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momw/scoli
01-13-2009, 03:51 PM
I have posted here before but, always on the bracing section. My daughter had a disappointing appointment today. She is finished growing but, her top curve has progressed to a 50 degree curve. It had been staying right at 38 for over a year and in four months it went to 50. Her bottom curve is still at 38. I am feeling a little overwhelmed. Should she have surgery right away or should we keep waiting? She is very active. She plays basketball and cheers. Will she be able to do that after surgery? What part of her life are we willing to give up while she recovers from surgery? Should I take her for second opinions about having surgery? If he only operates on her top curve what are the chances of needing revision surgery? Her next appointment is in two months. What is best for my daughter? Any advice would be appreciated.

Thanks,
Becky in Texas

Pooka1
01-13-2009, 04:09 PM
The best advice I think is to get a few opinions. Hopefully they will converge on the best course of action going forward.

Surgeons have ways to determine if the smaller curve is structural or compensatory but I'm not sure what they are. The methods are good but not foolproof AFAIK. The surgeons will be able to tell you the chances of needing to extend the fusion in the case of misidentifying a structural curve as being compensatory. I can't recall any cases on this group but I've only been reading for about a year.

Good luck.

Indiana mom
01-13-2009, 04:22 PM
My 16 year-old daughter wore the brace for years but her curve has gotten progressively worse in the year the brace came off. The doctor said from the beginning, when the curve got to 50 degrees he would be talking about surgery. Here her curve is 54 degrees and now he says come back in 4 months for another x-ray. She had an MRI that turned up no anomalies. I don't know if your daughter has had an MRI but that might be a next step. I feel that the timing is right for a second opinion for my daughter. The problem is research highly qualified surgeons and choosing one; but I'm getting close.
Good luck!

violett
01-13-2009, 07:15 PM
Hi I just had the spinal fusion surgery in June. I had 2 curves and I was very active, I ran track. I'm not sure exactly what my degrees were, but I know the larger one was around 49. It does hurt and I have to be lazy for 4 months, but It's worth it. Time matters on these things because degrees can change so rapidly ad the younger you are the quicker you recover. I have not limitations but I have 12 bolts and screws!! Just think about the effects of not having surgery will have on your daughter later on when she's 40. My mother had scoliosis and she didn't take care of it and now she's disabled and she has to take pain pills. I wish you and your daughter the best of luck! I hope this was helpful to you. I recomend Dr. Mark Berry if your in the Las Vegas area.

laurieg6
01-13-2009, 07:38 PM
I would definitely get as many doctors opinions as you need to feel comfortable with whatever decision you make. I don't think the docs plan for a revision with kids. Most of them try to fuse as much/little as necessary for only one surgery and hopefully that's all most kids need. I still sort of hold my breath though at each follow-up appt. (before we get the x-ray results) since my son's surgery 1.5 years ago. So far though, we've had a positive outcome, despite an ongoing need for PT to work on posture and overall strength.

Regarding timing, that's always difficult. Some kids can go back to everything after 6 months, or even sooner.

Good luck with everything,

momw/scoli
01-13-2009, 08:58 PM
Thanks for all your replies. It is nice to know there are so many people out there willing to help others and have been through the same thing. I'd rather her have surgery sooner than later so she can get on with her life. I will keep researching and praying for right decisions.
Thanks,

Becky

Beckymk
01-13-2009, 11:30 PM
I know finding out about surgery is scary. I would get as many opinions as you feel necessary. We basically only got 2 but they both pretty much said the same thing. We didn't find out about my DD's curve until it was 40 degrees. The first guy we went to basically said it was a big curve and she would need surgery then he referred us to Shriner's.

We went to Shriner's and have been comfortable with the doctor there. She was braced for about a year and the curve continued. The weird thing is her bottom curve is now the bigger one of the 2. For us, I can definitely tell more with the curvature than I could a couple years ago.

Timing it for surgery is never easy. We are scheduled for March so she is going to have to miss 4-6 weeks of school but it's just the way it worked out. I know I was told she could go back to cheerleading in the fall (she had been a cheerleader -- I'm assuming not any flipping though? Just the cheers). We were told the only 2 sports you can never go back to are football & gymnastics. My DD is a gymnast but she is getting rather burned out on it anyway, so even without the surgery, this would be her last year of participating. Every doctor is different though in their recommendations. I know our doctor would say she could go back to basketball & cheerleading probably within 6 months if all goes well.

momw/scoli
01-14-2009, 11:35 PM
Becky MK. It sounds like we are about in the same place. My daughter is also 14. She told me last night she is ready for surgery. I called Dr. today to try and set up surgery for early June or late May. Also called a dr. who also treats adults for a second opinion. We will most likely go to her Dr. at Cook Children's in Fort Worth. She has been seeing him since she was 11 and we really like him.
My daughter is also burned out. She is tired of basketball. I think it's because her back is hurting her.She also seems to lack the stamina of the other girls. The school she goes to doesn't allow freshman cheerleaders so that takes care of itself because she will be a freshman next year. The Dr. said she could most likely march with the band in the fall but, no sports for six months. He said after that her only restriction will be sky diving. (duh)
It seems like all I can think about is right now is surgery. I wish us all luck with our waiting, watching, bracing, surgeries and recoveries. What a long process!
Becky

Beckymk
01-15-2009, 11:53 AM
I completely understand. The thoughts of it are a wee bit consuming. I keep thinking once the surgery is actually over then it won't be quite so consuming? I know there is the recovery time but then it's all over and just small follow-ups every so often (I know for us at least 5 years since we are in some studies but I don't know how it goes normally, if after your 1 year post-op, they tell you "you are good to go & we don't need to see you ever again unless there are problems" or if they do a few yearly follow-ups!)

I try not to make it so but lately since ours is scheduled for March 9, it's pretty much taken over my brain. It's always there. We just got a letter yesterday from Shriner's with the information on the pre-admisison date which is a couple weeks before the surgery and then the surgery date. I'm supposed to call tomorrow regarding her blood donations, although I'm thinking I might wait until Tuesday (things are a bit out of whack with the weather and then Monday is a holiday!). Last time I called the number they gave me, I swear it was the doctor's personal cell phone or something. She answered "Hello" and I was expecting it to be an office number. *YIKES* She then told me to call 6-8 weeeks before the surgery for her to write up the order. I just have to triple check the blood donation place exists. They use Lifesource and there is one somewhat near us according to the website but I want to phyically drive there to make sure it really does exist. KWIM? Sometimes web information is not 100% accurate.

I do know that my DD's back has started hurting her more as things have progressed and she can't balance on the balance beam anymore too much. Luckily, in high school for gymnastics you can specialize. Her favorite event is floor, so that is pretty much what she has been doing but she is so ready to be done with the sport. We only have about 2 or 3 more weeks until the season is over as Freshman can't go to state ?? I don't know, she's my oldest so all these weird sports rules are so different than when I was in school (plus I was never a gymnast nor did our HS have a team back then!).

I know for us, my DD is saying she wants to take all sports off and concentrate on drama more & music. She is in choir and loves it, so I'm not really worried about sports restrictions. She did cheer at school but didn't care for that too much so I doubt she will go back even when she can, it takes up way too much time and she'd rather be able to do the plays and things.

We could have done the surgery in Jan. but there were finals which are this week. Then I have 3 younger boys and 1 of them has a choir concert in Feb. so I wanted to be able to attend that. There is a black light dance in HS that DD really wants to go to. Unfortunately, the surgery schedule ended up being the day before her birtdhay but I didn't want to push it off any more as that seemed like a good week without much going on between all the kids. Then spring break is about 2 weeks after her surgery so gives her a little less missing school time in there.

Susie*Bee
01-15-2009, 12:42 PM
Hi Beckymk! I haven't followed all your posts but have read some of them. Prior to my surgery (in Chicago) I was told I could donate my blood at either Lifesource or through Red Cross. When I checked, Lifesource was in Illinois but not Indiana so I didn't pursue that option, but went with Red Cross-- still an hour's drive for me. Anyway, at least I've heard of it. ;)

If you want me to, I will add your DD's surgery to the Jan/Feb/March surgeries thread in the adult surgery section. Just post there or send me a PM with what you'd like.

Best wishes to all you Moms with your busy lives and special concerns-- and upcoming surgeries for some of your children.

Indiana mom
02-09-2009, 07:00 PM
I was at the same crossroads a few weeks ago. My 16 year-old daughter's curve had progressed to 57 degrees though amazingly she is pain free. From the beginning, her doctor had always said that when her curve got to 50 degrees, he would talk to me about surgery; but 50 degrees came and went. His recommendation continued to be wait and see and to come back in 4-6 months for another x-ray. She had an MRI which was normal. From all I had read, I instinctively felt that this was not the right course of action as my daughter's curve has gotten progressively worse since the brace came off. I proceeded to get a second and a third opinion from highly recommended surgeons. Problem is that I got two different surgical plan recommendations! In my discussions with various physicians I know, they all told me to go with my intuition. I discussed the plans with my daughter and together we agreed on the surgeon she wanted. She feels very comfortable about her choice. Her surgery will be scheduled for the first week of June. My other consideration was the timing of the surgery. If she was going to have it, this summer between her junior and senior year would be ideal, allowing her time to heal over the summer. Now that we have made the decision to have surgery, I'm on to the next phase of learning about how to deal with the pre-surgery, surgery, and post-surgery phases. I'm looking forward to reading about the experiences posted here as it helps! Thank you to everyone for sharing your experiences. I will share, too, if I feel that I can make a contribution.

WNCmom
02-09-2009, 07:53 PM
Congratulations on a thoughtful and informed decision. I'm sorry surgery is necessary, but both you and your daughter sound ready. You'll find lots of info on this forum--I don't know how I would have gotten through my son's fusion 3 months ago without all the people who had posted thier experiences. Because of them I knew what to ask, what to ask for, and what to expect.

Mary Ellen

txmarinemom
02-09-2009, 09:40 PM
... My daughter had a disappointing appointment today. She is finished growing but, her top curve has progressed to a 50 degree curve. It had been staying right at 38 for over a year and in four months it went to 50. Her bottom curve is still at 38.


Becky, it isn't uncommon for a significant compensatory curve to develop that balances out a larger, structural curve. Structural vs. compensatory determination is most often made with an opposite bending test. Structural curves do not typically demonstrate significant straightening on opposite bending, while compensatory curves commonly do - and sometimes disappear completely. Remember, the only reason a compensatory curve exists is because a structural one does. While there is such a thing as "double structural" curvature, far more common is a structural curve with at least one compensatory.



... Should she have surgery right away or should we keep waiting? She is very active. She plays basketball and cheers. Will she be able to do that after surgery?


Bear in mind, surgery at 50 (and I use "" due to the 5 margin of error in Cobb measurements) is NOT an emergency decision you have to make right now. Get other opinions, and gather all the facts you can. If you can manage to travel to Fort Worth, you should also consider scheduling a consult for her at TSRH (Dallas) and/or Shriners (Houston). Give yourself extra peace of mind by finding SRS surgeons (www.srs.org/find).

If you do eventually decide on surgery, it's not something you just plan on a whim: It takes coordinating everyone's schedule to make things work.

There's no reason she can't play basketball and cheer if she wants to after surgery and recovery. I'm 40 and just passed my one year anniversary: I've been back playing sports for several months now. My doctor hasn't told me there's anything I can't do if I choose to - not even skydiving (which is still on my list! ;-).


... Should I take her for second opinions about having surgery? If he only operates on her top curve what are the chances of needing revision surgery? Her next appointment is in two months. What is best for my daughter?

Second, third, fourth opinions? Yes. Or however many it takes to get a general concensus that makes you comfortable.

There's no way to know if she'll need a revision, but plenty of people here (including me) have ONLY their structural curves corrected. It would be very unusual for a surgeon to even suggest fusing a compensatory curve. Usually, when the structural curve is corrected, the compensatory curve(s) corrects without intervention.

The only way a true compensatory curve might continue to progress after the structural is fused is if a surgeon doesn't fuse ALL vertebra in the STRUCTURAL curve. This can result in a scenario referred to as "decompensation", and again, it's RARE if a surgeon includes all structurally involved vertebra in the fusion.

Two months seems like a long time away, but it's really not in the big scheme. No one can tell you what's best for your daughter, but other opinions with surgeons who specialize in cases like your daughter's can give you the knowledge to decide.

Regards,
Pam

momw/scoli
02-09-2009, 11:36 PM
Dear Pam,

Thank you for your wonderful reply. My daughter had her last basketball game as an 8th grader tonight and was in tears after the game because she was wondering if she would ever play again. I showed her your reply and I hope it is sinking in there will be life after surgery. You look great by the way!
Thanks also for explaining the compensatory curve. I never really understood
what that meant because for a long time her curves were about the same. She hasn't had bending xrays yet. We will probably get them in March.
I love her Dr. at Cooks in Fort Worth, but she is having a second opinion at Baylor Scoliosis with Dr. Hostin. If they don't agree, I will try Scottish Rite. I'm not sure how long it takes to get in there. I am also getting my scoliosis checked at Baylor. I am 41 and the last time I had an orthopedic Dr. look at my xrays I was 23. I've had 3 kids and I'm hoping I still have two 30ish degree curves.
Thanks for helping so many people!

Becky

txmarinemom
02-10-2009, 02:27 AM
You must go to clearinstitute.com web site!!!!! My daughter(17) has done their therapy for around 8 months now she went from 32/36 daily pain and various deformities..hip out..hump on back... to 20/20 virtually no pain and deformities slowly going away. This is the answer we all have been looking for. The mistake we all made was WAITING......the smaller the curves the easier to fix NATURALLY. Go to the doctor finder type i n your zip... YOU MUST find one with the intensive training. We went to Dr. Dovorany in Wisconsin..two weeks intensive treatment(that got her to 20/20....) He is amazing !! this therapy is a god send...PLEASE look into it !!!


Oh, please.

Becky, stick to science and don't let the fluff cloud your vision. There's plenty to be said about CLEAR (little of it postive) if you search these forums. General opinion is it's snake oil. Usually these people that jump in and praise the method are plants. (Really ... how many "MUST"'s and exclamation points can one put in a post?)

You're in no hurry. Explore all your options. Any advocate that pushes you is probably self-serving.

Hang in there.

Pam

Pooka1
02-11-2009, 07:10 AM
Originally Posted by hope404...

You must go to clearinstitute.com web site!!!!! My daughter(17) has done their therapy for around 8 months now she went from 32/36 daily pain and various deformities..hip out..hump on back... to 20/20 virtually no pain and deformities slowly going away. This is the answer we all have been looking for. The mistake we all made was WAITING......the smaller the curves the easier to fix NATURALLY. Go to the doctor finder type i n your zip... YOU MUST find one with the intensive training. We went to Dr. Dovorany in Wisconsin..two weeks intensive treatment(that got her to 20/20....) He is amazing !! this therapy is a god send...PLEASE look into it !!!


If the Clear Institute is doing science, why do they make so many quacky claims? Why don't they publish their results in the refereed literature? Why do they appear to be a shoo-in for quack of the month over at Quackwatch?

Were your daughter's radiographs read by an orthopedic surgeon or a lay fitness coach?