Hi everyone. I'm newly diagnosed...tons of?

Welcome Greetings and Introductions
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Hello everyone. I am newly diagnosed, yesterday actually. I have been having a lot of symptoms. I was having a lot of eye pain and after a trip to the eye Dr. my pcp ordered an MRI on the suspiscion of an eye tumor. Turns out it's a chiari malformation type 1. It's 5mm. My pcp was kind of dismissive about it. She didn't impress upon me like she knew a whole lot about it though. They labeled it as "borderline" which seems, after some research into this, silly considering its 5mm. Isn't that like fairly past borderline when it comes to a chiari malformation? I just want to know what I am working with here.

My symptoms are strong headache/migraine, dizziness, confusion, I have loads of eye pain, especially in my left eye. I can't even look to the sides without it hurting for hours. I can't move my head around quickly. I have to be very gentle with my movements. No straining of any sort, no loud talking, no yelling, it just bring on a way worse migraine. These headaches are every single day. I had two days last week with no pain and I felt like I won some type of lottery. Bending over hurts my head. My face feels all flush/pressured (not sure of the right word to use for it). Light and sound sensitive. Ugh, I feel like a cry baby when I put it all out there like that.

Anyways, I just wanted to introduce myself and my lil story up to this point. My name is Natasha, I'm 31, live with my partner and our 3 daughters in Missouri. I have a BA in psychology with a minor in sociology. I recently lost 145lbs by eating healthy and taking care of myself. I'm looking forward to interacting with all of you and educating myself on this condition. I'm really quite scared as I have no idea what to expect with it and the doctors and the whole ordeal. Glad to of found a support group so quickly.

I've attached a picture of my MRI...

646-NatashaandNormalMRI.jpg (221 KB)
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Hi Natasha. I’m so sorry to hear about your dx. I’m sure this is a lot to take in. Yoursymptoms are so similar to all of us.
I’ve found this is such a great place to ask questions.
If you have any at all I’ll be glad to offer up any insight at all. I’m glad that they have Dxd you and although your dr has seemingly shrugged it off, your journey has begun. We will help you where we can.
Feel for you Natasha! You aren’t alone.

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Welcome Natasha we are glad to have you here with us if you have any problems or questions feel free to express yourself, because we really do understand what you are going through.

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hey natasha

welcome to the board, we are a great bunch of people, so support is high,

i know this feels scarey, but one good thing is, you have aname to your symptoms,

have you seen a Nuerologist/nuerosurgeon yet?

2mm up is called a type 1, i have 8mm, i was confused when i found out,

i also wasnt taken seriously until about amonth ago, and then had decompression surgery,

get a feel of things, research, ask questions, this is your life,

try not to stress as it can make it worse, rest is critical, understand your limits.

we are here for you

joelene

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Thank you so much for welcoming me in! I plan on really spending some time on here when my head allows it. Sometimes I have to read things several times to get a hold of what it's saying.

It does feel incredibly nice to find other people who know what this feels like, inside and out. It's scary stuff. I was set up by my pcp to see a neurologist on the 8th of next month. I'm so worried that he won't have any experience with this disorder. The way my pcp was kind of dismissive was a little unnerving, especially after reading all of this on here. I have felt so much worse, progressively, over the past couple months. Sometimes I can't even focus on someone when they are talking at all and it makes me feel so stupid. My brain is just not able to catch up with people as fast as they can talk, if that makes sense. I've been trying to explain this to ppl for a while now and they look at me like I'm crazy. Now I know I'm not!

Thanks again and I look forward to getting to know you all. Much peace! And I wish you all a pain-free day tomorrow. :)

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Read read read. I am finding the same and am also newly diagnosed about a month now. I am educating my physican about Chiari I. I am still in the work up stage. I have a 2nd opinion with a neurologist I have known for years and know he will give it to me straight. Mine was found when I could not walk straight line after a severe headache. Still have more questions than answers, but in time will have answers. Lack of answers is for me very unsettling. I am in health care and professionally have dealt with few if any Chiari I pts. That is saying something since I have been an RN since 1979 and NP for 7 yrs. The information I do find is split on how and when to deal with the condition surgically. The amt of ectopy of the cerebellar tonsils is not a solid criteria. I find two camps surgery early and others that say not unless symptoms are severe. It is a relatively new area of study I am gathering as far as best practice goes. If I get any pearls of wisdom from any of my new providers I will share gladly. Thankfully my primary while ill informed is not dismissive.

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tarshasheart4u........this might sound very scarey, but i couldnt focus on anything a meter in front of me, i was meant to have spine surgery and they ran MRI on my chiari, and well a complete fluid block in the foramun magnum, so got brain done, i was unable to read books, i felt pressure in my head from doing nothing, had mini strokes,i got headaches but got really bad in the back of my head, i was forgetting things, couldnt concentrate and just wanted to be left alone, my BP rose, HRT was up and down, i was so figtqued i coulldnt stand for long periods, some days i felt i couldnt breath, and my muscles didnt want to work. life was unbearable, i have a young family, and found it was difficult to even take them to school, i got angry so fast, like snap...

now since surgery, i bearly have headaches, i still get little pressure in head, my HRT still spikes, still very figtqued, memory is better, breathing hard at times, my legs havent changed, but nearly 4wks post op, i think its better, but im still recovering, i still need back surgery, (i have a intradural lesion compressing my spinal cord), im under investigation for MS, motornueron diease, and cadasil, im a hard case for my nuerologist, lol i find funny,

i use a walking stick when im weak legged, it also helps with balance,

each person is very different, i always counted my lucky stars i didnt have miragranes that put me in bed,

my surgeon would not operate until he felt it was nessasary, fluid blockage in spine or brain, could be classified as emergency, if left could cause permament damage,

remember there is no cure, you will have chiari for life, surgery can stop it becoming progessive, and relieve symptoms,

there are also a theories that show CCSVI is the problem, and if you take the pressure off it, can relieve symptoms,

anyway thats problems alot of information to take in,

PATTY..... what question havnt you been able to find the answers to?

joelene

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I look forward to your insight Patty. :)

Joelene, sounds like you've been through quite an ordeal and it's still going. I hope you continue to improve during your post-op recovery. I have developed over the past 10 days or so a blurry halo type thing in my left eye. It seems to occur when I have to focus on something for more then a few seconds at a time. And usually only things that are close to me. All my pain is worse in my left eye than in my right. Is that a chiari thing?

Does anyone have any experience with the MRI's. Can you offer any insight on mine? What types of questions should I be asking at my fist neuro appt? I had an MRI a couple days after my daughter was born 2.5 years ago. There was no mention to me about this chiari malformation. I am wanting to go to my Dr. on monday and order those images and mri report. Would that help? TO bring that mri and this current one with me to my neuro?

Thank you again, so much for all of your help.

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Natasha,

The size of the herniation is not as important as your symptoms. It sounds like you are suffering quite a bit with this and all of your symptoms sound like Chiari. You need to get a referral to a neurosurgeon so that your MRI can be properly evaluated. That would be a starting point. At this time, you don't know whether they will recommend surgery or medication or what, but hopefully will have some treatment options for you to so that you can start feeling better. I'm glad that you are researching on your own. We need to be our own advocate when it comes to Chiari since not many, even in the medical field, know much about it. Congratulations on the weight loss! That is fantastic and I'm sure will help in your recovery time if you have to have surgery. Keep us all posted so we will know best how to support you:)

Carla

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Welcome Natasha! You def. came to the right place. Amazing, wonderful people like you and me who know exactly what you're going through. Keep the questions coming. I may be too late with this bit of advice. Always bring everything you have to any NS appt. The more you have, the better. Also, if you have more than one image, they like to do comparisons. Keep us posted.

Love, Christine XO

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Hey Natasha:)


Welcome to the group!
We definitely know what you're going through. I feel your pain with the eye thing and not being able to move it without it hurting. I had that for awhile. I get that once in awhile if my head is real bad but no where near as often as I used to. My head pain was rediculous before I had surgery. I was waking up daily with pain so bad I had to vomit. There were days I couldn't turn my head or neck. Finally after going through different migraine meds my doc sent me for an MRI and they found the Chiari and sent me to the NS. I had surgery and had a long and rough recovery. Next Tuesday the 25th will be my 8 year post-op anniversary!! (I just realized this as I was typing. ) I'm doing much better now. I still have head pain but nothing like it was before. I have more symptoms now. I don't know if they showed up after or have always been there.

I hope you get some answers soon from your NS

If you have any questions we're all here to help answer them!

-Alicia