Chiari with syrinx

[Karenkirk16]

My husband was diagnosed with chiari in 2009 and shorty after had his decompression surgery. However he still has what the doctor calls an impressive syrinx. He told him as long as he could live with his symptoms he wouldn't add a shunt. Well now my husband is balance issues, tension, memory lapse , weakness in his right side and many other neurological issues. He is has always had these issues but they seem to be getting worse even though the syrinx is not growing. I know a shunt is risky because they fail and the surgery itself is dangerous. We really don't know if we should move forward with the shunt. I was wondering if anyone else has been in this situation? Would you have the shunt put in or live with your disabilities?

[selmaS]

  Have they tested him for ICP and try meds to lessen the amount of CSF?

I agree it is frustrating to try and find Drs well informed and experienced with these conditions making it even more difficult for those with them to not only get a DX but the proper treatment.

Have u tried getting a 2nd opinion?

[Karenkirk16]

They have not done any blood panels. He had his first surgery November 2009 and his syrinx has been the same since. It hasn't gotten better or worse. The doctor was hoping the decompression would cure the syrinx and in 80% of patients it does. His neurosurgeon is confident his muscle weakness is from the syrinx but because he has had it so long it is a risky. The shunt might be to late and those nerves could be damaged already. Just not a lot of research on this stuff.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask how long since ur DH had his surgery?....have they looked for related conditions and checked his blood panels for low levels of vit D, B12 and magnesium and potassium? These can cause many of the issues u mentioned.

Syrinx's can collapse or shrink after decompression, but it can happen very slowly or very rapidly....so it may be he needs more time....not knowing how long it has been since his surgery....