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Tethered Cord Syndrome

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!  
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Yes, make sure they test her for related conditions like ehlers-danlos ...Chiari, ICP, POTS...sleep apnea.

  TCS is a condition that does not always show on a MRI so for them to have determined this at this young an age is great.

Having the cord released can be a  help for bladder and bowel issues, however the cord can re attach....

If surgery at this point is needed and if there is nething else that can be done....I want u to know I too have TCS, with the sacral dimple and am in my 50's and no release...I did have the Chiari decompression surgery 5 yrs ago this May....and I am doing better, but I am still contemplating surgery as I am having issues that I can not easily ignore ne more.

Out side ur DD's UTI's how else is she being affected by this condition?
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Avatar universal
Hello All!
Thank you for your encouraging stornies.  I know it has been a while since anyone posted on here, but my daughter (5 months yesterday!) was diagnosed with a tethered cord.  She was born prematurley at 34 weeks on 9/19/13.  She did great in the NICU and was only there 18 days.  She has had 3 urinary tract infections so we started seeing a urologist who noticed her small sacral dimple.  He sent us for the test.  Monday we see the neurosurgeon.  I am so nervous and scared.  She has already been through so much.  Any adivce of questions we should ask at our appointment or anything else we should know?

Thanks!!
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Avatar universal
I just happened upon here but wanted to introduce myself. Our son was not dx'd until October of 2010 at 7 years old. Because he was a preemie and his birth cicumstances he was initially diagnosed with cerebral palsy. He has went through so much and we were shocked when his orthopedist who was getting ready to do his heel cord surgery question TCS and ordered the MRI we saw the Neuro Surgeon almost immediately and he had his release in November 2010. Fast forward his symptoms did not improve and his urodynamics went from bad to worse as well as the constipation was a nightmare and he began having accidents. In August 2011 he had a bladder augmentation with mitofanoff and MACE. He ended up being the 10% to have complications so went spent a month in Kosair and 2 horrible surgeries. I was noticing as was his OT that his balance was worsening, he couldn't bend over and I could not get his feet to neutral (severe toe walker). So in January we went back to the orthopedist who just lengthened his heel cords but ordered a full spine and brain MRI which is next week and we go back to Moriarty on the 28th. She thinks something neurological is going on because of the progression but from what I've read the MRI can't be definative after a release. If we go on symptoms  He's had three surgeries since his release 14 months ago.
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620923 tn?1452915648
COMMUNITY LEADER

  Thank u for the update on Noah....we did have a Prayer thread for him...know we continue to send prayers his way for a smooth recovery : )
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Avatar universal
My son Noah had his tethered cord release surgery Friday.  The surgery went very well.  Dr.  Moriarty was great.   However, Noah has to lay flat for 48 hrs instead of the usual 24.  Dr M said Noah's tissues were thin and fragile which put him at increased risk for a spinal fluid leak.  Which in turn will lengthen our hospital stay.  So far we have had no problems getting him to lay flat, surprisingly.  He is doing great.  Thank you all for your help and support.
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Avatar universal
Thank you all for your encouraging words.  It's a huge help to be able to talk to others who've been through this.

Dr. Moriarty decided to do the surgery because Noah's cord hasn't moved from the L1 position in 3 years.  He has severe chronic constipation (set up infection and put him in the hospital), worsening bladder control at night,  worsening balance (running into things), in toeing, etc...

I'll be so glad when the surgery is over but I dread it at the same time.
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Avatar universal
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.  
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620923 tn?1452915648
COMMUNITY LEADER

  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"

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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  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"
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Avatar universal
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.  
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  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"
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Avatar universal
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.  
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620923 tn?1452915648
COMMUNITY LEADER

  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"
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  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"
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Avatar universal
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.  
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Avatar universal
I hope your son is doing better.  I have learned to never accept what a doc "may think" what is wrong.  My little man just had his yr check up for his surgery.  They just wanted to do his spine but i remember dr. m saying something about water on his brain, too.  So i called and they did both his spine and brain in 1 MRI instead of 2.  Everything came back normal, and he now has a clean bill of health :)
I hope and pray that your son is doing great and I hope his surgery went well.  
Alison
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Avatar universal
Hi Alison,
Selma suggested I check out your post, I am new to the forum. My 1yr old son was recently diagnosed with Tethered Cord and is having sugery for it this summer. From reading all the other posts, I was terrified that he was going to have lifelong excruciating pain and really needed to hear a positive outcome :->

Like you, I always had concern over my son's dimple and was told repeatedly it was nothing to worry about. My boy was born almost 3 months prematurely and was only 1.5 lbs so their excuse was that he was just thin and that when he puts on weight it will go away. Needless to say, it didn't. We finally got so fed up that we went to an Osteopath who noticed it right away and ordered the MRI.

My baby has a bunch of "issues" that we are trying to deal with and handle the best we can, but Tethered Cord is by far the most terrifying! Thank you for giving us hope!

Jami
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620923 tn?1452915648
COMMUNITY LEADER

  Hi...wow, how wonderful to hear a update on ur little guy, I am so happy that all went well...and he is swimming now...fantastic!!

As for the scar, u can try either Aloe vera salve or a coco butter type should help.

I am so happy to hear about his progress : )

"selma"
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Avatar universal
Hi, I know its been almost 10 months now, but he had his surgery on june 25, 2010.  The day before his 2nd b-day.  The surgery went great, although nervous times for us!  The surgery lasted about 5 hours and he stayed medicated (highly) in hospital for 5 days.  He had to lay flat on his stomach and without pillows!  He did excellent, although he did not like the nurses coming in and doing his vitals!  But how sweet they were, they brought him cake and balloons and decorated his room while we were sleeping!  :)  On our last day at hosp.  he had to see the therapist 2x.  the first time at 10 am and he was shaking and wouldn't stand on his feet, wouldn't lay his feet down flat and very whobbly.  the 2nd time at 3pm same day he stood, with help, and wasn't as shaky.  It was truly amazing in such few hours how much he was!  It took him after getting home about 4 days and he was walking on his own again.  I was nervous thinking he would lose his balance but he didn't!  He is now 2.5 and is potty trained and being an active little man!  I am so thankful for this forum, Kosiar Childrens Hospital in Louisville, Ky and for Dr. Moriarty.  The only way knowing my guy has had something done is b/c of his scar on his back.  I have had many people tell me that his scar looks great, although it is about 4 inches.  I didn't know at time of surgery it would be that big but as he grows i think it will disappear in time.  I would like to know if any one knows of any creams for scars that works.  I have heard of mother's , although haven't tried it.  He is in swim lessons now and is doing great.  I never had a 2nd opinion done.  ALthough I will be calling Dr. for his year check up and might demand a new MRi, to make sure everything is good.  WE no longer see the ped. that tald me it will just go away, blah, blah, blah.  I should have gave her some reading material on TCS.  You know i only questioned things before his surgery because of his red, hairy birthmark with the dimple that we could see, many children don't have that and don't find out of TCS until later when they are a little older.  I am so thankful of ped. that we still see to this day who recommended me finally after 18 months to see Dr. Moriarty.  We live very close to Kosair Childrens and they hold a very special place in my heart.  I hope one day I can volunteer there.  I hope i will check this site more often and help, answer or whatever to anyone who may need it.
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Avatar universal
Hi Alison,

I actually went through 2 different offices before getting our son Dx'd. Yes we certainly did change peds offices because when I asked the doctor why when our son was having all of the symptoms plus the "birthmark" why she did not just send him for an MRI , her reply was that it was a very expensive test and she could not send all kids just because they have "birthmarks" in that area. WOW! If your ped does not know alot about TCS but you still like her, then try to offer some printed info to her. IF she is willing to learn more about it then you know she is willing to work with you.
When we found out our second son has Chiari and I was the one that found it on the MRI report and the doc never even mentioned it, she was not very willing to help, and she tried to play down the dx, and that Chiari could not possibly cause all of these symptoms. We are still with the same office but have switched docs, and this one was totally open to any info I was willing to give her.
I am not sure why she thinks that he is too young to have TCS as  it is something they are born with.
I think like Chiari, alot of peds don't know alot about TCS. But a good doc is open to any info and willing to help anyway they can to provide the best care.
Like Selma said trust your mommy radar, it won't steer you wrong.
Many Blessings to you and your little guy!
always happy to listen!
Barb :)
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620923 tn?1452915648
COMMUNITY LEADER
Alison,

I can not tell u if changing drs is right or wrong or a good or bad idea, but I will say I believe u have to have trust in ur dt to be able to be comfortable with following their guidance.
So, if u do not have the confidence, then  u r making the right choice for u and ur child. Having  one myself, I know that I too would be very cautious as I have been with my own care.

Trust ur mother's instincts.

"selma"
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