Tethered cord and Chiari Malformation

[jenebeka502]

Hi everyone.  My 9 month old daughter is scheduled to have surgery to release her tethered cord in April of this year.  We are located in Louisville, KY and my daughter's neurosurgeon is Dr. Gump.  So far, I like him very much and appreciate how he handles questions from a very scared mother.  I hope it is okay that I posted this question here as I have read that tethered cord and Chiari Malformation can run together.  

My daughter has the fatty filium (spelling?) type of tethered cord.  She had an MRI of her spine last summer which led to the diagnosis (no symptoms at this time). During our last appointment with Dr. Gump, he said that he wanted to schedule an MRI of my daughter's brain to look for fluid.  He said it was routine.  However, I cannot seem to relax and am worried about the scan on top of the surgery.  I'm happy for the doctor being so thorough.  Yet, I am extremely nervous about the sedation and most importantly, what they might find.  She did well the first time but I still can't help but be concerned.  I hate all of the extra radiation but I know it is necessary.  

Dr. Gump did not mention Chiari but I suspect it is part of the routine issues they look for prior to surgery.  I'm guessing Chiari and fluid are the same, or no?  Also, my daughter does not have Spina Bifida and has never had a shunt.  (She only has a VERY small amount of Spina Bifida Occulta - Dr. Gump has no concern about this issue at all.)

Questions to you:
* Is a brain MRI scan prior to tethered cord surgery the norm?  Would a MRI on the spine detect Chiari Malformation?
* What are they looking for?
* Any experiences with Dr. Gump?

I am a worrier and for me, I would rather be prepared even if it is scary.

Thanks so much to all of you and best wishes for good health!  

Jenny

[linnielou232]

I wanted to welcome you and to say my heart goes out to you.  I can't inmagine having a child so young and have to deal with these issues.  Please be assured it sound's like you have a pretty good doctor and he is doing what is best for your daughter.  You in my prayer's to give you strenght while dealing with all of this.  Just know that your DD is in God's hand's and he will direct you in the right direction.  Wish you the best.  

[jenebeka502]

Thank you Selma!  It's been a very scary road with my baby.  We started with Torticollis (which is mostly resolved) and the x-rays for it indicated Spina Bifida Occulta which then led to the MRI and the tethered cord diagnosis.  I realize my daughter is lucky and things could be far worse.  Still, she is my baby and I am worried mother.  

Your reply actually helps me to feel better.  I am much better armed with the information rather than not knowing what is going on.  

I hope you are feeling well since you have been/are going through TC and Chiari.  Thanks for being on this board to provide your guidance.  It is much appreciated!

[selmaS]

  Hi and welcome to the Chiari forum.

U were correct to post here, as several with Chiari including myself also have TC....

The Brain MRI is standard....and one surgery can affect the other area depending on what is going on.

I would also ask they check her for sleep apnea and ehlers-danlos syndrome...these r key b4 surgery and a child her age.

Chiari and fluid are NOT the same...chiari is the malformation of the skull leading to the cerebral tonsils herniating out of the base of the skull
( magmum forman) and this compresses the brain stem and spinal cord...the herniation can block CSF flow causing a back up of fluids...this can also cause a syrinx to form...syringomyelia...a syrinx can form in the cervical spine, but have also been found in the thoracic and lumbar spine as well...so all areas should be checked.

ICP, PTC...intercranial hypertension or psuedo tumor cerebri.....is when there is excess CSF fluid, the body either produces too much and it can not absorb it fast enuff and this creates pressure....the other could be the body just stops absorbing the CSF...and u have an excess...with the same result as it over producing or with chiari having the tonsils blocking the CSF from flowing....all lead to pressure that needs to be relieved.

Many NS's feel if they release the TC first, the tonsils will retract...especially in a child that is still growing....so, it is possible she may not need surgery for Chiari if they find it....

But do make sure she does not have sleep apnea and ehlers-danlos...these two can affect how she feels and heals from surgery.


    "selma"