PW: I am almost 100% sure she has tethered cord :(

emmyloustu

After our appt with the neurosurgeon on Thurs, I am almost positive she has a tethered cord. He pointed out things during the physical exam that we honestly never noticed and sure enough they are all more symptoms of tethered cord.

Her running list of known symptoms:

sacral dimple

hemangioma at site of dimple and spreading to anus

assymetric gluteal cleft - basically, a crooked butt crack

abnormalities of 2nd toe on both feet

I also don't think he would order this MRI under sedation without being highly suspicious himself. 

I am scared to death - the surgery is long and invasive and the possibility of irreversible neurological/nerve damage is very real.

Still trying to take it one step at a time and to breathe, but I am also preparing myself for bad news after the MRI in January.

Man, when it rains it pours lately! 

brideinOC

Big hugs to you!  We're all here for you!

TheSkimmy

I'm so sorry!! I am behind- was she born with this?

Mr.&MrsS

Ugh, I am so so sorry! You and your family are in my thoughts and prayers.

firsttogo

This is so scary for you, and probably making it hard to enjoy the holidays coming up knowing this is right after. Hang in there, and hopefully you will get answers soon.

PhillySue

I am so sorry that must be so scary. My cousin's daughter had surgery for a tethered cord and she recovered very quickly and is doing fantastic. They were able to fix the cord and she had no adverse effects. I hope you get good new in January.

emmyloustu

TheSkimmy:

I'm so sorry!! I am behind- was she born with this?

Thanks! Yes, it is a birth defect. She was born with the dimple on her bum and it was flagged as suspicious in the hospital and they did a spinal ultrasound. The u/s was read to be normal at the time, but now the neurosurgeon feels a mistake was made and it should have been read as abnormal with follow up u/s needed. We assume her crack was crooked and her toes were abnormal since birth too, but we never really noticed or thought that it could mean something was wrong. 

The birthmark developed when she was a few weeks old and we were told it was just a mark, but it has been bleeding recently so our pedi sent us to a dermatologist. The derm sent us for another u/s when she saw it and that was inconclusive so that is how we ended up at the neurosurgeon.

That is the long and short of it, anyway!

emmyloustu

PhillySue:

I am so sorry that must be so scary. My cousin's daughter had surgery for a tethered cord and she recovered very quickly and is doing fantastic. They were able to fix the cord and she had no adverse effects. I hope you get good new in January.

Thanks for sharing!! That is great news!! Another SAIFer has a cousin who has been through it to and she emailed me and her son is doing awesome as well! So that all makes me hopeful. 

TheSkimmy

emmyloustu:

TheSkimmy:

I'm so sorry!! I am behind- was she born with this?

Thanks! Yes, it is a birth defect. She was born with the dimple on her bum and it was flagged as suspicious in the hospital and they did a spinal ultrasound. The u/s was read to be normal at the time, but now the neurosurgeon feels a mistake was made and it should have been read as abnormal with follow up u/s needed. We assume her crack was crooked and her toes were abnormal since birth too, but we never really noticed or thought that it could mean something was wrong. 

The birthmark developed when she was a few weeks old and we were told it was just a mark, but it has been bleeding recently so our pedi sent us to a dermatologist. The derm sent us for another u/s when she saw it and that was inconclusive so that is how we ended up at the neurosurgeon.

That is the long and short of it, anyway!

wow I've never heard of these- thank you for explaining it! Hugs!!

perry7285

i'm so sorry you're dealing with this, you must be terrified. sending T&Ps.

dana316

(((Hugs)))

I'm so sorry you guys are going through this...I will keep Eliza in my prayers.

 

Assembly_Reqd

Nate has a wonky "Y" shaped butt crack and his second/third toes are slightly syndactyl (sp?). His chromsome deletion also has tethered cord listed as a possible diagnosis. With all his "markers", he does NOT have a tethered cord. I know it is hard, but try not to worry about something until you really have to worry. Right now it is just wasted energy and sleep. (hugs)

I hope you get good news when you do the MRI. It is really easy and Nate recovered very quickly from the sedation. Good Luck!

Temp848906437505510

Oh, Em, I'm sorry!!  But, take it one step at a time and see what the MRI shows....I know, easy for me to say....

leslie&brian

You need to catch a break!! I'm sorry that you're going through so much right now. ((hugs))

ela81

Man, I just want to give you a big hug. I will be praying for best case scenario. I know it must really suck having to wait for answers. Your beautiful girl, you and your dh will be in my thoughts and prayers. (((big hugs)))

I love your siggy!!!! Your dd is adorable!!! I love daddy/daughter pics:)

cowgirltn

My prayers are with you.