syrinx

[worriedmother50]

My 26 year old daughter had chari surgery last year she started back with bad headache went back to her dr. and dx. with syrinx from c3 to c7 she is young has anylone know the outcome from this. surgrey vis watching it.
. .

[Viva001]

yes, the pain sometimes IS hard to treat; sometimes I am throwing everything at it.....

I know that many folks here have gone to the ER when the pain is out of control.

Even my very understanding NS wants me to take as little meds as possible.

[selmaS]

  Many times it is also that most pain meds do not work for Chiari pain....not sure what the reason is, but as Viv mentioned above some Drs and pharmacies avoid rxing meds that r sold on the street...or they limit how much or many times they will rx it for u regardless if u still have the issues....

  Did u find a chiari specialist for ur DD?

[Viva001]

I dont know the answer to why in your DD's situation (are they doing more tests?), but I do know that doctors--& pharmacists-- are under extreme pressure to limit Rx's that end up as streetdrugs.  It's the legitimate patients who pay for the relatively few addicts.
Also, there's a limited understanding about pain and how undertreated pain acutally causes MORE pain.

You might have to be more assertive.  what does theNS say?

[worriedmother50]

my daughter is getting bad head aches they dont want to9 give her anything for pain why?

[worriedmother50]

thank you.

[selmaS]

  Hi...sorry I was away today.....if they did a shunt she has ICP....and it could be her shunt is malfunctioning??? Just a thought..if it draws too fast or slow issues like she is having could arise.

Ehlers-Danlos is a connective tissue disorder and  is related to Chiari, it can cause those with it to have issues with meds ...allergies and other issues like adjusting to the meds so they r no longer effective.

EDS can also cause us to reject foreign matter...so, a dura patch made from material other then our own skin can cause a reaction, many  times it is one of excess CSF being produced....

This condition affects our joints as well as the connective tissue that hold them in place, so we r subject to scar tissue forming when we have surgery....and joint pain, muscle pains from our muscles trying to help hold us together....

All of us should use a stool softener to avoid straining regardless of where we r in our dx or recovery.....

Please keep us posted ....and sending u prayers and ((hugs))

[worriedmother50]

okay they put her on lacitives, no straining no moving her neck or lefting wow im worried

[worriedmother50]

she seen her dr.she said she wants an mri that shows her spinal fluid flow she lost her feeling in her left hand today im not sure what is up but coincerned

[worriedmother50]

thank my you so much fr answering. she did not have it b4 surgery. she did have have dura plasty and a shunt placed. I dont think she had a laminectromy.whay is ehlers-danlos? she is seeing her dr. at 12;20 pa time today.

[selmaS]

  Hi and welcome to the Chiari forum.

I am going to repeat what u said in my words to see if I am understanding ur question.....

Ur DD had Chiari surgery last yr and now is having HA's and was Dx with a syrinx? Do I understand she did not have the syrinx b4 her other surgery?

This could be the result of scar tissue blocking the CSF flow....I would ask what they feel caused the formation, and make sure she does not have Ehlers-Danlos too as I wonder about scar tissue formation and EDS being related.

I have other questions as well...do u know if she had a dura plasty and laminectomy  with her decompression...if so, what type of dura patch was used?

  Sorry for so many questions, but I really feel that some of the issues could have something to do with how she is doing now.