What Questions Would You Ask

[Cindy]

My 17 yr old daughter has an app. to consult with a surgeon next week. I want to make sure I ask all the right questions. She wore a brace for 2 yrs and had no progression in her curve. She got out of the brace when her growth plates were filled in and then at her 6 month check she had progressed some. The doctor said he is not convinced she needs surgery but is concernd she might. Her top curve is at a 49 now.
I think I'm feeling so worried about the possibility of surgery that I'm overwhelmed. Can anyone give me some suggestions on the most important questions to ask. Our app. is with Dr. Douglas Burton in Kansas City at the KU Med Center.
Thank you, Cindy

[Carlos Alberto]

Hi Cindy
I think that in the following WEB you can find all you need to ask in your next daughter´s consult.

My best regards



http://orthoinfo.aaos.org/fact/thr_r...%20Information

[LindaRacine]

Hi Cindy....

If you search, you'll probably find a list of questions that someone put together. I would definitely recommend against using that however. We're all very different, and using someone else's questions will probably only confuse the issue. You'll probably have a limited amount of time with the doctor, so you need to make the most of it. And, the questions you ask will be based on whether or not he recommends surgery.

Between now and the time of the appointment, I'd like to encourage you to sit down and write your own questions. Put together a list of things that concern you and your daughter. I'm sure if you sit quietly and devote some time to it, you'll realize that you already have many of your own questions. It is rather overwhelming, but concentrating on it always seems to help me.

As you listen to what the doctor tells you, I think some questions will come to you naturally. I can almost guarantee that you'll have questions after you've left the doctor's office. Ask Dr. Burton if there's some way to get in touch with him if you have questions after the appointment. Then, as you have time to go over the appointment in your head, and questions come up, you should write them down.

Best of luck!

Regards,
Linda

[Joe's Mom]

Hi Cindy,
I am the mom of a boy who has had four major surgeries in his 16 years of life (none of them related to his spinal conditions). I think you may benefit from compartmentalizing your questions . . .you really have a lot of information you need to get to feel more comfortable about a really difficult situaiton! I know!

The questions for the surgeon are truly individual to your child. You want to feel comfortable with your surgeon and feel that you can access him or her and ask him or her questions. There is no "one size fits all" regarding this type of questioning.

You also need to ask questions about the facility . . . roomates or private room? Age of roomates? Parents rooming in or not? Location of a Ronald McDonald house or other affordable housing for parents family members.

You will never know everything or get every question answered, but the more basic info you have about the facility, the doctor and what will happen before, during and after will help you get through a difficut time.

[ProudParents]

Here is a list of questions we asked Dr. Boachie in New York. Some are specific for our daughter, the doctor, and the procedure. Write down the answers to the questions in full when you get home while it is still fresh in your mind. After you get other opinions, comparing questions and answers can be invaluable. Your daughter is on the borderline, tough call. Ask the doctor what he would do if she were his daughter.

General

What are Lisa’s curves measuring? From what vertebrae?

How much kyphosis does Lisa have? Is it normal?

What did Lisa’s lumber curve correct to on the bending x-ray?

Is the lumber curve compensatory? Lenke classification?

How rapid is Lisa’s curve likely to progress?

How much growth do you believe Lisa has remaining? Risser number?

Does Lisa have enough growth left for a brace to achieve anything?

General Surgery

If surgery is recommended, how soon should it be done? Would waiting until October be an issue?

How much correction can you hope to achieve? Lumber and thoracic.

What would Lisa’s Kyphosis be after the surgery? Is it postural kyphosis?

How is Lisa’s shoulder height now and how would surgery affect it?

Have you ever seen a curve progress significantly after surgery?

What is the possibility of having chronic pain?

Does Doctor Boachie do all of the surgeries?

Who normally assists you during surgery?

How many surgeries of this type do you perform per year?

Can Lisa and I talk to some prior patients who have had similar surgery?

Posterior Specific

Which vertebrae are to be fused?

Can you take a minute to explain how you determined the fusion level? Neutral, stable vertebrae?

Are pedicle screws to be used?

Are any hooks, wires, or devices used other than strictly pedicle screws and rods?

Does every vertabrae get a screw? One or Two?

Do you perform any type of derotation technique?

Is there any chance that Lisa’s thoracic vertebrae are too small to receive pedicle screws?

Will the instrumentation be prominent in Lisa’s back? Do you ever remove it?

Will you use smaller instrumentation considering Lisa’s size and weight? 5mm?

How thick is the rod and what is the material? Instrumentation manufacturer?

Is the rod bent before or after installation or not at all? Titanium has a memory if prebent.

Have you ever had a rod break or screw pull out?

How do you avoid disturbing so many muscles?

How long is the incision and what type of stitches are used?

Fusion Specific

What do you use as a fusion material?

Is anything mixed with the main fusion material? Bone marrow or Demin Bone matrix (DBM)?

What type of allograft do you use? Freeze dried, fresh, or frozen? Any associated problems?

Is bone for graft taken from rib or hip for posterior? Autograft? Separate incision? Chronic pain from harvest site?

How long for fusion to take place?

Do you often see complications of pseudoarthosis? (sudo-arthosis)

When can you tell if there is pseudoarthosis?

Do you use Grafton or BMPs?

Is BMP still not suitable for posterior fusion? Will it be soon?

Thoracoplasty

Do you recommend thoracoplasty? If you remove a rib for thoracoplasty, can you use it for grafting purposes?

Will the thoracoplasty make the shoulder blade more prominent? Good cosmetic results?

Are ribs removed entirely?

Will the rib grow back?

Logistics

What would the next appointment be for?

Do you have a list of hospitals that you are affiliated?

Can we have at some point a letter of medical necessity if you think surgery is necessary?

X-Rays

Anteroposterior AP, standing lateral, left and right supine bending x-rays.

Would you want another set of x-rays for the pre-op meeting?

[Cindy]

Thank you all so much for helping me calm down and get my thoughts and questions organized in my mind before our appointment with the surgeon. Thank you Linda, I did sit down and take some time to think what I really needed to ask in reguards to my daughters case. Thank you Carlos for the web site. It did have some helpful questions on it. Thank you Proud Parents- I think you should really be called awesome parents! Your questions were very thorough. I also read Dave Wolperts book on Scoliosis Surgery. Thank you Joe's mom for your suggestions.
After Dr Burton spent a considerable amount of time examining Christina and looking over her xrays he said he would not recommend surgery but would like to follow up on her in 6 months to a year. He said her growth plates are filled in. She is 17 and he thinks her curve has settled since getting out of her brace. He measures her at a 48/38. I am relieved but I still wonder if things could change so I will follow up with Dr Burton.

Thanks Again! Cindy

[Gail]

Hi Proud Parents,

Wow...what a list. You were really prepared...I would have probably had to pay for two office visits if I had ask my surgeon all those questions. Some of these questions are way over my head...meaning according to how they were answered I wouldn't know if one answer was better than the other. Obviously, you guys researched this thoroughly and knew the answers you were looking for. Hats off to you.

I am curious about one question:

Is the rod bent before or after installation or not at all? Titanium has a memory if prebent.

Please tell me more about the bending of titanium rods.

Kindest Regards,
Gail

[ProudParents]

The question concerning the titanium rod memory arose after reading the following abstract. Remember that this is just one study and there are many reputable doctors using titanium. Dr. Betz in Philadelphia agreed that titanium does have a memory and explained that he uses that characteristic to his advantage although that didn't fully make sense to us. Dr. Edwards in Baltimore uses titanium despite these characteristics because as he explained, the rods are slightly more flexible than stainless steel and are easier on the discs above and below the fusion level, and of course they don't interfere with MRIs which may be more routine in the future. Our personal choice was stainless steel.

Here is the abstract:

Abstract from the SRS 2003 Annual Meeting

Purpose: The purpose of this study is to determine the difference in metal memory between 6 mm stainless steel rods and 6 mm titanium metal. Background: Proximal rod screw construct pull-out can be a severe problem when dealing with spinal instrumentation, especially with added forces from surgical deformity such as thoracic kyphosis are present. Titanium constructs are advocated for the ability to repeatedly view the soft tissues and neural tissue post operatively with MRI. Although the bone-metal interface with titanium has proven superior over that of stainless steel, proximal screw rod failure may be enhanced with titanium rods due to the metal's tendency to revert to its original shape (metal memory). Postoperative surgical balance may also be lost when using titanium rods as an implant versus stainless steel for the same reason.

Methods: The following 6 mm diameter rods supplied by Synthes (Paoli, PA) were used in this study: 300 mm SST (298.112), 100 mm SST, (298.104), 300 mm Ti (498.112), 100 mm Ti (498.104), and 85 mm pre-bent Ti (498.143). A three-point rod bender was used to contour the straight rods in as uniform a curve as possible, using a template with a radius of curvature of 30 cm. The rods were bent at room temperature, then placed in an incubator at temperature of 37±2º C and left for six months. At the time the rods were bent and every 2 weeks thereafter, the rods were photographed at high resolution (2560 x 1920 pixels) over graph paper with a Digital Camera (Nikon Coolpix 5000). The digital images were then processed using Jandel Sigma Scan, by outlining the covex side border of each rod, and digitizing those pints into an x-y graph. Then a best-fit regression polynomial was used to calculate the average curvature, defined as the change in angle from end to end divided by the rod length. After 36 weeks, the curvature of each rod was normalized against the initial curvature in order to account for variances in initial curvature, plotted against time, with a linear regression performed to assess changes in curvature in terms of percent change per year.

Results: Changes in both SST rods and the pre-bent Ti rod were within measurement error (0.52% increase for long SST, 0.26% decrease for short SST, 0.52% for Pre-bent Ti). In contrast, both manually bent Ti rods changed markedly (decreases of 6.76% and 5.2% for long and short Ti rods respectively).

Discussion: Titanium rods used for scoliosis constructs are of a high grade of titanium alloy combined of 0.5% nitrogen, .10% carbon, .01255% hydrogen, .5% iron, and .4% oxygen. This allows the rods to be contoured. Previous in-vitro testing has shown that heat conduction in titanium rods could possibly be used to correct scoliosis when a pre-bent rod has been placed. The temperatures needed for this deformation to occur and for the rods to obtain the original length makes the application unpractical for use in scoliosis correction. The metals have to be heated at transformation temperature. This study shows that continuous heat conduction equal to that of the body temperature may contribute to a considerable loss of curvature in the titanium metal, which would be mainly due to the memory in the titanium. The ideal implant should be strong and stiff, but most of all, retain its contoured shape. No compression or distraction forces were added to these rods and yet a significant change in the curvature was seen. The author postulates that this inherent ability of the metal of titanium might contribute to construct failure, especially as compression forces are added by underlying pathology. Although titanium has proven to have excellent compatibility with bone, this study points to an important fact that titanium should probably not be used in correcting scoliosis unless a pre-bent tempered rod could be used. Over time, this affect of titanium might contribute considerably to the loss of correction and sagittal imbalance in spine cases.

[Gail]

Interesting...especially since I have titanium rods...I guess it will be a wait and see process.

Kindest Regards,
Gail

[Mary Lou]

Cindy,

I agree with Linda...you need to come up with a list of questions that are suited to your situation. I would add that you ask your daughter if she has any questions. I know when we were preparing for my daughter's surgery, I would ask her beforehand what she wanted to know and include that in my list. I would suggest that you keep the questions geared towards what the appointment is about...example: the questions about how many screws, rods, and hooks would be used if she needed surgery could wait until the appointment right before her surgery.

Good luck.

Mary Lou