stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[fullermonte]

Hi. Did you ever find a Chiari specialist in South Africa?

[selmaS]

  Hi and welcome to the Chiari forum,

May I ask what issues./symptoms u may still be having?

Was ur NS a true Chiari specialist?.....

From my research (I am not a medical professional) and talking with members here about their Chiari and surgical experience it seems that all those that have issues post op had a related undx'd condition that played into the post op issues....if they had been found b4 it may have created a different outcome. JMHO

[Rjn001]

hi I had decompression surgery last 2004, but my doctor never said anything about having other related issues aside from my left part extremities being weak.

   they did not ask or diagnosed me for other related conditions like a syrinx, disk issues, tethered cord, sleep apnea, ehlers-danlos, ICP, POTS...

and I'm really kind of lost what other Chiarians experience. pls help

[selmaS]

  Hi...good to hear from u, but so sorry u r still getting the run around....do u currently have INS or r u waiting for the new one?

If u stop breathing, have ne of ur Drs to date done a sleep study on u?

[t457]

Hello, I haven't been on the form for a while.  But wanted to touch bases with people how understands me. I am still getting "The Royal Chiari Run Around". I will b getting new insurance in July and hopefully there will be a Dr. that will listen. My Journey is still on going. Still having small seizures, tingling, headaches, muscle weakness, balance issues, numbness, can't sleep on my back or I will stop breathing and so on. I still have hope that I will find the right Dr.

[selmaS]

  If u look at the Drs list we have in the health pages and is also a thread on this forum u will find who we r referring to, but do research the Dr as well...just bcuz he worked well for someone else does not make him the right Dr for u.http://www.medhelp.org/health_pages/list?cid=186