Living With Cavernous Malformation

A cavernous malformation is a rare condition that can have a significant impact on your life. It is a cluster of abnormal, thin-walled blood vessels in the brain or spinal cord. This vascular disorder can cause neurological symptoms, but its exact cause is not entirely understood. However, it is believed to arise due to genetic mutations or sporadic development. In some cases, individuals with a family history of the condition may carry a mutated gene that can increase their likelihood of developing a cavernoma.

Living with cavernous malformation is 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.

When living with cavernous malformation, 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.

Early diagnosis and monitoring of cavernous malformation are crucial for effective management and to prevent possible complications. With a proper understanding of this disorder, you can take the necessary steps to address symptoms effectively.

There are three main types of cavernous malformation:

• Sporadic Cavernous Malformations: Individuals without a known genetic predisposition can develop common malformations, which are usually singular and asymptomatic.
• Familial Cavernous Malformations: These are caused by inherited genetic mutations and can lead to multiple cavernomas in the brain and spinal cord. Familial CCM has a higher chance of producing symptoms and increasing the risk of hemorrhage.
• Radiation-Induced Cavernous Malformations: These are rare and can occur as a side-effect of radiation therapy for other brain or spinal cord conditions.

The prognosis for those living with cavernous malformation, also known as cavernomas, varies depending on the size, location and growth rate of the cavernoma. In many cases, cavernomas remain stable, causing little to no disruption to the individual's daily life. However, some people may continue to experience symptoms like seizures or headaches that may require medical intervention or even surgical removal of the malformation.

Factors such as age, medical history and cavernoma progression may all influence the prognosis. Treatments and management options are tailored to each individual's unique circumstances and include medication, surgery and lifestyle changes to minimize the risk of severe symptoms. Regular inspections through imaging studies like MRI are often recommended to monitor any changes in the size or location of cavernomas.

The prognosis for individuals with cavernous malformations is primarily favorable, especially when closely monitored and managed by qualified healthcare professionals. It's essential to maintain open communication with your healthcare team and follow any recommended treatment plans to ensure the best possible outcome.

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 when living with 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 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.

If you have a cavernoma, certain medications should be used with caution or avoided altogether, as they can increase the risk of bleeding. Blood-thinning medications such as aspirin, warfarin, heparin, and newer anticoagulants like apixaban or rivaroxaban may heighten the chance of hemorrhage. Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen can also raise bleeding risks. Even some over-the-counter supplements, such as ginkgo biloba, garlic, or fish oil, can have mild blood-thinning effects. Always speak with your neurologist or healthcare provider before taking any new medication or supplement to ensure it’s safe for your specific condition and treatment plan.

Most people with a cavernous malformation can safely fly, but it’s important to consult a neurosurgeon before doing so. Flying itself doesn’t typically increase the risk of bleeding or cause the condition to worsen. However, if you’ve recently experienced a hemorrhage, surgery, or new neurological symptoms, such as seizures, dizziness, or vision changes, your doctor may recommend delaying air travel until you’re stable. 

Staying hydrated, moving around during the flight, and managing stress can help reduce discomfort. Always carry your medical information and prescribed medications with you, and discuss any travel plans with your healthcare provider to ensure a safe journey.

Yes, many people with a cavernoma can exercise safely, but it’s essential to get medical advice before starting or changing any routine. Light to moderate exercise, such as walking, swimming, or yoga, can improve circulation, reduce stress, and support overall well-being. However, high-impact or contact sports that raise blood pressure or risk head injury, like weightlifting, boxing, or rugby, are generally discouraged, as they may increase the chance of bleeding. 

Activities that cause excessive strain or sudden movements should also be approached cautiously. Always follow your neurosurgeon’s recommendations and listen to your body, adjusting intensity as needed to maintain safety and balance.

• 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