Have had enough

[Ro_AB98]

Hey, I’m 20 and had surgery 6 years ago. Helped hugely but never got rid of symptoms completely. Past couple years symptoms have started to creeep back. My surgeon changed hospitals 1yr post op and my new NS wasn’t really a specialist and never seemed to really listen, I was discharged 3yrs post op despite daily headaches. She said “everyone gets headaches - its normal”, so I just kind of dealt with stuff my self but it’s got to the point now where I’ve got my GP to refer me to NS near University. Im on no meds and really struggling pain wise, missing class, sleep and social stuff. Do I just wait till I see the NS (don’t know when I’ll get an appt) or go and see the GP? I feel it will be pointless going to the GP cause I think they’ll just say wait to see the NS or try and give me codeine (which I know doesn’t work for me - I’m deficient in the enzyme that breaks it down). I know tramadol will work but I don’t want to be drugged up :/ Sorry that was rather a ramble! But yeah I’m just fed up of constantly being in pain.

[Djoslyn]

I feel where you're coming from I'm in the same boat I went to a general practitioner and I'm having to find a neurologist I can help me with my pain

[selmaS]

Hi and welcome to the Chiari forum.

KerriC gave you some good information...and posed good questions. Another question I am wondering is, did your Dr rule out ALL related conditions prior to your surgery....it is possible you have related issues causing your symptoms....many related conditions have similar symptoms and it can be very difficult to know which is causing them.

Having the right Dr is key....and if it not a true Chiari specialist they will not know how to help you, and many  NS's refuse to help you once you have had a surgery...a true Chiari specialist will not turn you away.

[KerriC1]

I would say you deff need a chiari specialist. Surgery is not a cure and can continue to cause problems even years later.

Do you remember what was done during your first surgery? Perhaps they weren’t aggressive enough and didn’t open the dura?

If your GP is knowledgeable enough he/she can at least guide you in the right direction and order tests such as an updated MRI if you haven’t had one in a while. But the specialist may have to interpret those results

I had decompression 3 1/2 years ago and had the dura opened but now have adhesions to the brainstem and mesh plate causing another csf obstruction so I’m scheduled for surgery no. 2 in January.

Good luck and prayers you find answers