Living With Cavernous Malformation

• How will cavernous malformation affect my day-to-day life? 
• How can I manage my symptoms?

A cavernous malformation is a rare condition that can have a significant impact on your life. Living with this condition can be challenging, both physically and emotionally, but it is possible to manage its symptoms and maintain a good quality of life with the right support and care.

Physically, the symptoms of cavernous malformation vary depending on the location and size of the malformation. Some people may experience no symptoms at all, whereas others may experience headaches, seizures, weakness or numbness in the limbs, difficulty speaking or understanding language, or vision changes. These symptoms can be frustrating and can make it difficult to carry out your daily activities.

You may be required to make adjustments to your daily routine and lifestyle. For example, if you experience seizures, you may need to avoid certain activities that could put you or others at risk, such as swimming or driving. You may also need to take extra precautions to prevent falls or injuries, such as wearing appropriate footwear and using assistive devices.

However, managing the emotional impact of cavernous malformation is just as important as managing the physical symptoms. Living with a chronic condition can be overwhelming and can lead to feelings of sadness, anxiety, or depression. It is important to seek out support from family, friends, or a mental health professional to help cope with these feelings. It can also be helpful to connect with others who have cavernous malformation or a similar condition. Support groups, either online or in person, can provide a sense of community and understanding, and can be a valuable resource for information and emotional support.

If you are pregnant or plan on becoming pregnant, it is important to inform your neurosurgeon, who will change your antiepileptic medications to those that are safe to use during pregnancy. There is an extremely small increase in the bleeding risk of cavernous malformations during pregnancy. Vaginal delivery is safe as long as you have not had a recent brain bleed. Discussing your specific circumstances with your neurosurgeon will be beneficial.

It is important to understand that cavernous malformations enlarge and at times shrink. So, you will need to be prepared for the ups and downs of managing this chronic condition.

Managing symptoms of cavernous malformation can be challenging, but there are several strategies that can help improve the quality of life and reduce the impact of symptoms. Work with a healthcare provider who is experienced in treating cavernous malformations to develop a personalized treatment plan.

Here are some tips for managing symptoms of cavernous malformation:

• Medication: You may be prescribed medications to manage symptoms such as seizures or headaches. It is important to take medications as directed and to discuss any side effects or concerns with your neurologist.
• Surgery: Depending on the location and size of the malformation, surgery may be an option to remove or reduce the size of the malformation. Discuss the risks and benefits of surgery with your neurosurgeon to determine if it is the right choice for you.
• Lifestyle changes: Making certain lifestyle changes can also help manage symptoms. This may include getting enough sleep and eating a balanced diet. It is a good idea to avoid alcohol and recreational drugs because they can exacerbate symptoms or interact negatively with medication. Engaging in regular exercise or physical activity can also help improve overall health and reduce stress.
• Therapy: Physical therapy or occupational therapy may be recommended to help with mobility and daily activities. Speech therapy will also be helpful if you have difficulty speaking or understanding spoken language.
• Support groups: Joining a support group can provide emotional support and help connect you with others who are living with a cavernous malformation.
• Stress reduction techniques: Managing stress is important for overall health, minimizing risk of a seizure, and can help lessen the emotional burden of symptoms. Techniques such as meditation, deep breathing, or yoga can be helpful for managing stress.
• Follow-up care: Regular follow-up appointments with your healthcare provider are important to monitor the progression of the malformation and adjust treatment as needed.

Work closely with your healthcare provider to develop a personalized treatment plan that is just right for you. By following the recommended treatment plan and making lifestyle changes, you can improve your quality of life and manage the symptoms of a cavernous malformation.

Ultimately, living with a cavernous malformation can be challenging, but it is possible to find ways to manage the symptoms and maintain a good quality of life. With the right support and management, it is possible to continue pursuing your goals and dreams and live a fulfilling life despite the challenges of the condition. Remember that each person’s experience with a cavernous malformation is unique, and seeking out the right support and care is key to managing the condition and maintaining a positive outlook.

• Despite the challenges of having a cavernous malformation, living a fulfilling life is possible.
• You may need to avoid certain activities such as driving and swimming, especially if you experience seizures.
• In addition to medications and surgery if needed, adopting healthy lifestyle changes and stress-relieving techniques such as meditation and yoga can be beneficial.

• Alliance to Cure Cavernous Malformation
• American Association of Neurological Surgeons
• National Organization for Rare Disorders