I am new to all of this and not sure where to start… I was diagnosed with Chiari 1 just a couple of weeks ago. I had an MRI because I had gone to the Dr. about my left thumb and index finger twitching, at least that’s what I called it. The Dr. called it a tremor and started asking me a bunch of questions. I am 40 so I honestly thought all the other issues were simply because of my age. By the time we were done she was concerned about the possibility of MS so scheduled an MRI. I got the call two days later to come in and discuss the findings, and well, here I am. I have suffered migrane like headaches for several years. After many visits to the Dr.'s office and nothing working I gave up in them and just dealt with the pain. My vision went from being 20/20 for 30 years to now needing full time glasses with odd issues with my eyes. And I am tired, exhausted, all the time. Again, I just thought it was getting old!
The thing I am curious about, if anyone can answer it, is that I had the temors for about a month. They were so bad I couldn’t do daily things because they were in my left hand, and I am left handed. This past weekend they pretty much just stopped. Is that normal?
I have an appointment with the neurosurgeon next week and not sure what to expect. My Dr. Made it sound like surgery was a must but based on what I am reading, it’s not really a “must”, or is it?
Any help, suggestions or whatever would be greatly appreciated!
Hi, JMJB! I'm glad you joined us and are asking questions!
First of all, 40 is not old! :)
Second- to me personally, it looks like you went to a good doctor(Im guessing by her asking you a lot of questions and taking a look into your head).
I tend to hear that generally american doctors are preforming surgeries too often. Usually the surgery is done if the patients symptoms are getting worse, if there is a concern that they can turn life threatening or cause a permanent nerve damage, like Chiari+Syringomyelia, or when Chiari is causing pressure to ocular nerves.
If your doctor thinks you should have the surgery, but you are not sure about that, go for 2nd opinion! Educate yourself about Chiari, ask the surgeon to explain why they think surgery is(or isn't) necessary! That will help you get to a decision.
Hi JMJB… I too have the twitch between my thumb and right index finger. It seems it comes from the muscle area in between… And it will make my right index finger go back and forth uncontrollably. I first had this symptom last spring before I knew I had Chiari. The twitch lasted for a solid month. It went away for 5 months and I attributed it to using the computer mouse at work or texting too much… However, it just came back two weeks ago. I have no idea of it is related to my Chiari 1, as all of my doctors dismiss my symptoms, but I wanted to let you know that you are not alone with that… And actually find some comfort knowing that I’m not the only one who experiences this as well. One of things I really like about this group is being able to relate to others when you feel alone sometimes with your symptoms! Best of luck to you and with your appts!