Tethered Cord Syndrome

[bogeybearsmom]

Hi, my son was born with a sacral dimple on lower spine with a small pin mark in the middle of it.  The is also another red birth mark right above it with tufts of hair.  He is now 23 months old.  When he was 4 months old we had a MRI done and it came back as NOT a tethered cord.  I stayed on his ped. every time we went and she kept telling me that it was a cluster of blood vessels and will go away.  On his 18 month check up we saw a different doc in the same group and she didn't like the looks of it and referred us to a neurosurgeon.  MRi done at 22 months shows a tethered spinal cord.  We are now having the surgery done this Friday.  I have received the orders from doc and it states that the procedure is a meningocele repair.  So is this the same as a tethered spinal cord? And if anyone who knows someone who has had this surgery, how is the recovery? And are there more surgeries that he will need in the furture?  Does it ever reattach?  I am worried about it because he is an active 2 year old and shows no signs of a tethered cord, how am I supposed to keep him calm and relaxed for this to heal.  Dr. Moriarty is performing his surgery.  Has anyone had surgery done by him for this? Everything I read has all been positive about him.  If parents question something with their children and you don't think your getting the answers you need, have them refer to specialist.  I trusted my sons ped and I wish she would have referred months ago.Hindsight is 20/20.  Any info would be great!  Thanks and God Bless!  

[selmaS]

  I would suggest a new Brain MRI, with TC it is constantly pulling down on the brain stem and it may be a totally diff situation in there now!

I never heard of TC re tethering being slim...most will tell u it is a possibility...and if u have EDS it is a higher possibility...and y I mentioned it, he should be checked prior to surgery...as this condition can affect the outcome and recovery.

  "selma"

[Cynthum]

Thanks for your response Selma.  He has not been diagnosed with eds, although they believe he has some genetic condition.  They just aren't sure what.  The dr did said the chance of it retethering was very slim.  His brain scan from 3 years ago was normal.  The symptoms are chronic constipation (3 impactions, 1 so serious he was hospitalized for 5 days), clumsiness, in toeing, night wetting, muscle weakness, and scoliosis.  

[selmaS]

  Hi and welcome to the Chiari forum.

I also have TC but never had the surgery, but we all have different degrees of issues with each condition....

I would ask u if ur DS also has Ehlers-Danlos in addition as this can dictate how he will heal and if surgery may need to be redone in the future bcuz it can re-tether from scar tissue.

What symptoms does ur DS present now?...does he also have chiari?

       "selma"

[Cynthum]

My son (7) is getting ready to have this surgery with Dr. Moriarty at Kosair.  I am VERY nervous.  I just don't know what to expect.  It took over 3 yrs and 4 doctors for me to convince them to do an MRI on my son.  He had a very deep sacral dimple.  Shriner's told me the dimple was too low to effect his spine.  Once they finally did the MRI they found he has spina bifida occulta and the tethered cord.  When we first saw Dr. Moriarty he said that my son didn't need surgery.  After 3 years the neurologist recommended another MRI and Dr. Moriarty informed us that my sons cord hasn't moved.  It is still fixed at L1 and he is showing symptoms.  He would have to have the surgery.  He said he wouldn't feel comfortable letting it go any further.  He said another 2 years and he wouldn't be able to walk or control his bodily functions.

Any words of wisdom would be greatly appreciated.

[selmaS]

  Glad to hear from u again : )

  A square huh?...lol....Sounds like he is growing ok,......so good to hear a good report for a post op  appointment.

  I hope u keep us posted on his progress : )

    "selma"

[bogeybearsmom]

I said in last post "my little guy" well really he isn't so little.  He was 10lbs., 4 ozs. 22 in. when born and at his 3 year check up he is now 39 lbs. and 39 in.  He is a square, lol.