Which advice would you give to someone who has just been diagnosed with Arteriovenous Malformation AVM?

See some advice from people with experience in Arteriovenous Malformation AVM to people who have just been diagnosed with Arteriovenous Malformation AVM

Arteriovenous Malformation (AVM) is a condition where there is an abnormal connection between arteries and veins in the brain or spinal cord. If you have recently been diagnosed with AVM, it is understandable that you may be feeling overwhelmed and uncertain about what lies ahead. While I am not a medical professional, I can offer some general advice and guidance to help you navigate this challenging situation.

1. Seek expert medical advice: It is crucial to consult with a team of healthcare professionals who specialize in AVM. They will be able to provide you with accurate information about your specific condition, answer your questions, and guide you through the treatment options available.

2. Educate yourself: Understanding your condition is empowering. Take the time to learn about AVM, its causes, symptoms, and potential complications. However, be cautious when researching online and rely on reputable sources such as medical journals, trusted healthcare websites, or information provided by your healthcare team.

3. Build a support network: AVM can be emotionally and physically challenging. Reach out to your family, friends, and loved ones for support. Consider joining support groups or online communities where you can connect with others who have experienced or are going through a similar journey. Sharing experiences and receiving support from others can be immensely helpful.

4. Follow your treatment plan: Your healthcare team will develop a personalized treatment plan based on the specifics of your AVM. It may involve various options such as medication, embolization, radiosurgery, or surgery. It is essential to follow their recommendations and attend all scheduled appointments to ensure the best possible outcome.

5. Take care of your overall health: Maintaining a healthy lifestyle can positively impact your overall well-being. Eat a balanced diet, engage in regular physical activity (as recommended by your healthcare team), get enough sleep, and manage stress. These practices can help support your body's healing process and improve your quality of life.

6. Communicate openly with your healthcare team: Establish open and honest communication with your healthcare providers. Share any concerns, symptoms, or changes you experience. They are there to support you and make adjustments to your treatment plan if necessary.

7. Stay positive and seek emotional support: Coping with a diagnosis of AVM can be emotionally challenging. It is normal to experience a range of emotions, including fear, anxiety, or sadness. Consider seeking professional counseling or therapy to help you navigate these emotions and develop coping strategies.

8. Stay informed about advancements: Medical research and advancements in the field of AVM are continually evolving. Stay informed about new treatment options, clinical trials, and breakthroughs. Your healthcare team can guide you in exploring these possibilities and determine if they are suitable for your situation.

9. Take it one step at a time: Dealing with AVM can be a long and complex journey. Remember to take it one step at a time and be patient with yourself. Celebrate small victories along the way and focus on your overall well-being.

10. Reach out for financial and legal support: Depending on your location and circumstances, you may need assistance with financial or legal matters related to your AVM diagnosis and treatment. Seek guidance from professionals in these fields to ensure you have the necessary support.

Remember, this advice is general in nature, and it is crucial to consult with your healthcare team for personalized guidance. They have the expertise and knowledge to provide you with the most accurate and appropriate advice for your specific situation. Stay positive, stay informed, and surround yourself with a strong support system as you navigate your journey with AVM.

Diseasemaps

Become your own best advocate, search for alternative treatments. Try anything and everything. If it helps, keep doing it and if it doesn't at least you tried it and you know that it didn't help. You'll never know for sure unless you try it.

Posted Sep 13, 2017 by Jill 2000

Find a Interventional radiologist that is knowledgeable with AVMs. Research, research, research! In my case there is not a lot of info on Pelvic AVMs.

Posted Nov 2, 2017 by Kelly 1200

Do your own research

Know your disease and take an active role in your treatment options

Find doctors and specialists that you trust

Be proactive in your treatment

Try alternative treatments like acupuncture, massage, body work, reiki, prayer, and think about joining research studies

Listen to your body : rest when you feel tired, take medicine as prescribed, talk to your doctors, be honest, and give yourself a break.

Remember - this is a marathon, not a sprint.

Posted Nov 3, 2017 by Rhonda 2150

Don't be afraid to ask questions, anyone just diagnosed with a rare condition will feel bewildered and often a bit scared. There are excellent downloadable leaflets from the Brain and Spine Foundation, helpful both to you and your family and friends in understanding your condition. There were none when I was diagnosed, do make sure your GP understands what your diagnosis means, what they need to be alert to. I would not have been able to do anything different, but did feel incredibly isolated and did not know of any help or support groups. Some blood vessels can be reached without invasive surgery, thankfully the technology today makes accurate diagnosis better, and surgery techniques have improved massively

Posted Jul 5, 2020 by Mary 2500

Get on with your life. Unless a terminal terrible disease then make the most of your life. If you have been lucky enough to have been diagnosed then most likely you are in the best hands. But do check ALL neurogical hospitals and their status first. Some are way ahead of the rest

.When my husband received his diagnosis of ME his local doctor said " that's a heart sink diagnosis mate..that's you f***ed then". Nice. He was joking ( I hope)

Posted Nov 3, 2022 by Heather 5020