Which advice would you give to someone who has just been diagnosed with Arnold Chiari?

Advice for the newly diagnosed with Arnold Chiari, written by people who have lived it. What they wish they had known on day one.

Posted Apr 12, 2017 by Ljdb 2620

Live your life! Don't let this stop you from your goals! It's not a death sentence, unless you let it eat you alive! Go! Get out there, despite your issues, and enjoy the days you have been given!

Posted May 10, 2017 by El_Choppo 1250

I know how awful it feels at first. As if you've been handed a death sentence. You think of all the things you wanted to be and become and do and be here for. You need to grieve for that and for what you've lost. But don't forget to be grateful for now only what you still have but what you've gained. You will look at the world differently now. Each day will be so much more important. You will see the big picture. You are not alone. By far. They say 1 in 1000 but more current estimates believe 1 in 100. Not everyone with Chiari is symptomatic. Don't compare symptoms to other people or pain. I am working on my bucket list. I don't know how much time I have and most days I don't feel up to working on my list. I start to feel bad but then remember that won't help anything. You take one hour at a time because so much changes within a day. You find out who your true friends are. You become an ambassador of knowledge yourself. You have to in order to survive. You have been fighting before you knew you were. You are strong. You are a Chiari warrior and we stand by you.

Posted May 10, 2017 by Aimes 1051

Get more than one opinion. Make sure the neurosurgeon does all necessary tests before operating. Definitely do your research. You have to be your own advocate.

Posted May 10, 2017 by Reagan 1100

See a neurosurgeon who is a specialist in treating Chiari.

Posted May 10, 2017 by Kathleen Giffin Bartkus 1000

Find one of the few Chiari specialists and follow their instructions which will include surgery. Don't wait. Most doctors and even even neurosurgeons are not familiar with Chiari and how to treat it

Posted May 10, 2017 by 1000

Be parepared to try a lot of different pain medication to get the right balance for you.
Not just one tablet works for everyone
Don't give up
You will have good days and bad days
Try meditation to help manage pain

Posted Jul 23, 2017 by Erena 2000

Be prepared for things to change. Don't be fearful. Many make a full recovery

Posted Aug 30, 2017 by Michelle 2000

be your own advocate, find a very qualified doctor and and build your support system.....I would of taken longer to recover instead of trying to rush back to normal too soon

Posted May 27, 2018 by xyzmike1 3050

its not the end of the world. you can beat it by learning all you can about it. join a support group.i did all these things on my own.

Posted Nov 29, 2019 by TRIPLE-1 CHIARI 2500

Translated from spanish Improve translation

If you have just been diagnosed, quiet...NOTHING HAPPENS. You're alive and have a good chance, luckily we have them and make use of it.
You decide as you are now, and as I will be in the future. Your lifestyle directly affects our condition. If you spend your life lying and lamenting, you only get worse and as a result, recovery cost you more. Act NOW, for not to regret later.

Healthy life, exercise and normal!!

Posted May 17, 2017 by Lynda Estrada 6835

Translated from spanish Improve translation

Make all the queries that are needed. And a lot of patience... it Is a difficult disease that not many know and brings many consequences by which when one after surgery improves the Chiari. Is equal to can bring diseases to the root of the disease

Posted Aug 30, 2017 by Candelaria 6560

Translated from french Improve translation

Already when you learn how sue you Like your life turns er takes a different turn. It is not necessary to let go of and this block against this disease.

Posted Oct 1, 2017 by Roosz Elsa 1000

Translated from spanish Improve translation

I would have liked to have a team of therapeutic support, not only from the psychology, if not from the Holistic Therapies. We recommend you to have patience, not everyone in the Medical System you have, don't take the disease as a burden, if not as an opportunity to heal in all aspects, but over all I would give containment.

Posted Nov 2, 2017 by Pochi 2050