1st specialist visit for an 11 year old girl ..3 curves 26 deg, 30 deg, 27 deg

[Dessy's mom]

1st specialist visit for an 11 year old girl ..3 curves 26 deg, 30 deg, 27 deg

I am so new to all of this so please bare with me. My daughter is 11 I noticed a lump on her back in Jan. I took her to the peditrician and of course blood work and x-rays Diagnoisis Scoliosis. The xrays report reads like this:

Cervicothoracic curvature convex to the left is noted. By the method of Cobb, this curvature is 27ø. Thoracic curvature convex to the right is noted. By the method of Cobb, this curvature is 30ø. Rotatory curvature of the lumbar spine convex to the left is noted. by the method of Cobb this curvature is 26ø

To be honest I am not so sure I know what all of this means. And now I have to help my daughter deal with this.

We have an appointment at the end of Feb. 2012 to see Dr Gerow at Texas Childrens Hospital in Katy Texas. Is anyone familiar with this doctor? What do I need to ask? Any advice on how to help my daughter deal with all of this? Her peditrician said at a minium she would need a brace.

Thank you for any advice or help.

Dessy's mom
11 year old daughter ..3 curves 26 deg, 30 deg, 27 deg

[mariaf]

Hi Dessy’s Mom,

Welcome.

I am not familiar with Dr. Gerow so I can’t comment, sorry. Hopefully, he is not only a pediatric orthopedic surgeon, but one who specializes in scoliosis. (By the way, don’t let the term orthopedic ‘surgeon’ scare you – they also prescribe braces, they don’t just perform surgery.)

At this point, yes, bracing will probably be recommended. Any idea how much growth your daughter has remaining? I’m guessing it could be quite a bit since she’s only 11.

My only advice right now would be to find a doctor you trust (you may even want to get more than one opinion) and take things one step at a time and one day at a time. We are here to answer any questions that arise either now or after your appointment at the end of the month.

Best of luck to you and your daughter and please keep us posted!

[AMom]

Ask what YOU want to know

1st specialist visit for an 11 year old girl ..3 curves 26 deg, 30 deg, 27 deg
...To be honest I am not so sure I know what all of this means. And now I have to help my daughter deal with this.

We have an appointment at the end of Feb. 2012 to see Dr Gerow at Texas Childrens Hospital in Katy Texas. Is anyone familiar with this doctor? What do I need to ask? ... Her peditrician said at a minium she would need a brace.

Thank you for any advice or help.

Dessy's mom
11 year old daughter ..3 curves 26 deg, 30 deg, 27 deg

I don't know about the doctor, but I would recommend asking her physician what YOU want to know. I’ll share my old Q&A as a way to get you started.

On important medical visits, I usually write a list of questions and then group & re-sequence them placing the most important ones first. (I have found my daughter’s doctors like having a copy of the list. On my copy, I leave room to write their answers because I may not remember them once I walk out the door.) I had some very specific questions, but here are the general ones I asked when her pediatrician referred us to an ortho:

Dx: I wanted to know what type of scoliosis she had (idiopathic or a known cause) and the degree & direction of the curve/s.

Current Treatment: I wanted to know what treatment/s was available, what the physician recommended, why s/he recommended that particular treatment, and the expected outcome of the treatment. I also wanted to know where my daughter’s case fell within the expected the range of results for the various treatments. –If s/he recommended bracing, I wanted to know who s/he recommended, how much experience the orthotics guy had, and who we contacted (ortho or the guy that fitted her) if we had questions or problems.

Details: I asked the doctor to show me how he read the x-rays taken earlier. I asked why his reading was different from the other doctor’s reading.

I let him know my daughter had not started her menses, asked about the impact of growth and maturation on curve progression, and how often we needed to return for follow up visits. I then asked what would happen if we did nothing (in other words, based on her particular data, how likely was it that her curve would progress.)

Long Range Treatment: I wanted to know what s/he was looking for while he was “watching and waiting” and what the next step would be if/ when s/he saw it. At that point, I just seeking general knowledge—I realized s/he would not be able to tell me exactly what s/he might do unless/ until s/he sees a change.

Reports: I request and retain copies.

X-rays: I request and retain copies. (Same for other tests such as an MRI, if needed) —there may be a charge for the copy

Reading: I asked if s/he would recommend reading material so I would better understand the disorder.

And finally, I asked if there was anything s/he, as the professional, thought I should know that I hadn’t asked her or him.

Best wishes.

[Resilience]

Dessy's mom,

I agree with the wise advice above. I also am not familiar with the doctor you mention but would recommend that you take your daughter to an Orthopedic Surgeon who specializes in Scoliosis. It is an evolving field, especially in regard to young children.

Also, let me repeat Maria's comment that although a Surgeon, these specialists routinely treat patients with Scoli along the journey, the goal of bracing being to avoid surgery. Initially, my husband was very concerned that we were seeing a Surgeon.

You are in the shock stage of this diagnosis. Any emotion you or your daughter is feeling is normal. Why me/her, anger, sadness, overwhelmed etc. Once you have a plan in place that you feel ok with, it will get a bit better.

You have come to the right place for support and information.

Best Wishes

[Pooka1]

Details: I asked the doctor to show me how he read the x-rays taken earlier. I asked why his reading was different from the other doctor’s reading.

Hey AMom, do you remember how different the readings were and what the reason was for why they were different? How different were they?

I think there is a range in how to draw a line on a radiograph but people who know what they are doing should be selecting the same end vertebra. Maybe two vertebrae have essentially the same maximum tilt but then the angle will be the same using both. So that will not account for it.

The subject of experts picking different end vertebra is perplexing because the rule of picking the most tilted is so simple. I would like to know what is going on here.

[mariaf]

On important medical visits, I usually write a list of questions and then group & re-sequence them placing the most important ones first. (I have found my daughter’s doctors like having a copy of the list. On my copy, I leave room to write their answers because I may not remember them once I walk out the door.)

Great post, AMom.

You reminded me that a friend of mine, when she was getting opinions because her daughter required fusion (so definitely 'important' visits!), brought a mini tape recorder with her because she knew that like most of us, she would not remember everything the doctor said once she left the room.

[ARodsMom]

Hi Dessy's Mom!

My son was 11 at the time of his surgery (he's 13 now), and his surgery was performed at Texas Children's Hospital in the Medical Center (Houston). I know we've seen Dr. Gerow, unfortunately I don't remember if I liked him or not. We've seen a few of the orthos at TCH. If it's the one I liked he moved locations and it was too far for us, if it's the one I didn't like it was not that I felt he didn't do for my child he just didn't suit me. If that makes sense. But, I think TCH is a great place. My son's surgeon was Dr. Hanson who is a Baylor doctor like many of the docs at TCH.

I think I wrote down a few of the questions I found off of this forum. I also called the doctor's office a lot with other questions I thought of. Dr. Hanson's office actually has a live person who answers and answers right then and there if he's able to or else he calls back but is always very quick about it.

[leahdragonfly]

let your daughter ask questions, too

You have gotten some great advice and suggestions above. That was a really good list of questions to start with from AMom.

I would also ask your daughter what she wants to know the appointment. I am sure she may have fears or questions that she may be reluctant to ask, but if you let her know you will answer any question, she may feel more comfortable.

Good luck, you've come to the right place.

[Dessy's mom]

Wow

Thanks everyone for all the replies. I think I will start a binder for these apointments and take the tape recorder as well.

[AMom]

I wish I had this page when we were starting out!

Thanks everyone for all the replies. I think I will start a binder for these apointments and take the tape recorder as well.

There is a lot of good information all on one page. I wish I had this when we were starting out!

Good point Leahdragonfly, when I wrote that list, my daughter was only seven and had no interest in scoliosis. Now that she is older, I ask her about a week before we see the ortho what she wants to ask (to give her time to think of questions).

Pooka1, it is my understanding that a 5-10° discrepancy between reading of x-rays is normal. It doesn’t matter if it is two different doctors reading the same x-ray or the same doctor reading the x-ray at two different times. Because of the known discrepancy, orthos don’t consider a curve to be “changing” unless the difference exceeds 5°.

For example, x-ray #1 = 24° and 4 months later x-ray #2 = 20°. This would be read as ”no change” in the curve. It becomes a grey area when looking at small cumulative changes over time.

For example, does 27° to 24° to 20° equal a change (cumulatively it is over a 5° change) or slight differences in reading a series of x-rays? To have a higher level of confidence, I would want to see the 4th or even 5th x-ray to say the curve is decreasing rather than holding steady.

Discrepancies in reading our x-rays had a wide range—some up to 12°, but most were within 3-7°. Yes, I did ask why they chose different vertebra and how important is was to draw a straight line. In my opinion, a few degrees difference is fine, 12° is unacceptable.

Anticipating your next question, I did read an article discussing this topic five years ago, but don’t remember its quality or title. I also asked the doctors we were interviewing and was either told the same thing or “I can’t speak to the other readings, my reading is correct.”

Dessy’s Mom, making a file for medical reports, treatments, tests, insurance/ co-payments, referrals, and medications made my life less stressful. When we go for a second opinion it is convenient to carry a copy so the professional can look over the documents and discuss their opinion right then. Doing so allows me to ask questions whereas reading a report later doesn’t allow for that interaction.

Also, you might want to have a back-up means of taking down information. Some folks are not comfortable with tape recorders.

[Dessy's mom]

Dr. Visit

We had our doctor appointment and according to him the curves measure 30, 31 & 35degrees. Idiopathic scoliosis Dr. Gerow has ordered a Boston brace to be worn 23 hours a day. Also with this we have discovered that one leg is1/2 inch shorter than the other. Is this common?