So now I'm cured and I no longer have Chiari!!! Some doctors just suck.

[Veronica830]

It was always my understanding that there was no cure for Chiari. I researched countless medical sites and spoke to many people on many forums. I have been to see several neurologist and settled on Dr. Molinari of Ridgewood because I was tired of looking and because she knows my neurosurgeon. My neurosurgeon Dr Dambrosio told me that there was no cure or magic medication that would fix Chiari all we could do was take medication to manage pain and/or have surgery to alleviate it.  So I had surgery on January 18, 2013 and for two months I felt better. I was tired and sore but better. I also had a full time maid and my mother moved in until March to help. All I did was rest so I thought great it worked and I sent my mom home and after another month or so let go of the maid. As I got back to my routine of dusting, sweeping, mopping, laundry, etc. slowly my symptoms came back. As of now the only ones I don't have yet are severe sensitivity to light and sound. So I went to the neurologist and she told me it couldn't be the chiari because I no longer had chiari I was cured. She also went on to tell me that although she had only treated about three patients with my condition, if I was going to have pain I should have never felt better after surgery because the one patient that she had that the surgery didn't help felt bad right after surgery. I just can not deal with doctors anymore. Their unwillingness to learn about new things and accept that they are not all knowing and each patient experiences symptoms differently. I am just about ready to give up and at the same time the bills are piling up. I am not working and she thinks I'm fine. She wants me to go to rehab and get massages. I filed for disability but with her I think I might not get it either. So now I have to look for a new doctor because my neurosurgeon wants me following up with a neurologist. This is crazy. Thanks for reading my rant.

[sherimom]

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

[selmaS]

  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.