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Off for Dakota's full spinal MRI *results added, post #19!*

post #1 of 37
Thread Starter 
We leave in just a little bit for Dakota's mri. I'm terrified.
I know they'll take good care of her, but I'm just nervous.

It'll be under GA since it's going to take about 1 1/2 hours to do the full mri. They said a Dr will do a quick physical exam to make sure she's healthy enough to undergo GA (this will be the hardest part, she doesn't like people touching her), then I'll take her back and give her a bear hug while they do the gas mask on her. Then when she's totally out, they'll do the IV and I'll leave the room.
When they're done, they'll take her to recovery, do a quick vital sign check, and come get me before she wakes up.

It all sounds fine, but I know she's going to have a really hard time and I just hate putting her though this.

Wish us luck!
post #2 of 37
I hope it goes smoothly and that you're home soon!!!
post #3 of 37
All the best thoughts for Dakota!!!

(((hugs)))

Mary:
post #4 of 37
Thread Starter 
We're home! She did awesome. There were a couple snags, but I'm very proud of her.
post #5 of 37
Thread Starter 
Ok, now I've actually got time to really update.

I was very very impressed with how well she did. It eased a lot of my fear for her.
She let them take her blood pressure, oxygen levels, her temp, listen to her heart/lungs/belly, and feel her belly. All with a smile. I think the thing that helped her the most was they made a point to do it all to her baby doll and to me first to show her it was ok and it was neat and wouldn't hurt her. She still didn't let them look in her ears or mouth, but that's ok.

We went back to the MRI room and she started getting scared. I gave her a big hug while they held the mask on her face. She kept screaming no. She fell asleep after about 60ish seconds and then I left the room and went to the waiting room.
They came out a few minutes later and said she didn't even stir when they did the IV since she was just so out.

They came out a few times during the 2 hours to give me updates and let me know she was doing great and was still asleep.

When she was done, they took her back to her private room, took some vitals, and then came and got me. I laid next to her for about 40 minutes before she started rousing. She woke up for good about 15 minutes later and was freaking out because she had the oxygen mask on. As soon as it was off, she was fine. Then she saw the IV and tried to pull it out. I and two nurses had to pin her down while one nurse got it out.
After they got it out, I scooped her up and just snuggled her close. She, amazingly, told the nurse thank you.

Since she was awake, we were free to go. The nurse walked us out to the car and Dakota said "bye bye, Doctor!". The nurse laughed and goes "I wish!"


I've looked at the CD and it looks like she's got a Syringomyelia on her lumbar portion of her spinal cord that's about 4ish cm long. We'll know for sure when the radiologist reads it though.
post #6 of 37
What is a syringomyelia?

I'm glad she did so well.
post #7 of 37
Thread Starter 
http://asap.org/syringomyelia.html

Quote:
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. For reasons that are only now being understood, cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other words such as cyst, hydromyelia or syringohydromyelia) This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

There are two major types of SM. In most cases it is related to a congenital malformation involving the hindbrain (cerebellum) called a Chiari I Malformation, named after the physician who first described it. This malformation occurs during fetal development and is characterized by downward displacement of the lower part of the brain (cerebellar tonsils) beneath the foramen magnum, into the cervical spinal canal. This displacement blocks the normal flow of cerebrospinal fluid. When normal flow is obstructed, a syrinx can then form in the spinal cord.
post #8 of 37
Oh! ok! I used to know a little girl (under 2) w/ a Chiari Formation.

Can they fix it? Or what? How... I hope I'm not totally rude about it. I just realized that I don't follow much of the other SN families here unless they deal w/ SPD or ASCs. I'm trying to branch out.
post #9 of 37
Thread Starter 
She doesn't have a Chiari that I could tell, but the syrinx could be caused by a tethered cord as well (which I'm suspecting).
With that, they would try to release the cord and hope the spinal fluid flow would return to normal, thus hopefully getting rid of the cavity.
post #10 of 37
Are you trained in interpreting MRIs? I would have no idea what I'm looking at...


I didn't realize one could get a copy of an MRI right away either...



It's great when your kids surprise you isn't it? I'm glad she and you handled this so well.
post #11 of 37
Thread Starter 
Quote:
Originally Posted by starlein26 View Post
Are you trained in interpreting MRIs? I would have no idea what I'm looking at...


I didn't realize one could get a copy of an MRI right away either...



It's great when your kids surprise you isn't it? I'm glad she and you handled this so well.
I know some things to look for. Chiari in particular, since I have it.
Most other things, I look at normal MRI's and compare them.

You just have to request a CD at the time of the MRI and they'll likely give it to you.
post #12 of 37
Glad she handled it so well
post #13 of 37
Quote:
Originally Posted by starlein26 View Post
Are you trained in interpreting MRIs? I would have no idea what I'm looking at...


I didn't realize one could get a copy of an MRI right away either...



It's great when your kids surprise you isn't it? I'm glad she and you handled this so well.
I had this latest one for Gabrielle right then. I asked the nurse if they could burn me a copy and she said sure. She made three copies for me.

Then I asked when it would be interpeted and she said in a couple of hours. Well in the meantime I had to go to medical records at the main hospital. They already had the interpetation done! So I got it right away.

Kids are amazing. They seem to bounce back so easy. Its the Parents that have a hard time.
post #14 of 37
I'm glad the MRI went so smoothly! And those CDs are sure great, aren't they? Much more portable than giant films.

My 11-yr old has syringomyelia; her syrinx extends the length of her spinal cord from mid-thorax on down. But as hard as they've tried to find a cause, they've come up empty-handed. No Chiari, no tethered cord, no nothin'! Very odd.

Will you get the radiologist's report soon?

Joni and kids, incl. Michaela :, 11, funky spinal cord, and Gabe :, 9, autism and Down syn.
post #15 of 37
Kathryn and Dakota.
post #16 of 37
Thread Starter 
Quote:
Originally Posted by jondee0 View Post
I'm glad the MRI went so smoothly! And those CDs are sure great, aren't they? Much more portable than giant films.

My 11-yr old has syringomyelia; her syrinx extends the length of her spinal cord from mid-thorax on down. But as hard as they've tried to find a cause, they've come up empty-handed. No Chiari, no tethered cord, no nothin'! Very odd.

Will you get the radiologist's report soon?

Joni and kids, incl. Michaela :, 11, funky spinal cord, and Gabe :, 9, autism and Down syn.
I'm hoping we'll have it by Monday.
post #17 of 37
Joining the discussion late (I'm new).

My son has ACM (Type I) he was diagnosed as an infant. He developed hydro and neurological issues because of the ACM - but they generally resolved once the pressure was relieved. He was also tested for TC, but it was inconclusive and he will be returning for another MRI.

Just wanted to speak up and let you know you're not alone, sending lots of :
post #18 of 37
Just adding hugs. Also, you may be able to call the doctor and ask for the wet read, or preliminary MRI report. They're usually pretty accurate.
post #19 of 37
Thread Starter 
Ok, so we got the results and they're not good.

She has a low laying cord and a fatty film build up on one of her vertebrae. Her pediatrician put a call into the best pediatric neurosurgeon here to see what he thinks and see if she needs to be seen.

I KNEW something wasn't right. I'm so happy they saw something too, but I'm depressed about this at the same time.

Katwrangler, do you know what the fatty build up means? Is there any situation where it wouldn't need to be operated on?
post #20 of 37
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