Posted on 11/02/2009 6:09:28 PM PST by autumnraine
My 13 year old daughter has spina bifida occulta (holes in the bone) in several vertebrae and has had lordosis all her life. It has never been to the degree of needing surgery, although we were warned the teen years would be tricky with puberty and growth spurts.
Today she went for her annual xray screening because she has had problems with her legs going numb if she sits in one position too long and also constipation. (She'd kill me if she knew I was posting this on the web!)
Anyway, after the xrays were taken, I asked to see them to see if there was any visible changes in the degree that her spine curved inward in the lumbar region. I thought I was looking at the side view at a glance and then realized I was looking at the full back xray. The poor girl has not just obvious Scoliosis, but I fear severe! This is coupled with the lordosis (lower back inward curve) and kyphosis (upper back outward or hunchback) of her shoulder area.
We are fearing the ever dreaded steel rod surgery and was wondering if any Freepers have had to have this done or a child with this condition. The pediatrician is sending us to an orthopedic hospital a few hours away for consult, but don't even know what to expect.
Anyway, just afraid for my daughter and you guys have always been so supportive.
Prayers for your daughter and your family.
Not sure exactly yet, will know more tomorrow.
I’m a little taken aback by people who think I am not going to take my kid to a doctor and simply just rely on you Freepers!
Is this normal? I just wanted some information because sometimes we feel rushed in doctors offices and just some questions I might need to ask or something.
Wow.
Since your a freeper, your smart enough to know that you should get a couple of good consults at busy academic centers or a well respected private clinic before you proceed with what is a major operation.
the following is pretty general on purpose because I just want to give you things to think about and not put any additional worries in your head.
with scoliosis one of the quantitative measures used to see how severe the disease is the Cobb angle and that denotes a measure of the severity of vertebral displacement.
the reason thats important is that the severity correlates with the side effects of abnormal curvature...one of which is potential respiratory dysfunction, among others.
so ... when you go to the consultant surgeon, ask and get a good fix on where your loved one is in terms of the severity of scolisis and how fast its changing. This will give you a better grasp of potential problems down the line and how much your hand is pushed toward surgery.
with that settled, then you ask the surgeon and make sure you get good answers about the number of surgeries performed, complication rate and hopefully the existence of a pediatric acute pain service. often , at the end of scoliosis surgery but still under gen anesthesia, the surgeon can put an epidural catheter under direct vision and this can be used for superb pain control post op.
I hope this helps get you started and wish you the best.
Now THIS is what I needed. Thank you SO MUCH!! I just had no idea what to ask about, what to look for, and the pain issue was a concern as well. Thank you thank you thank you.
I have searched online and either find just illustrations of what it looks like, or complicated medical journals.
That pain catheter is superb information.
Excellent post! Thank you on behalf of those who didn’t ask or ask the right question(s) but need the right answers.
My advice is to do what you are doing now—ask questions. Doesn’t matter who you ask. One need not be an orthopedic surgeon to give you an insight as to what to expect.
:-)
I can see your situation completely. You are just overwhelmed just now. My advice is to Google “university centers spinal alignment pediatric” and check what comes up. I believe you’ll find a large number of excellent CENTERS all over the country with NY and other areas predominating. I would personally not go to a regional hospital if a University Medical Center is available. Columbia Presbyterian has one of the best services in the country for this and there are other regional hospitals in Cincy, D.C. and St. Louis, for example. University Centers tend to do more of these kinds of surgery and have abundant docs available for special consults.
Also, if you identify a regional University hospital, many have webpages on neurosurgery with detailed FAQS and info for patients and parents. I find these incredibly helpful in mining free information without resorting to WebMd or some such site that presumes detailed knowledge.
Godspeed!
Frank
Great advice. You know of what you speak...
Thank you Frank. You are right about being overwhelmed. I tried to answer some of my concerns with Google, but as I said, it wasn’t much help not knowing what to look for.
I will google university centers spinal alignment pediatric and see what I can find.
Learn as much as you can about this illness, then learn more. Ask questions. Don't accept partial answers from doctors involved. Don't accept doctors who insist on providing partial answers. Always be pleasent, polite and tactful, but don't be afraid of pressing for what is needed. Get MANY opinions. Go to the best place you can to get the info and any surgery. I don't know how they would be for your situation, but Johns Hopkins (Childrens Hospital in our case) in Baltimore did an excellent job of taking care of my daughter.
Be prepared for a level of focus and dedication that may be unfamiliar to you so far. Always have any potential complications / outcomes and the probability of occurance completely explained to you. Look on line for the frequency and success statistics for any procedures at any hospital(s) you may work with.
God bless your family and your daughter in particular. May He provide her with the help of excellent doctors and His own healing and comfort.
So - I think you are doing the right thing by getting advice and seeking not just medical opinions but the actual experiences of people who have dealt with the condition. My dd is in pain at times and takes aleve (over the counter) but our friend who had the surgery also still has pain at times so I don't know if that option guarantees a pain free outcome.
I will pray for your daughter and for you to have wisdom as you walk through these decisions.
I hate to mention this but have you thought about mineral deficiencies?
It might make sense to look into the connection of for example magnesium deficiency and scoliosis.
I have scoliosis, but never had to have surgery.
It was found when I was about 10 years old. It was about 7 degrees curved at that time. I remember they gave me a bunch of exercises to do. They said that it was to minimize the curve that will get worst through puberty.
Of course, I never kept up on them, even with all the nagging from my parents. I was rechecked when I was around 20 years old, and it went to 11 degrees. I never had any problems or issues from it so far. I am now 42 years old.
My wife had the Harrington rod surgery when she was 14. It improved her life drastically. Don’t be afraid of the surgery.
Be afraid when they tell you it’s only cosmetic and scoliosis doesn’t cause any problems. My son has scoliosis also. Three curves, top and bottom curves exceed 40 degrees. Our Kaiser specialist says he’s fine it’s just a cosmetic problem.
His trouble breathing and squished internal organs aren’t related says the quack. We went to Shriners in Sacramento and got some real service. We are weighing the options as presented by the fine doctors at Shriners.
If you have questions find a Shriners Hospital. They take kids until they are 18.
I have a family friend who had this surgery when she was about 14, when medical technology was a lot more primitive than it is now. She’s been fine ever since, and she’s in her early 50s now.
If doctors determine that this type of surgery could help her, I think you’d better go ahead with it before it’s too late (I think there’s a limit to how extreme the curves can be, and still be able to implant the rod). If she’s got all these abnormal curves at 13, and already it’s causing problems like her legs going numb, just imagine what sort of spinal problems she’d have in old age — she’d almost certainly be stuck in a wheelchair very early on, from the sound of it probably by middle age. And what about pregnancy? If she’s otherwise able to have children, having her spine unable to support the additional strain could endanger both her and a baby she’s carrying.
When someone has relatively mild scoliosis, it makes sense to weigh the risks and discomforts and subsequent limited range of movement associated with the rod-implant surgery, against the risk of future problems caused by the scoliosis. But when things are this bad already and almost certainly going to get worse without surgery, it doesn’t sound like there’s much of a downside to the surgery, unless the doctors believe it carries unusually high risks in her case, due to the spina bifida.
Prayers for your daughter, autumnraine !
It was pretty clear to me from your post that you're already planning to take her for an orthopedic consult. Maybe some FReepers have reading comprehension problems. Or maybe some FReepers have been brainwashed into the dangerous dogma of "only a doctor" can provide any useful information about any medical issue. Pay them no mind. Take charge of the situation yourself, and let your get as involved in the learning and decision-making as much as she able and willing to at her tender age. Honestly, the best doctors really appreciate it when a patient (or patient's parent) arrives already very well-informed, and prepared to ask intelligent questions and understand the answers.
My niece had severe scoliosis, and when she was 14, she had the steel rod implant job done. Sure, it was painful, and hard for her to live with the full body cast for almost a year.
But it worked! Today she is a happy productive woman of 47. She holds down a full time job with the City of New York. She’s been married for 25 years. She has traveled all over. She has a passion for bowling and has won many championships. She is attentive to all family members, young and old. She is a jewel of a woman!
All this would not be possible if she had refused that surgery many years ago.
We will pray for her,((((((Hugs)))))
Ignore him. Just take our blessings that we pray for you and I hope you get your answer.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.