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

Forum Jump: 
Reply
 
Thread Tools
#1 of 37 Old 08-26-2008, 08:44 AM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#2 of 37 Old 08-26-2008, 08:53 AM
 
irangel's Avatar
 
Join Date: Aug 2005
Posts: 2,160
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I hope it goes smoothly and that you're home soon!!!
irangel is offline  
#3 of 37 Old 08-26-2008, 08:58 AM
 
newmothermary's Avatar
 
Join Date: Jan 2007
Location: NYC Baby!
Posts: 847
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
All the best thoughts for Dakota!!!

(((hugs)))

Mary:

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
newmothermary is offline  
#4 of 37 Old 08-26-2008, 01:27 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We're home! She did awesome. There were a couple snags, but I'm very proud of her.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#5 of 37 Old 08-26-2008, 03:44 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#6 of 37 Old 08-26-2008, 04:39 PM
 
HarperRose's Avatar
 
Join Date: Feb 2007
Location: In my own little world
Posts: 10,819
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
What is a syringomyelia?

I'm glad she did so well.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

HarperRose is offline  
#7 of 37 Old 08-26-2008, 04:42 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#8 of 37 Old 08-26-2008, 06:59 PM
 
HarperRose's Avatar
 
Join Date: Feb 2007
Location: In my own little world
Posts: 10,819
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

HarperRose is offline  
#9 of 37 Old 08-26-2008, 07:04 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#10 of 37 Old 08-26-2008, 07:14 PM
 
starlein26's Avatar
 
Join Date: Apr 2004
Posts: 5,912
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
starlein26 is offline  
#11 of 37 Old 08-26-2008, 07:15 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#12 of 37 Old 08-26-2008, 09:14 PM
Banned
 
MillingNome's Avatar
 
Join Date: Nov 2005
Location: hunting in Gilead
Posts: 6,399
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Glad she handled it so well
MillingNome is offline  
#13 of 37 Old 08-26-2008, 09:21 PM
 
KatWrangler's Avatar
 
Join Date: Mar 2005
Location: Affton, MO
Posts: 11,097
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

KatWrangler is offline  
#14 of 37 Old 08-27-2008, 01:23 PM
 
jondee0's Avatar
 
Join Date: Mar 2004
Posts: 239
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
jondee0 is offline  
#15 of 37 Old 08-27-2008, 01:35 PM
 
mamaverdi's Avatar
 
Join Date: Apr 2005
Location: Texas
Posts: 12,872
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Kathryn and Dakota.
mamaverdi is offline  
#16 of 37 Old 08-27-2008, 02:38 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#17 of 37 Old 08-28-2008, 01:24 AM
 
calgrowing's Avatar
 
Join Date: Aug 2008
Posts: 17
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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 :
calgrowing is offline  
#18 of 37 Old 08-28-2008, 02:45 AM
 
3_opihi's Avatar
 
Join Date: Jan 2003
Location: home
Posts: 3,803
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
3_opihi is offline  
#19 of 37 Old 09-02-2008, 03:32 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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?

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#20 of 37 Old 09-02-2008, 04:03 PM
 
lotusdebi's Avatar
 
Join Date: Aug 2002
Location: Facebook
Posts: 6,653
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

You can find me on Facebook. PM for info.
lotusdebi is offline  
#21 of 37 Old 09-02-2008, 04:30 PM
 
QueenOfTheMeadow's Avatar
 
Join Date: Mar 2005
Location: with the wildlife
Posts: 18,210
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 8 Post(s)

 
QueenOfTheMeadow is offline  
#22 of 37 Old 09-02-2008, 05:18 PM
 
KatWrangler's Avatar
 
Join Date: Mar 2005
Location: Affton, MO
Posts: 11,097
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Yes, you definately need a Neurosurgeon. Here is a good explaination of a fatty filum. Which is a tethered spinal cord.

http://dragonkites.blogspot.com/2008...tty-filum.html

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

KatWrangler is offline  
#23 of 37 Old 09-02-2008, 05:27 PM
 
my3peanuts's Avatar
 
Join Date: Nov 2006
Location: Northwest MN
Posts: 2,647
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
my3peanuts is offline  
#24 of 37 Old 09-02-2008, 05:30 PM
 
KatWrangler's Avatar
 
Join Date: Mar 2005
Location: Affton, MO
Posts: 11,097
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Let me look up Gabrielle's MRI Radiology report for her first one. Delaney is crying, so I will be back in a bit.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

KatWrangler is offline  
#25 of 37 Old 09-02-2008, 07:11 PM - Thread Starter
 
Kathryn's Avatar
 
Join Date: Oct 2004
Location: Colorado
Posts: 6,366
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Ok, so now I'm pissed and confused.

They NS talked to the pedi and said it was totally normal and she didn't need to see him or ever get another MRI.
I said "What about the syrinx?" She said he didn't say anything about that. I said "What about the fat and low laying cord?". She said he said it is a 'variation of normal'.

So, I'm going to send her films to the neurosurgeons at John Hopkins. If *they* say it's normal, I'll believe it. I don't believe this guy.

I just can't believe that he would totally ignore the syrinx in the first place and then write off the other two things.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
Kathryn is offline  
#26 of 37 Old 09-02-2008, 09:16 PM
 
OMama's Avatar
 
Join Date: Feb 2005
Location: in the moment
Posts: 1,935
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Definitely get another opinion.

When it came to Finn's condition, we had neurosurgeons tell us very different things from: don't operate, to operate, to maybe you could operate. It was nerve wracking beyond belief. I remember feeling really angry too. And these were supposedly some of the best pediatric neurosurgeons around! So frustrating!

I hope you get some good, clear answers when it comes to the second opinion.

Amazing Mama Birth Services
CD(DONA) and Birthing From Within Mentor and Birth Doula
OMama is offline  
#27 of 37 Old 09-03-2008, 02:31 AM
 
3_opihi's Avatar
 
Join Date: Jan 2003
Location: home
Posts: 3,803
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I actually work for a neurosurgeon, so here is my take:

It could be a variation of normal, it could be outside the variation of normal but not worth surgery, it could be surgical. If you are worried, get a second opinion.

A lot depends on if there is disc degeneration or pressure on the cerebellum. If not, then I would take a more wait and see approach, it is not an easy or fun surgery by any means.
3_opihi is offline  
#28 of 37 Old 09-03-2008, 01:24 PM
 
sunflowers's Avatar
 
Join Date: Sep 2006
Posts: 2,140
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I don't know anything about a tethered spinal cord but my dd does have a Chiari I with syrinx's. She also has a large"ish" pocket of CSF near the optical portion of her brain but they consider that within the "normal" spectrum.

I hope it all comes together for your dd and I am glad you're sending the disc for a second opinion. I hope that gives you a piece of mind or a plan of action.
sunflowers is offline  
#29 of 37 Old 09-03-2008, 04:47 PM
 
elmh23's Avatar
 
Join Date: Jul 2004
Location: Where it's hot!
Posts: 9,359
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Mama of three.
 
elmh23 is offline  
#30 of 37 Old 09-03-2008, 06:03 PM
 
judejude's Avatar
 
Join Date: Jul 2005
Location: Bloomington, MN
Posts: 1,421
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by KatWrangler View Post
Yes, you definately need a Neurosurgeon. Here is a good explaination of a fatty filum. Which is a tethered spinal cord.

http://dragonkites.blogspot.com/2008...tty-filum.html

Well now since you said it is a tethered cord I know what you are talking about more. DD has a non-symptomatic tethered cord.

Me : , husband ,daughter Raven : 10-28-95 :
judejude is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off