tethered cord??? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > CMTC

Reply
 
Thread Tools Display Modes
  #1  
Old 09-06-2011, 08:22 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default tethered cord???

Has anybody heard of tethered cord or had any experience with it? Becca has a deep dimple above her butt that is getting deeper and someone on the CMTC group on Facebook suggested getting this checked out. If anyone has any knowledge they can share I would appreciate it.
Thanks!
Reply With Quote
  #2  
Old 09-06-2011, 11:19 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,716
Default

Have you been able to have any imaging done yet? Or talked to the doc about what kind of imaging would be needed? Are there any other outward signs (I know often not)?

Missy
Reply With Quote
  #3  
Old 09-07-2011, 12:47 AM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default

We haven't had any imaging done since she was born but at the time they were just ruling out spina bifida. There are several outward signs that could include a dimple. The other thing I found in some of the reading is that a birthmark puts you at a higher risk and it is congenital which wouldn't surprise me with the other issues she has had. Also a low muscle tone but that is hard to know if it is related to CMTC. The image usually done is an MRI. I am going to get through my physical therapy and my appointment with the doctor that did my brain surgery this week and I will schedule an appointment with our family doctor next week. Then we can discuss who to see and if we need to look furhter. She really needs another thyroid test anyway so I can get that done at the same time.
Reply With Quote
  #4  
Old 09-07-2011, 05:55 PM
spaatz1329 spaatz1329 is offline
Junior Member
 
Join Date: Jun 2011
Posts: 27
Default

My daughter has PELVIS syndrome, and a tethered cord is a symptom. It was confirmed by MRI. She is having surgery to release it Oct 21.
Reply With Quote
  #5  
Old 09-07-2011, 06:51 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default

WOW! Keep us posted on how the surgery goes. I would love to know more because I am worried that this is a possibility with Becca. My other daughter had a dimple as a baby but it did grow shut but Becca's is very deep. It actually seems as if it is a hole now with no bottom if that makes sense.
Reply With Quote
  #6  
Old 01-18-2012, 01:23 AM
cbasser cbasser is offline
Junior Member
 
Join Date: Sep 2010
Posts: 12
Default

This is very interesting because my son had a fold at the top of his bum when he was born. They were concerned about spinal bifida but nothing has come of it. He also was showing other symptoms at the time. We had to stay in the hospital 3 days because he wouldn't pee and also there was an issue with nerve response in his genitals. After he finally peed they kicked us out and we never heard anything about it again. The fold has resolved but I wonder how much this type of thing has to do with CMTC?
Reply With Quote
  #7  
Old 01-18-2012, 03:31 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default

I thought Becca was the only CMTC kid with this because I have never read about it anywhere. We still don't have any answers as our doctor doesn't seem to care about it.
Reply With Quote
Reply


Thread Tools
Display Modes

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

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump