Chiari Malformation type 1

Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !

Hi, @duke77 - I think your experiences and comments here would be helpful to others in this discussion on chiari malformation. Wondering if you would share more about the outcome you mentioned was not that good, and also what you were saying about knowledge being everything?

lisaluciier,Hi have a whole lot of deficits like to type this is taking me forever, I can only walk around 2000 steps intense pain burning and numbness in arms hands and back, my right leg goes numb besides the brain fog lol these are the things that happen in a regular day that I am aware of.

Hi, @duke77 - sorry that to type your post took forever. I can imagine that would be hard to take.

Hoping some of the other members who have posted here — like @tracyeylens @mfann @luckygirl @david33 @oh_suzie_q @giglgirlnm @jillweinandt @denise32 — will join in with some thoughts on the slow typing and only being able to walk around 2000 steps; the intense pain, burning and numbness in your arms, hands and back; and the brain fog.

What is the next step in your treatment, @duke77?

Anorwalk, I know what you are going through!! I had and was diagnosed with the same problem and symptoms back 3 years ago. I couldn't get any answers from my doctors, so I decided to see a specialist. I had this special MRI done on my brain. The next week I had surgery, I had 95% blockage in my brain. They removed part of the back of my scull for circulation. Two weeks after surgery had complications and contracted spinal menengitis, I was very sick, lost 30 pounds in 4 days and was in the hospital for 14. During my menengitis, The back of my head swelled severely and they thought they might have to go back in and remove the pressure. The specialist gave me some sort of antibiotics which brought the swelling down. After the surgery I still have periodic headaches, some short term memory loss, and comprehension which is all normal after surgery. So far I have been OK. I have a friend who had three surgeries from chiari, he went to the same doctor as I did. I do not mean to scare you, I am sorry if I am. If I were you get two opinions from doctors that know about it, and if they both agree, see what hey have to say! If it is bad take care of it right away!! You will be fine!! I was scared at first, but now I am glad I did it! Recovery takes time, but then it's over! If you need to talk about this, I am here for you! I have been there!! I hope this information helps! Let me know, hope to hear from you soon!
trouse

I wanted to let everyone with the diagnosis of Chiari to consider having the surgery but make sure your neurosurgeon performs a lot of them. I had an excellent surgeon and he performed surgery on me and I am a almost 60 years old. My headaches are not nearly as bad as pre-surgery. My surgery was two weeks ago. I would like to know if there is anyone out there that has had the surgery and can tell me if their headaches subsided and if the back of your head will ever feel normal. Thanks, Marion

i was diagnosed with Chairi Malformation in 2003, i had surgery soon after being diagnosed. It saved my life, as i was getting worse and worse as the days passed. It is now 13 years later, I don't regret having the surgery. My opinion is if you are having many issues to try and talk with a good surgeon and see what it is that they can possibly do for you. I know that they can offer some type of steroid to help with the swelling until you decide to do the surgery. You always have options, just remember that.

I was diagnosed with both Chiari Malformation and Syringomyelia back in August 2015. Had surgery in September 2015. My surgery was successful. It accomplished what it was meant to do by stopping the progression. I do have issues with my hand, but had EIP Opponensplasty last summer to improve the usage of my hand. I continue to be monitored by a neurologist yearly. As of my last MRI this past spring, everything continues to look good.