how often is tethered cord missed by radiologists?

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

how often is tethered cord missed by radiologists?

Postby hhhhhmom » Mon Jul 02, 2007 10:42 pm

Hi,

I'm just curious about how many people have been told they don't have tethered cord when they actually do. Our nsg said a lot of my son's symptoms would be consistent with tethered cord but wouldn't they have caught this with a l-spine mri?

Thanks, Laura
hhhhhmom
 

Postby lovemyblessings » Tue Jul 03, 2007 10:47 am

So if the radiologist misses it, will a good NSG catch it?
User avatar
lovemyblessings
 
Posts: 218
Joined: Sun Jul 01, 2007 2:27 pm

Postby Gracie Rose » Tue Jul 03, 2007 11:30 pm

They may miss it or it may not be able to be seen. If it's a tight filum it may have little in radiological evidence.

Mine was no where to be seen on MRI but was totally tethered with no CSF flow at all at the bottom of the cord.

It can be diagnosed by symptoms and some tests i.e SSEP on the legs, urodynamics testing, etc.

Lisa in WA
Gracie Rose
 
Posts: 127
Joined: Wed May 30, 2007 1:02 am

Postby sweettartgirl » Wed Jul 04, 2007 1:30 am

Unfortunatley, it seems to happen a lot. Recently, SOME doctors are realizing that a tethered cord might not neccesarily show up on MRI's. So, some doctors are redefining how they are diagnosing it. Big factors include symptoms, a urodynamics study, and they also look for Chiari and especially spina bifida (occulta too). They might also do an EMG to look for damage around where the cord would be tethered.

Personally, I had this problem. The TCI docs dxd me this way and then we needed a more local nsg (insurance problems) who lucky for us is a top TCS expert and a great peds nsg. We went to her with this diagnosis and she was extremely unsure even though all of TCI's testing pointed towrads it. She did a few of her own tests which also pointed toward it soshe decided to do the surgery (to much of my pleading with her for help) although she told us several times that there were NO guarantees and that this was the most unsure case she'd ever done (again even with the spina bifida she found, the pos. emg, etc). So, she did it and when I got out of surgery she told my mom and I (apparantley me several times as I kept asking how it went) that it was the worst TCS she'd ever seen - which was saying a lot because she's one of the top experts in it. She said my cord was as tight as a rubber band and she had a hard time grabbing it with her tools because it was pulled so tight - and a normal person's filum is 1mm thick - mine was 4mm thick.

There are many good nsgs, however even a "good" nsg may miss it - it needs to be one who is good specifically at what they are looking for.

Laura
sweettartgirl
 
Posts: 80
Joined: Fri May 18, 2007 12:02 am

Postby kmjofga » Wed Jul 04, 2007 2:20 am

My TC was missed for over 40 years. Even after my MRI that plainly showed it and other malfomations of my spinal cord, I was told I had everything from cancer, my cord was too short, and that I did not have SM at all.

It was not until I actually had a qualified NS and NL that actually could see what was wrong. Heck.. I could see the syrinx, the ball of nerve endings, and how it was stretched nearly to my tail bone.

Yesterday I fired my gastro after he dismissed my abnormal blood work as not taking enough vitamins. ie He was too busy to take his time and do his job right and his staff did not update my records. (This week I was dignosed with one of a few autoimmune disease(s). )

It is sad that good doctors fall into the failings that all of us do at times.
kmjofga
 
Posts: 142
Joined: Tue Jun 05, 2007 9:59 pm

Postby Fraggle Nan » Wed Jul 04, 2007 8:11 am

When the tethered cord doesn't show up on the images, it is considered Occult Tethered Cord.

It is shameful that most doctors want to see it in black and white before one is diagnosed.

I have occult tethered cord and will be having the surgery 24th of July.

Nan
Fraggle Nan
 
Posts: 193
Joined: Thu May 17, 2007 6:43 am


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 7 guests