Arnold Chiari

Living with Arnold Chiari. How to live with Arnold Chiari?

Can you be happy living with Arnold Chiari? What do you have to do to be happy with Arnold Chiari? Living with Arnold Chiari can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Arnold Chiari

Living with Arnold Chiari

Arnold Chiari malformation, also known as Chiari malformation, is a structural defect in the brain that affects the cerebellum. This condition occurs when the lower part of the cerebellum, called the cerebellar tonsils, extends into the spinal canal. Living with Arnold Chiari can be challenging, but with proper management and support, individuals can lead fulfilling lives.

1. Seek Medical Guidance

If you have been diagnosed with Arnold Chiari, it is crucial to establish a strong relationship with a knowledgeable healthcare team. Consult with a neurologist or neurosurgeon who specializes in Chiari malformation. They can provide you with accurate information, answer your questions, and guide you through the treatment options available.

2. Educate Yourself

Understanding Arnold Chiari and its symptoms is essential for managing the condition effectively. Educate yourself about the causes, symptoms, and potential complications associated with Chiari malformation. This knowledge will empower you to make informed decisions about your health and treatment options.

3. Manage Symptoms

Arnold Chiari can cause a variety of symptoms, including headaches, neck pain, balance problems, and numbness or tingling in the extremities. While there is no cure for Chiari malformation, there are ways to manage these symptoms:

Pain Management: Work with your healthcare team to develop a pain management plan that may include medications, physical therapy, or alternative therapies such as acupuncture.

Physical Therapy: Engage in regular physical therapy sessions to improve balance, coordination, and muscle strength.

Assistive Devices: Depending on your specific symptoms, your healthcare team may recommend assistive devices such as braces, canes, or walkers to enhance mobility.

4. Lifestyle Modifications

Adopting certain lifestyle modifications can help improve your overall well-being while living with Arnold Chiari:

Exercise: Engage in low-impact exercises such as swimming, yoga, or tai chi to improve flexibility, reduce pain, and enhance overall fitness.

Stress Management: Practice stress-reducing techniques such as meditation, deep breathing exercises, or engaging in hobbies to minimize the impact of stress on your symptoms.

Healthy Diet: Maintain a balanced diet rich in fruits, vegetables, whole grains, and lean proteins to support your overall health.

Sleep Hygiene: Establish a regular sleep routine and create a comfortable sleep environment to promote restful sleep, which is crucial for managing symptoms.

5. Emotional Support

Living with a chronic condition like Arnold Chiari can be emotionally challenging. Seek emotional support from friends, family, or support groups who understand your experiences. Sharing your feelings and concerns with others who can relate can provide comfort and a sense of belonging.

6. Regular Follow-ups

Regular follow-up appointments with your healthcare team are essential to monitor your condition and make any necessary adjustments to your treatment plan. Stay proactive in managing your health by attending these appointments and discussing any changes or concerns you may have.

7. Stay Positive

While living with Arnold Chiari may present challenges, maintaining a positive outlook can make a significant difference in your overall well-being. Focus on the aspects of your life that bring you joy and fulfillment. Engage in activities that you enjoy and surround yourself with a supportive network of people.

Remember, every individual's experience with Arnold Chiari is unique, and what works for one person may not work for another. It is essential to work closely with your healthcare team to develop a personalized management plan that suits your specific needs.

by Diseasemaps

Follow medical advice, stay active, follow up with doctors. Take medication as prescribed.

4/12/17 by Ljdb 2620

While I tend to be a very positive person, I still get in a slump every so often. The key is to remember that there is a purpose for everyone, and that whether you know it or not, you provide strength to someone.

5/10/17 by El_Choppo 1250

Learn your new normal. You may have to adjust how you do things, but you'll figure it out. Don't give up on yourself, and try to keep a positive attitude.

5/10/17 by Reagan 1100

You have to make adaptations to your life. From no more roller coasters to being mostly bedbound and relying on others when you were once so independent and having a custom power wheelchair and handicap house to multiple surgeries one after another. Again, it depends on the individual. You of course would be much happier without Chiari especially for the pain aspect. But you can be happier once you accept it. That part is hard.

5/10/17 by Aimes 1051

Accepting any limitations and adopting a positive attitude can only help the person living with Chiari.

5/10/17 by Kathleen Giffin Bartkus 1000

Living with Chiari takes some serious getting use to. The surgery needed to stop the progression is no joke! All or most Chiarians are in for a serious change of lifestyle after they become symptomatic.

5/10/17 by 1000

Yes, life is what you make it. As lon as you have a positive mind you can live with anything

7/23/17 by Erena 2000

Accepting the disease is huge. I think there is a lot of shock and recommend therapy to help ease the new reality

8/30/17 by Michelle 2000

above all try and remain positive and as active as possible...listen to your body...accept any limitation you have and talk to other chiari people and socialize ...don't isolate yourself

5/27/18 by xyzmike1 3050

Diet, exercise, do not become stressful, stay positive about your health , learn your body

11/29/19 by TRIPLE-1 CHIARI 2500

llevarlo con calma y pensar en que luego de la operación todo el sufrimiento valió la pena

6/16/20 by valen bazan 1200

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You can have a very normal life and full. I have been an athlete of gymnastics including use of apparatus such as parallel bars, colt,fixed bar or the ground. I never had any kind of problem to execute the exercises (some very hard and very large impact), I was a professional dancer for 10 years, never got out of the gym and live on roller skates and dance tracks. All thanks to having a muscles optimal in stopping the symptoms to appear. And we are always left with the attitude...if there is attitude, we can change everything.

5/17/17 by Lynda Estrada. Translated

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You will experience the day-to-day.there are good days and days where spent in bed

8/30/17 by Candelaria. Translated

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As this is a disease that does not heal it has no choice but to live with it. There are people who are more symthomes that of the other and of the people who arrives at e tre happy and the other that it's hard to be happy.

10/1/17 by Roosz Elsa. Translated

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There are days more bearable and the days in which you can't or fingers, it is complicated and the pain depend on the progress of the disease.

10/31/17 by robinrojasc. Translated

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You can be happy with any disease, the important thing is to accept it, be tolerant and above all be aware of. Yoga and Meditation helps us to better understand our physical, mental, and spiritual. Understand how to affect our emotions in our body helps us to prevent many of the symptoms.

11/2/17 by Pochi. Translated

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There is only to be independent of the disease

11/2/17 by Martin. Translated

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To be happy the first thing is to want to be. There are people without the disease who don't. I have chiari and I am happy. That does not mean that on certain days when the pain and symptoms are severe and constant, falling a bit the moral. The important thing is to continue looking at life with optimism. Having chiari makes life more difficult, but it is not why we are going to stop being happy.

11/22/17 by Vanesa. Translated

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