I'm new

[Jgheaton]

Although I was diagnosed a long time ago, I was never given any information about my condition. I've had no idea what to expect. I had decompression done in my early 20's, and a shunt put in.  In 2013 I had to have my spine fused from T4 down. My syrnix has traveleddown the length of my spine.  I walked into surgery, but it took over 3 months to be able to walk again, and that is with the help of a walker. I'm considered partially paralyzed.   I don't have the use of my right hand as well.  Now my question, will I end up in a wheel chair permenately? Does this disordered effect our major organs?  Is it anything like MD or MS? ( both I've been tested for, and it wasn't that). I feel lost and a bit alone.  I live in St.George.
Any help I'd be greatful for.

[Lottida]

Hi & so sorry that you are having to deal with partial paralysis.  Unfortunately sometimes the syringomyelia causes permanent nerve damage which can lead to paralysis if untreated or not treated fast enough.........but on a positive note I do have an acquaintance that had her entire spine with a syrinx..........She was a paraplegic for nearly 2 yrs, but with extensive rehabilitation she is now able to walk without a walker.  It took extreme dedication & devotion!!!  Sometimes the damage can be reversed but only time can tell & of course it is different for everyone(depends on the severity of the case).  Now that you are aware of your condition, hopefully your doctor will monitor with MRIs to make sure further damage can be avoided.  Have you done any neurological rehabilitation??  I know that there is an awesome instiution in Atlanta,Ga called the Shepard Center.....that is where my friend went for rehab.  Maybe you could send your records for them to review to see if they could help.  They work only with brain injuries, spinal cord injuries ect....  I will definitely say a prayer for you & hope that you continue to improve!!  Keep us posted.  You will definitely find lots of support on this forum!!!

[selmaS]

  Hi and welcome to the Chiari forum.

With Chiari,, we can develop other related conditions.....Syringomyelia  is most likely what is causing your partial paralysis as it can lead to perm nerve damage.

I am not sure anyone here can answer your questions about the wheelchair....but a true Chiari specialist should be able to give you the info.The  symptoms are very similar to MS...and each of us will experience it differently....

There is a Chiari specialist in CO...not sure if you can travel....but that might  be your best option at this point.