Chiari Online Support Group

Newly diagnosed saying hi

Hello my name is Tai (taya). I had been sick for some time and the doctors didn’t know what was wrong. They did a MRI and found the Chiari malformation but my doctor didn’t feel it was too important yet it was all my symptoms! So she referred me to a neurologist which i can’t get into until next month. I’ve been doing research on things and ways to position myself so i won’t have to many symptoms. Some days are bad some are ok. My grandmother helps me and i have two daughters one 17 and one 9. I was perfect 3 weeks ago and now here i am, still trying to figure out how to go back to work but I’m strong and hanging in there and appreciate that there is a support system out here . Thank you for allowing me to join. Have a great day everyone !

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Hi Tai
You are at the right place for research and info on Chiari. I would make a running list of items you want to address with your Neurologist. Sometimes if you call the desk they can put you on a cancellation list. I am in Ohio and it seems like bad weather days my doctor seems to have alot of last minute cancellations. I wish you the best as you figure all of this out.

Thank you. I will call to see if i can get in the list. Here is my email address ■■■■■■■■■■■■■■■■■■■ to send me that list. Thank you

Hi Tedwards,

you can send dmkaiser1 your email address in a private message. To do so, click on their avatar and you’ll see a blue ‘message’ option. Click on that & you’ll get a box in which to write your message. When you’re done, click on ‘message’ at the bottom of the box to send it.

Christina from Moderator Support

Hey Tai
What list are you looking for?

Is there a list that will help me keep
Track of my symptoms sometimes they are different and i want the neurologist to know everything

It seems like I saw a list several years ago on a website. I can’t remember where I came across it. Try www.chiariassociation.org and look at Preparing for your appointment.

Hello Tai, not sure what you mean by “perfect 3 weeks ago” but possibly that is why your doctor feels it is not too important yet. Also, Chiari doesn’t come on that quickly. It is something you would have noticed accumulate over the years. Now that you have been officially diagnosed, ask and demand to have MRI’s of your spine to make sure there are not any neurological issues pending, like syringomyelia. These are what I call “sleeping giants”.
When nerve damage is implemented by Chiari there are no re-do’s. I am a product of that. What does all that mean…? It is your body and now that you have been diagnosed…you will have to have this monitored the rest of your life. This is not the flu and after one or two visits to the doctor you’re “good”. I am guessing you are fairly young yet. I was diagnosed later I life.
Now, I have weakening muscles and still headaches. I have had decompresson.
. I also have syringomyelia. I usually feel like most people do after going for a LONG SWIM. That is how I feel basically everyday because of neurological damage. Much of my work was physical at times. So, after having several misdiagnoses, I would go to work and increase the severity of my condition. If there wasn’t anything “wrong with me”, I would have nothing to show my employers to prove any medical condition. So, in the name of getting the bills paid, I kept working . So, my advice to you, keep on top of it, ask many questions, and the second you feel bad make an appt. Why…? There is an obvious drought of neurosurgeons in our country. This is so or you wouldn’t have to wait so long to get in. You might even “start feeling better” and cancel your appt. Don’t…it takes to long to schedule and go in. Just go anyways. Well, not trying to hen peck you…:open_mouth:…just giving you advice from all the mistakes I made.

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http://www.mayfieldchiaricenter.com/pdfs/ChiariDiary.pdf
Here is a chart for symptoms.

Out of ALL the tests I’ve completed for my symptoms, I believe the CINE MRI has been the best tool. Its essentially a movie MRI that shows your spinal fluid progression up and down your spine. If there any blockage you can definitely see it. I know my surgeon at Mayfield Chiari Clinic (Dr Ringer) uses them, but I get the feeling many neurosurgeons dont order them or use them with their diagnoses .

http://asap.org/index.php/disorders/cine-mri/

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