stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

  Hi and welcome to the Chiari forum.

In reading ur post I am not sure what surgeries ur DS has had to date...if I have this right, he had the Chiari decompression surgery, and some sort of  heel surgery most likely to lengthen the cord?

If he does have tethered cord he will continue to have issues with balance and other symptoms especially as he grows.

By sack of fluid , do u mean a syrinx?

When was his last MRI?

There have been enuff that have had seizures so it could very well be Chiari....the falls he has  had r not good for  his condition and u may want to try to explain to him how he has to be xtra careful.

As Chiarians we all tend to fall,....so that is to be expected....and hard to avoid but if he is made aware he may not put himself in a situation where he may be at  the top of the steps alone....etc....

  With a DX of Chiari has he been to a NS in the last few yrs to see if there r  ne changes? Do they do MRI's each yr? Do u get copies?

  There r Chiari groups in NY not sure what area'a tho...

[shar475]

hi my son was diagnosed with chiari 1 malformation when he was 16 months old. he has had surgery for it and also a teethered cord. he still has a sack of fluid on his spine. he also had heel cord surgery shortly after. he was born with a club foot and during the process of taking care of it and nothing was changing they finally gave the mri and it was found. then he started with his symptoms again to find out that his venicles were filling up. to this day they still dont know why it did that. he is 6 now. also after his chiari surgury he started with the stare seizures. they were bad when he was younger. he fell down the stairs and off of chairs. im wondering if it is related to the chiari? he goes to see a neuroligist ever year. hes not on any medication. and so far nothing has changed. i am wondering if anyone is aware of a support group around rochester,new york?

[selmaS]

  I am so glad u have a walk near u....last yr and this yr there is not one in my area...and this is the 5th yr for this walk.....

Getting to meet others with this is the best experience, and doing something positive like participate in the walk is great !

Please let us know how it goes : )

[mjdm0118]

thank you. ive been reading all these posts from everybody, and seems very helpful.  there is the chiari walk across america this saturday that i am going to and can talk to others there as well.  this all just happened last friday so its all very new to me.  i havent told her yet whats going on because i want to make sure i know for sure whats happening.  but again thank you so much, this has all been very hepful

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little one is having to deal with this and u along with her...it is not an easy journey to take.

Please make sure u see a few NS's b4 u consider surgery and make sure the surgeon is a true chiari specialist it makes a huge diff.
Also make sure u ask if they work with pediatric patients, not all will or do.

And make sure they test her for related issues including sleep apnea since she is waking  she could be waking as a result of not being able to breath and not know how to communicate that....or be aware that is what is waking her....do have her tested.

In addition to sleep apnea testing for POTS, ICP, tethered cord, ehlers-danlos, syringomyelia, disk issues, thyroid, vitamin levels all should be tested.

We have a list of Drs posted that other members here have been to and liked, it is not a referral, it is just a means to help u start ur research...pediatric Drs r not noted on the list (sorry).

If u need ne help navigating the site please let us know : )

[mjdm0118]

my daughter has been experiencing severe teeth pain randomly for 4 years. i had taken her to the dentist, and pediatrition several times for it, with no answers.  she is now 8 years old and has been having random severe headaches sometimes being woken up from sleep screaming in pain. i took her back to her doctor thinking she was having migraines.( however i did think it was weird that the headaches didnt last that long) they gave her an mri which came back with a 6mm cerebellar tonsillar ectopia. im going to see a neurosurgeon in a few weeks.  since learning about all of this, so much makes sense now.  she has always been very clumsy, falling down often.  she still cannot ride a bike because her balance is so off. she is very weak. she complains of having to carry pretty much anything because its too heavy. ive always just thought she was lazy, and pushed for her to be more active. she is always tired.  one night stands out in my head, a few months ago we went to the planaterium and our heads were looking up the entire time.  she kept complaining that her hands were tingling. didn't think anything at all of it at the time, but now realize why. i guess the only question i have right now is will her symptoms get worse in time?