syringomyelia

I was recently diagnosed as having a syrinx from C3 to T8.  I've had symptoms since Jan that I belive are getting worse including Back pain, Numbeness, weakness and pins and needles especially in my left arm and leg, headaches, ringin in my left ear, feeling of slight dizziness, pressure feeling in my face, pulsing feeling in my thrunk like a wave effect and reflux.  My neurologist said they could not be connected and I insisted on an mri of my back that is how they discovered the syrinx ahe then said to wait 12 months to see if it will get worse and to take Lyrica. I am at my wits end and need some help and advice.  I believe that surgery should be done sooner rather than later to avoid the symptoms getting worse.  Is there anyone who can help I live in Ireland and there is a 6 month waiting list to see a neurosurgeon even privately.

[selmaS]

Hi...syringomyelia or syrinx can be congential or aquired from an accident or injury.

A syrinx can be the cause of intercranial hypertension......chiari malformation and or tethered cord.

I invite u to join us in the chiari forum....our Health Pages have info on syrinx's and we may be able to answer some of ur questions and offer support.

"selma"
selmaS Chiari CL

[ondubuque]

Try calling the NIH in Bethesda MD (USA).  They are looking for volunteers for their syringomyelia study!  NIH.gov on the web.  Good luck.

[valven]

Hi. Was diagnosed today with syringomyelia in thoracic spine. Like you i have the most awful feelings and sensations. Followed by a period of severe back pain i started to get numbness and tingling in arms and legs. Feeling of detachment and unsteadiness, tremors, twitching...i could go on. Was told over and over it was anxiety until got my results today. Now on waiting list for neurosurgeon and feeling very unwell. GP doesn't seem to have a clue about condition!

[selmaS]

Hi...I would like to extend an invite for u to join us in the chairi forum here on MedHelp we have members who also have syringomyelia.

It is difficult to find a dr that understands that these conditions do cause symptoms and we need them to learn what to do about it. There r some specialists that do work in this area...u will want to look up chiari institute and chiari care centers.....they r the drs that know what is going on,

Good luck and I hope to see u in the chiari forum.

"selma"