Round 3.... The BIG News From Our Third Opinion

Well, today went a totally different way than I expected, but in a good way! 

Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone.  He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name.  He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.

Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years.  He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes.  He also said her spine does not have the classic look of one with significant scoliosis.  He could see both side of the spine, and the nerves were straight and not twisted around the spine at all.  He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.

I asked his take on surgery, as well as the approach he would recommend.  He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery.  He said he feels like we need to get further x-rays to study her scoliosis.  He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her.  He said they usually watch the spine carefully by using the same test and watch for change.  He said since we don't have a baseline, we don't really even know if there is a change.  He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well.  He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does.  He also does not recommend an aggressive surgery when the time comes to de-tether her.  He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs.  Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent.  That was music to my ears!!

Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views.  Next we will determine where her spine really is at.  At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach.  Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then. 

Thanks so much for praying for our family.  Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis.  I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix.  I am so thankful for the answers we got today!!
 

Our Neurosurgeon Report from Today

Today we had a neurosurgeon appointment down at Cardon Children's Hospital with Dr. Moss.  We reviewed Ramya's MRI scan from 6 months ago (endocrinology wanted a sedated MRI due to her early puberty, so we had Dr. Moss send in orders for a full spina MRI so that we could coordinate, even though we didn't need the MRI quite yet.  It's always nice to have one instead of two!!).  Ramya's spine is tethered, as we would expect since she has had spinal surgery, but because she is not symptomatic we are not looking at doing surgery to release it.  She has a Chiari II malformation as well, as we expected, but fluid is able to flow around it (her brain stem ;)), and she doesn't have any chiari symptoms, so we are not going to do anything in that area either.  Her pituitary gland looks like something is putting pressure on it, but she does not have any cysts and the fluid levels in her ventricles look good, so he's not quite sure why.  It may be the reason she started going in to early puberty, but there is really no way to know.  So basically, lots of things we expected and nothing that we didn't, no need for surgery, and we don't need another appointment for a year, so I count that as a win!  Yeah!

After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done.  I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid.  My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range.  I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers.  He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid.  Everything came back negative, so I have nothing underlying going on, which is great!  My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me.  Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down.  Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time.  All of those combined makes it tough!  I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight.  I've been hovering around this number for quite a while.  I just started yoga and I am hoping that will help.  I'm starting to feel healthier, which is my goal, and for that, I am thankful!

On a totally unrelated topic, next week is Madi's last week of preschool.  The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week.  The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate.  I can't believe the school year is almost over for her.  Next year she will officially be a homeschooling kindergartener!  I can't wait!!

Please be praying for our upcoming trip to Boston.  We are praying that we get answers on HOW to proceed with Madi's detethering surgery.  Thank you for your love and prayers!

 

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.

and

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! 

My little gal is one smart cookie!

Today we saw Dr. Teodori, Madi's neurologist, at Phoenix Children's Hospital.  She gave Madi a thorough examination and is pleased with the results.  She agrees that Madi is one bright and shining little girl.  She said she is doing remarkably well considering all that she is dealing with.  We went over her latest MRI closely and discussed what we saw.  Madi has a corpus callosum, however it is thinner than normal and is missing at the tail-end.  Other parts of the brain can make up for it, so at this point, we aren't terribly worried.  One of her ventricles is fuller than the other which is pretty typical.  The side that is not shunted has more fluid than the shunted side.  We actually already knew this from talking with Dr. Moss a few months earlier.  She showed us what, specifically, her Chiari II malformation looked like and discussed what that meant with us.  Although we can never know what the future holds, things are looking good for now.  Madi is progressing well and we are just taking things one day, one appointment, and one test at a time.  Madi has a lot of people who love her, and she is a very blessed little girl!  We know she will continue to thrive despite her circumstances.  Heck, she is just as stubborn as we are!