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Tuesday, March 11, 2014

The Tethered Cord Verdict Is In.... Looking For Advice

Whew, what a day!

This morning we started our trek to Cardon Children's Hospital to meet with Dr. Moss, Madi's neurosurgeon.  He brought up her MRI and reviewed the results.  Her MRI showed significant tethering.  He basically said she was very significantly tethered and absolutely needed surgery.  Although I hate the idea of her going through another surgery, I was praying that it would be a very clear "yes" or "no" to surgery, and am thankful that it was.

Madi's Chiari II malformation looks good.  It's not pulled down too tight, it's not being too compressed, and he doesn't see any problems there.  Yeah! 

Madi has started developing a syrinx at the top of her spina cord, but it's very small, so he's not worried right now.  It's just something we will keep an eye on.  I'm so glad we don't need to deal with one more thing right now. 

In enters the curve ball, though, and this is the tough one.

Dr. Moss is going to try and clean up Madi's scar tissue by de-tethering her as much as he can.  He did tell me, though, he felt he might need to do an aggressive de-tethering.  What does an aggressive de-tethering look like, you ask?  Well, that's the part that is not so pretty.  The neurosurgeon actually goes in and removes the lower part of the spine, the part with nerves that do not function, below the area that does function, to be able to fully free the spine and fully de-tether/release it.  Yikes.  I am so hesitant to do something that is so permanent.  I mean, SO permanent.  On the other hand, though, if she is really significantly tethered, and he can't release her with out it, then we don't know if the surgery will be enough to help her.  Her left leg keeps getting tight, despite standing daily in HKFOs.  Her bladder was looking amazing, then got spastic and she had to have the vesicostomy, which is likely related to tethering, and now her scoliosis, which is for sure related to tethering.  If we chose not to be aggressive, and her scoliosis continues, we are looking at a rodding surgery, in which they will have to then do the aggressive release anyway, because it's the only way they can get the spine fully straight.  If we do the aggressive de-tethering, and one day some new advancement comes along, she wouldn't be a candidate any more.  Dr. Moss doesn't think anything huge is headed our way within the next 20 years, but who knows!  Either way, she will re-tether, but the aggressive surgery leads to less of a chance of needing another detethering surgery, where-as the non-aggressive route may lead to needing another de-tethering surgery, as well as a rodding surgery.  It's such a hard decision.  Not de-tethering aggressively could lead to life-long damage to her spine that cannot be reversed, but aggressively de-tethering takes away future options.  Bleh.  I also have a call in with the urologist to see how the aggressive or regular surgery will impact her bowls and bladder.  I bumped up our appointment with Dr. Segal, our orthopedic surgeon, so he can review her MRI and see how her spine/scoliosis looks in that, versus in the x-ray we took.

Dr. Moss said he won't know what he thinks we need to do until he gets in there.  At that time, he said he would call me (I'll be there, but in the waiting room, so he'd call me in the waiting room), tell me what it looks like, and I'd have to make the call.  I'd either tell him to go ahead with the aggressive detethering if that is what is needed, or to just do what he can and leave the rest, not doing the aggressive surgery. 

I really wish Madi was older and could make this choice for herself.  I really, really wish there were better treatment options, but as far as I know, there are none.  So, David and I have a lot of praying, researching, and talking to other parents that we need to do.  This is a big decision and I really want us to have peace about whatever path we take.  I don't want her to end up needing rods and other de-tethering surgeries, but I don't want to do something permanent either.  It's a lot to process!

Right now I am praying for wisdom and answers.  I'm praying that God will put the right people in our path to help us get direction on how to proceed.  I am also praying that she just plain will not need the aggressive surgery, which would be huge.  I am praying, above all else, that he will get in there and decide he can de-tether her sufficiently without being more aggressive.  Please, please join us for prayer!!

Hospital time will be about 3-5 days as she recovers.  She will have to be flat on her tummy for at least the first 2 days.  There is a good chance we will be in the ICU, but we are used to that.  In fact, I spent the first years of Madi's life not realizing we were always in the ICU.  First it was the NICU and then the PICU, but always the ICU.  Once we made it up to the 8th floor (for seizures), I realized there was such thing of hospital life outside of the ICU :).  Once we are home, she will have a few more weeks of down time before she can resume her regular activity, with either surgery.  Please be praying for quick healing and minimal pain for her.  I explained the surgery to her and asked if she had any questions and her questions were...

1- Will it hurt?  To which I answered that it might, and if so, she needed to tell momma and the nurse so we could get medicine and help her feel better.

2- Will the mask you put on me stink?  To which I answered, probably, sorry baby, but you can ask if they have one that smells better.


3- Will you hold my hand and sing me "twinkle twinkle", which I of course said yes to.

After that, she went off to play again.  As long as she knew the answers to those questions, she felt ok and didn't really worry.  Oh, and the good news is Dr. Moss said we are not in a hurry, so he is ok with waiting until preschool is over in May, so that is when we are looking to book the surgery.  It will likely be the 3rd or 4th week of May.  He also said he will request not to have the last anesthesiologist I had, and also wants to know his name so that he doesn't use him again. 

We are thinking of driving to California in April for a few days and going to LEGOLAND before the surgery.... kinda our last little "hurrah" for a while.  David is doing really well at work again (thank God!!!) and has his confidence (mostly) back, so we should be able to go.  We found one buy-an-adult-admission-get-a-kids-admission-free coupon, so we are hoping to find one more and only have to pay for two adults and one kiddo to get in.

That's all our news for now.  We appreciate your prayers and ask that you will keep sending them our way! 


Andy and Kiara said...

Praying for you right now!

Tristan said...

Jamie, I'm praying! We just got our detethering date for Mason - it's MONDAY. I'm trying to get everyone here at home situated (7 kids at home with daddy while I'm gone with Mason) with groceries, meal plans, etc. I don't know for sure what I would do in your position but I would probably lean toward doing the aggressive detethering now. I think if we had to go in anyway I would want the surgery to be as effective as possible so we wouldn't need to go in for more things later (as much as possible anyway). Praying you get a clear feeling on what to do.