Stuck :\
 

I went to see a neurosurgeon yesterday and was basically told that chiari is something you'll have to live with for the rest of your life, we can't do much for you. He also told me that the 20 other symptoms I have may not be from the chiari they could be from other things. However the other symptoms I have besides the headaches have been linked to chiari malformation. It may just be a coincidence but I promise I'm not going crazy. My question is has anyone been experiencing derealization with chiari. And my other question is do you think I should see another doctor for a second opinion or should I learn to deal with this?!

Hi uc 1228:) my name is Meggie. I haven't experienced the de-realization however I would highly recommend a new neurosurgeon. Chiari is usually manageable, you don't have to just live with it. There are surgeries available like decompression to relieve a multitude symptoms (careful who you pick for this one I would highly recommend The Chiari Institute in Great Neck New York) if deemed beneficial, other treatments and medications area also available to minimize symptoms.
I had a syringo-subarachnoid shunt inserted last year and although I was recently told this is not the optimal shunt for a syrinx (syringopleural has the highest success rate) I have had a significant decrease in migraines, less pressure in my neck and head along with slowing the loss of control over my legs. I am on Lyrica for the neuropathic pain, myofascial pain syndrome and accompanying parasthesia which helps immensely. I also recently underwent occipital nerve blocks for my chronic migraines which has helped a great deal and will soon be trying botox for the other areas of my head not numbed by the former.
Please don't suffer in silence as the only one it hurts is you, there is help out there. If you have time the web site for The Chiari Institute is a great resource tool as well as the American Syringomyelia Alliance Project (ASAP) website which offers support as well as the latest medical information all for free.
I hope for you the best.:)
Meggie

Hello. I was diagnosed with Chiari back in Feb of this year. My diagnoses and subsequent surgery was a whirlwind. From time of diagnoses to being under the knife was 3 weeks.

My NS did say that Chiari is something I'll have forever. There is no getting rid of it. It's a defect that we're usually born with. I can handle that.
But he did say decompression surgery gives relief.

I had the decompression surgery and a laminectomy of my C1 and C2.
I'm 6 months post-op and while my symptoms are returning (I probably did something to myself) I felt great up until this point. My headaches were gone. I was able to concentrate and actually have a life.

If your doc isn't discussing options with you, I'd seek out a second opinion. It is a manageable thing that you don't have to just deal with.

Good luck!

Yes seek additional help. I have an arachnoid cyst that was causing my Chiari qnd spinal cord compression. It did take me 3 months to get surgery. My ns although he did nothing at first and kind of told me it was no big deal did say he would check it in 3 months to see if it was growing or changing and a week before the apt I had emergancy surgery by the same ns. Sometimes presitence pays off. I will forever battle until I am back to myself. I know have occipital neuralgia because they waited too long and the nerve got damaged. So when you have a rare brain disorder continue to fight. I gave up for about 6 months because I didn't have the energy to fight them but I will never stand down again because if you stop seeing drs or keep things in they won't suffer only you will. Hope this helps