UPDATE - had 1st appt with NS today...

[KatieMM2582]

So, after my follow up with my Neurologist last week I was prepared to have the decompression surgery option waived at me today by the NS.  I met with NS Dr. Kelly Schmidt  of The Spine and Brain Institute Las Vegas, at Sunrise Hospital.  
A bit of history...my Mom has suffered with Chiari symptoms for most of the past 20 years, so I am no starnger to the pain it causes.  Mom had her decompression surgery in Feb of 2011, at the age of 49.  She has not seen much progress from the surgery-so of course I am sceptical, even though my logic tells me I am at a 20 year advantage and everybody heals differently.  Anyways, I was diagnosed March 8, 2013 with Chiari Malformation (10mm) with Syrinx (c6-t5), and probable EDS (as I show signs and runs in our family).  I was diagnosed by my Neurologist after a battery of MRI's, blood work, lumbar puncture, neuro exams.  In the beginning-all the drs were sure that I had MS-nope!  Neurologist is Dr. Dobrev who is practicing at Mike O'Callaghan Federal Hospital on Nellis AFB, and he has been a blessing to me!  He just kept the tests comin until we found an answer.  
Ok-back to today...Neuro said that surgery was most likely going to be recomended by NS Schmidt, so I went in expecting that.  NS Schmidt said that surgery is a MUST-there is no choice in it.  The size and progression of my syrinx has to be stopped-and the way to do tha is by Decompression Surgery of the Chiari.  She said that the Syrinx is most certainly a major culprit to my symptoms and is confident that by decompression I will see benefits and improvement within the course of a year as the syrinx fades away.  She said that without the decompression surgery I will likely face paralysis due to the syrinx.  She mentioned that she has rarely seen a syrinx my size in an adult, as it is usually caught before this size-hence her urgency for surgery.  So, now we wait for the insurance (tricare) surgery approval, then we schedule.  
In a sense, the fact that I do not really have a choice is a good thing I suppose.  Because I am not sure that I could have given the green light for surgery had I needed to make that decision.   I am still scared to death, but it made it easy for me.  Of course my logic has the better of me, and I am still not certain about the surgery.  This isn't a guranteed fix, and of course with any surgery therenis risk.  So my mind says-am I really willing to take the risk of putting myself thru surgery, or am I willing to take the risk of progressing issues leading to paralysis?  Im having a lot of trouble wrapping my mind around this.  And of course Im tired of hearing the generic "surgery will fix it and you'll be cured" response from my goodnhearted yet uninformed friends and family.  I am just so tired of not being in control of my own body, but also dont want to have false or unrealistic hopes....
Ok-so that was more of a venting/update/history...sorry for the length, just cant seem to really express myself to those around me.  You guys are my lifeline for now! ;)

[selmaS]

  Glad to hear u r comfortable with the Dr as that is very important.....and it does take time to know the right next step...and it is best to know all underlying issues as they can affect the out come of surgery....and I know adding one more thing to the list feels like the straw that broke the camels back....but, as frustrating as it may be, it is that much more of a benefit should u go forward with surgery.

Goodness u DH is going to be deployed...that adds stress...know u have all of us here to support u as best we can <3

Breath and remember to exhale : )

[KatieMM2582]

Dr. Schmidt is not labeled as a Chiari Specialist...but 90% of her performed surgeries have been Chiari decompression, and of that-mostly pediatric.  I was actually quite comfortable with her, but agree that a second opinion is never a bad thing.  I have already spoken with my Neurologist, who is willing to place a second referral to a NS of my choosing.  I was so overwhelmed yesterday during my appointment that my probable EDS was not brought up.  I did however email her directly just a bit ago regarding it.  One thing at a time I know...this isnt something to rush into even though it should be handled quickly.  My husband is preparing to leave for Korea for an entire year-so time really is of the essence in regards to post op recovery and healing.  Just so overwhelmed with it all right now :/  I cannot tell you how thankful I am for your advice and caring heart!

[KatieMM2582]

I am so excited for what my future has in store! I am learning to let go and let God for the things that I cannot control, and to take control of the things I can.  Day by day is great advice :)

[KatieMM2582]

I am hopeful, and its always good to hear someone in a similar situation that has showed improvement! Iknow the hardest part for me is "taking it easy"...but Im working on it and trying to avoid the things that only hurt me later.  God's hands are iver me, and with Him-I CAN overcome this and take control back of my body! ;)

[KatieMM2582]

So true-and you said it much simpler! ;)  I dont want surgwry...but do want to feel semi normal :)  It certainly is a huge advantage knowing what is ahead of me, and in a twisted sense-I am thankful for that!

[selmaS]

  Hi...not sure what to say, I am glad u have options,

My suggestion is to get the opinion of at least one more NS one that treats Chiari and related conditions...if for nething else to see what they might say so u can compare it to what u were already told.

With a syrinx, surgery is inevitable....either to restore flow and slow progression now, or as an emergency if and when more severe symptoms start.

But again I must stress it is the other conditions that if brushed to the side can affect how u feel and heal post op...and u have to ask how will they treat u knowing u have EDS....

As the others said there is no guarantee how surgery will turn out, but the more experienced the NS is with Chiari and ALL the related conditions the better the out come...JMHO

Keep in mind many of us that did not have a syrinx had surgery to prevent one from forming....we already had an obstruction to the flow....

[linnielou232]

I'm so happy to hear you already know what to expect.  This helps with the process.  Let today be today and just deal with things as they come along.  We have no control of what is to be,   I wish you the best. and everything will work out for the good.  God Bless you our Chairian friend.
Linda :)

[frankie_rush]

Hello and welcome to the community

Your syrnix was as long as mine (C2 to T1) and my herniation was 12mm.  Yes it does make you feel like you have no control.  But you do have control, my surgery did help.  I have some different syptoms but it is because of what I did.  I feel a whole lot better than I did.  With your syrnix being that big you will have to give it some time to let the nerves re-route them selfs correct.  That was the biggest thing for me cause it makes a crazy tingle but nothing painful.  It is normal to be scared of something unknown.  It shows you are smart.  But you put yourself in GOD's hands and he will take care of you.  It sounds like you got a good NS, sounds like she knows what she is doing.  keep us posted on what is going on.

[STL5]

It is nice to have a place to vent- especially when people can relate.  You are “fortunate” being able to understand what to expect (there is no cure) from your mother’s experience.  Sometimes it takes time to accept what you need to do versus what you want to do.  No one really wants surgery only relief from their symptoms- which they may or may not get.  There are no guarantees only possibilities which can be hard to deal with.  Hopefully your family will be supportive as you deal with everything.