Added to my diagnosis

Went to my neurologist today. Not only I have chiari but I also have a spinal cord lesion… I was so in shock I didn’t even ask any questions. Onto the neurosurgeon. Dr. Mollman her I come!! Anyone else have this???

Hi Andrea, I know how scary a new diagnosis can be. I usually try to educate myself smartly (I stay away from articles / info that isn't science-based) and make a list of questions I want to ask the MD. I also work hard to relax as much as possible which helps my nerves. Please keep us updated on how you are doing. Gentle hugs.

Hi Andrea. Aubrnm is right. Educate yourself as much as possible through professional periodicals and websites. Then make a list of questions. As soon as you think of something you want to ask, write it down. You will never remember everything while you're sitting there in the examining room. And remember, you haven't been given anything you can't handle. Stress will not help, so give yourself a break. Make yourself as comfortable as possible, and take one step at a time. You will not get results or answers overnight. So, be patient. Visit us often for support.

Hi! I was diagnosed by MRI in March. Was scheduled for June 15th Surgery. It was postpned. Now July 29th is my new surgery date. I was not diagnosed with lesions, but a 9mm chiari malformation. I was also in shock. I left the Neurosurgeons office more confused than I had been all my life. I don't know what I was expecting when I met the surgeon. I guess my brain wants to hear "ha ha ha just kidding, go home", yet I sat there trying to find something to ask him. I could not come up with anything. By my pre-admission testing, I had a list of them.

I wish I knew the secret to making this period a little easier, but I'm sorry I do not. I can offer you a newly diagnosed ear to tell your trouble to, and to say a prayer for you. I do wish you the best for a speedy process and even more rapid healing.

Recently diagnosed. I’m at the point with head/neck pain, hearing loss, behavioral changes and eye problems that I am looking forward to surgery. It’s a long haul for healing but there is hope on the other side. It’s good they caught it when they did.

Hi Andrea, I am also recently diagnosed. I have an 8 mm Chiari. I also say educate yourself, but don’t let all the information scare you. Make a list of questions and if you don’t feel comfortable with the answers you get, go for a second opinion. I was sent to a neurologist who told me my Chiari couldn’t be causing me any problems because it was too small. He had the audacity to tell me this after I almost fell 4 times in his office trying to do the heel to toe walk. I have dizziness, balance and coordination problems and several other issues. Just know there are people here who understand what your going through, I’m sending prayers your way!!!

What exactly is the lesion???

Thanks guys for all your support! Knowing I’m not alone in this makes all the difference in the world!!!

Andrea I have chari at 8 mm and had surgery in 2010. The surgery helped me a great deal with symptoms. Please know the recovery is rough and it is not a cure all! This is a life of taking good care of yourself and taking control it it and not letting it take control of you! I stay active scuba dive, snow skii, play with grand kids and work full time! I stay close in with my neuro doctor and surgeon. I just had to have a procedure yesterday to inject strong steroids into the neck while I was asleep to help with pain and stiffness. I still suffer with head aches and body aches which I go for massages monthly. It’s a fight but be strong! I pray a lot and look to God for strength! I just wanted to be upfront with you I had to have surgery because my brain was actually shutting down but it was not a cure or a fix only an improvement!!! Hang in there!

Hi Andrea,

Always scary to get any diagnosis, but you are not alone and don't think you are. I was only diagnosed last month but thought I was going crazy with my symptoms. Listen to your body and educate yourself. Don't be afraid to ask questions it is your body. Goodluck with everyone and keeping talking because it does help.

Thoughts are with you.