Hi everyone! My name is Ambyr. I'm new here, and just found out I'm a Chiarian a few months ago. I'm a 31 year old mother of 2, a computer programmer/marketing specialist, and avid geek.

I am, as mentioned, a total nerd, and when I got a strange notation on the bottom of my MRI results (“Tonsillar Ectopia with Cerebellar tonsils extending between 3mm and 4 mm below the foramen magnum” to which my doctor said was nothing to worry about), I set out to learn what it meant. I was the one that found out that means I had Chiari's Malformation, and I was the one that explained it to my doctor! Fortunately for me, I have a doc that doesn't mind learning, and we are going through this together. Not as good as if I had an expert, but that's what my neurologist is for .

After doing a CSF study, we found that I actually have a 7mm decent of the left tonsil, and 4mm of the right. I have good days, and I also have some very, very bad ones.

Since October, I've set out to become an expert on Chiari's. I've read everything I can get my hands on, started reading medical reports, papers, and case studies... online articles, and anything else I can get my hands on.

I have a whole list of symptoms which I won't bore y'all with... and my case of Chiari's is hereditary. I lost the greatest man in the world, my father, to complications with Chiari's just a year ago this past July, and it looks like at least my daughter has it, if not my son as well.

I have a blog where I try to keep up on what I'm going through, because I have found that the most comforting thing to me through this journey is not feeling alone. I keep a blog to connect with others, and hope that others can feel better by reading what I'm going through mirroring what they deal with.

My neurologist and I have elected to try medications before surgery. I've been on a med to limit the amount of CS fluid I produce since November. It's actually done a pretty good job. I'm no where near 100%, but I am much better than I was. I go back to the neuro in Feb to reassess and rediscuss the surgery. On my good days, I know I don't want it... on my bad days, I'm ready to schedule it right then. I'm pretty sure that in the end, I'm going to do it. I don't want to live with the pains, the mental problems, the limitations and fears, and I don't want to end up like my dear papa.

So that's me... my intro. I look forward to getting to know you all better!

I am very interested in your story. My diagnosis and subsequent surgery went very quickly in early 06 due to the severity of my symptoms and syrinx. I was numb in January 06, diagnosed in Feb, debilitated in March with surgery on April 11. When Dr. Barth Green returned from out of the country, I was first on his list. As a result, I never had time to explore my alternatives. Following surgery, he patted me on the behind and said go and live well. Actually, truly, his job was done and done as well as research has proven. Unfortunately, the affects from AC/SM do not end there, as you know. Today, I, am trying to get information and find a 'life'. If it begins in helping others find help and get the information and options out there, so be it. I also have a son, who has his entire life exhibited signs, and went undiagnosed. He is now 21 and does not want to know or be like me (in illness) however close we may be.

I am anxious to hear more about alternatives and how they are working for you, about your recent MRIs and how they are reflecting change, about your children and their diagnoses and treatment plans, about your physician, are you trying any other natural treatments, ie: cleansing of free radicals. Your story is unique and important. Are you connected with any local support group or national one? asap, ChiariansUnite, Facebook groups?

I am looking forward to hearing more.... ~WyndyHopes~

Wow. You really were pushed through quickly! While your options were severely limited, it is nice to hear that someone out there got quick responses to such problems.
What my neurologist and I are trying now is a medication that limits my brain fluid production... and it is a common seizure medication (and sometimes used as a anti-depressant). While I do not have seizures, and feel no need for an anti-depressant, I am very happy with my Topimax. It does help limit my headaches from horribly and daily to really bad and a few times a week.
Then, I have another medication that will get rid of or at least make bearable 80% of the headaches that I do get. This one is called Midrin (generic is Isometh).
I take up to 2500 mcg of B12 a day. That helps with my fatigue, metabolism, nausea, and sometimes with my brain fog.
My last line of defense is a butt-load of caffeine. I drink Crystal Light On The Go waters, Strawberry/energy. They have 120mg caffeine per drink, and I have a minimum of 3 of those a day, but usually closer to 6.
I did quit smoking recently, as I know it limits the amount of oxygen to the brain. It was HARD, but I'm really glad I did it. I would love to say it helped a ton, but I can't really vouch for that, yet. It's only been a few weeks.

As for organizations, I'm still a bit of a loner on this one. I'm on a few facebook groups, and visit many sites of organizations. I do have a blog of my own experiences and rambling... and I am a member of this site and the *****, as well... which are my two favorites. I love the interactivity on these forums.

My daughter feels much like your son does. She said "If I have it, I'll know when I'm 30". I think of it as this... she knows what I'm going through. And when/if things start getting bad for her, she knows what happens, what it is, and what to do. We've decided to let it alone for now.

You are welcome to contact me anytime. I love making new friends, especially chiarians!

I am now a reformed smoker and I quit right before my Chiari decompression in 2004. So kudos to you for quitting now. If you do have surgery at some point, you will heal much faster. Smoking is toxic for anyone who has back surgery or even just degenerative issues so you made a step in the right direction.

I just wanted to ask a question about your CSF production. Are you saying that your doc is treating your headaches by reducing your csf volume? And if so, do you to know that caffeine is a major csf stimulant. I had to have a spinal tap to rule out MS and the neurologist "prescribed" 2 cups of very strong coffee 1 hr pre-procedure. She said it would bump up my volume therefore reducing the post-procedure headache. It did help afterward, I had more back pain than headache.