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Juli - posted on 01/08/2009 ( 15 moms have responded )

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Hi I'm new to the group. My son has Arnold Chiari, dilated ventricles, and Tethered cord which was released 4/07. So far the Chiari is in the watch and wait stages. We go in every 6 months for check ups unless he starts showing symptoms, then it's sooner. The Tethered cord operation was very successful. He has almost completely 'caught up' with his peers in most areas of development. Potty Training has been very trying and he still has issues with gross motor (weak body strength). Oh yes my son's name is Memphis and he will be 4 on Feb 26. I have a cousin in his 20's who also has Arnold Chiari and he is doing great after a very successful treatment, so I feel optimistic about Memphis' future. Anyone else have stories/advice to share???
Juli

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Wendi - posted on 03/22/2011

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We also found the Chiari Malformation by way of looking for something else...a syrinx which is actually a cyst caused by chiari malformations. My daughter is 16 yrs old, almost 17 and we finally have an answer for all the symptoms she has had for the last several years and after reading some parents' posts I can see that she started exhibiting some signs of it at age 5 but we never put it together. She has good days and then she will have days where its debilitating and she can't stand or walk without falling or staggering and stays in bed for days at a time. I would love to hear from anyone who has had a teenager diagnosed and the issues they encountered with that. I'm having a hard time finding a neurosurgeon who will see her as mine (I had cspine surgery) considers her a pediatric patient even though she is really almost an adult and stopped growing 3 years ago.

Jennifer - posted on 10/29/2009

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Chiari is sometimes found accidentally when looking for something else. We had an MRI of neck because the doc that ordered it said 6 year olds shouldn't have neck pain (as well as his other symptoms that made more sense after the MRI results!), not that we were looking for something in particular, but trying to see why....

Susan - posted on 09/16/2009

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My son was diagnosed with Chiari 1 Malformation at about 1 month of age. He was in a NICU and also diagnosed with a rare chromosomal duplication. His neurologist said the MRI didn't "impress" him. He said it was something that most times is "accidentally" found when looking for something else. He said most people diagnosed don't have symptoms. While I agree that alot of my sons issues probably have to do with his genetic makeup, i also wonder what the issues that go along with Chiari 1. My son is g-tube dependant, is 17 months old and still not sitting very well. He is basically a 22lb. infant!

Amber - posted on 07/03/2009

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Hi , My daughter has Arnald Chiari and had her decompression surgery July 1 2008, she has had some sympthoms ever know and again. She is not dealing with really bad headaches we did the whole follow up and ct scans and mri everything came back normal and they said she compression area looked great and the space was looking good, but nothing to explain the headaches so we then went to the neuro and they tell us she has miagrane headaches and she will be on meds to keep it undercontrol. if anyone has storys or advise to share please email me

thanks

amber

Juli - posted on 01/29/2009

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Memphis' feet also point inward, the left more so than the right, he often gets caught up on them and trips & falls.  I've seen a slight difference since his surgery, but not significant.  Also he had major, major problems with bowel movements, often not going until we'd give him an enema.  He's on a daily does of Miralax.  Although they can still be painful, he's able to go on his own.  He also has a dimple at the base of his spine, it's deep, but thankfully closed.  We only caught his Tethered Cord and Chiari because he had a misdiagnosis of Hydrocephalus.   Our neurologist says it's a simple surgery (in comparison to many others they perform) and it was  better to do it since there is a 50/50 chance of our son having major complications including being wheelchair bound if we didn't do it.

Jennifer - posted on 01/28/2009

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I am myself slightly pigeon-toed, meaning my big toes point more inward than straight ahead and Josh has been as well, and is after surgery and will always be, like myself ( I have been told it's a sign of being athletic/athletically inclined which myself and Josh are) However, Josh's intoeing, especially the right foot/leg became more pronounced prior to detethering as he grew taller and his cord tightened more. His big toe/foot was turned inwards almost 45 degrees. That was part of the decision, as it was, according to mour neurosurgeon a good sign of a tethered cord. He had other symptoms including headaches (better after decomoression but still horrid), backaches, severe, and numbness/tingling/pain in his legs, especially the right side. He also had bladder/bowel issues not alleviated by decompression. Mostly "peeing" or feeling like he needed to constantly. I mean he could go to the bathroom and then say he had to go bad again not even 5 minutes later. Neurosurgeon said he probably couldn't tell his bladder wasn't entirely empty due to nerve compression, as well as struggling to have a bowel movement because of this as well. He has been much better since both surgeries. Josh says that he is very glad to have had the surgery both times, especially this last one. We are extremely hopefull this will be the last, fingers crossed. We now have to only deal with limitations physically after such surgeries, but he's okay with that and his food allergies/esophagitis/belly pain (thinking Celiac Disease)> Hope this helps,

Stephanie - posted on 01/27/2009

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Jennifer and Julie,



Can you tell me more about the feet turning inward? What does that look like exactly? Also, is that a factor in the decision to go ahead with surgery? In other words, if you choose not to do surgery, the child may not be able to walk eventually? My son's feet turn inward when he stands up (he is 11 months, not walking yet)

Juli - posted on 01/27/2009

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Jennifer:  Has your son's legs shown signs of getting better since surgery?  Our Dr. told us that Memphis' legs may never correct and it's like a 50/50 chance of them doing so (his feet turn in  a bit still).  Also, thank goodness your son didn't lose the use of his legs, which I know can happen as tethered kids get older.  It's amazing how resilient kids are, Memphis' surgery was harder on us than him!

Jennifer - posted on 01/27/2009

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My son has had many feeding issues due to Chiari. He couldn't tolerate anything with texture or requiring chewing. He also had swallowing issues because of this. We also had balance/coordination issues, severe headaches, neck pain, his "bones" would hurt to the point he couildn't walk, etc. He was decompressed at 6yrs in 2006 and just had tethered cord released in November 2008. He had back pain/leg pain/and his pigeon toe was getting worse, right foot was almost 45 degress turned inward. He is doing sooooo much better. The surgeries were horrid for us as parents to watch him go through, but he states daily that he's glad he had them

Juli - posted on 01/19/2009

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Memphis only likes soft foods, I wonder if this is a Chiari thing w/sensory issues?

Danielle - posted on 01/18/2009

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Hi, I also have a child that has/had Chiari 1 Malformation. She is 5 years old and was suffering with signs of this since she was an infant however went undiagnosed for 4 1/2 years til finally they went back and read her 19 month mri scan and found it. She under went her Chiari Decompression surgery in May of 2008 and is doing ok but is still struggling from other issues now. She also had a large syrinx caused from Chiari (blockage of fluid in her spine) that caused Sensory issues but we have been working with PT/OT and hoping that she will one day be able to tolerate much more textures and sensations. I hope that Memphis recieves every service available to him so that one day our children will be able to enjoy their childhood much more. Good Luck with everything!

Juli - posted on 01/12/2009

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Ally,



I feel the same way about the waiting on pins and needles...I think it gets easier and life becomes more normal as time goes on.  We had a scare at the beginning of last summer with headaches, falling, etc.  But the MRI showed only a slight growth in the Chiari.  It does make me feel better that my cousin had his surgery more than 15 years ago and is very smart and leads a totally normal life.  The advances made since then have been astronomical.  We found out about our son when he was 16 month old, then he  had the tethered cord surgery when he was two.  I have to say I was completely paranoid for the first year, but it does seem to get easier.



Anytime you want to talk,



Juli

Allyson - posted on 01/09/2009

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Hi, I just found out about this group. My daughter has a Chiari I malformation that we found out about when she was 4 months old. She is currently 14 months. So we've already had two MRIs done and seen the neurosurgeon but we're basically playing a waiting game. We don't know if anything will ever change and it's been a little rough not having anyone to talk to that has had similar experiences. I think the hardest part right now is wondering if she will ever become symptomatic, especially now that she's learning to walk and falling more. ~Ally

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