-15-2010, 10:35 AM
Thanks for the replies.

You are right (It was not C2 it was T2)
Her first curve is 71 between T2 and T6 (multilevel narrowing on the right side) the next is a compensatory curve 68 between T6 and L4. She's healthy otherwise, but getting to be in a lot of pain daily. That is our biggest goal to hopefully stop that.

The first surgeon followed her a year past when she stopped growing, so from about 12 or 13 to 16. She saw the new surgeon one year later and had not grown, so I am not sure how the cruves changed so much!

The surgeon has said 10 days in the hospital; two to 4 weeks in the city after the surgery (we don't live in the same city as the surgeon), 3 months to return to so activities and 6 months to a year before full activities.

I think the online classes sound like a good idea and I will look into that. It's just hard to know what to plan for a year, when you are not certain how she is going to be feeling.

Now if I can get Kristen to stop living in denial a start planning her year as well. She does not like anything doctor related and faints when she has to get the flu shot. This could be interesting?!

Thanks for the inputs. I am sure I will have more questions the more I think about it.

Kristen's MOM

ddb
09-15-2010, 02:56 PM
Funny that denial thing - This had to settle in with both my girls. The oldest, diag. first - denied there was anything wrong with her back. Youngest was followed for 9 mos - told she was at spinal maturity and curves would not progress - then refered to a specialist when they did. Sure wish I had this forum then - I would have been much more informed. When she went from don't worry your curves won't get worst to you need spinal surgery she needed time to absorb. She had surgery a year after that.

My oldest came to me and said she thought she should see the Dr about her back when she started having spasms (3 yrs after diagonsis)- she is now in the surgical range and is scheduled for Nov.

Niether of my girls progressed fast, so there was time for them to get on board with what was going to happen to their bodies. This is a big surgery - the pt. has to be ready as they can be. Sometimes talking to others who have gone though this can help - Our Dr. gave us contact info for kids who went through the surgery that didn't mind talking with those facing the unknown. Maybe something like that could help your DD perpare mentally for this challenge.

Best Wishes
Dee

rosa.smm
09-15-2010, 10:46 PM
Dee

I think the talking to other pts is a good idea. I just hope I can get Kristen to talk to some one an not be to afraid to listen. Her and her dad will both pass out if they see any of the stuff required for the surgery or read up on any of it.

Hopefully the months we have will be enough to get her onboard and not terrified.

How are your girls doing

Kristen's MOM

Fingers Crossed
09-16-2010, 09:15 AM
Hello:

Welcome to this forum. You will learn a lot and hopefully find great support here, too.

I have two daughters and the youngest had fusion surgery this past summer. I have always, in the back of my mind, felt "fortunate" that of the two, she is the one who had to have this major surgery because she is pretty calm (always has been) about medical stuff. My older daughter is the opposite, VERY frightened of needles, etc., and I can just imagine how difficult this is going to be for you and your daughter. My older daughter was scheduled for a relatively minor dental procedure this summer and had a full-fledged panic attack, and could not get through it. Soon afterward was my younger daughter's surgery and I haven't even broached the dental surgery with older daughter, again. (It was THAT bad! Made even worse because I just about lost it. Bad "mom day" to say the least.).

I wonder if some counseling would help, and whether your surgeon could recommend a course of action. Also, I think it might be unfortunate that your daughter is probably not going to a children's hospital, since she is 19, because everyone at our hospital was just so great . . . they really knew how to deal with adolescents . . . they were honest, straightforward yet also comforting.

I should also tell you that my daughter who had spine surgery is doing REALLY well. She is about 12 weeks out and runs on the cross country team, goes to school and sits all day without complaint, and other than becoming somewhat fatigued at times, has had an amazing recovery. I worried myself almost sick before her surgery, so really feel compelled to share this with everyone. Her only restrictions now are not lifting more than 15 pounds and no contact sports.

Good luck!

Pooka1
09-16-2010, 09:22 AM
Thanks for the replies.

You are right (It was not C2 it was T2)
Her first curve is 71 between T2 and T6 (multilevel narrowing on the right side) the next is a compensatory curve 68 between T6 and L4. She's healthy otherwise, but getting to be in a lot of pain daily. That is our biggest goal to hopefully stop that.

Wow that is a LONG compensatory curve! I assume they will only be fusing the structural curve between T2 and T6, yes? If so that will be a 6 level fusion which is the shortest I have seen in a testimonial for a thoracic curve. She may recover very quickly though you mentioned they were doing the anterior and posterior procedures. Both my daughters had 10 level T fusions done posteriorly so that's what I can speak about and just in their cases.


The first surgeon followed her a year past when she stopped growing, so from about 12 or 13 to 16. She saw the new surgeon one year later and had not grown, so I am not sure how the cruves changed so much!

You say she had mid-twenties curves at diagnosis at 13 but what were the measurements when she was 16? Did the curves progress at all during the observation window between 13 and 16 yo?

If they were the same then in the three years after skeletal maturity, her curves progressed 36* (T) and 44* (lower compensatory), yes? That is an average of 12* (T) and ~14* (lower compensatory) per year which does seem high for a skeletally mature person. That said, I think congenital scoliosis might not follow the average progression rates for idiopathic. Your surgeon will know this.

Also, you might want to get those radiographs from when she was 16... they may not have been measured correctly.


Now if I can get Kristen to stop living in denial a start planning her year as well. She does not like anything doctor related and faints when she has to get the flu shot. This could be interesting?!

Well, for both my daughters, there was no choice. They would likely be dead without the surgery. So denial never came into play. I think the surgeon would be able to put the situation in perspective for your daughter. And she can always get more opinions. If the opinions converge then I doubt she will be in denial.

Good luck.

rosa.smm
09-16-2010, 09:45 AM
They are going to fuse the compensatory curve as well as that is affecting her kidneys. The surgeon thinks it will be one of her longest surgerys in time and length of fusion. And as I said it is supposed to be from the front and back. I think we will get more info at next appointment.

Kristens curves were both under 30 from diagnosis to maturity (according to the one dr and the physios). They said they never changed from 13 to 16. Then at 17 they were 71 and 68 and have now been there for a year.

Something seems out of wack.

Anyway the surgery is not really a choice as it is affecting her kidneys, lungs and her pain level. Not having a choice doesn't mean a teenage girl has to admit to herself that next summer she is not getting a job and having surgery instead!

We will just keep working on her.

How are your girls doing?
Kristen's Mom

Pooka1
09-16-2010, 09:59 AM
They are going to fuse the compensatory curve as well as that is affecting her kidneys. The surgeon thinks it will be one of her longest surgerys in time and length of fusion. And as I said it is supposed to be from the front and back. I think we will get more info at next appointment.

I would get a second opinion on fusing a compensatory curve for sure. This isn't my field and I can only dimly recall one testimonial where they were going to fuse a compensatory curve and that was strange. It is my understanding that compensatory curves, especially ones below a structural one, correct on the table once the structural curve is corrected. Indeed my one daughter's compensatory curve is almost completely gone and the other has a small residual compensatory curve. So fusing the T curve drove the lumbar almost straight.


Kristens curves were both under 30 from diagnosis to maturity (according to the one dr and the physios). They said they never changed from 13 to 16. Then at 17 they were 71 and 68 and have now been there for a year.

Something seems out of wack.

I agree. Some questions I have:

1. was the doctor an experienced pediatric orthopedic surgeon with a lot of experience with scoliosis?

2. I hope Linda comments but I don't think I have ever read anywhere of that much progression in a year but all bets might be off when it comes to congenital scoliosis.


Anyway the surgery is not really a choice as it is affecting her kidneys, lungs and her pain level. Not having a choice doesn't mean a teenage girl has to admit to herself that next summer she is not getting a job and having surgery instead!

We will just keep working on her.

I can see that point. We just never dealt with that with our two girls so I can't speak to it.


How are your girls doing?

They look and feel normal. One was fused in March of 2008 and the other was fused in October of 2009. They returned to school full time at 3 and ~3.5 weeks and have moved forward ever since then. Scoliosis is off their plate forever according to our surgeon.

The surgeon not only saved their lives but saved their teenage years. The first of course is the name of the game for me but the second is what matters on a day to day basis for my daughters and I don't fault them for it.

Good luck with your daughter.

rosa.smm
09-16-2010, 01:15 PM
We are getting more opinion's as the doctor is taking the X-rays to a international scoliosis meeting. So I think she wants to confirm the approach she will take with the surgery. More opinions the better I say.

The first surgeon has a good reputation, but I think does much less pediatric scoliosis stuff. This second dr., this is her specialty. I have to say I think it did progress tho' after maturity, and fairly quickly, enough to make us want a second opinion just by looking.

I am glad to hear your girls are doing good. It is very encouraging! Its funny to believe right now that we will get through this and that it won't consume so much of my thoughts at some point.

Kristen's MOM

Pooka1
09-16-2010, 02:31 PM
Its funny to believe right now that we will get through this and that it won't consume so much of my thoughts at some point.


You will get through this and move past it.

My one daughter will have her last check up with the surgeon around Thanksgiving and then she will be released. The other kid will likely be released next June.

We have already moved on individually and as a family. We went to the medical well and drank and will leave. If we need to return at some future date then the medical approaches will be even better. We are coasting into the future now, unburdened by this scoliosis business.

You will too.

Pooka1
09-16-2010, 03:08 PM
Kristens curves were both under 30 from diagnosis to maturity (according to the one dr and the physios). They said they never changed from 13 to 16. Then at 17 they were 71 and 68 and have now been there for a year.


I missed this the first time.

So between 17 and 19 (now) the curves didn't progress? All the progress was between 16 and 17?

rosa.smm
09-16-2010, 04:07 PM
Thats what they are telling us. She has been with the new doctor for one year. Diagnosed at the start as 71 and 68. Through her three follow ups (one year now) she is still 71 and 68.

When she started at the new dr. she was upset that no work up had been done on heart lung kidneys ....no MRI which is apparently common problems with her type. Fortunately all was fine except that the curve was so bad and things are getting squished.

Kristen's MOM

Pooka1
09-16-2010, 04:31 PM
Thats what they are telling us. She has been with the new doctor for one year. Diagnosed at the start as 71 and 68. Through her three follow ups (one year now) she is still 71 and 68.

When she started at the new dr. she was upset that no work up had been done on heart lung kidneys ....no MRI which is apparently common problems with her type. Fortunately all was fine except that the curve was so bad and things are getting squished.

Kristen's MOM

Have you seen all these radiographs?

This is the most unusual testimonial I have ever read due not only the claim that the curves were stable in the mid-twenties from 12/13 to 16 yo, both curves moved about 45* in one year, and they stabilized for about 2 years, but also to the surgeon wanting to fuse a compensatory curve (and a huge one at that).

How did they determine the lower curve was compensatory given is is as large as the upper curve?

If it were me, I would get many more opinions from experienced orthopedic surgeons specializing in scoliosis. And I would get every radiograph ever taken of your daughter and bring them all to each consult. I would need at least 3-4 guys PROVING to me with other case histories that it was necessary to fuse this compensatory curve before I would ever agree to let it happen.

good luck

rosa.smm
09-20-2010, 10:53 AM
I think you make a great point about getting copies of all the xrays. We did see each individual one as it was done, but don't have a comprehensive set. I think I am going to get copies and check with our family doctor as a contact between all the surgeons?

We will definitely confirm where the spine will be worked on and ask a lot of questions.

Thanks for your input. Sometimes you just take what you are told at face value and assume they must know what they are talking about. Plus we were so blindsided after being told for years that nothing needed to be done.

AT least I have a lot of questions now. I will let you know if we get any answers.

Kristen's MOM

Pooka1
09-20-2010, 11:13 AM
I think you make a great point about getting copies of all the xrays. We did see each individual one as it was done, but don't have a comprehensive set. I think I am going to get copies and check with our family doctor as a contact between all the surgeons?

That's a thought but frankly, family doctors don't know much about orthopedic issues like this. I think you should handle and hold the radiographs and keep notes about what each orthopedic surgeon says about them. You can do this. You know more about your daughter's condition at this point than any GP.


We will definitely confirm where the spine will be worked on and ask a lot of questions.

Yes the most important one being whether the lower curve is in fact compensatory and if it is, needing a very good reason supported by SEVERAL similar case studies showing it needs to be fused in order to avoid future surgeries.


Thanks for your input. Sometimes you just take what you are told at face value and assume they must know what they are talking about. Plus we were so blindsided after being told for years that nothing needed to be done.

AT least I have a lot of questions now. I will let you know if we get any answers.


I understand completely. This is daunting. But you can come up to speed on many things associated with your daughter's case which you must do to help advocate for her. And you can certainly get a few opinons and see where they agree and disagree (this is likely) until you come to some consensus and understanding on how best to proceed. Your daughter's case is very unusual at least compared to the testimonials I have read over the last several years so I think you need to nail this and get the straight dope on all key matters. My daughters had fairly common curves and surgeries so the learning curve wasn't too steep for me.

Just my opinion. As always, good luck.