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I know enough to know I don't know enough
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I know enough to know I don't know enough

selmaS suggested I post this request for insight and possible questions for my son's Dr here, so here we are...

Here's the scoop...
22 month old son, sacral dimples, chronic constipation, bladder instability.
Tests: MRI tethered cord inconclusive, suspect occulta tethered cord.
Bunny trail after MRI: found cystic teratoma.  Surgery: benign teratoma attached to tailbone and rectal wall.  Removed teratoma, tip of tailbone and was able to keep rectal wall intact.
Ultrasound & Urodynamics with bladder instability diagnosis.
Meds:  Miralax for constipation, Oxybutnin for bladder instability.
Next step: consult with Dr. Puccioni, Omaha.  It's my understanding we'll be discussing surgery for occult tethered cord.

If you are still with me after reading all that...
What do I ask?  I've read up on occulta tethered cord.  I need to be my son's advocate and feel like I'm going to fall short, unless I have a better feel for what I should be asking.

Thank you, in advance, for letting me pick your brains and taking time to answer.
Tags: Occulta tethered cord, tethered cord, chronic constipation, Bladder instability, Sacral dimple
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I second what SelmaS said...it's important to get a clear and complete picture of what's going on prior to surgical intervention.  A true Chiari specialist will want to know the complete medical picture because it can change the way the surgery is ultimately done.  

I have CM 1 and got 4 opinions and lots of tests before proceeding.  My surgery was changed as a result of being dx with a connective tissue disorder and the dx of a retroflexed odontiod process.  I ended up needing not only the decompression, but a fusion as well to stabilize my head on my spine.  I feel so much better after surgery....no headaches and can sleep better as well.  

I commend you on being an active advocate for your child....you know your son best.  {{gentle hugs}}
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620923_tn?1405964489

  HI and welcome to the Chiari forum.

The reason I felt u should post here as well is bcuz TCS and CM are related conditions, I have both....and I am not sure if CM was ruled out.

And we all know how much these conditions we need a true specialist and not just a NS .....

I would deff want to know what other conditions he may have as there r several related issues and u want to know b4 u should consider surgery of ne kind.....sleep apnea, ICP, POTS,ehlers-danlos,

My whole life I had IBS issues and found that a combo of probiotics and magnesium help as those with EDS and chiari often have a hiatal hernia and GERD/acid reflux issues and when on meds for these issues the meds deplete our system of magnesium, and then we do not absorb other vitamins like D which is very important....so there r sooooo many  things to look at and not stop once u get a dx, and not rush into surgery until u know just how it is affecting ur son.

As I said I also have TCS and I am now 53 and yet to have this surgery....
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979826_tn?1389039958
hi! i have chiari and tethered cord. i had the tc surgery about a year ago and it was the best thing for me!!! i felt so much better afterwards!!!!!! a test that needs to be done to check for occult tethered cord is a urodynamic testing for his urinary symptoms. not a pleasant test but it diagnosis a neuronic bladder caused by the tc. i hope this helps!!
molly
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ICP?  POTS?  Please explain.
Thank you!
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620923_tn?1405964489

  Sorry, we do have a list of abbreviations in the Health Pages- http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

But ICP = intercranial hypertension also known as PTC pseudo tumor cerebri which is excess CSF fluid which build and creates pressure. The body either over produces or is not absorbing the fluid as it should.

POTS=Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.
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Avatar_f_tn
Thank you, for the link to abbreviations.  

CM has NOT been ruled out.  I've taken copious notes, based on your information.  This mama is going to be armed with information.  

Thankfully, Dr. Puccioni, hasn't given me the attitude of, "I'm the doctor, I don't need you to give me Internet info, just take my word.".  Sadly, I've gotten that in the past and have let it intimidate me.  
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620923_tn?1405964489

  Regardless if he is aware of Chiari u want a Dr well experienced with Chiari, this can make a huge difference. Is he a NS or a NL?

The more informed u r the better u will understand what they r saying to u.....

When do u see the Dr again?
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Avatar_f_tn
I second what SelmaS said...it's important to get a clear and complete picture of what's going on prior to surgical intervention.  A true Chiari specialist will want to know the complete medical picture because it can change the way the surgery is ultimately done.  

I have CM 1 and got 4 opinions and lots of tests before proceeding.  My surgery was changed as a result of being dx with a connective tissue disorder and the dx of a retroflexed odontiod process.  I ended up needing not only the decompression, but a fusion as well to stabilize my head on my spine.  I feel so much better after surgery....no headaches and can sleep better as well.  

I commend you on being an active advocate for your child....you know your son best.  {{gentle hugs}}
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Avatar_f_tn
I hope this day finds toy feeling well.

Dr. Puccioni is a NS, At Midwest neurosurgery & spine specialist, in Omaha.  
A friend recommended him, both of her children were dx with CM and he did the surgergy.  According to his office and Children's Hospital, in Omaha, he is listed as a Chiari specialist.

Puccioni had us do the abdominal ultrasound and Urodynamics, before we talk any further about tethered cord.  

I almost forgot...  the ultrasound showed some fluid build up on one of his kidneys.  Dr Trainer, pediatric urologist, wasn't overly concerned.

Based on what I've read (from your posts), Dr. P suspecting occulta tethered cord, chronic constipation and the dx of bladder instability, is it realistic for me to ask about a full spine MRI?  

If Dr P says that CM is not a problem and I ask why he is certain, what answer would he give that I can be confident in?

Thank you, again, for your time and willingness to share your insight.
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Would you please review my response and let me know what you think?  Levi's appointment is at 9AM, on the 13th.  I've taken my notes, just needing a bit of reassurance.

Thank you!
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I was asked to select a "best answer" to my original question.  I'm looking forward to further reply...  All responses, so far, have been very helpful.  I chose one, but would like to select them all as "best".  

I'm very thankful for this forum.
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620923_tn?1405964489

Sorry, I must have missed ur post....I was not on at all on Sunday so could be why.

Well, the way my NS explained this to me is , they look at how elongated the brain stem is and things like that to see how tight the cord is being pulled, and if the patient also has EDS, to do the TC release first may allow the tonsils to retract, many times this happens, and sometimes it does not and a 2nd surgery follows.

and to go the other way, to have the Decompression first, u could if really tight end up in surgery with in the next 6 weeks of the decompression as it makes things worse.

I would want to know, either way if he has both, and if there is a syrinx in ne area of the spine b4 nething is started as well as make sure u know if he has EDS....those with EDS need diff care and take longer to heal......

All I can advise is ask for y they feel this is the best way to go and go from there....U can see evidence of OTC as I said the brain stem is longer then most, and sacral dimples and there is a cyst and a few other things including the urodynamics testing of the bladder u had done.......

TC release could be the reason for the tonsils to be herniated if they feel there is no chiari (room in the skull) ....

I hope this helps.

Good Luck and keep us posted : )
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620923_tn?1405964489

Sorry, I must have missed ur post....I was not on at all on Sunday so could be why.

Well, the way my NS explained this to me is , they look at how elongated the brain stem is and things like that to see how tight the cord is being pulled, and if the patient also has EDS, to do the TC release first may allow the tonsils to retract, many times this happens, and sometimes it does not and a 2nd surgery follows.

and to go the other way, to have the Decompression first, u could if really tight end up in surgery with in the next 6 weeks of the decompression as it makes things worse.

I would want to know, either way if he has both, and if there is a syrinx in ne area of the spine b4 nething is started as well as make sure u know if he has EDS....those with EDS need diff care and take longer to heal......

All I can advise is ask for y they feel this is the best way to go and go from there....U can see evidence of OTC as I said the brain stem is longer then most, and sacral dimples and there is a cyst and a few other things including the urodynamics testing of the bladder u had done.......

TC release could be the reason for the tonsils to be herniated if they feel there is no chiari (room in the skull) ....

I hope this helps.

Good Luck and keep us posted : )
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