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]

Hi and welcome to the Chiari forum.

I am so sorry ur little guy is going thru this especially at that age...so young and no way for him to understand.

TC can be difficult to spot on MRI even with the precursor nods from the dimple and tuffs of hair.Is he having bladder issues?

My one friend has had the surgery, she is a grown woman and it can be painful as with ne surgery.I was scheduled for it last May and 1 week b4 it was changed to a PFD for chiari....I was told I still need to have it done, but I am not rushing into it at this time as I was still recovering from the other surgery.

Yes it is possible to need to have the surgery repeated as scar tissue can cause the cord to reattach......

May I ask y if he has no symptoms is he having this surgery? What reasons did the dr give u?...I am curious as it could be for a valid reason that I am not aware of....it is possible it is putting pressure on some nerves ect.....

I have seen the name b4, but not sure where or y.....but having a dr u r comfortable with is very important I am glad u feel this way with ur son's dr.

Meningocele
The least common form of spina bifida is a posterior meningocele (or meningeal cyst).
In a posterior meningocele, the vertebrae develop normally, however the meninges are forced into the gaps between the vertebrae. As the nervous system remains undamaged, individuals with meningocele are unlikely to suffer long-term health problems, although there are reports of tethered cord. Causes of meningocele include teratoma and other tumors of the sacrococcyx and of the presacral space, and Currarino syndrome, Bony defect with outpouching of meninges.

The list of signs and symptoms mentioned in various sources for Sacral defect and anterior sacral meningocele includes the 8 symptoms listed below:

Myelomeningocele
Abnormal tailbone development
Anal anomaly
Enlarged uretur
Uterine abnormality
Chronic constipation
Partial absence of tailbone
Urinary incontinence


Many time those with TC have it bcuz a cyst forms and joins the cord to the spinal column...it could be the cyst and the other abnormalities the dr is going to repair as well as TC.

Good luck on friday and I am sending Good Vibes~~~~ and prayers for ur DS, U and all those in charge of his care.

"selma"

[mikeysmom1995]

Hello,
I to am sorry that your little one has been dx'd with tethered cord. Your story sounds all too familiar. My son was born with tethered cord, but was not dx'd until he was 5.
He too had the birth mark, with the vessel clusters as well but my ped. just kept telling us that it was a hemangioma and that it would go away. By the time he was 3 we could not potty train, and he had severe leg pain. Again, dismissed by ped as growing pains, and boys potty train later than girls. As a mommy I knew that something was not right but nobody would listen, Our son also has Spina bifida occulta which usually means there are no issues, but in our sons case he is missing 2 segments of his spine in the sacral region, and a simple xray dx'd this.  
Our son was in surgery for 8 hours or so, and the first day after surgery was the hardest.He was in peds ICU overnight then in a regular room for 3 days after.
After he was home, I had a hard time keeping him down, as children bounce back so much quicker than adults do.
He has had 2 untethering surgeries. HE had an MRI to confirm dx and had the surgery within a few weeks of dx. After the surgery, upon MRI the cord will always look tethered as this is due to scar tissue. It does not necessarily mean more surgery. Now we watch for symptoms, and this is how they determine if more surgery is needed. Just know that no 2 cases are the same, so what happens for one does not necessarily mean it will happen to your child.
Where is Dr. Moriarty located, as his name sounds very familiar to me as well.
  If you have any more questions, feel free to ask as there are so many wonderful people here willing to help with support.
Please keep us posted on your son's condition, Many Blessings to you and your little one.
Barb :)

[bogeybearsmom]

Thanks for all your info, Dr. Moriarity is in Louisville, KY.  My son is not showing any signs of TCS.  But he is only 23 months so he is not potty trained either.  Not showing any bowel symptoms.  He is 'normal' active 2 year old!  The reason for surgery is bc of the belief that the cord is tethered and bc of the pin hole which, as explained to me, could possibly be a tract to the spinal cord and a concern over infection and bacterial meningitis.  Getting the surgery done now is better than later. Dr. said that was necessary to do now. The surgery has been postponed due to ear infection.  Waiting for new date.   Did anyone have a second opinion with a different doc.?  And was that response the same as the first?

[selmaS]

Oh...well that does indeed make sense to me.....

I have not inquired on a second opinion at this time....I need to get thru DD's wedding and  get myself  re-situated so to speak b4 I consider another surgery.

Second opinions r great and should be gotten if u do not feel the dr that gave u the first dx  was one that left u comfortable  with him as a dr or what he /she told u. Or even how they told u....u should be able to have a re pore with the dr.

Is the ear infection all cleared up?.....

"selma"

[mikeysmom1995]

Hello,
most times, even if the child is not symptomatic, the surgery is done to prevent symptoms from occurring. Sometimes when symptoms have already occurred, they do not always go away after surgery.  But as I said before, all cases of tethered cord are unique. Our son had a Lipomeningocele, which was a fatty tumor. He too had the birth mark that actually bled with every bowel movement as an infant, and the docs still did not think it was a big deal. He had an area of skin attached to the hemangioma (red birthmark) that had no pigment at all. Also, his tiny butt crack was shaped like a half moon. Sorry to be so graffic, but I think that knowledge is power, and if I was armed with more knowledge at an earlier stage, we would have fought harder for more answers.
I constantly what if myself, or if only we had known maybe he would not have so many issues to deal with now because of the delay in Dx.
Please know that none of the info I pass along is meant to scare you, I just wish I had known more like I mentioned earlier.
Selma is right, a second opinion is never a bad idea if you are not comfortable with your docs opinion, or just looking for confirmation of his dx.
Many blessings to you and your little guy.
Barb:)

[bogeybearsmom]

I totally agree with surgery is going to prevent the symptoms.  This is my only child and I like you, trusted what their ped. said.  I appreciate all of your and Selma's info, scary or not, we need to know.  His ear infection is getting better, taking the medicine!  I am guessing around the end of the month is when they will reschedule.  You know, when we took him Thursday to see his ped. about his fever and she told us he had ear infections...it seemed like she was baffled that he was DX'd with TCS.  She told us that he is very young to be dx'd with tcs.!  I don't agree with her, if the MRI shows it and there is the questionable spot on his back why would it be baffling to her?  I know he doesn't have the symptoms yet and that is a blessing, so wouldn't she think that surgery would be a must -do now before symptoms show up?  Barb, did you change ped.'s after you got your sons correct dx?  I am having a problem trusting this lady for the fact that she always told me that "she THINKS that its a cluster of blood vessels and will go away".  She never referred me to a specialist, and I trusting her and this being my first born went with the flow of things but always asked at every doc. visit.  And if she wasn't 100% sure of what it was I believe she fumbled the ball by not referring us.  So, I think I will be changing his doc to the other doc in same group who referred me.  GOd Bless!
Alison

[selmaS]

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"

[mikeysmom1995]

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 :)

[bogeybearsmom]

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.

[selmaS]

  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"

[JamiRM]

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

[bogeybearsmom]

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

[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.  

[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"

[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]

  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]

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]

  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"

[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.

[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.  

[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]

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]

  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"

[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.