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!  

[bogeybearsmom]

my sons surgery took about 5 hours, and he was in hospital for 5 days.  He was highly medicated which kept him lying down.  He didn't try to get out of hospital crib at all.  Actually when he was released from hospital, they gave me his prescriptions and when i went to pick them up the pharmacist said that the medicine (Baclofen) was too high of a dose for him, so i had her call the doc at hospital and it was correct.  They gave him 2 pain meds, one was bacolfen and the other i think was a hydrocodone.  Now he was 2 yrs.old so it was ALOT of meds but a dosage for his age.  believe me, he won't want to get up.  I was nervous/wondering how they would keep my son lying flat, but they did.  It is heartbreaking to see your baby go through all this but in the end all worth it,  when the surgeon comes out to talk with you after surgery and tells you everything went as planned is the biggest relief, I cried happy tears.  God bless your son, I pray everything goes better as planned.  also questions come to us at different times, just write them all down, that way u have a list.  I had anther list for dr. M during post-op too.  

[selmaS]

  We can never assume and we can never be prepared with questions, as we never know what we will be told, so u can not have the right questions handy.....the thing is to gather up ur questions and call the Dr back to get them answered just like u did : )

U r right u can't really prepare them for it, or  for the post op....all we can do is take  it a day at a time..and learn all we can about the condition...and know we r here for u to try and answer ne questions we can.

  Did this Dr happen to say y he felt surgery was necessary at this time?

    "selma"

[Cynthum]

Thank you.  My son's name is Noah, and he is 7.  When we saw the surgeon I just knew that he would not require surgery so I was completely unprepared.  I had no questions.  We saw him 3 yrs prior and he didn't reccomend surgery at that time, so I just assumed.  We will not see the surgeon again until surgery.  I have called the office and asked lots of questions.  They are very helpful.  These are the new ones I've thought of., and I'm sure the list will continue to grow.  I just don't know how one could prepare for this or any surgery on our little ones.

[selmaS]

  HI...u have a surgery date now....wow, it creeps up fast huh?

Ur NS should have clued u in on all of this, as far as how long a typical surgery lasts...u would have to ask the surgeon how long it normally takes him, keeping in mind, it may take longer depending on what they find when they go in....it is like ne surgery in that regard.

Keeping him flat should not be difficult as he will be sedated.....the meds, and  how he feels...mostly tired...so he will sleep a lot in that 24 hour period....

And how long he is in the hospital all depends on how he responds to meds and the surgery...we r all different...so, the Dr may say 4 days give or take....could be more....each Dr and hospital have diff guidelines they follow, then u have the ins comp with their 2 cents in and that is what determines how long a stay it might be, but it always depends on how ur little guy does.

Please post his name so we can add him to a prayer thread.....

  "selma"

[Cynthum]

My son is having his detethering surgery next Fri (1/27).  He had a brain scan on the 19th and everything was normal there.  I am nervous about the upcoming surgery.   My heart breaks over the fact he has to go through this.  How long does the surgery normally take?  How will they ever keep him flat for the required 24 hrs?  How long will he be in the hospital?  Are just a few of the many questions running through my head.  

[bogeybearsmom]

Hi there, I too was a nervous when it came close to my son's surgery.  Everything went well, and Kosair and Moriarty are very good.  He will answer any of your questions, and all of what i had asked him about, before, during and after have all been how he said it would be....everything is fine, and you can't even tell besides the scar.  I would get surgery done soon, so that your son doesn't get any more symptoms.   Request a new brain scan too if that would make u feel better.  Stay on these docs, its their job to work with us. I hope everyhting goes well, ur with the best ped. neurologist!!!!  From my research, spina bifida occulta and TCS are very similar, like cousins to one another.  Retethering is very slim, can happen but most likely not.