Hi,
I totally understand your frustrations. My son had surgery when he was 16, he is now 20 years old. He was a wrestler when diagnosed and had to quit what he loved most. Afterwards, he recovered well and was back to school in under a month, feeling much better. Most of the symptoms were gone and he seemed to do well for about 6 months or so. He started having mild symptoms again. Off and on, over about the next two years, he was up and down. Several ER trips, to be told repeatedly that he must have migraines and that the chiari had been fixed so it couldn't be that. After a particularly bad episode when he was at work last year, another ER trip to a very well known hospital, and yet another "it's a migraine" - decided to get a second opinion. I believed in his symptoms, he is not one to tolerate being sick or anything either, and that last trip to the ER - I was scared when I took him and I don't scare easily.
Finally, we found another specialist, two hours away, who could see him. They, and the NS have been AMAZING!
I was not aware that scar tissue could cause his increasing symptoms, that it can't be imaged on MRI/CT's and that could be the root of the symptoms. The only way to know for sure would be another surgery. So he and dr worked out a gym workout that allowed him to continue to modify his lifting routine. And, it worked! His symptoms went away and he did well, no more pressure headaches etc...
Most recently, he is again having problems with his back - just saw NS today and is having entire spine MRI and will see dr next week again. It's a two hour drive, but SO worth it.
My point in the really long post is this - DON'T give up - rest from the fight if you need to, but don't give up. There ARE good NS's out there - there is a list here somewhere with dr's people have seen. It makes a huge difference to have a dr validate your experience, even if they can't 100 % fix it, just knowing there is a real reason why you are feeling like this, makes a big difference.
Rest from the fight if you need to....it is a hard battle....but I hope you don't give up entirely. I truly wish you the best in finding a dr that DOES listen and understand. Good luck
Hi and rants are always welcome as they help flush the negativity from our system.....
For many we do feel great post op, but around month 3, some symptoms return, the more we do the more we will feel it, but this is part of the healing process.
Unless u have new symptoms or feel worse then b4 surgery it may just be healing and that u r doing too much,.
Another possibility is u have a related condition that was not discovered pre op.
U will want to make sure syringomyelia, tethered cord, and ehlers-danlos, ICP and POTS were all ruled out as they ALL can cause symptoms similar to Chiari symptoms.