Recently diagnosed, many questions!

[Sydders95]

Hello, I was recently diagnosed with Chiari Malformation after about a year of terrible headaches, neck pain, dizziness, fatigue, not being able to concentrate, "feeling drunk" and ENDLESS different medicines that didn't work. My doctor said my tonsils are a cm and a half down or something like that, I will be having surgery some time in the near future waiting for that to be scheduled now. My questions Are:
-How helpful was the surgery for you?
-How was recovery after? I know everyone is different I just want an idea.
-How long did it take to feel "normal" again?
- did any symptoms re surface after surgery?

[selmaS]

  We do have a list that was compiled by the members here of Drs they have been to, treated by and liked.

This list is not a referral nor an endorsement for those listed, it is meant to be used as a tool to research Drs.

Keep in mind you may need to travel to get to a Dr that is right for you.

[Tammers17]

Please make sure you see a Chiari neurosurgeon who is successful. Dr. Greenfield in New York is right now. Dr. Rosner also is a great choice. My decompression surgery was a failure because the neurosurgeon who did it remove too much Bone. Chiari is a progressive condition and there is no cure. There is a lot of misinformation on the Internet so please be careful and double check your findings by comparisons.  Decompression surgery helps to slow the progression of Chiari. My recovery was painful but went fairly smooth. It's brain surgery so of course it's going to be painful. It took about six weeks for the symptoms to become tolerable. It takes a year at least for your body to recover from brain surgery. I did manage to go back to work in six weeks. However, I am very Taipei and I'm always pushing myself. As the swelling went down in my brain, it's slid backwards and my cerebellum was hanging out into my spinal area. This is called cerebullar ptosis or brain slumping. I had a second surgery to install a titanium mesh plate and screws. This was to hold up my sagging cerebellum. As of now, my mash has broken and my cerebellum is once again sitting in my spinal area.  Now I need a surgery to have the mesh plate fixed. I also need a fusion because my disks have degenerated and are bulging. I also need to have a fusion because I have craniocervical instability. This is been a nightmare for me. However, that does not mean that your surgery will not alleviate your symptoms and that you will be able to continue a fairly normal life.

[Sydders95]

Thank you so much!! How did you go about finding a Chiari Specialist in your area? I Live in Maryland and when I tried googling one nothing came up. I currently have a very accredited Neurosurgeon but I never even thought about asking how much he knows on Chiari specifically. Everything is happening so quickly and is quite overwhelming. I appreciate you sharing your story with me and I hope the best in your future surgeries and healing!!

[selmaS]

Hi and welcome to the Chiari forum,

You are correct , we are all different in how we will respond to this surgery and the rate of recovery....having the right Dr is key !

As long as your Dr is well informed and experienced with Chiari and ALL related conditions things should go well for you...but it is those related conditions that will affect your recovery.

I had surgery in '09 not sure what my normal is anymore....but it took several years before I could do some things I had to avoid for far too long because of the possibility of triggering symptoms.

Most symptoms do re surface post op, and that is part of the normal healing process....the nerves were not working properly before due to compression....after they are over worked and it takes time to calm back down.

Surgery was definitely helpful for me and I would do it again if it were ever needed.
I hope I answered most of your questions if not, ask again...or if I created new ones....ask them too.

[Sydders95]

Thank you!!! I just have a lot of mixed feeling. Everything is moving so quickly and yes I am relieved I have an answer, but the relief to my pain is surgery.. that terrifies me. I know I'll work out my nerves and everything will work itself out. But Chiari seams to be a *****, and not one that goes away easy. Thank you again!