What’s the word on Osteotomies?

Recently, a reader asked me a question about a “rib clipping” procedure that a Doctor was recommending for her child. Since I had never heard of this during any of my previous research, I thought it would be helpful to dig into the issue a bit. It turns out that this procedure fits the definition of an osteotomy, which is a surgical operation where bone is cut to shorten, lengthen, or change its allignment. Osteotomies are sometimes used in Scoliosis surgeries for the more extreme cases, including in my daughter’s surgery. The type of osteotomy that Dr. Li performed on my daughter is called a Smith-Petersen Osteotomy. In layman’s terms, since my daughter’s vetebrae were misshapen (in a sort of wedge shape), Dr. Li and her team would have a difficult time straightening her spine as much as they would like. So, they wanted to perform the S-P Osteotomies (3 of them) to shave down some of the bone, smooth out the space between vertebrae, and allow her to get more correction. In our case, Dr. Li was only able to perform 1 of the 3 osteotomies because they lost signal to my daughter’s left leg during that time and they did not want to risk any permanent injury. Chances are that a neurological lead had slipped loose (that she was not actually experiencing neurological trauma), but, of course, Dr. Li made the right decision to stop the osteotomies at that point. However, she has performed them before and believes that they have benefit for more extreme cases like my daughter’s (who went into surgery with a 97 degree curve).

The type of osteotomy that the reader was ASKING me about, however, is a different type of osteotomy. I asked Dr. Li her opinion on them, and she graciously responded. Although she said that such procedures could probably be performed safely, they have been associated with greater blood loss and neurological complications and that she (and the other Doctors on staff at University of Michigan, specializing in spinal surgery) do not perform them. She also did not perform them while doing her pediatric orthopedic surgery training at Harvard. So, the practice at two renown hospitals and educational institutions is to NOT use Rib osteotomies when performing Scoliosis surgery. As she said, this is not to say that a Doctor who may be recommending one is not a good Doctor. My opinion is that, if your Doctor does happen to recommend a rib clipping procedure, that you may want to ask them why they think it is necessary. Also, ask them about the increased risk of blood loss and neurological issues, and ask if perhaps the Smith-Petersen Osteotomy may help instead. Sometimes they recommend rib osteotomies because of the rib humps that patients can develop. I have to say that my daughter, at 97 degrees, has ribs that are quite deformed. And, Dr. Li still did not recommend the procedure. My daughter will never be straight, and her ribs are NOT even, level, or symmetric. But, if an osteotomy is recommended simply for the purpose of correcting the appearance of the rib hump, you may want to seriously consider if that is worth the risk. In my opinion, procedures for improving one’s appearance are NEVER worth the risk, but everyone needs to make their own judgment calls on this topic. We didn’t even get more than 1 S-P Osteotomy done, but Dr. Li still got my daughter corrected from a 97 degree to a 40 degree curve, and we were still very happy with the results. My daughter’s appearance is fantastic, even with the slight asymmetry from the 40 degree remaining curve.   I think it’s very important to find a Doctor whose plan you feel very comfortable with – I had that peace with Dr. Li and I would recommend her and her team at University of Michigan to ANYONE needing surgery. Having a surgeon and a surgery plan you trust are beautiful gifts. If you do not feel at peace with the recommendations of your surgeon, it just may mean they are not right for YOU. Feel free to seek out multiple opinions – doing your homework while establishing your team is essential and worth the time and effort.

Setting Goals for Family balance in the midst of medical needs

Well, here we are, another new year, another chance to set new goals.  I think it’s a great time to address something that plagues most of us – how in the world will we find time to add research (and execution) of a medical REGIME for Scoliosis (or another ailment) on top of an already packed family schedule?  The question is so familiar to me – I have asked it of myself and heard it from many frazzled parents who email or call me in the midst of a diagnosis that they just don’t know what to do with.  It is so overwhelming!  In the world of Scoliosis, the avenues you could travel in treatment are so varied, that we can spin our wheels just trying to figure out which way to turn.  This is a very common issue with parents that are new to the Scoliosis world – everyone feels overwhelmed, unsure, and – frankly – scared about the future to come.

One important thing to keep in mind is that, although it is very overwhelming to deal with a new diagnosis, it is very important to take the time to read, research, pray, discuss with your spouse (or other parenting partners) and map out a plan that will meet your family’s needs.  Then you can develop your medical support team around these needs – including only those professionals who align with your goals.  This will take some time and effort.  However, once the plan is in place, you will literally walk that path for years to come.  You can stop along the way to re-assess and re-vamp the route, but putting the work in at the beginning stages is important.  But, the question always remains – How do I find the time?  Well, as with all things, we have to continually set priorities.  I know, this is easier said than done.  It is tempting to throw our hands up and say “Fine, whatever you think is best,” to the first Doctor that takes a look at our child, but, as I can attest to, it is NEVER a good idea to blindly follow anybody’s advice.  Even I, who have a Doctor who I trust IMMENSELY, still do a lot of research and reading on my own.  And, the reason I trust her so immensely is that I am confident that everything she tells me ALIGNS with my past research.  I finally have that peace.  The other reason I like her so much is that she will discuss options with me, answer questions, and take my desires into account for what I want for my kids.  I have proposed bracing solutions to her that she may not have prescribed in the first place, but she is happy to comply if she doesn’t see a harm to my desires.  The point is, you need to learn everything you can so you can advocate for your family and your child and to finally find some peace. (Or, if you can get to the University of Michigan, go see Dr. Li – she is awesome).

Finding the time is hard, but it needs to be done.  Finding the time to drive my kids across the country once or twice a year for the best bracing, drive them an hour and a half once a month for supplemental therapy,  take them 2 hours away to their checkup appointments to get the best Doctors, etc, was NOT easy to find the time or the money for, but, when it’s for the well being of your child, it bumps to the top of the priority list.

Then, what happens is, subtly, magically, all time for fun and family life and RELAXATION just goes by the wayside.  We fit in this new diagnosis, but it is stressing out everyone involved because now the thing that got sacrificed was all the fun stuff.  My recommendation is to PLAN in time to rejuvenate your mind, body, and spirit – and stick to it!  I can speak from experience – as an entrepreneur and a parent of children with special needs, it is HARD to find time for it all.  But, I do  – I make my daily exercise, my preparation of healthy foods, my time for my hobbies – non-negotiable.  Sure, work moves slower.  Sure, I won’t be a fitness model anytime soon (I try to just stick to the 30-45 minutes a day that is recommended).  Sure, my house is not as clean or organized as I would like it.  But, we HAVE to set goals and boundaries and advocate for ourselves, as we wade through a new diagnosis and try to advocate for our children.  And, cable TV?  I haven’t had it for 12 years and I simply don’t miss it!

This new year, I pray for balance in your lives – for a clarity of priorities and a new zeal for the important.  I pray this for me as well – as with all things, it is a work in progress.  Happy new year!