Left sided thoracic Scoliosis and Neurological issues

[TCMom]

I have been having issues physically as long as I can remember and they are getting progressively worse.  I have always been brushed off by doctors and told I have anxiety and left to keep searching on my own.

I frequently walk into walls, I am always dizzy, I can no longer walk for more than a few minutes or stand unsupported.  I have a constant pressure at the back of my head.  My arms and legs go numb and weak and I have widespread pain.  My life is not enjoyable at all and I have developed anxiety from feeling like this day after day since I was a kid (I am now a 28 year old mom).

I have had an MRI of the brain.  I was told that my tonsils look low but the radiologist report said normal, so again I was brushed off.  I should note that my son has Chiari Type 1.  I have also had every blood test and had it multiple times.

I was recently looking into my old medical records.  It is no surprise that I have scoliosis.  I am starting to almost become deformed by it.  What surprised me is that I have "moderately to severe scoliosis convex to the left", based on multiple xrays I had as a teen.   If I remember correctly my son's neurosurgeon had said that is the form associated with Chiari Malformation.  I have had MRIs of my lumbar spine (that shows Dextroscoliosis) and cervical spine, but never the thoracic.  Should I be pushing for that?

Another odd thing about me is that I am partially blind in the left eye (have 20/20 vision though).  Everytime I go to the eye doctor or a new neurologist they are blown away with my optic nerves.  They have never figured out what is wrong with them, but they always take extra time examining them and comment.  Maybe that isn't even connected to any of the above issues but I thought it was worth mentioning.

I don't know what direction I should be going anymore.  I am getting worse and very scared about it.   I mailed my Cspine MRI off to a specialist for another opinion.  There is something there - - I just don't know how to get someone to look at it more with me.  Any input would be appreciated.  I want nothing more than to be able to live somewhat normal and to be able to do the little things, like handle the walk trick-or-treating with my kids.

[Smiley1007]

Have you lookes into pseudotumor cerebri, I ask because your having head pressure and you mention a problem with your vision.  This condition causes vision issues, and high intracranial pressure which can cause low lying tonsils too.  You would have to get a spinal tap for diagnosis.  I see you were just diagnosed with chiari, these conditions are in some relation and is worth you looking into.   I have the same symptoms, bad head pressure in the back of my head and neck and what looks to me as low lying tonsils although all docs says no chiari.   I had a tap and my pressure was high and im currently being treated.  I am still on the road to making sure its not chiari related.  If you go on you tube and type in "if it's not chiari" dr.oro has a great presentation on chiari and its related conditions!

[shinystare230]

Hi Mom .don't give up with you seach.Doc.are going to push you away cause half the time they don't know themselves.But don't giveup .Try to be stress free.I know it's hard. I've gotten and still is getting alot of Doc push me off.When you feel like there's no hope just think of your son