New symptom

[LJMoon]

When I was 5 years old I went into the ER with sever neck pain and was diagnosed with scoliosis.  Because that was such a young age they (Shriners) did an MRI when I was 10 and found out I have Chiari Malformation.   I had no symptoms to speak of!  But they did surgery right away, even asking to use my MRI images in a paper! They went in and took out a couple vertebra and shaved down part of my skull and put some sort of hid in to hold my brain in place(sorry I don’t know the technical term for this surgery, I was only 10 when all this was explained to me).  Surgery went just fine and follow up MRIs looked good.  I don’t remember them saying I shouldn’t do certain activities or restrict myself from anything (although, again, I was only 10 and the only details I remember were my parents being scared).  I do remember my scoliosis doctor said I shouldn’t be treated like any other child, and that I should be allowed to do whatever I felt comfortable doing. I haven’t seen a Chiari specialist since I was diagnosed.  I’m now 24.  
Reading some post on this forum has got me all freaked out! Lol  Is it common to not be followed up by a specialist? I know my case is a little different since I was being seen at the Shriners which is just for children, but they never recommended that I should follow up with any doctors…  Is it true I should restrict my activities; I’m a very active girl and have had no problems till now.
I’m feeling very dizzy a lot of the time and since I never had any symptoms before I don’t know what to look for.  Is it true that symptoms could come back or you may have to have surgery again?  I know I’ve grown quite a bit since I was 10!  Any helpful advice or any similar stories would be appreciated.  I’m planning on setting up an appointment with a specialist sometime soon just to be more informed on my individual case, but until then…

[selmaS]

  It is possible, but u would most likely have tethered cord....but u could also have ehlers-danlos if it was not ruled out too...
yes, I have mild scoliosis, chiari, tethered cord and eds...those with Chiari are prone to get connective tissue disorders like EDS and auto immune conditions like Hashimoto's thyroiditis.....

We tend to have early onset of DDD....among other things.

[LJMoon]

Thank you for your response, you made me breathe a little easier!  I have always wondered if my scoliosis was connected in any way with Chiari.  I remember the doctors not really being able to give me a straight answer, only saying that Chiari might have been what caused my scoliosis.  Also I’m not sure if I’ve ever been diagnosed with EDS but I’ve notice a lot of people on this forum that have this along with Chiari.  I have a lot of the symptoms.  Could all three of these be connected?

[selmaS]

  Hi and welcome to the Chiari forum.

There is no need for follow ups with a Chiari Dr unless u r having issues....a PCP should be able to watch ur overall health and advise u if u need to see a specialist...keeping in mind most all chiari specialists are surgeons...so unless u have the need for a surgery they may not see u.

What could be going on is scar tissue may have formed so a MRI should be done....

And if u did activities and had no effects from it then I am sure they were ok....We are told to avoid things that can affect the head....contact sports etc....and again some of us do have other related conditions that doing some of them will affect us more then those that do not have them.

Did the Drs rule out related conditions?....there are a few that u can develop, plus u said u did not have symptoms b4 ur surgery, for a child born with this they may not recognize the symptoms as u may consider how u feel to be "normal" I know I did and not until I learned what chiari was and how it could  affect me did I realize just how many symptoms I have had for yrs.

  Is it possible for u to get a hold of ur MRI's b4 and after ur surgery for comparison now?