[SuzBerg]

Em had her consult Thursday with the nuerosurgeon. This was supposed to be an appointment just to rule out any spinal issues that might be causing the curvature in her feet. They asked a LOT of questions! I always really hate the medical history questions especially when I’m stressed because I DON”T KNOW the answers most times. I don’t know if there is a family history of neurological issues, I don’t know how old she was when she started to pull up or drank from a cup, half the time I can’t even remember her birth weight and I never know what kind of medications she may have been prenatally exposed to etc. I know they need to ask the questions, I usually just can’t answer them. Anyway - sorry for the rant - back to the appointment. The doc reviewed her CT and Spinal X-ray and then observed Em doing a lot of things; she asked her to walk on her tip toes, hop on one foot, jump, run, she can’t do most of these things really well. Em really tried her best though. Then they examined her and asked some more questions (at least we knew the answers to most of these).

The doctor does feel that she may have an issue with her spine (I guess she didn’t read the memo about this appointment just being “rule-out” appointment). The doctor thinks it is probably a “tethered spine”. Usually they just do an MRI and can diagnose it but because of Emily’s pacemaker she can not have the MRI. So they are going to do a test called a Milagram (anyone ever heard of this?) If the Milagram shows a tethered spine, Em will need to have surgery. We are really hoping that the test comes back negative. If that is the case then Emily will have her foot surgery on the 11th as scheduled.

I was devastated when the doctor said she may need another surgery. I have NEVER cried in a doctors office before, but I got pretty teary. For some reason surgery on her spine really scares me (not as much as heart surgery though and she’s had plenty of those). I am better now! I realize things could be much worse and I will try not to dwell on this or get too upset before we have the results from the milagram.

They originally scheduled the test for Monday morning but on Friday called to reschedule it for Wednesday afternoon (ARGHHHH nothing like having to wait and worry longer).

Any how sorry for the vent. I just feel so bad for my little girl - when does her life get to be easy and how much of this does she have to go through? I also wondered if anyone has ever heard of a tethered spine and what you know about it?

[RavenSong]

I'm so sorry to hear about your little girl's possible spinal problems. I found a great website for you that explains all about Tethered Spinal Cords in children. The address is http://neurosurgery4kids.net/tetheredspinalcord.htm. Hopefully it will answer any questions you may have.

I hope the neuroradiologists will be sedating your daughter for the myelogram. It doesn't hurt a whole lot, but it is uncomfortable. You'll have to make sure she stays flat on her back afterwards for a certain amount of time. The radiologist will tell you for how long. This is because myelograms can cause "spinal headaches" in some people if they assume an upright position too quickly. This type of headache is a real killer...I had one many years ago following a myelogram. It's like a super bad migraine. But the headaches can often be prevented by staying flat on one's back and drinking lots of fluids.

I hope everything goes smoothly for your daughter. I know that you must be frightened for her. The prospect of spinal surgery is never an easy one for parents.

[Lylac]

Suz, I know I sound like a broken record, but Em will be just fine..if she has to have another surgery. I have Faith!!

And I know the thought of her even having another one, is heartbreaking, but just remember, EVERYTHING that you do, is for her and her future.

Your an awesome mom, and Em is just as Blessed to have you, as you are to have her!

[Lylac]

Ok for some reason it wouldn't let me edit my other post.

I was gonna add that "if" she does have a problem..it's much better to deal with it now, than later when it could be much worse.

[SuzBerg]

Raven - THANK YOU so much for your response and the website. (also thanks for spelling myelogram - I was pretty sure I didn't have that right ). She will be sedated for it and they did tell me that headaches could be a side-effect, I'm gald to know that drinking and laying flat can be a precaution we can encourage.

Lylac - Thanks for the peptalk. I have to remember I have Faith and know she'll be allright.

[Mommy24]

Suz, no wisdom here but wanted to let you know that I will be praying for positive results!

[athikers]

Hugs and prayers... another surgery is always initially disappointing cause we don't want to put our kids through this. But, just as Lylac said, it will help her be all she can be and its better to have it now while she is still little.

[crick]

I know you and Em will stand up to the challenge once again and as hard as it is & will be, you will get through this!

Just keep venting and ranting and just hug her til she tells you "Mama, I can't breathe and I want to go play with my Barbies!"

((HUGS))

[kelceesmom]

Suz, again no wisdom here. Just know that we will be thinking of you and pray that everything goes well.

[momraine]

no words of wisdom, but lots of hugs and know that I will be there for you and pray for you guys.