Hi, I'm new here!

Hi, my name is Monique and I’m new here. My diagnosis was very recent. About a week ago. I have been suffering from headaches and other strange symptoms for many years now. Now that I know what chiari is, some of my symptoms make sense. But my main issue in the last few years have been headaches. My diagnosis came because after 2.5 weeks of suffering from terrible headaches that came from the back of my head and moved forward toward my temple. No amount of aspirin was helping, and finally on Tuesday I experienced the worst headache ever. It started from the back of my head and soon after I was suffering from facial numbness, pain in my teeth, problems focusing my vision and when I would go to swallow I felt as though I couldn’t. All day I dealt with this, fearing I should have probably gone to the hospital. But in the morning I went into my neurologist first thing and had a stat Mri done which showed a 8mm chiari malformation. I had never heard of this, so I was terrified. Now I have done so much research and I have my first appt with a neurosurgeon tomorrow to see what they believe is my best treatment option. I’m still scared, but trying my best to be brave and get through it! Hope to talk and meet other wonderful people on here! :slight_smile:

you will be fine, take notes as no matter what the surgeon says you forget half of it. I took my husband with me, as being so frightened I took things in a different way. I have had surgery and come out the other end. best of luck x

Keep ur spirit and hope up! This condition is rough. I had decompression Sept 14th last yr. Will keep you in my prayers. Gentle hug!

Thank you both! The appt went alright. The Dr is sending me for 3 more Mri, including one to check csf flow. He said he believes pain management is my best treatment, and that making the headaches tolerable is the best bet. He said since my cm is 8mm, 10mm+ surgery is necessary and anything else is only necessary if something else arises. Is that normal? I kind of felt as though he wasn’t really listening to me and my concerns. :-/ I have to make the appt for the Mri and then go back to neurosurgeon in a month

Hey Monique, if you feel like he was t listening to you, try a different specialist and get yourself a second opinion. I know how it feels to be recently diagnosed and having a neurologist not listen. I was handed off from one to another to another and finally to another. It took a few neurologist to finally listen to what I had to say and believed me on what I said I felt. I now have surgery this Halloween. I tell you what, being 22 and not really knowing too much about the surgery or chiari for that matter, I’m a little scared. But as a lot of nice people on this site will tell you. It’ll all get better. If you choose to have surgery do me a favor. Read over other people’s experience on surgeries on this site. It’s helped me a lot for sure.

Also, remember to keep us posted on not only on what you decide, but also talk about your day to day living. It helps to just talk to someone

Thank you! It’s hard explaining all of this, so it’s nice to have people who understand! It’s funny, I mentioned this to my friend (who has known about my headaches), and when I said what it was called, she immediately said, “my sister has the same thing!! You guys need to talk!” So last night at my friends husbands party, I spoke to her sister and it was crazy. She has so many symptoms that I’ve had and currently have that no one can explain. It was so amazing to talk to someone who gets it, and it made me feel not so crazy for feeling the way I do. Between this group and her, I felt like I was normal for all of this

So I went for 3 Mri this morning, and 2 of my reports came back. The results from the thoracic and cervical both stated herniated discs and syringomyelia. Does anyone else have this? Waiting on the results from the brain/spine cine Mri

I have a question, has any one had issues with memory and feeling like you’re walking in a fog constantly?