stainless steel or titanium

[MATJESNIC]

Would someone please tell me what their surgeons used and why.

[Sherie]

Hi Melisa

I'm sorry the Spinecor didn't work out for Nicole, but it sounds like you were somewhat prepared for this to happen. Sheena appears to be stable at this point, her xrays from Feb to Apr hadn't changed. She'll be 15 in Aug.

We've been to 4 doctors and had a consultation with Dr. Shufflebarger, past president of the SRS, by email (I sent photos and xrays to him). All 5 said they prefer stainless for posterior surgery, titanium for anterior. My impression was because it's stronger and maybe through experience they just prefer it. Dr. Lenke is using stainless and an all pedicle screw construct on Sheena. He's using pedicle screws at every level. The research shows that pedicle screws hold the rods better and provide for better correction than hooks, which can also become dislodged. I know there are uses for the hooks (Patrick's mom thought they used hooks at the end of his rods in case of future surgeries). I also saw xrays at Dr. Lenke's office of a boy with severe kyphosis, there were both hooks and pedicle screws used.


Have you found out any details about the surgery yet?
Take care.

[Carmell]

Hi Melissa,

I've thought many times about posting to your various notes here. I just don't know if I have anything else to add. Mostly I want you to know we are thinking of you and Nicole and sending our best wishes to you both, for whatever the recommendations may be.

The stainless -vs- titanium discussion... Each ortho will have one, maybe two, suppliers of euipment used in the operating room. Much like a contractor will have one or two suppliers for most of their "construction" needs. There are several (maybe a dozen or more) orthopedic hardware suppliers around who try to get (and keep) orthopedic surgeons' business. Much of the decision to use stainless steel or titanium depends on the business end of the deal. Is the supplier a stainless steel-only company? Is it more cost effective for the doc to use one over the other? Is the doc more comfortable/familiar with one or the other? I honestly think patient needs play very little in the recommendation, but that's just MHO.

Like Linda R. has said many times - ask the surgeon which they use and prefer, and why. That's the only way you'll get an answer that is right for Nicole's needs. My Braydon has adjustable titanium rods (2). He has never had a problem with the device themselves (6 years later now). I do know that when they use pedicle screws, the screws are stainless, not titanium. I know a 7yr old boy who had major lumbar fusion last August. His rods are titanium and the screws are stainless. The surgeon was going for long term stability of the lumbar and sacral spine, besides trying to give him the least amount of "bulk" or "heaviness" to his back (not that they weigh a lot different, but some say the stainless rods are "heavier"). So far, he's doing great.

Good luck!

[Snoopy]

Melissa,

Honestly, I'm not sure what type of rods Jamie has. When I asked the surgeon before her surgery what type of rods he uses, he stated that he usually uses stainless steel and sometimes uses titanium. Now I'm curious and I'll have to ask him next month.

I agree with Carmell (and Linda R.), that the only way to know for sure what is best for Nicole is to ask her doctor. Most people are surprised when I tell them that Jamie has both Kyphosis and Scoliosis and doesn't have any pedicles screws--only hooks and wires. Every child's surgery is different and that's where it helps to have at least a second opinion to decide what is best.

Mary Lou

[MATJESNIC]

Thanks Everyone for your responses. I put in a call to CHOP today and hopefully will get an appt next week. After that appt. we will make our decision between the two hospitals. Not sure who I will see at CHOP. But I am familiar with a few names from kids in my area and from these sites. I have to believe that Nicole will do fine in either Shriner's or CHOP because they have amazing reputations for spinal fusions. I don't want to start running around to N.Y., Maryland, etc. when I have these two right here. I also have DuPont if I wanted to throw that one in the mix.

We are planning to have the surgery done over the next few months. Anywhere from July - Oct. would be fine with us. Nicole really doesn't like Middle School and she wouldn't mind missing the beginning. If she minded, I would have pushed for ASAP. Tomorrow night is her last of her 10 years of recitals at her Dance Academy. She may be able to dance sometime later next year. We will see. Her ballet teacher knows two women with harrington rods who went on to become professional dancers. Nicole will be back, straighter and taller.

Sherie, I wish your daughter much success. How tall is she? Is she a risser 0?

[Sherie]

Hi Melissa,

I just looked at Sheena's xrays from Feb., I would guess she's Risser 4 or 5. Dr. Lenke felt strongly that her progression would slow down and we could wait until next summer if we wished. My husband and I both felt we should just go ahead and schedule when he had an opening. It's very stressful waiting. As far as height, my mother is Japanese so we're on the short side, I'm only 4'11", Sheena's about 5'2" now (I was happy she's taller than me at least). I'm hoping she'll gain another inch or two. She started her menses last year in Jan. and had about 20 deg. of progression since then, 6 months of that time she was in the Spinecor.

To clarify, I wasn't advocating stainless, after talking to several people, I think there are probably pros and cons to both, I just wanted to share my experience so far. I agree you must be confident with your doctor, whatever his preferences are. When is Nicole's first surgical consult?

[Carmell]

Hi again, Melissa,

This has nothing to do with the discussion of stainless -vs- titanium, but, I think its as important. When you are "interviewing" docs to do this surgery, make sure you choose a hospital that knows how to care for Nicole AFTER the surgery. The surgeon needs to be skilled and know what she/he is doing, but, the post-op care is as important. For me as a parent, I prefer a Children's Hospital setting where they know how to take care of kids. The anesthesiologists only administer to children. The nursing staff knows how to help kids who are uncomfortable, and how to help them recognize their own needs. PT needs to know how to work with kids, etc. You can have a fabulously successful surgery, but if the recovery period is less than perfect, you will have complications and a miserably longer recovery (sheesh - must be late - my grammer is horrible).

My point is that the post-op care is as important as the surgeons skills. You might also want to check to see if the actual surgeon does followup, or if they have a resident or partner do that. If its important for you to have the actual surgeon do the followup, that is a valid request, but you must verbalize this too. Good luck again.

[Snoopy]

Melissa,

Sorry, this too is off the subject of stainless/titanium. However....

I would suggest that when you see a surgeon, you ask for a list of patients who he/she has done surgery on and CALL them. Ask the parents of these kids about their whole experience--hospital stay, doctor's bedside manner (this sometimes matters), availability of the doctor if you had problems/questions, pain management, success rate, etc.

Mary Lou

[MATJESNIC]

Sherie,

Isn't it amazing how different two girl's bone maturity can be. Both had their period for a signigicant time and yet my daughter is still at a 0. This confirms that one doesn't necessarily have to do with the other.

Mary Lou and Carmell,

Thank you for all that advice. I agree that I would only go to a hospital that cares for children. That is why Shriner's and CHOP are my two options. I have talked to a few Parents of children who had surgeries at both places and only positive comments were heard. I would not have thought to ask whether the surgeon does all of the follow-up. That is a good question. You are right, Carmell, that the after-care matters so much.

[MATJESNIC]

I have to share with you all how touched I was last night at Nicole's recital. The director called her up and talked about her past 10 years of dance, her scoliosis and upcoming surgery and wished her well. It was so sweet and loving. She also called up Nicole's friend who is moving 2 hours away. Nicole and I always play the game of "Which would you rather....?" I asked her if she would rather be getting the surgery or moving 2 hours away. Without missing a beat, she said she would rather get the surgery. So for Nicole, this isn't the worse thing she can imagine!!

Anyway, back to how amazing people are. We have known most of these dance parents for 10 years. One of them who has an amazing yard and pool just called me to say she is having a huge party for the 2 girls to wish them well. She is inviting all the kids on the comptetition teams (50 plus) and the teachers. I am touched beyond words. We intend to throw Nicole a party wishing her luck at some point. (You are all invited). But this is so nice. It is also going to be a surprise for Nicole.

[jamesc777]

Dr. Betz's words

Hi Melissa,

I don't know whether Erin has talked with you (this is Owen). Dr. Betz said he uses stainless steel because it's cheaper. Apparently he didn't see a reason why he should use more expensive titanium (I don't think Shriners ever compromise quality for cost reasons). Dr. Betz said if we prefer, they would use titanium. So you are not necessarily locked into ss just because you choose Shriners. They use screws on every vertebra, just as Sherie has described about her doctor; they place everyone in the ICU for the first night automatically; and they don’t seem to skip anything (this, however, could be good and bad—it could be bad because of longer operating time and more blood loss). (Dr. Hey uses hooks for the upper most vertebra—I'm not sure about this, but we saw the models in his office—and for the rest of vertebrae he uses screws, which are also titanium. For lumbar, he puts screws for every vertebra, but he puts screws for each two thoracic vertebrae. I didn't question this; this is what the doctor believes it to be the best, and it seemed to be reasonable to us and the hooks on the top vertebra seemed to make the whole thing more secure.)

I would, however, scrutinize real carefully who are going to be doing what if you choose Shriners; we were not too comfortable with the doctors the chief (Dr. Betz) had introduced to us (based on a later investigation). Probably you know that Dr. Betz had shoulder injury and he hasn't been practicing for a while; I don't know when she can perform the operation by himself, but he could be rusty even if he actually does everything by himself. Most likely the actual work would be done by his associate doctors. If you want to know our opinion of a couple of doctors (based on what we know of their experience level), let us know so that we can talk in private.

Best wishes for Nicole, (by Owen)

[MATJESNIC]

Owen,

Thank you so much for that info. I appreciate it so much. We have decided we are going to CHOP which has an amazing excellent reputation throughout the country. We will know more in a couple of weeks. Yes, I will send you a private message.