My 8yr old daughter's CMI surgery is coming up and I need some answers please

[preciousjanie]

My daughter, Janie's 8 and she was diagnosed with CMI this August due to her scoliosis.  Dr Mahomar at kaiser in L.A. is her NS.  I have read (and thank you so much for this site) that I really want to make sure the NS is a specialist if not
at least have done many surgeries of CMI.  Does anyone know Dr. Mahomar and I read somebody seeing Dr. Won at the Fontana Kaiser, if I could get some feed back, I would greatly appreciated.
I'm just so worried if doing the surgery now is a good thing for my daughter when I read stories about how their
bones grow back because they are so young and having to do another surgery later and I really don't think I can
go through that.... and it seems, for now, she has neck pains but they are becoming more frequent...
Please help.... any comments will be greatly appreciated. Thank you in advance.

[preciousjanie]

Thank you, linnie(?), don't know your name but feels like I  already met you and already are friends...
Last night I was beating myself thinking why I waited, and still putting surgery on hold.... I say I want to make sure I'm doing the right thing and rush into it but maybe I'm just afraid...
afraid how I may not be able to handle my baby Janie in pain after the surgery.... how I might break down if the surgery didn't go well and she end up needing another, and another surgery... I know I'm going too head of myself...
but... she's my baby, u know...
I'm sorry... going on about my feelings... I just wanted to say "thank you," I know I'm not the best mom and not even close to one but especially after feeling so guilty last night... I just really appreciate you telling me 'it's ok, that I am doing the best that I can...' really makes me feel at ease.. Thank you.
And your are right, God is good and has a plan for us and alreadyprepared good things for us..
He will never abandon us and I too believe there are reasons for why we are going through what we are going through.. I just hope that later, later down the line my Janie and I can look back and say that  such good things came out of all this... God Bless you and thank you, please keep my sweet Janie in your prayers...

[linnielou232]

Your Janie will be o.k. because it sound's like she has the best mom  in the world and you will get here through.  I found with my difficult journey and you will find also, you will all wrong stronger because of this and especially closer.  We wonder some times why God has this plan for us but in the end of this long road you will find the answer's and the prayer's that you are asking.  We can't relate being the one watching with some one with chiairi, but I do know it put a toll on my family, but for today we are so much closer and so much more appreciative of the little thing's in life because of it.  Janie will be o.k. just keep your faith in yourself and in your daughter and you will grow stronger because of it.  I will keep you in my Chairian prayer's.  I wish you a good day.

[preciousjanie]

Thank you again.... I appreciate your honesty and your explanation..
I know,.. for such a little girl to have such big complications...
her body's still sooo small.... too small to  have all that "jumbo mumbo..."
but she'll be ok.... right?....she has to be ok... she has to be....
thank you all....
wish everyone the best of luck...
God bless...

[selmaS]

  Hi...since I am not in the medical profession I will tell u what I think this all means...but, do not take to heart what I am saying as fact...u must rely on ur Dr for that.

  The tonsils being in cm's indicates a very long herniation...which again makes me wonder about tethered cord.

Her syrinx is very large too....

  I really wish I could give u more than that, but I would really try to get her into see a few Drs to compare and go from there.....she has way too much going on for us to delay u,,, I can only stress that she does need the right Drs.

  May I ask what MRI is this of?....or is this from a few of them?

     "selma"

[preciousjanie]

I found the MRI result paper and I thought I share it with you so maybe you or anybody can educate me further..
Janie, who's 8yrs old, has been complaining about a neck pain since maybe about 4~5 year ago.
Her MRI, which was taken this August 31, 2011 states..
Chiari I Malformation is identified.  Low-lying cerebellar tonsils about 1.1-cm.
Extensive syrinxs is identified throughout the spinal cord primarily from c3 all the way to T10 levels.  This measures 1.2-cm-AP at c4-5.  It measures about 6mm in the mid and lower thoracic spinal cord.  Significantly heterogeneous turbulent signal identified in the syrinx especially in the cervical spine.  
Thoracic lumbar spine scoliosis again noted.  No other focal disk herniation or canal stenosis.

If there's anyone who can translate this in to English, greatly greatly appreciated...

[preciousjanie]

Thank you... It really feels good and comforting to get such supporting and  caring messages from people that I don't even know but yet do not feel like a strangers at all.  I feel very connected to everyone on this forum website.
Please keep my Janie in your prayers please...
She's only 8 and have scoliosis due to severe cyst/syrinx and I guess they call it syringomyelia, which I'm learning it's not a good sign...
She's the baby of the house, so bright and pure hearted..
It's just so hard, being s single parent raising 3 girls...
and now my baby has to go through something that....so painful..
painful either way.. surgery or no surgery..
if I can... if it is within my power, I would do anything to take that away from her and I will be gladly and happily walk the path that she has go...
Well, thank you very much for informative insights and your concerns for my Janie.  I will keep everyone posted on which doctor to go with and how she's doing. Thanks!!!

[preciousjanie]

Thank you... It really feels good and comforting to get such supporting and  caring messages from people that I don't even know but yet do not feel like a strangers at all.  I feel very connected to everyone on this forum website.
Please keep my Janie in your prayers please...
She's only 8 and have scoliosis due to severe cyst/syrinx and I guess they call it syringomyelia, which I'm learning it's not a good sign...
She's the baby of the house, so bright and pure hearted..
It's just so hard, being s single parent raising 3 girls...
and now my baby has to go through something that....so painful..
painful either way.. surgery or no surgery..
if I can... if it is within my power, I would do anything to take that away from her and I will be gladly and happily walk the path that she has go...
Well, thank you very much for informative insights and your concerns for my Janie.  I will keep everyone posted on which doctor to go with and how she's doing. Thanks!!!

[linnielou232]

While reading your post made tear's come out of my eye's.  For with us we have to deal with the pain.  I can't inmagine having to watch my child go through this.  My heart goes out to you.  Selma is very inforative and she has sent a lot of us in the right direction's.  It's because of this website I actually decided on surgery.  I also suggest that you get a 2nd oppion.  I went to 3 doctor's before finding the one I was comfortable with.  The more information you have going into this the better.  If you have question's write them down as you think of them that way you won't forget.  I know how it is going into a visit and there is so much to absorb.  I just wanted to let you know you and your daughter are in my chiairan prayer's and alway's know we are here for you to talk to.  It is a very difficult illness to understand.  I have a very loving and supportive family, and it is nice you have them to turn to, but this website all of us can relate to what you are going through.  Please keep us posted.  and give your daughter a hug. (around the waist) :)  and let her know she has a lot of people praying for her.  

[preciousjanie]

Thank you for your valuable information, I will ask more questions next time I see her doctor and I will try to have another, probably, Dr. Won from Fontana Kaiser take a look at her condition and I will be sure to ask all those questions. Thank you so much!!!

[selmaS]

  I can not tell u if ur DD needs surgery right away or not...but, the fact she has a syrinx is an indication that there is a CSF obstruction. Depending on how large it is, width wise, and if it is compressing nerves is the issue.

The decompression is done with hopes the syrinx will shrink.....

  But, if ur DD did not have a MRI of the thoracic  and lumbar spine u have no idea if there r more syrinx's.....too many Drs only check the cervical spine....but far too many with chiari also have a dx of a syrinx in the thoracic and lumbar spine.

  In doing the decompression, the dura is opened, and it sounds like this may be what this NS intends to do...what u need to ask next is what type of patch will be used, and was EDS ruled out....those with EDS run a higher risk of rejection so using their own skin for a patch is better then synthetic, bovine, or cadaver.......

   U may want to talk to another NS that is a chiari specialist and weight what he tells u....

  But from what I know, once u have a syrinx, u need to do something...if left untreated for too long it can cause perm nerve damage.

U need to find out just how large this is, and if it is growing. Many times these can be very slow to form and grow and there have been others that grew so fast, same with tonsil herniations, with an obstruction the size can change in a short time frame.

  So do call a few Drs and get professional opinions.

      "selma"

[preciousjanie]

Thank you so much for your information, as I see you are so helpful to so many of us.  Janie had the cervical spine MRI don't know anout thoracic or lumber spine MRI but it was pretty through and that's when they referred her a NS saying that it's not just a simple case of scoliosis (which she is about 35 degrees) and that she has a syrinx/cyst in her upper spinal cord and all the way down to T10 or something.  She has neck pains almost everyday that seems to last about couple of minutes.  My understanding of the surgery was he was goin to do a decompression, he said that he will take out the base bone, celebellum?, and take out the c1 as well.. if he is planning on doing other precedures such as taking out the part of the tonsils, I'm not sureof... I was just scared and just wanted to take my baby and run away.... I'm still in tears as I 'm writing this, I would think that I've cried enough and talked about it to my close friends and family enough but it just doesn't get easier...
And you aske about tethered cord... not sure what that is and if Janie has it or not.. oh, and she did get the brain MRI w/o the contrast.
Today was actually her pre op but after finding your website yesterday I wanted to wait to get some more info and so I cancelled. I rather wait a few weeks then feeling like I'm being rushed into something I'm not sure of... Does my daughter need the surgery asap? I do understand that the reason many doctors rush the surgery, especailly when syrinxs are present is b/c once the damage's done it's irreversible but is her condition that bad that she has to be rused into such a painful surgery??
And also it seems as if you really want the very experienced NS to performed the surgery right way the first time around to reduced the posssibilty of having to do another surgery sesond time and even third..
I really thank you for taking the time out to help someone like me, so lost mom who just don't know what's best for my baby...

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little one is having to deal with this condition...it is not easy to have a child that is not well.

May we ask a few questions?...why was surgery suggested?...besides HA's what other symptoms does ur DD have?

  What tests were done to date?....typical tests r Brain MRI w/wo contrast, cervical spine MRI, thoracic and lumbar spine MRI...CINE MRI (flow study)....

  What is important as saying ur child needs surgery is, y, and what will be done. For some children they do a less invasive procedure that many times needs to be redone and could be what u were reading about...a bony decompression...the dura is not opened and offers relief for a short time.

What degree of scoliosis does ur DD have?....many with Chiari, and or tethered cord have mild scoliosis...

I saw this Drs name on a chiari dr list, but do not have ne first hand knowledge of him...I suggest all  to check a few drs and compare to find the best dr for them....u need to compare chiari dr to chiari dr....and go with ur gut once u have educated urself the best u can.

   We have a list of Drs, but it is not a referral, only a means to help u get started with ur research- not all chiari drs may be listed and not all listed may be chiari drs...this are the members drs that they were happy with.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

    "selma"