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Wednesday, May 14, 2014

A Quick Update from Boston

I am typing on my phone, so this will likely be full of errors and brief ;).

Today we went to the spina bifida clinic in Boston.  Our primary purpose was to see Dr. Warf, an amazing neurosurgeon they have here, but we also saw the orthopedic surgeon and urologist.  They have a multidisciplinary approach where all of the doctors discuss your child's care with each other, in addition to with the parents.  This is something I believe is so very important, and sadly lacking in our care in Phoenix.

We really liked Dr. Warf and we are glad we came to see him.  We liked the urologist a lot as well, and the orthopedic surgeon was ok.  Not as pro-standing as I like, but he did suggest putting Madi in daytime AFOs to keep her legs stretched out and her heel cord loose, so this is something I will further discuss with our new orthopedic surgeon, Dr. Goggins.  It's something I have been wondering about, and I am glad to have an opinion about it.  The urologist and neurosurgeon feel that Madi's vesicostomy, while it did solve her problems in the short term, was not what she needed.  He said she really needed the de-tethering surgery last year, and that likely would have solve her bladder issues.  Now that a year has gone by, they aren't sure if the de-tethering surgery will help her bladder at all.  That is a big diss appointment, but we will be praying big and that the de-tethering surgery does reverse her bladder issues (her bladder was great for years and then became spastic).  The fact that she only has one kidney that works also makes her care a little more complex.

Dr. Warf feels that Madis tethering is very by-the-book and warrants a traditional, not a more intensive , surgery.  He said that he has yet to read any research that shows that an intensive surgery leads to a decrease in re-tethering rates or long-term impact on the spine.

So what's the plan?  Well, at this point, we are not sure if we want Dr. Moss, our neurosurgeon, to do the surgery, since he wants to go a more aggressive route.  We also would prefer not to be in Boston for the surgery, since we would be away from home for about 3 weeks or so, and our secondary insurance won't cover out of state surgery.  But, if this is where we need to be, we will absolutely make it work.  Before we decide, we are going to Dr. Shaffron, another neurosurgeon we know and trust in Arizona, to get his opinion.  We may also have him do the surgery, depending on what he says.

Please continue to pray for us as we are still figuring out Madi's surgery and what that will look like, as well as where it will be.  We are very thankful for Dr. Warf's opinion and are so glad we came.  Thank you for keeping us in your thoughts and prayers!!

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