My child has Chiari Malformation

[jam4]

I have a five year old baby girl and we found out about four months ago she had CM and we have just completed about 3 MRI and CT and X Rays, they contacted me and told me the doctor feels like she needs the decompression surgery, with in a month is his recommentations.  We have an appointment in a week or so, and I am a nervous wreck,  my husband and I were hoping we could prolong the surgery for a couple of years. I would like to know if anyone has had young children who has had the surgery and how successful it was.  She has a Thoratic Block in spine or something like that where fluid isn't flowing right and they said having the decompression would more in likely help that.  I am just looking for comfort in people who have had experience with their own children who has CM. Thanks

[dkdean]

Just wanted to pass along some hugs your way!!!  

[selmaS]

No worries...I know what u mean, we have to know what to ask....

and, it is hard to know what the end result will be.....and some may have expected to lose all symptoms or have done too much too soon after surgery...or just had a bad reaction to surgery...u just never know.

It is possible to continue to have symptoms after surgery, but surgery will slow the progression of other related issues...and to ward off perm nerve damage  was my goal.

It is a crap shoot unfortunately....we have no idea how one will responds to the meds or procedure...but, we do know we have to do something.....

"selma"

[jam4]

Thank you for your questions, because I have been trying to research but it is all a little confusing to me.  I appreciate your questions because now I have some questions I can take to our dr. I have read about some cases that the surgery helps and some that I am not sure if it did.  It just scares me to put my little girl through this.  Any info. I get from a support group I hope will help me. Thanks

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur little girl is having to deal with this.First and foremost be sure ur drs r true chiari specialists.
Next, may I ask, what symptoms did she present with in order to have MRI's ordered?

Could the blockage in her thoracic spine be a syrinx?......do u know if she has a CSF blockage in her cervical spine as well?...was she checked for tethered cord?

What % of benefits did the drs feel she would see from this surgery?

Everyone will respond diff to this surgery and the meds....it really depends on her ...how she heals....what her mindset is, and for a child, I know that is a diff one to answer....but, if she is happy go lucky...that is a good outlook.....if she with drawls...not so much, so it could be a bumpier road.

We do have parents of children with chiari as members....not sure of who with a child ur DD's age...but we do have some younger and older.

I would deff get a 2nd opinion and know exactly what it is they wish to do and y.

Y is it so important to do this  so quickly?.....

If u go ahead with the PFD, will they cut the dura, will she need a patch, if so what type?
Did they check her for EDS(Ehlers_Danlos Snydrome)...it could help or hinder the healing process and is good to know prior to surgery.

I am  so sorry to throw soooooooo many questions at u, but, these r some of the questions
u will want to ask the drs...and if they already explained it, I am sure they will not mind clarifying for u.

Surgery for chiari is to slow progression...it is not a cure or a fix, but to slow or stop progression is a great victory with this condition.

We r happy to have u join our little family here, but not happy for the reasons u had to seek us out.

Please keep us posted on ur DD's progress and surgery date when scheduled.

"selma"