This might be a little lengthy. I finally had a chance to get a follow up with my NS after my CINE MRI and on the way there was a terrible storm. I live about 1.5 hours from his office. There was a jack-knifed semi and a lot of rain and wind.
When I finally got there and met with him, I think I wasn't myself. I had a migraine and took my medicine in the morning. He said he looked at the CINE and thought it looked pretty good. He then asked what symptoms were bothering me or most noticable since my last visit. I told him I have numbness in my hands, I'm still tripping over imaginary things and lately I've dropped things. I am not sure if I am estimating wrong or losing grip. It's usually when I am putting milk in the refrigerator, or putting away groceries. I seem to hit the shelf or lose coordination and drop things.
He said my Chiari is 5mm and he thinks my abnormal nerve problems may not be Chiari related. He wants me to go back to a NL and do a battery of tests to rule out B-12 deficiency, Peripheral Neuropathy, and ALS (Lou Gehrigs disease). He said he would write a letter to my primary and get blood work, a nerve conduction study and a full neuro workup.
He then went on to say that he was going to deny surgery at this point because it's invasive and he doesn't think Chiari is the issue. I went home and looked up the things he said he wanted me tested for and not one of them produces headaches as a symptom. Then I realized, I was assuming he remembered that the last time I visited it was for migraines all the time, dizziness and trigiminal neuralgia. My good weeks are when I only have 3 headaches.
I know he is trying to be conservative and my boss said he has to look at everything because he doesn't want a lawsuit later on. I took yesterday off because of stress and my dog went into labor. B-12 deficiency seems like a small thing, but ALS is a death sentence. It really threw me off.
I think I want to write him a letter to remind him that I do constantly have headaches, dizziness and more. I also want to tell him I understand him wanting to be extra careful, but I do not think he should disregard surgery. If he wants to play it safe ok, but I want him to understand the headaches have cost me time from work, wasted weekends, etc. I hate being stuck in bed in pain and missing out on life.
I so understand! The doctors here in Indiana are very cautious and cover their bases. I was told by a friend that some doctors won't "tell you to do" a surgery because they can get sued. They just present facts, ask for tests and tests and tests, then tell you options. Like a robot machine. I am not in a hurry to push for surgery however. I guess for me, when in my case their conservative estimate gave a 20% chance of it really working, and an 80% chance of it staying the same or maybe worse, I just decided to try everything else in the book first.
Don't be afraid to call the office, send a letter, or seek out another apt. Unfortunately sometimes it feels like we have to be our own doctor and go in armed with the facts. It sounds like you have a lot of reasons to have another chat! But there are ways to deal with Chiari's besides only the surgery. I caution you to just jump to surgery as the only hope. I know it depends on your issues, quality of life, and pain of course.
Life is no picnic here, but the docs are working with me at the new Neuro doctor's and I am happy to try the options they are offering in meds, injections, nerve blocks, and honestly, allowing myself to feel what I do, and not feel so guilty about it. I hope you have some supportive family/friends. That has been my own lifesaver during the process lately! Good luck!
I’m sorry that you left your Neurosurgeon’s office with more questions than answers. That is definitely frustrating:( Is your NS experienced with Chiari? I ask this because it’s one thing to be cautious, but another problem entirely if he doesn’t believe that Chiari can cause serious problems. Either way, it is always good to get more than one opinion. There are lists of patient recommended doctors…you can find links on our resources page and on our doctors page. I hope you get answers soon!
I totally agree with Crystal. We hear a lot of people that leave their NS office with more questions than were answered.
Please let us know how you are doing ...and remember ....You are your own advocate. Call the NS nurse and give her the list of questions or request a call back from the dr. I try & take someone with me to all office visits and a little tape recorder. There is so much information going on you need assistance. Crystal already told you we have a very informative Resource page.
Thank you everyone for your replies. My NS is Dr. Asgarzadie from Loma Linda. He lists Chiari in his credentials. It's extremely hard with my HMO to find someone. I had to get special permission to go out of network for him. I am going to follow up.