Alexa meets another Orthopedic Surgeon

June 28, 2010

Well, we finally had our appointment with a second Orthopedic Surgeon - Dr. Skaggs in Beverly Hills, at Children's Hospital LA. You know when you just meet a doctor that you just like right away, and you almost get a feeling of relief? Like you know you are in good hands?? Well, that is the feeling we got with Dr. Skaggs. This doctor was recommended by several other families in the support group I joined - one who lives here in Torrance, two who came from Northern California, and one from San Diego - all whose children had surgery with Dr. Skaggs. So thank you to them for their input.

Alexa couldn't have done better (100% better than the appt we had the previous week with the Pulmonologist). I drove her all the way to Beverly Hills during naptime, and she did as I requested - took a nice little nap in the car. Daddy met us there, which always makes her happy and went in. At first, I was a little thrown off, because it is a Children's Orthopedic Group, and yet there was not a single kid's toy in the lobby. But once we got called in, my worries were put to rest. Dr. Skaggs assistant came in, and said "Oh! Would you like to move into a patient room that has toys in it?" Awesome. Then once we were in there, she said "Why don't I leave, so you can leisurely get Alexa undressed without a stranger in the room." More awesome. She took all of our x-rays and reports and eventually came back with Dr. Skaggs. When he came in, he immediately got down on her level and started playing with the her and the toys. Ah - an actual chance to talk to a doctor without having to raise our voices over the crying! He even waited to examine her until the very end, after we talked.

So what did he say??
Her spine is currently "balancing itself out" - and he thinks, absolutely no question - that we need to just "wait and see", and not do surgery. There is the top curve, caused by the malformed vertebrae - but there is also a curve down lower that is compensating for the top curve. This is the same thing that the first Ortho, Dr. Cunningham told us.

But I was prepared for that answer - and I had a whole bunch of new questions for him just the same:

1) She has multiple vertebrae that are "fused" (unilateral bars), along with ribs that are fused . So what does this mean for her torso height? 

His answer: She will have a shorter torso. He held up his hand to show several inches - but said there is no way of knowing exactly how much.

2) Do we need to be prepared for serious lung issues in her future because of the fused vertebrae?

His answer: He couldn't tell us either way. He did say that we would be surprised how much extra reserve the human body's lungs can hold. She may have issues, or could have not much at all.

3) And even tho her spine itself is "balanced" - why wouldn't you do the VEPTR surgery in order to separate the ribs and increase the lung space? 

His answer: The lung space is not currently being compromised enough to warrant doing surgery right now. As she grows more, we will be able to see if the upper curve starts pushing into the left lung space. Also, even if the surgery can help stretch space between surgically separated ribs, there is not enough evidence to show it will help the growth of fused vertebrae. It may help a bit, in some cases, but there is no guarantee of that. She may benefit just as much from her normal growth.

4) What about the protrusion on her left side of her chest - is that going to continue to get worse and worse?

His answer - probably not that quickly.

5) Are you also not recommending the surgery because she is so young, and her bones are not even solidified yet?

His answer: No, not at all. He has done this and other surgeries on even infants when needed, and he would not hesitate to say if he thought she needed it.

No matter what kind of questions I had, the plain fact is that he doesn't believe she needs the VEPTR or any other spine surgery right now. He has seen some really severe cases too. He said "Look, believe me - I have done a lot of these surgeries - and if she needs it in the near or distant future, I'm definitely your guy. But the truth is, she just doesn't need it right now. She may need it next year, or she may never need it." He said that the biggest growth for a child is between 0-3, and then they slow down. So we should watch how her body grows on its own, without interfering.

So, next up - He wants to see her again in 6 months, and do a new x-ray.

That was a relief to hear for obvious reasons. But also because, in the mean time, we are so busy going to the other specialists - so to have that on hold is ok with us. Next on our plate this month and next, (mostly due to the VACTERL association anomalies):

• Echo - to check for congenital defects in the heart structure.
• Geneticist - to really make sure we know of everything going on.
• Urologist - to start the regular checks on her single kidney.
• Pulmonologist again - Another chest x-ray to check her lungs.


I have been told by many, that  including all of the details and explanations has really helped them understand everything much better. So in keeping with that effort, I am including a front pict of my princess, Alexa - to show her chest bump. FYI - although she is "off balance" a bit more than other kids her age, there is really no visible evidence on her back of the curves in her spine.

The other pict is just a more recent xray - the same view of her spine as before. (The marked areas are just my own markings, not a doctors.) It's highlighting her fused vertebrae areas - it's too hard for me to mark where exactly her fused ribs are - tho they are up in that same right thoracic area.

Til next time -
Chris