Materiały źródłowe

• #1 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. They are sometimes known as cavernous angiomas, cavernous hemangiomas, or cerebral cavernous malformation (CCM). It is a rare condition, typically looks like a raspberry, and is filled with blood that flows slowly through vessels that are like caverns. A cavernoma can range in size from a few millimeters to several centimeters across. […] A cavernoma is an abnormality in a blood vessel in the brain or spinal cord it looks like a raspberry. About 1 in 600 people has a cavernoma but most people will never know its there. It is only when the cavernoma grows or bleeds/oozes blood that it causes problems. A cavernoma that grows or bleeds a symptomatic cavernoma can cause a variety of symptoms depending on its size and location in the brain or spine.

• #2 Cavernomas – Symptoms & Treatment | Mount Sinai – New York

  https://www.mountsinai.org/locations/cerebrovascular-center/conditions/vascular-malformations/cavernomas

  At Mount Sinai, we have experts who specialize in cavernomas (also called cavernous angiomas or cavernous malformations). Cavernomas are abnormal clusters of vessels with small bubbles (or caverns) filled with blood that make them look like a berry. These can range in size from microscopic up to several inches in diameter. […] Unlike arteriovenous malformations, there is little blood flow in cavernomas. Since the walls of cavernomas are weak, blood can leak out. Cavernomas can occur in the brain and on the spinal cord. While a cavernous angioma may not affect function, it can cause seizures, stroke symptoms, hemorrhages, and headaches. […] Our doctors develop treatment plans for people with cavernomas based on several factors: […] Depending on thorough assessment of the above factors, treatment plans include:

• #3 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  The severity of symptoms and persistence of bleeding determines the type of treatment available for cavernoma patients. Often, doctors consider the best approach to be what is called watch and wait where the behaviour of the cavernoma is monitored over time, and medication given to alleviate difficult symptoms. When the severity of symptoms and the risk of re-bleeding outweigh the risks associated with surgery, a doctor may recommend treatment, usually neurosurgery to remove the cavernoma, but sometimes Gamma Knife surgery (also known as stereotactic radiosurgery) a less prevalent procedure that zaps the cavernoma with radiation. […] The CAUK Strategic Plan was approved at the January 2022 Board Meeting, with three parts: Care, Response, Cure. We deliver on our Mission via the five programmes of our Action Plan.

• #4 Cavernomas – Symptoms & Treatment | Mount Sinai – New York

  https://www.mountsinai.org/locations/cerebrovascular-center/conditions/vascular-malformations/cavernomas

  At Mount Sinai, we have experts who specialize in cavernomas (also called cavernous angiomas or cavernous malformations). Cavernomas are abnormal clusters of vessels with small bubbles (or caverns) filled with blood that make them look like a berry. These can range in size from microscopic up to several inches in diameter. […] Unlike arteriovenous malformations, there is little blood flow in cavernomas. Since the walls of cavernomas are weak, blood can leak out. Cavernomas can occur in the brain and on the spinal cord. While a cavernous angioma may not affect function, it can cause seizures, stroke symptoms, hemorrhages, and headaches. […] Our doctors develop treatment plans for people with cavernomas based on several factors: […] Depending on thorough assessment of the above factors, treatment plans include:

• #5 Cavernoma Symptoms & Treatments | Pacific Stroke & Neurovascular Center

  https://www.pacificneuroscienceinstitute.org/stroke-neurovascular/conditions-and-treatments/brain-vascular-malformation/cavernoma/

  Cavernomas are a vascular mass made up of abnormal dilated blood vessels characterized by distended blood-filled caverns. Vessels of a cavernoma mass have a tendency to leak and bleed because they lack the proper junctions between neighboring cells as well as the necessary structural support from smooth muscle and the stretchable material (elastin) that normally supports regular blood vessels. […] While a new diagnosis of brain cavernoma can produce natural anxious responses in many patients, the most important thing to remember is that you are not alone cavernomas can occur in as many as 1 out of every 200 people and our team of experts is here to help you understand your condition and determine an optimal, personalized treatment plan for your needs. […] Our specialists aim to optimize medical management and minimize the need for surgery wherever possible. When refractory cavernomas do progress to require surgical removal, we offer leading-edge minimally invasive microvascular techniques, championing keyhole approaches. Benefits include safe corridors that minimize damage to surrounding brain tissues through smaller incisions that reduce post-operative discomfort, faster healing and recovery, and better cosmetic results.

• #6 Cavernoma: Treatment & Care | UVA Health

  https://uvahealth.com/services/cavernoma

  Cavernomas are diagnosed using magnetic resonance imaging (MRI). Treatment for cavernomas includes: […] Most cavernomas do not need surgery. If you aren’t having symptoms, your healthcare provider will use MRI to monitor for any changes in your cavernoma. […] Our treatment team includes neurologists, neurosurgeons, skin specialists, imaging specialists, and genetic counselors. Together, we develop a strategy to address your cavernoma symptoms.

• #7 Cavernous malformations – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/diagnosis-treatment/drc-20360942

  Our caring team of Mayo Clinic experts can help you with your cavernous malformations-related health concerns […] Cerebral cavernous malformations (CCMs) are treated by specialists. They may include: […] Your healthcare team reviews your symptoms and imaging tests to decide on a treatment plan. The care team may recommend closely watching the cavernous malformation is recommended. Or your care team may recommend removing or treating the cavernous malformation. […] If your treatment plan includes surgery, more-advanced imaging technologies may be useful. […] The outlook of cerebral cavernous malformations depends on many factors, including their size, growth and whether they cause symptoms. […] Experts are looking at using imaging technology to improve predictions of the course of disease in some people.

• #8

  https://umiamihealth.org/en/treatments-and-services/neurosurgery/cerebral-cavernous-malformations

  Cavernous malformations, or cavernomas, are abnormal clusters of blood vessels that can be found anywhere in the body but usually only poses a serious problem in the brain and spinal cord. […] In some patients, cavernous malformations may exist without any symptoms. However, in other people, these masses may bleed causing neurological issues, such as seizures and stroke-like deficits, which in some cases can be life-threatening. […] Cavernous malformations may be treated surgically to remove these risks. […] The University of Miami Health System is designated a Center of Excellence in Cerebral Cavernous Malformation (CCM) by the Alliance to Cure Cavernous Malformation. […] The recognition is awarded to centers based upon their exceptional and multidisciplinary care of CCM patients and their cutting-edge angioma research, coordinated clinical care, and exceptional surgical outcomes.

• #9 Stanford recognized as Center of Excellence for Cavernous Malformation | Neurosurgery | Stanford Medicine

  https://med.stanford.edu/neurosurgery/news/news-archive/2022/cavernous-malformation-center-of-excellence.html

  Stanford was recognized as a Center of Excellence by the Alliance to Cure Cavernous Malformation in June 2022. To achieve recognition as a Center of Excellence, hospitals are required to meet or exceed rigorous clinical care consensus guidelines. […] Alliance to Cure Cavernous Malformation has designated Stanford Health Care in Stanford, California, a Center of Excellence in the treatment of cavernous malformations. The Stanford Health Care Neuroscience Health Center includes a comprehensive Vascular Malformations Clinic that treats intracranial and spinal vascular malformations. For more than 30 years, the clinic has treated both adult and pediatric patients. […] Stanford Health Care’s Cavernous Malformation program is led by Gary Steinberg, MD, PhD, professor of neurosurgery, and Neil Schwartz, MD, PhD, clinical professor of neurology neurological sciences, along with their comprehensive, multidisciplinary team of professionals.

• #10 Cavernous malformations – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/care-at-mayo-clinic/mac-20360944

  Mayo Clinic doctors consult with each other about a person with cavernous malformations. Collaboration and experience […] Mayo Clinic physicians consult with one another on multiple aspects of care for people with cerebral cavernous malformations. […] Your specialists work together as an integrated team to provide you with comprehensive care, whether your condition needs to be closely watched or you need medicines or surgery. […] At Mayo Clinic, several disciplines and a wealth of specialized expertise come together for diagnosis and treatment, whether your needs over time call for observation or surgery. […] Having all of this subspecialized expertise in a single place, focused on you, means that you’re not just getting one opinion. Care is discussed among the team, appointments are scheduled in coordination, and highly specialized experts are all working together to determine what’s best for you or your child.

• #11 Cerebral Cavernous Malformation – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/neurology-neurosurgery/stroke-neurovascular-care/ccm

  At the University of Chicago Medicine, our neurovascular care experts are leaders in the management of cerebral cavernous malformations (CCM). […] Offering a depth of experience, our integrated physician team provides highly effective, innovative care for adults and children with CCM. […] The UChicago Medicine neurovascular team sees more CCM patients than any other center in the world. Our experts in neurovascular surgery, neurology, neuroradiology and medical genetics develop innovative CCM treatment plans tailored to each patient’s needs, including the most advanced imaging tailored for CCM. […] Leveraging the combined experience of our experts, we offer an innovative, collaborative approach to CCM care. […] The team comprises highly skilled physicians and nurses with extensive training and experience in neurovascular care.

• #12

  https://actamedicaruha.com/index.php/pub/article/view/108

  Cavernomas are vascular malformations that are rare in the population and usually present with incidental findings. […] Nurses take an active role in the conservative treatment, follow-up and symptom management of patients with cavernomas, and in the preoperative preparation, intraoperative follow-up and postoperative care of patients undergoing stereotactic radiosurgery and craniotomy, and assume responsibility for informing, counseling, care and symptom management. […] However, there are limited number of studies in the literature on nursing care after cavernoma surgery. […] The aim of this review is to present evidence-based approaches and nursing care that can guide nurses caring for patients with cavernoma in line with the current literature.

• #13

  https://actamedicaruha.com/index.php/pub/article/view/108

  Cavernomas are vascular malformations that are rare in the population and usually present with incidental findings. […] Nurses take an active role in the conservative treatment, follow-up and symptom management of patients with cavernomas, and in the preoperative preparation, intraoperative follow-up and postoperative care of patients undergoing stereotactic radiosurgery and craniotomy, and assume responsibility for informing, counseling, care and symptom management. […] However, there are limited number of studies in the literature on nursing care after cavernoma surgery. […] The aim of this review is to present evidence-based approaches and nursing care that can guide nurses caring for patients with cavernoma in line with the current literature.

• #14 Cavernoma | Duke Health

  https://www.dukehealth.org/treatments/cavernoma

  We offer the full range of surgical treatment options, including: […] Our nurse navigator becomes your one-stop shop for scheduling appointments, coordinating visits, communicating your results, and planning surgery. It’s their job to make your treatment journey easier by guiding you through it step by step, and they are more than willing to answer your questions along the way. […] We are committed to improving care for people with cavernomas.

• #15 What is a cavernoma – Cavernoma Alliance UK (CAUK)

  https://cavernoma.org.uk/what-is-cavernoma/

  A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. […] Because cavernoma symptoms can vary widely from person to person, depending on location, number/ size, effective treatment options can vary also. Specific medical advice can only be given by a neurologist, neurosurgeon or other clinical professionals. […] There are currently three main ways of treating cavernoma: A wait-and-see conservative management approach is often recommended. This will involve treating the symptoms; for example, medication can be prescribed to help control some symptoms such as seizures and pain. […] Surgery to remove the cavernoma. Surgery is a major operation, and more dangerous for cavernoma deep in your brain, especially in your brainstem and spinal cord.

• #16 Cavernous Malformation (Cavernoma): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21594-cavernous-hemangioma

  Cavernous malformation treatment varies based on its location and whether or not its bleeding or causing symptoms. […] If the cavernoma isnt bleeding, your provider may schedule regular imaging scans to monitor it over time. […] Your provider may recommend the following treatment options for a bleeding cavernous malformation: Medications to manage seizures or headaches. […] Surgery to remove it. […] Your provider may consider surgery if: You had one or more symptomatic bleeding episodes. […] The bleeding caused neurologic problems (like weakness or vision problems) and the problems are getting worse. […] You have seizures that dont get better with medication. […] Surgery is a safe option for you. […] Theres no known way to prevent cavernous malformations. […] If you have a family history of these hemangiomas, your provider will discuss genetic testing and genetic counseling to help you learn more about this condition.

• #17 Cavernoma: Treatment & Care | UVA Health

  https://uvahealth.com/services/cavernoma

  Cavernomas are diagnosed using magnetic resonance imaging (MRI). Treatment for cavernomas includes: […] Most cavernomas do not need surgery. If you aren’t having symptoms, your healthcare provider will use MRI to monitor for any changes in your cavernoma. […] Our treatment team includes neurologists, neurosurgeons, skin specialists, imaging specialists, and genetic counselors. Together, we develop a strategy to address your cavernoma symptoms.

• #18 Cerebral Cavernous Malformations – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK538144/

  Cerebral cavernous malformations (CCMs), also known as cavernomas or cavernous hemangiomas, are clusters of abnormal capillaries lacking intervening brain tissue. […] Management includes conservative observation for asymptomatic lesions, while symptomatic cases may warrant surgical resection or, in specific cases, stereotactic radiosurgery. […] The natural history and treatment strategies for CCMs continue to evolve, emphasizing the importance of individualized care. […] For asymptomatic patients with solitary lesions, observation is the preferred strategy. […] Microsurgical resection remains the only definitive treatment for CCMs but is associated with significant challenges and potential postoperative morbidity, which can sometimes exceed the risks posed by the untreated lesion. […] Surgery may be considered for solitary, asymptomatic CCMs in accessible, noneloquent locations to prevent future hemorrhages and alleviate psychological burden or lifestyle restrictions.

• #19 Cavernoma | Duke Health

  https://www.dukehealth.org/treatments/cavernoma

  Cavernomas, also known as cavernous malformations or cavernous angiomas, are tangled bundles of small, thin-walled blood vessels that can leak or hemorrhage. They can irritate your brain, causing headaches, seizures, weakness, and stroke-like symptoms. We provide high-quality, integrated care so you experience the best quality of life. […] Your doctors will recommend a treatment plan based on the number of cavernomas you have, their size, their location, and other factors. […] Your doctor may advise that your best course of action is to closely monitor your cavernoma with regular imaging studies. […] Medicines can help treat symptoms like seizures and headaches. […] In general, your doctors may recommend surgery if you’re experiencing symptoms and if your cavernoma is unstable or has already hemorrhaged.

• #20 Living With Cavernous Malformation | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/living-with-cavernous-malformation

  A cavernous malformation is a rare condition that can have a significant impact on your life. […] Living with a 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. […] When living with cavernous malformation, you may be required to make adjustments to your daily routine and lifestyle. […] However, managing the emotional impact of cavernous malformation is just as important as managing the physical symptoms. […] 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.

• #21 Cavernous Malformation (Cavernoma): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21594-cavernous-hemangioma

  Cavernous malformation treatment varies based on its location and whether or not its bleeding or causing symptoms. […] If the cavernoma isnt bleeding, your provider may schedule regular imaging scans to monitor it over time. […] Your provider may recommend the following treatment options for a bleeding cavernous malformation: Medications to manage seizures or headaches. […] Surgery to remove it. […] Your provider may consider surgery if: You had one or more symptomatic bleeding episodes. […] The bleeding caused neurologic problems (like weakness or vision problems) and the problems are getting worse. […] You have seizures that dont get better with medication. […] Surgery is a safe option for you. […] Theres no known way to prevent cavernous malformations. […] If you have a family history of these hemangiomas, your provider will discuss genetic testing and genetic counseling to help you learn more about this condition.

• #22 Cavernomas – Symptoms & Treatment | Mount Sinai – New York

  https://www.mountsinai.org/locations/cerebrovascular-center/conditions/vascular-malformations/cavernomas

  Surgery: This is the only cure for cavernomas. We typically perform surgery on cavernous angiomas with a recent hemorrhage and those that are growing or causing seizures. […] We surgically remove cavernomas by making a small opening in the skull to expose the brain (a craniotomy), usually under general anesthesia. We use the latest, safest, and most effective techniques available for removing cavernomas with as little disruption to the brain as possible, including microsurgery and computer image-guided surgical navigation. […] Most patients leave the hospital within two days after the procedure. If you have experienced neurological loss because of the cavernomas, we may recommend post-surgical rehabilitation.

• #23 Cavernomas – Symptoms & Treatment | Mount Sinai – New York

  https://www.mountsinai.org/locations/cerebrovascular-center/conditions/vascular-malformations/cavernomas

  Surgery: This is the only cure for cavernomas. We typically perform surgery on cavernous angiomas with a recent hemorrhage and those that are growing or causing seizures. […] We surgically remove cavernomas by making a small opening in the skull to expose the brain (a craniotomy), usually under general anesthesia. We use the latest, safest, and most effective techniques available for removing cavernomas with as little disruption to the brain as possible, including microsurgery and computer image-guided surgical navigation. […] Most patients leave the hospital within two days after the procedure. If you have experienced neurological loss because of the cavernomas, we may recommend post-surgical rehabilitation.

• #24 Cavernoma| Neurosurgery Inselspital Bern

  https://neurochirurgie.insel.ch/en/diseases-specialities/cerebral-vessels/cavernoma

  Cavernomas are vascular malformations consisting of irregular small vascular cavities. The risk of hemorrhage is rather low except for brainstem cavernomas. Nevertheless, a cavernoma can cause epilepsy, headaches or neurological deficits. However, many cavernomas are asymptomatic and are only discovered by chance. Whether and how a cavernoma should be treated must be decided individually for each patient. At Inselspital, we have regular interdisciplinary meetings for this purpose and maintain a special database for cavernoma patients in order to continuously improve the treatment of this rare disease. […] Surgery is usually only recommended for cavernomas that have become symptomatic. The closer a cavernoma is to functionally important areas, the earlier it becomes symptomatic. This is the reason why cavernomas are a special case in surgical neurosurgery: Surgery must often be performed in the immediate proximity of important functional areas. Therefore, a very careful indication for surgery is needed. […] Safety requirements are particularly high in cavernoma surgery. Here, we use innovative surgical procedures such as neuronavigation-assisted surgical planning, functional navigation and intraoperative monitoring. This is necessary to remove the cavernoma safely, gently and completely.

• #25 Cavernous Malformation Recovery Outlook | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/recovery-outlook

  Cavernous malformations, also known as cavernomas or cavernous angiomas, are clusters of enlarged blood vessels. Blood can occasionally ooze across leaky vessel walls and be reabsorbed, causing the cavernous malformation to stretch or shrink over time. If your cavernous malformation is a good candidate for surgery, complete removal of the cavernous malformation may provide a cure. […] The timeline of a patients recovery after surgery depends on various factors, including the overall health of the patient, age, and the location and size of the cavernous malformation. Cavernous malformations generally have high cure and low complication rates after surgery. Most patients report improved symptoms after complete resection, or removal, of the cavernous malformation. […] Patients take approximately 6 weeks to recover from cavernous malformation surgery when there are no complications. The actual recovery duration, however, depends on various factors, including the patients age and general health, post-surgery care, and the location of the cavernous malformation. If neurological problems occur after the surgery, physical rehabilitation may be needed to help regain those functions.

• #26 Cavernous Malformation Surgery Recovery: What to Expect

  https://www.neurosurgeonsofnewjersey.com/blog/cavernous-malformation-surgery-recovery/

  When cavernous malformations, or cavernomas, in the brain cause symptoms, bleed or grow, surgery is often performed to remove these abnormal blood vessels and allow patients to return to their normal lives. […] Your recovery from cavernous malformation surgery begins right after your operation. […] Without complications, recovery from cavernous malformation surgery typically takes approximately six weeks, although that depends on many factors such as age and general health. […] Cavernous malformation surgery can completely resolve these clusters of abnormal blood vessels in the brain, but recovery takes time. Your health care team will work with you to create a plan that gets you back to everyday life as quickly as possible.

• #27 Cavernous Malformation Recovery Outlook | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/recovery-outlook

  Cavernous malformations, also known as cavernomas or cavernous angiomas, are clusters of enlarged blood vessels. Blood can occasionally ooze across leaky vessel walls and be reabsorbed, causing the cavernous malformation to stretch or shrink over time. If your cavernous malformation is a good candidate for surgery, complete removal of the cavernous malformation may provide a cure. […] The timeline of a patients recovery after surgery depends on various factors, including the overall health of the patient, age, and the location and size of the cavernous malformation. Cavernous malformations generally have high cure and low complication rates after surgery. Most patients report improved symptoms after complete resection, or removal, of the cavernous malformation. […] Patients take approximately 6 weeks to recover from cavernous malformation surgery when there are no complications. The actual recovery duration, however, depends on various factors, including the patients age and general health, post-surgery care, and the location of the cavernous malformation. If neurological problems occur after the surgery, physical rehabilitation may be needed to help regain those functions.

• #28 What is a cavernoma – Cavernoma Alliance UK (CAUK)

  https://cavernoma.org.uk/what-is-cavernoma/

  Radiation treatment, known as Stereotactic Radiosurgery, which zaps the cavernoma with radiation. It is unknown how well cavernomas respond to radiosurgery. […] There is yet no high-quality evidence for which of these three treatments is optimal for people whose symptoms are so severe that immediate treatment is essential.

• #29 Cerebral Cavernous Malformations – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK538144/

  Stereotactic radiosurgery (SRS) is a noninvasive alternative for treating anatomically inaccessible or high-risk symptomatic lesions. […] Genetic testing is advised for patients with multiple CCMs or a family history of the condition. […] The following recommendations should be kept in mind in the management of CCMs: According to the 2017 Angioma Alliance Care Guidelines, surgical resection is not recommended for asymptomatic lesions, particularly those in eloquent or deep brain regions. […] Effective management of CCMs relies on a collaborative, patient-centered approach involving physicians, advanced practitioners, nurses, pharmacists, and other healthcare professionals.

• #30 What is a cavernoma – Cavernoma Alliance UK (CAUK)

  https://cavernoma.org.uk/what-is-cavernoma/

  Radiation treatment, known as Stereotactic Radiosurgery, which zaps the cavernoma with radiation. It is unknown how well cavernomas respond to radiosurgery. […] There is yet no high-quality evidence for which of these three treatments is optimal for people whose symptoms are so severe that immediate treatment is essential.

• #31 Living With Cavernous Malformation | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/living-with-cavernous-malformation

  A cavernous malformation is a rare condition that can have a significant impact on your life. […] Living with a 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. […] When living with cavernous malformation, you may be required to make adjustments to your daily routine and lifestyle. […] However, managing the emotional impact of cavernous malformation is just as important as managing the physical symptoms. […] 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.

• #32 Cavernous Malformation (Cavernoma): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21594-cavernous-hemangioma

  While you cant prevent all cavernoma bleeds or ruptures, you can reduce your risk by taking care of your general health. […] Cerebral cavernous malformations can be life-threatening if they cause severe bleeding. […] But most dont affect life expectancy. […] Complications after a bleed, however, may affect your quality of life, like after a stroke. […] Each persons situation is different. You should speak with your healthcare provider to learn more about your situation. […] Contact emergency services if you notice symptoms of a cavernous malformation, especially a first-time seizure, one-sided weakness or sudden vision changes. […] Symptoms may be a sign of bleeding, which could cause a stroke, so its important that you get care right away. […] Your experience with a hemangioma is different from what happens to someone else. […] Your provider may recommend getting an annual MRI, managing your symptoms with medications or undergoing surgery to prevent complications.

• #33 Living With Cavernous Malformation | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/living-with-cavernous-malformation

  Work closely with your healthcare provider to develop a personalized treatment plan that is just right for you. […] 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. […] 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.

• #34 Physical Therapy’s Role in Acute Management and Diagnosis for Cerebral Cavernous Malformation – University of Iowa

  https://iro.uiowa.edu/esploro/outputs/doctoral/Physical-Therapys-Role-in-Acute-Management/9984201516902771

  Cerebral cavernous malformations (CCM) are small bundles of capillaries in the brain that are enlarged and prone to rupture or leaking of blood into the interstitial space. […] Physical therapy and care provided in an acute care setting to help restore independence with mobility and activities of daily living. […] Physical therapy and acute care management via the biopsychosocial model can lead to better patient outcomes and higher quality of care.

• #35 CAVERNOMA – Texas Orthopedic and Spine Associates

  https://txosa.com/cavernoma/

  Physical therapy begins soon after surgery to help patients regain strength, coordination, and mobility. […] Regular follow-up appointments with the neurosurgeon and other specialists ensure that recovery is progressing well and address any arising issues. […] Adhering to prescribed medications and therapy routines is crucial for a successful recovery, ultimately leading to improved neurological function and quality of life.

• #36 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  Care: Direct support for adults (68% of our membership base are adults with cavernoma). Direct support for children and young adults with cavernoma and their families (4.2% of our membership are parents of children with cavernoma). […] The physical and mental impact of cavernoma goes beyond what we could capture in just a couple of paragraphs. As with many conditions that affect the brain and spinal cord, the impact of the condition varies greatly depending on exactly where a cavernoma, or multiple cavernomas, are located. […] On top of having to manage the difficult physical consequences of a cavernoma growing or bleeding, the anxiety caused by not knowing when symptoms might worsen means patients often experience long-lasting mental health difficulties. […] Cavernoma is a rare condition for which research is relatively young.

• #37 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  We are happy to report that research into cavernoma and potential treatments has gained significant momentum over the last years. […] CaverBuddies is a Peer Support Scheme which matches up fully trained and DBS checked volunteers from our cavernoma community with people who are in need of support. […] The CaverBuddies scheme helps people to navigate their diagnosis and cavernoma journey, feeling less alone and more in control.

• #38 Living With Cavernous Malformation | Aaron Cohen-Gadol, MD

  https://www.aaroncohen-gadol.com/en/patients/cavernous-malformation/survival/living-with-cavernous-malformation

  A cavernous malformation is a rare condition that can have a significant impact on your life. […] Living with a 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. […] When living with cavernous malformation, you may be required to make adjustments to your daily routine and lifestyle. […] However, managing the emotional impact of cavernous malformation is just as important as managing the physical symptoms. […] 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.

• #39 Cavernous Malformations | Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/c/cavernous-malformation

  Cavernous malformations are also known as cavernous angiomas, cavernous hemangiomas, cerebral cavernous malformations or cavernomas. […] Some cavernous malformations cause no symptoms, but larger cavernomas may cause headaches, seizures, and impaired speech or vision. […] Your neurosurgeon may suggest surgery if the cavernous malformation is bleeding into the brain or pushing on certain parts of the brain. […] In cases of severe cavernoma bleeding, our Neurosurgery team is prepared 24 hours a day to provide urgent surgical intervention. […] If surgery is recommended, our surgeon will explain the location of the cavernoma(s) and identify potential risks of surgical removal. […] There are currently no drug treatments for cavernous malformations; however there are drug treatments to alleviate symptoms such as seizures or headache.

• #40 Cerebral Cavernous Malformations | Wolfson Children’s | Jacksonville, FL

  https://www.wolfsonchildrens.com/services/brain/stroke-and-blood-vessel-conditions/cerebral-cavernous-malformations

  If you’re searching for a team with expansive expertise that will create an individualized care and treatment plan for your child, you’ve found the right place. […] We provide diagnosis, management, counseling and treatment of sporadic and familial cerebral cavernous malformations, and any resulting conditions. […] Neurologists and neurosurgeons work together to diagnose and treat cerebral cavernous malformations. […] We evaluate each patient individually. Together with patient families, we determine the best treatment plan. […] Surgery is not always needed. Many times, observation is the best approach and is appropriate in many cases. […] After a procedure, your child will be cared for in a specialized pediatric neuro intensive care unit, where the team is specially trained in childrens neurological conditions.

• #41 Cerebral Cavernous Malformations | Wolfson Children’s | Jacksonville, FL

  https://www.wolfsonchildrens.com/services/brain/stroke-and-blood-vessel-conditions/cerebral-cavernous-malformations

  Expert teams at Wolfson Childrens surround your child with the care they need for CCM. […] If your child has seizures caused by cavernous malformations, you can rest assured knowing that Wolfson Children’s has dedicated pediatric neurologists on the team from Nemours Childrens Health, Jacksonville. […] Children who experience a stroke because of cavernous malformations require special care from the most practiced specialists around. […] To ensure we’re taking the right approach with your child for treatment and long-term support, our Clinical Center has a genetics program that tests patients and counsels families with guidance and information. […] At Wolfson Childrens, our multidisciplinary team works together to treat the specific needs of your child, including pediatric neurology, neurosurgery, neuro-radiology, genetics teams and more. […] The Cerebral Cavernous Malformations Clinical Center serves the North Florida and South Georgia region and beyond.

• #42 Cerebral Cavernous Malformation | Birth Injury Center

  https://birthinjurycenter.org/cerebral-cavernous-malformation/

  If your child does experience symptoms, treatment options include the following: Anti-seizure medication, Surgical removal of the malformation, Radiosurgery, Functional magnetic resonance imaging (fMRI). […] Cerebral cavernous malformations often have no adverse effects on pregnancy and delivery. However, complications are possible, so your pregnancy should be managed by a team of doctors that includes an obstetrician experienced with high-risk pregnancies and a neurologist who is knowledgeable about cavernomas and familiar with your history. […] While vaginal deliveries are the reasonable standard of care in most cases involving maternal cavernomas, complications during childbirth can be dangerous for an infant with this condition. Due to the fragile nature of the capillaries in the cavernoma, any head trauma that occurs during the birthing process could result in a catastrophic brain bleed.

• #43 Cerebral Cavernous Malformation | Birth Injury Center

  https://birthinjurycenter.org/cerebral-cavernous-malformation/

  If your child does experience symptoms, treatment options include the following: Anti-seizure medication, Surgical removal of the malformation, Radiosurgery, Functional magnetic resonance imaging (fMRI). […] Cerebral cavernous malformations often have no adverse effects on pregnancy and delivery. However, complications are possible, so your pregnancy should be managed by a team of doctors that includes an obstetrician experienced with high-risk pregnancies and a neurologist who is knowledgeable about cavernomas and familiar with your history. […] While vaginal deliveries are the reasonable standard of care in most cases involving maternal cavernomas, complications during childbirth can be dangerous for an infant with this condition. Due to the fragile nature of the capillaries in the cavernoma, any head trauma that occurs during the birthing process could result in a catastrophic brain bleed.

• #44 The Contribution of Anthroposophic Medicament Bryophyllum to the Quality of Life of Patient with Diagnosis of Cavernoma during Prenatal Care: A Case Report

  https://clinmedjournals.org/articles/ogcr/obstetrics-and-gynaecology-cases-reviews-ogcr-7-170.php

  We present the successful prenatal and postpartum follow up of a pregnant woman with diagnosis of epilepsy due to brain cavernoma, and depression. […] She attended the Anthroposophic Medicine Nucleus at the Federal University of São Paulo (NUMA-UNIFESP), where it is offered a comprehensive prenatal care program based in anthroposophic medicine. This comprehensive approach, the individualized care and attention, the use of Bryophyllum argento cultum, an anthroposophic medicine, in conjunction with her allopathic medicines, and the psychologic support resulted in her perception of feeling more vitalized, and mentally healthy, and might have contributed to seizure prevention. […] The management of pregnancy in women with chronic neurologic diseases poses an additional challenge and can increase risk both to mother and child. This positive outcome in a rare case makes this report relevant because points to a successful way to approach the prenatal care using anthroposophic medicines and therapies.

• #45 The Contribution of Anthroposophic Medicament Bryophyllum to the Quality of Life of Patient with Diagnosis of Cavernoma during Prenatal Care: A Case Report

  https://clinmedjournals.org/articles/ogcr/obstetrics-and-gynaecology-cases-reviews-ogcr-7-170.php

  Thus, we consider relevant to present the positive follow up and outcome of an anthroposophic oriented prenatal care of a young woman with epilepsy due to cavernous angioma. […] The surgical approach of the cerebral cavernous angioma was not recommended due to her pregnancy. […] The medicament-based treatment was centered mostly in anthroposophic medications due to its safety and efficacy. Anxiety and depressive symptoms were treated with Bryophyllum argento cultum throughout the entire pregnancy. […] This case report showed a positive outcome of a depressed pregnant woman with diagnosis of epilepsy due to brain cavernoma. We described the prenatal care based in a multidisciplinary health team. The comprehensive program that offers medical follow-up addressed her physical, psychological, and social needs. The use of the anthroposophic medication Bryophyllum in conjunction with the other approaches gave support for the patient to feel more vitalized and mentally healthier, improving her quality of life and her pregnancy outcome. […] Considering the satisfactory outcome and the improvement of QoL during prenatal care, we propose that the anthroposophic approach to prenatal care can benefit patients suffering from similar conditions.

• #46 Cavernous malformations – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/diagnosis-treatment/drc-20360942

  Several medicines are being tested in clinical trials to see if specific medicines rather than surgery could reduce the chance of further bleeding. […] If you have seizures related to a cavernous malformation, you may be prescribed medicines to stop the seizures. […] Don’t hesitate to ask any other questions during your appointment if you don’t understand something. […] Certain conditions and activities can trigger seizures, so it may be helpful to: […] Connect with others like you for support and answers to your questions in the Stroke Cerebrovascular Diseases support group on Mayo Clinic Connect, a patient community.

• #47 Stanford recognized as Center of Excellence for Cavernous Malformation | Neurosurgery | Stanford Medicine

  https://med.stanford.edu/neurosurgery/news/news-archive/2022/cavernous-malformation-center-of-excellence.html

  Stanford Health Care is now an active site for the REC-994 clinical trial, the goal of which is to determine the safety and effectiveness of a research medication in the treatment of cavernous malformations for patients who either do not wish to have surgery or are not surgical candidates. The researchers are also participating in a data collection study to better understand risks associated with familial cavernous malformations. […] The Alliance to Cure Cavernous Malformation is a patient/family advocacy organization dedicated to informing, supporting and educating those impacted by cavernous malformations that drives research for better treatments and a cure. To achieve recognition as a Center of Excellence, hospitals are required to meet or exceed the rigorous clinical care consensus guidelines that were developed and are maintained by the Alliance to Cure Cavernous Malformation Scientific Advisory Board.

• #48

  https://umiamihealth.org/en/treatments-and-services/neurosurgery/cerebral-cavernous-malformations

  We have a number of clinical trials enrolling and following CCM patients to better assess outcomes according to specific patient and disease characteristics. Additionally, we are collecting blood and CCMs from the operating room to help develop better molecular tests to determine which CCM may bleed. […] At UHealth, cavernoma patients receive care from a collaborative team of highly experienced doctors including cerebrovascular neurosurgeons, neurologists, radiologists, epileptologists, clinical geneticists, and a team of clinical and basic science researchers who work to discover and translate novel cavernoma therapies into the clinic. […] A multidisciplinary team of experts. At UHealth, you have access to the best neurosurgeons in the region. You will be taken care of by a passionate and knowledgeable multidisciplinary team of medical professionals who make sure that you receive the right treatment for your unique condition.

• #49 Care Study – Cavernoma Alliance UK (CAUK)

  https://cavernoma.org.uk/care-study/

  Medical care for people with cavernoma involves things like anti-seizure drugs and physiotherapy. […] Treatment with surgery can be done with neurosurgery to remove the cavernoma, or with stereotactic radiosurgery to stabilise it. The advantage of surgery is that further strokes or seizures may be prevented. But surgery has risks, which seem finely balanced with its benefits. So doctors and people with cavernoma often remain unsure about surgery. […] The pilot study team showed that a randomised trial of surgery for brain cavernoma is possible. […] The pilot study recruited more people than planned and found what helped or stopped recruitment. […] CAUK was the patient group co-applicant in the study and was involved in its development by providing the patient voice from the start. We co-developed the information leaflets for patients and also co-ordinated the Patient Advisory Group to oversee the conduct and progress of the CARE Study. Our sincere thanks go to the CAUK members who took part in both the PAG and the pilot study. Without their involvement this study wouldnt have been possible.

• #50 About the CARE Study | Usher Institute

  https://usher.ed.ac.uk/edinburgh-clinical-trials/our-studies/all-current-studies/care/care-study/about-study

  The Cavernomas A Randomised Effectiveness (CARE) pilot study aims to address the effectiveness of active treatment (with neurosurgery or stereotactic radiosurgery) versus conservative management in people with symptomatic brain cavernoma. […] In standard practice in the UK, most people with cavernomas have medical management (which may involve scans, drugs, or rehabilitation) to manage these symptoms. […] About one fifth also have surgical management with either brain surgery to remove a cavernoma or stereotactic radiosurgery to stabilise it with radiation. […] The pros and cons of medical management versus medical and surgical management are finely balanced. […] The most reliable way of finding out which management is best is to do a randomised study, in which suitable patients are allocated to medical management or medical and surgical management at random.

• #51 Care Study – Cavernoma Alliance UK (CAUK)

  https://cavernoma.org.uk/care-study/

  Medical care for people with cavernoma involves things like anti-seizure drugs and physiotherapy. […] Treatment with surgery can be done with neurosurgery to remove the cavernoma, or with stereotactic radiosurgery to stabilise it. The advantage of surgery is that further strokes or seizures may be prevented. But surgery has risks, which seem finely balanced with its benefits. So doctors and people with cavernoma often remain unsure about surgery. […] The pilot study team showed that a randomised trial of surgery for brain cavernoma is possible. […] The pilot study recruited more people than planned and found what helped or stopped recruitment. […] CAUK was the patient group co-applicant in the study and was involved in its development by providing the patient voice from the start. We co-developed the information leaflets for patients and also co-ordinated the Patient Advisory Group to oversee the conduct and progress of the CARE Study. Our sincere thanks go to the CAUK members who took part in both the PAG and the pilot study. Without their involvement this study wouldnt have been possible.

• #52 About the CARE Study | Usher Institute

  https://usher.ed.ac.uk/edinburgh-clinical-trials/our-studies/all-current-studies/care/care-study/about-study

  The NIHR (National Insitute for Health Research) wants research to be done to find out whether enough patients can be found for a randomised study comparing medical management with medical and surgical management of symptomatic cavernomas. […] Estimate whether enough patients can be found for a full-scale randomised study to be done to find out whether medical management or medical and surgical management of symptomatic brain cavernomas is best. […] We involved people with cavernoma, carers, and representatives of CAUK with patients and carers at a focus group held in July 2019: all approved the design of the project and the extent of patient and public involvement. […] People with cavernoma, carers, and representatives of CAUK will also keep an eye on the research by forming an advisory group and meeting regularly to discuss the research. […] We will publish our findings in medical journals.

• #53 Breaking new ground in cerebral cavernous malformation research – Boston Children’s Answers

  https://answers.childrenshospital.org/cavmal-research/

  Building on those cornerstones, the center is enhancing the understanding, diagnosis, and treatment of cavernous malformations through its own pioneering research. […] “Through more comprehensive understanding,” says Smith, “we can dramatically improve care through targeted genetic testing and personalized care strategies, which will ultimately lead to better patient outcomes.” […] This insight enhances diagnostic accuracy for CCMs by understanding their genetic and pathological foundations. […] This knowledge can inform treatment options and foster interdisciplinary collaboration, ultimately improving patient management and outcomes. […] Their research finds that in addition to diagnosing FCCMs through clinical findings, imaging, and family history, genetic testing can identify pathogenic variants in genes such as KRIT1, CCM2, and PDCD10.

• #54 Breaking new ground in cerebral cavernous malformation research – Boston Children’s Answers

  https://answers.childrenshospital.org/cavmal-research/

  This finding underscores the importance of genetic counseling as a way to gain critical insights into FCCMs’ nature, inheritance patterns, and implications. […] Such knowledge help clinicians make appropriate recommendations for genetic testing and surveillance and empowers families to make informed medical decisions and understand familial risks. […] “Our goal,” says Smith, “is to ensure that patient care is informed by the latest research and tailored to individual needs.”

• #55 Cerebral Cavernous Malformations – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK538144/

  Stereotactic radiosurgery (SRS) is a noninvasive alternative for treating anatomically inaccessible or high-risk symptomatic lesions. […] Genetic testing is advised for patients with multiple CCMs or a family history of the condition. […] The following recommendations should be kept in mind in the management of CCMs: According to the 2017 Angioma Alliance Care Guidelines, surgical resection is not recommended for asymptomatic lesions, particularly those in eloquent or deep brain regions. […] Effective management of CCMs relies on a collaborative, patient-centered approach involving physicians, advanced practitioners, nurses, pharmacists, and other healthcare professionals.

• #56 Cerebral Cavernous Malformation Care | BIDMC of Boston

  https://www.bidmc.org/centers-and-departments/neurosurgery/programs-and-services/brain-aneurysm-institute/cavernous-malformations

  The Brain Aneurysm Institute at BIDMC provides expert, multidisciplinary care for patients with cerebral cavernous malformations (CCMs). […] Our integrated team provides you with comprehensive care, whether your condition calls for observation, medication or surgery. […] The Brain Aneurysm Institutes multidisciplinary expertise and depth of experience means that whether your condition calls for observation over time or surgical intervention, physicians and surgeons expert in each phase of diagnosis and treatment work together to bring you the best possible outcomes for your particular needs. […] Genetic testing is often recommended for people who have: MRI evidence of multiple CCMs without a DVA; A family history of CCM. […] The most concerning complications of CCMs stem from recurrent bleeding, which may cause a hemorrhagic stroke and lead to progressive neurological damage.

• #57 CCM Care Guidelines – Alliance to Cure Cavernous Malformation

  https://www.alliancetocure.org/home/for-patients/newly-diagnosed/ccm-care-guidelines/

  Cavernous Malformation Clinical Care Consensus Guidelines aim to educate patients, care providers & physicians; increase the level of patient care; and support the establishment of Clinical Centers of Excellence. […] These guidelines benefit the patient and clinical communities by providing a comprehensive set of consensus guidelines for cavernous malformation (CCM) diagnosis, monitoring, and for the treatment of lesions or their manifestations, such as epilepsy or hemorrhage. […] The full-length consensus guidelines, similarly peer-reviewed by Neurosurgery, also identifies knowledge gaps and controversies of opinion within the current practice that influence the best clinical judgment in individual cases.

• #58 CCM Care Guidelines – Alliance to Cure Cavernous Malformation

  https://www.alliancetocure.org/home/for-patients/newly-diagnosed/ccm-care-guidelines/

  Cavernous Malformation Clinical Care Consensus Guidelines aim to educate patients, care providers & physicians; increase the level of patient care; and support the establishment of Clinical Centers of Excellence. […] These guidelines benefit the patient and clinical communities by providing a comprehensive set of consensus guidelines for cavernous malformation (CCM) diagnosis, monitoring, and for the treatment of lesions or their manifestations, such as epilepsy or hemorrhage. […] The full-length consensus guidelines, similarly peer-reviewed by Neurosurgery, also identifies knowledge gaps and controversies of opinion within the current practice that influence the best clinical judgment in individual cases.

• #59 Cerebral Cavernous Malformations – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK538144/

  Stereotactic radiosurgery (SRS) is a noninvasive alternative for treating anatomically inaccessible or high-risk symptomatic lesions. […] Genetic testing is advised for patients with multiple CCMs or a family history of the condition. […] The following recommendations should be kept in mind in the management of CCMs: According to the 2017 Angioma Alliance Care Guidelines, surgical resection is not recommended for asymptomatic lesions, particularly those in eloquent or deep brain regions. […] Effective management of CCMs relies on a collaborative, patient-centered approach involving physicians, advanced practitioners, nurses, pharmacists, and other healthcare professionals.

• #60 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  The severity of symptoms and persistence of bleeding determines the type of treatment available for cavernoma patients. Often, doctors consider the best approach to be what is called watch and wait where the behaviour of the cavernoma is monitored over time, and medication given to alleviate difficult symptoms. When the severity of symptoms and the risk of re-bleeding outweigh the risks associated with surgery, a doctor may recommend treatment, usually neurosurgery to remove the cavernoma, but sometimes Gamma Knife surgery (also known as stereotactic radiosurgery) a less prevalent procedure that zaps the cavernoma with radiation. […] The CAUK Strategic Plan was approved at the January 2022 Board Meeting, with three parts: Care, Response, Cure. We deliver on our Mission via the five programmes of our Action Plan.

• #61

  https://sites.google.com/cavernostangiomsverige.org/eca/home

  in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research […] in which researchers, doctors and patients have joined forces to improve care and find a cure. […] As a European network of national patient advocacy organisations, its our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma/cerebral cavernous malformations (CCM). […] To promote therapeutic care pathways at European level and national emergency guidelines for better early intervention after a haemorrhage stroke caused by a cavernoma

• #62 “A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK) – The Waiting Room

  https://thewaitingroom.karger.com/interviews/a-typical-cavernoma-looks-like-a-raspberry-an-interview-with-ailsa-crowe-cavernoma-alliance-uk/

  Care: Direct support for adults (68% of our membership base are adults with cavernoma). Direct support for children and young adults with cavernoma and their families (4.2% of our membership are parents of children with cavernoma). […] The physical and mental impact of cavernoma goes beyond what we could capture in just a couple of paragraphs. As with many conditions that affect the brain and spinal cord, the impact of the condition varies greatly depending on exactly where a cavernoma, or multiple cavernomas, are located. […] On top of having to manage the difficult physical consequences of a cavernoma growing or bleeding, the anxiety caused by not knowing when symptoms might worsen means patients often experience long-lasting mental health difficulties. […] Cavernoma is a rare condition for which research is relatively young.

• #63 Cavernous malformations – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/diagnosis-treatment/drc-20360942

  Several medicines are being tested in clinical trials to see if specific medicines rather than surgery could reduce the chance of further bleeding. […] If you have seizures related to a cavernous malformation, you may be prescribed medicines to stop the seizures. […] Don’t hesitate to ask any other questions during your appointment if you don’t understand something. […] Certain conditions and activities can trigger seizures, so it may be helpful to: […] Connect with others like you for support and answers to your questions in the Stroke Cerebrovascular Diseases support group on Mayo Clinic Connect, a patient community.

• #64 Cerebral Cavernous Malformation Care | BIDMC of Boston

  https://www.bidmc.org/centers-and-departments/neurosurgery/programs-and-services/brain-aneurysm-institute/cavernous-malformations

  The Brain Aneurysm Institute at BIDMC provides expert, multidisciplinary care for patients with cerebral cavernous malformations (CCMs). […] Our integrated team provides you with comprehensive care, whether your condition calls for observation, medication or surgery. […] The Brain Aneurysm Institutes multidisciplinary expertise and depth of experience means that whether your condition calls for observation over time or surgical intervention, physicians and surgeons expert in each phase of diagnosis and treatment work together to bring you the best possible outcomes for your particular needs. […] Genetic testing is often recommended for people who have: MRI evidence of multiple CCMs without a DVA; A family history of CCM. […] The most concerning complications of CCMs stem from recurrent bleeding, which may cause a hemorrhagic stroke and lead to progressive neurological damage.

• #65 Cavernous malformations – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/care-at-mayo-clinic/mac-20360944

  Mayo Clinic doctors bring a wealth of patient experience to cerebral cavernous malformations care. […] Determining the best treatment for people with CCMs requires assessing the risks and benefits of surgery. […] Mayo Clinic neurovascular surgeons and neuroradiologists provide experienced, highly specialized care to people with cerebral cavernous malformations that call for removal. […] Mayo Clinic’s multidisciplinary expertise and depth of experience mean that whether you need observation or surgery, doctors and surgeons experienced in each phase of diagnosis and treatment work together to bring you the best possible outcomes for your particular needs. […] Mayo Clinic in Minnesota has been named a Center of Excellence for treating cavernous malformations by the Alliance to Cure Cavernous Malformation.

• #66 Cerebral Cavernous Malformations – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK538144/

  Stereotactic radiosurgery (SRS) is a noninvasive alternative for treating anatomically inaccessible or high-risk symptomatic lesions. […] Genetic testing is advised for patients with multiple CCMs or a family history of the condition. […] The following recommendations should be kept in mind in the management of CCMs: According to the 2017 Angioma Alliance Care Guidelines, surgical resection is not recommended for asymptomatic lesions, particularly those in eloquent or deep brain regions. […] Effective management of CCMs relies on a collaborative, patient-centered approach involving physicians, advanced practitioners, nurses, pharmacists, and other healthcare professionals.

• #67

  https://umiamihealth.org/en/treatments-and-services/neurosurgery/cerebral-cavernous-malformations

  We have a number of clinical trials enrolling and following CCM patients to better assess outcomes according to specific patient and disease characteristics. Additionally, we are collecting blood and CCMs from the operating room to help develop better molecular tests to determine which CCM may bleed. […] At UHealth, cavernoma patients receive care from a collaborative team of highly experienced doctors including cerebrovascular neurosurgeons, neurologists, radiologists, epileptologists, clinical geneticists, and a team of clinical and basic science researchers who work to discover and translate novel cavernoma therapies into the clinic. […] A multidisciplinary team of experts. At UHealth, you have access to the best neurosurgeons in the region. You will be taken care of by a passionate and knowledgeable multidisciplinary team of medical professionals who make sure that you receive the right treatment for your unique condition.

• #68 Cavernoma Program | Pacific Stroke & Neurovascular Center

  https://www.pacificneuroscienceinstitute.org/stroke-neurovascular/conditions-and-treatments/brain-vascular-malformation/cavernoma/cavernoma-program/

  The Cavernoma Program specializes in advanced diagnostics to optimize treatment decisions, including state-of-the-art brain imaging and genetic profiling of vascular malformations to identify targets for therapeutic intervention. […] Our goal at the Cavernoma Program is to optimize medical management and minimize the need for surgery wherever possible. […] When refractory cavernomas do progress to require surgical removal, we offer leading-edge minimally invasive microvascular techniques, championing keyhole approaches. […] Our expert team of neurosurgeons, neuroscientists, vascular biologists and geneticists are leaders in the field of precision therapy for cavernomas, working together to offer patients multidisciplinary team-based care. […] Our aim is to provide our patients with a connected experience of care built on clinical and research excellence.

• #69

  https://sites.google.com/cavernostangiomsverige.org/eca/home?authuser=0

  in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research […] in which researchers, doctors and patients have joined forces to improve care and find a cure. […] As a European network of national patient advocacy organisations, its our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. […] We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma/cerebral cavernous malformations (CCM). […] To promote therapeutic care pathways at European level and national emergency guidelines for better early intervention after a haemorrhage stroke caused by a cavernoma

• #70

  https://sites.google.com/cavernostangiomsverige.org/eca/home

  in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research […] in which researchers, doctors and patients have joined forces to improve care and find a cure. […] As a European network of national patient advocacy organisations, its our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma/cerebral cavernous malformations (CCM). […] To promote therapeutic care pathways at European level and national emergency guidelines for better early intervention after a haemorrhage stroke caused by a cavernoma

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