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  • Baby with tethered spinal cord

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    Old 02-16-2006, 06:50 AM   #1
    elissamercado
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    Question Baby with tethered spinal cord

    I just found out that my 2 month old baby has a tethered spinal cord. The nuerosurgeon needs an MRI to see the extent of the disorder and whether there are any other complications. I was wondering if anyone has any knowledge or personal experience with this...I am really looking for someone to discuss this with. All I have so far is info from medical sites and would like a personal point of view. I'm extremely nervous and just want to hear from someone who has been through this or knows someone who has...thanks

     
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    Old 02-16-2006, 08:47 AM   #2
    overworked mom
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    Re: Baby with tethered spinal cord

    Quote:
    Originally Posted by elissamercado
    I just found out that my 2 month old baby has a tethered spinal cord. The nuerosurgeon needs an MRI to see the extent of the disorder and whether there are any other complications. I was wondering if anyone has any knowledge or personal experience with this...I am really looking for someone to discuss this with. All I have so far is info from medical sites and would like a personal point of view. I'm extremely nervous and just want to hear from someone who has been through this or knows someone who has...thanks
    Hello, elissamercado
    I am going though this with my 3yr.old. He has spinia bifida and caudal regression. his dr. needs this done it takes about 2 to 3 hrs. for this test. They will put the baby to sleep for it, so make sure the baby doesn't have a cold that day. They will listen to lungs, if any thing is there they will cancel it. I hope this helps you.
    overworked mom

     
    Old 02-17-2006, 06:36 AM   #3
    elissamercado
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    Re: Baby with tethered spinal cord

    Thanks for the reply. I am so worried about what I don't know yet. I can't help but worry about the worst possible news. The doctor only told me "tethered spinal cord"...so when I say "spina bifida" on the insurance authorization form I freaked. I had no idea that was an actual form of spina bifida. This is crazy. I just hope every day that goes by without this surgery doesn't cause any more damage...

     
    Old 02-24-2006, 10:17 AM   #4
    elissamercado
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    Unhappy MRI results

    Well, we got the results and she has sacral spinal dysraphism (spina bifida occulta?), lipomeningocele in the conus (fatty tissue mass in the bottom of her spinal cord?), tethered cord (all of these 3 are at L4-L5), syrinx at L2 (fluid filled mass?), and a decreased signal at T1-T2 with skin thickening over the area. The reason there are so many ?s is that the Dr. hasn't seen the results yet and hasn't explained them to me...I was luckily able to get a copy of the report from the radiologist. Any info from anyone about any of these would be great...i.e. how serious....prognosis...your own experience with any of them. Also, for anyone who went through the surgery, do you know if they flip her at all...from back to belly and vice versa? Or does she stay in one position for 3 days? Thanks again...sorry for so many ?s...

     
    Old 02-24-2006, 11:34 AM   #5
    overworked mom
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    Thumbs up Re: Baby with tethered spinal cord

    I am glad you baby has had the MRI test. My son has Meningocele with Hydrocephalus. Will not know about teetered cord until March. I found most of my info. about SB at [url]www.sbaa.org[/url] .You should check it they have alot of info. Also ask your dr. about latex percautions especially during surgery.
    You didn't say when your appt. was for your child is? If you don't have one call the drs. office and see when it is. Lots of luck we will have you in our prays.

    Last edited by overworked mom; 02-24-2006 at 11:36 AM.

     
    Old 02-24-2006, 12:18 PM   #6
    elissamercado
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    Re: Baby with tethered spinal cord

    Thank you for your prayers...can use all we can get! Appt. isn't until March 21st...not happy about that...wish it were sooner. I would like the surgery before then...asap! when did your son have his surgery?

     
    Old 03-06-2006, 05:47 PM   #7
    overworked mom
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    Talking Re: Baby with tethered spinal cord

    My son had his spinal closer down when he was 1day old. We just went for his MRI on friday.everything went off so, easy for him, waiting on the dr. now. Not worried he his one of the best in his field. Got to go for now, his diper needs changed. Good luck with your child, you and your baby will be in our prays.

     
    Old 03-08-2006, 12:29 PM   #8
    overworked mom
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    Wink Re: Baby with tethered spinal cord

    I heard from the doctor today, my son does have a thethered cord. They are setting up more test first with checking bladder, ortho, for scorolis. From what I've read about the surg. it takes 4 to 6 hrs. then they are in NICU 4 to 5 days. They will have to lay still for 72hrs. I am not really that scared for him the dr. that will do his surg. has taken care of him when he was 1 week old, he did his shunt surg. I hope this will help you some. The tumor you talked about on her could be a cyst.

    Last edited by moderator2; 09-12-2006 at 05:23 PM. Reason: to close this thread due to inactivity over thirty days

     
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