Online Health Chat with a Cleveland Clinic Physician
October 9, 2013
Cerebral arteriovenous malformations—or AVMs—are defects of the circulatory system that are congenital or generally believed to arise soon after birth. In an AVM, the arteries in the brain connect directly to nearby veins, and compromise the oxygen delivery to the brain or spinal cord. Most people with neurological AVMs experience few, if any, significant symptoms. Although is a rare condition, it affects about 300,000 Americans.
Although AVMs often do not produce signs and symptoms, 12 percent of those with the condition will have symptoms with varying severity. Hallmark symptoms are headaches, seizures, dizziness and muscle weakness, among others. A more serious condition arises when AVMs burst, which results in bleeding in the brain.
Arteriovenous malformations can be effectively treated with medications and surgery (including stereotactic radiosurgery, interventional neuroradiology and endovascular neurosurgery).
It is important to learn to recognize the causes and symptoms of AVM, as well as to understand when treatment is needed and what treatment options are available.
Let’s Chat About AVM Causes and Treatment
Arteriovenous Malformation Diagnosis: Signs and Symptoms
cathyavm: Are there early symptoms one can watch for to detect a bleed?
Cleveland Clinic Physician: Yes—one should watch for a sudden severe headache that is atypical. Everyone gets headaches, and tension headaches are gradual and progressively worse—usually dull and achy and involve both temporal lobes. An unusually painful headache with nausea and vomiting may be a sign of a bleed.
cathyavm: Can arteriovenous malformations (AVM) affect brain function?
Cleveland Clinic Physician: Absolutely. This it typically seen with seizures, but also there is also an idea that the high flow through the AVM can ‘steal’ blood from other parts of the brain and possibly cause dysfunction.
jluk: Is it possible that we all have some type of AVM (arteriovenous malformation) in our bodies? Is it just the way we develop? My 9-year-old daughter died unexpectedly of an AVM. We never knew she had one. My husband and I are devastated. It is so hard to live without her. I'm ashamed to say I did smoke at the beginning of pregnancy. The first couple of months I smoked three cigarettes a day. If you were smoking the first couple of months could that have done it?
Cleveland Clinic Physician: We do not understand the complicated factors that go into forming a brain vascular malformation. While we know that it develops in the first trimester, there is no evidence that anything the mother or father does during that time increases the risk of developing a lesion like this. AVMs are very rare and poorly understood. I firmly believe that there is nothing you—as her mother—did or didn't do to create this AVM in your daughter. Many AVMs, although present early on, don't even have symptoms until later in life, so it is not something we screen children for. I am so very sorry for your loss.
auntmom: Do AVMs (arteriovenous malformations) grow and change during the adult lifetime prior to treatment?
Cleveland Clinic Physician: Yes, they certainly can. While it is believed that AVMs occur very early on in pregnancy, they can change in size and shape, develop aneurysms and result in narrowing of draining veins. They are dynamic lesions.
auntmom: Do chances of a bleed increase when there are symptoms of partial seizures and numbness after 35 years with no symptoms?
Cleveland Clinic Physician: Not that I am aware. This patient has likely had this AVM since he was born, which is the current understanding of AVMs. Arteriovenous malformations typically present with seizures in younger patients. Treatment with anti-seizure medication is usually effective. Seizures do not increase the risk of bleeding, which we commonly quote as four percent per year.
auntmom: Are large AVMs (arteriovenous malformations) usually less likely to rupture than the small ones?
Cleveland Clinic Physician: Yes. It has been noted in the medical literature that smaller AVMs are more likely to bleed. But size is only one factor in determining bleed risk. The location of the lesion, how it drains blood through the veins, whether or not there are associated aneurysms, and prior history of bleeding all factor into the risk of rupture.
auntmom: My nephew’s arteriovenous malformation (AVM) on his left parietal lobe is 4 cm in size and is grade 4. He believes the statistics imply that he will die soon. What statistics are correct regarding chances of stroke, bleed and death? What percent of AVM bleeds result in death?
Cleveland Clinic Physician: His risk of hemorrhage depends on many factors, including location, how the lesion drains from the brain (sometimes there is narrowing) and aneurysms in the AVM that can increase the chance of bleeding. Typically, there is a four percent chance per year of bleed, which means four people out of a 100 people with AVM will bleed. Of those four, there is a 10 percent chance of dying or being severely injured from the bleed in 10 to 30 percent of patients. However, predicting who will bleed and who won’t is very difficult. The risks of leaving the lesion alone and treating it are not always clear because treatment can hurt the patient more in some cases. Each AVM is unique and challenging to make treatment recommendations in every patient.
Noavm: Three years ago when my son was 14 years old, he had a successful craniotomy for an AVM (arteriovenous malformation) in the frontal lobe area. He only had one seizure prior to the surgery and we discovered his AVM. He has had no side effects after the surgery. He is not on any medication and never was on any anti-seizure medication. Is he still at risk of having a seizure?
Cleveland Clinic Physician: It is very unlikely that he will have seizures this late after surgery, but I can never say he will be completely seizure-free the rest of his life. Both the AVM and surgery can scar the brain, which may lead to seizures later in life. However, if he is asymptomatic and seizure-free now, I would not recommend anti-seizure medication at this time. (These drugs can have side effects.)
Alibess: I had an AVM (arteriovenous malformation) that was about the size of a golf ball removed from between my frontal and parietal lobes eight years ago. I was left with proprioception (the unconscious perception of movement of the body by the brain) and no feeling in my arm and leg. The issue with feeling has improved each year. However, the proprioception remains and I still look a bit drunk when walking. This year, though, as I continue to get more feeling in the leg the pain in my calf and foot is very extreme—especially at night. Is there a reason for this? Could you recommend the right type of provider to help me?
Cleveland Clinic Physician: Would you say that the pain in your foot is described as ‘burning pins and needles’? If so, that could be a sign of what we call neuropathic pain, which indicates that the central nervous system isn't sending or receiving the right information about sensation. This might get better with time, but if this is your type of pain, you may be helped by a drug called Lyrica® (gabapentin). You may need to take this drug several weeks to notice any effect. I would recommend that you see a pain specialist.
Wyburn-Mason Syndrome and AVMs
Joshua19: A relative has multiple AVMs (arteriovenous malformations) and has had a left frontal lobe bleed. She has a large AVM in her brainstem and basal ganglia area. At first we were told was not an option to leave it untreated, but then we were told it could not be treated. We feel we are just waiting for the worst to happen. Also, because of a port-wine stain birthmark down her forehead, left eye and nose in addition to the AVMs, we were told she has Wyburn-Mason syndrome. What does this mean for the future?
Cleveland Clinic Physician: There is not a lot out information out there on Wyburn-Mason syndrome. I have never personally had a patient with this diagnosis. My understanding is that AVMs in these patients are not much different in behavior than AVMs in other people without this syndrome. The risks of treatment have to be weighed against the risk of re-bleed (i.e., whether treating an AVM would cause stroke and severe disability), so each patient is different. Radiation treatment for basal ganglia AVMs can be a good way to go, but the risk of bleeding is still present for up to three years after radiation. (It takes time for the AVM to respond to radiation.) It is estimated that there is a four percent chance of a bleed per year, and upwards of approximately 10 to 30 percent of a second bleed after the first bleed. However, if there isn’t a second bleed, the risk of re-bleed actually drops.
Although I don’t know your relative’s age, this person has had this AVM for a long time. The angiogram characteristics can help determine bleed risk, which may help you decide if treatment risks are appropriate.
Headaches and AVM
Rhonda: My daughter suffered a seizure in April 2009, which resulted in the finding of an AVM (arteriovenous malformation). She was 15 years old at the time. That same year, she went through five embolizations and then cranial surgery to remove the AVM. Since that time, she has done very well although she does suffer with headaches almost on a daily basis. They tend to be worse if she exerts herself physically or is she is under a lot of stress. Six months after surgery, due to the concern of the severity of the headaches, we had an EEG done. We had these results reviewed by our surgeon and he advised that there was no activity of such that showed a problem. Should we be concerned about these headaches and have her tested again? She normally takes ibuprofen and that tends to help relieve part of the pain. My daughter is now a sophomore in college studying nursing, and hopes to work in the neurology department after graduation and is doing very well.
Cleveland Clinic Physician: Has your daughter ever visited a headache clinic or seen a headache specialist? Often there are better medications that can relieve or prevent headaches. A sudden severe and atypical headache would be concerning for a bleed, but it sounds like she has a chronic problem that better medication may address. If there is no other evidence for seizure activity then likely there is no need for a repeat EEG. If her AVM isn't totally cured, she will need follow-up angiograms to look for changes in the blood vessels.
shshffr: Should increasing migraine headaches be a concern? I had a craniotomy 12 years ago for an AVM (arteriovenous malformation).
Cleveland Clinic Physician: Have you had any follow-up imaging, such as an angiogram, to see if there is any leftover AVM? If you have been cured, then I have no concerns about bleeding. Migraine and headache can occur for all kinds of reasons, and sometimes people get chronic head pain after brain surgery. I do not necessarily think there is anything dangerous, but seeing a headache or pain specialist to get on a good combination of medication would be reasonable.
shshffr: Does Cleveland Clinic have a headache clinic, and would it be appropriate to follow up with them?
Moderator: To learn more about the Headache and Facial Pain Clinic at the Cleveland Clinic please visit http://my.clevelandclinic.org/services/neurological_institute/center-for-neurological-restoration-pain/treatments-services/additional-services
Personality Changes and Behavior
auntmom: I am the aunt of a 35-year-old man who has an unruptured AVM (arteriovenous malformation) on his left parietal lobe. He was advised by the clinic at Barrow Neurological Institute, in Phoenix, and Johns Hopkins Hospital, in Baltimore, to leave it untreated due to its location near or on a motor center. His symptoms include three partial seizures, numbness and tingling. Since this diagnosis, my nephew has demonstrated severe anger specifically toward parents and especially his mother. He is currently taking Keppra® (levetiracetam). What might cause this extreme personality change—pressure on the brain, Keppra® or shock of diagnosis? Do you believe AVMs cause personality changes even before they bleed?
Cleveland Clinic Physician: AVMs can cause all kinds of trouble in the brain. If the frontal lobe is involved, such as an AVM in the parietal lobe, it can ‘steal’ blood from other parts of the brain that could result in a change in personality. An MRI may be able to help sort that out. Seizures can also be an issue, and Keppra® may be affecting his mood. Has he had an EEG? Has he tried other antiseizure drugs that are effective?
Patients that express anger are often really frightened of their diagnosis and what it means, and frustrated by the medical community’s lack of safe effective treatments. Counseling may be a good idea to address this side of living with disease.
AVM Recurrence and Re-bleed
Noavm: Can an arteriovenous malformation (AVM) recur in a child after it is successfully removed by surgery? Are there any symptoms of recurrence of AVM?
Cleveland Clinic Physician: If the AVM is completely gone (and that would be judged by a formal angiogram), then the likelihood of an AVM recurring later in life is low. It may be worthwhile to have a follow-up angiogram in five years to ensure that there is no further lesion.
Ky girl: I have had two arteriovenous malformations (AVM) previously in my left arm. The first occurred in 2004, and then another was found higher up on the same arm in 2009. Within the last month an AVM has occurred in my upper arm again. Will this keep happening? Is this typical?
Cleveland Clinic Physician: Treatment of AVM is typically considered curable, if the entire ‘nidus’ or tangled blood vessels where arteries and veins connect are removed or disrupted. Any nidus that remains can actually grow over time, and there are certain people with genetic differences that are more prone to AVMs and regrowth of them. Was your AVM considered cured or partially treated? Do you have a family history of these types of problems?
bearboskie: After an AVM ruptures for the first time, what are the chances of a re-bleed? What are the chances of it never bleeding again, and do statistics show a reduction of risk of re-bleed after a certain period of time?
Cleveland Clinic Physician: In the first year after a bleed, the risk of re-bleed is anywhere from six percent to 30 percent, depending on the anatomy features of the lesion. If there hasn’t been a second bleed in that year, the risk of bleeding in the future actually drops back to around four percent per year.
Extracranial AVMs and Spinal AVM
tvan: I have been dealing with an arteriovenous malformation (AVM) in my left neck and shoulder since 1978. In the last three years, it has been impacting the hypoglossal nerve on my left side, and causing numbness and partial paralysis of the left side of my tongue. In addition, I have a lot of pressure in my left ear and can almost always hear my pulse in my left ear (and occasionally my right ear). Is the hypoglossal nerve a ‘live with it because treatment is worse’ scenario? Also, is there anything that I can do to deal with these two issues? The local doctors think that it is related to the AVM, but can't say for sure. They have consulted with my doctor at Mayo Clinic, but they made no conclusions.
Cleveland Clinic Physician: Have you had an angiogram? Extracranial AVMs are routinely treated, but, again, the risks of the procedure have to outweigh the current symptoms. The hypoglossal nerve is important in tongue function, and injury would affect speech and swallowing. The more concerning problem is the AVM and its relation to the brain. Treatment could cause a stroke and disable you. Every AVM is unique, and I really would need to see an angiogram to give you further advice. But, yes, it is entirely possible that AVM compression, or pulsation of the AVM on the nerve could be causing your symptoms.
ab05980: Are spinal AVMs (arteriovenous malformations) very different or similar to cerebral AVM in terms of risk, treatment, etc.?
Cleveland Clinic Physician: AVMs in the brain are really rare—far less than 1 percent. Brain aneurysms are more common. Spinal AVMs are even rarer. Spinal AVMs tend to present with progressive weakness of the legs or incontinence, rather than bleeding. Brain AVMs present with bleeding or seizures. Every AVM, whether in the brain or spinal cord, is individual. There are four primary categories of spinal AVM—ranging from those that are treatable to more complicated lesions that really are best left alone.
kamysha: How rare is the type IIIa AVM (arteriovenous malformation)?
Cleveland Clinic Physician: Are you asking about juvenile spinal AVMs? Arteriovenous malformations in general affect less than1 percent of the population, and spinal AVMs are even rarer than brain AVMs.
ab05980: My son has had a spinal AVM (arteriovenous malformation) since 2011 when he had a subarachnoid hemorrhage. He is being treated using particle embolization in Paris (glue embolization and surgery are not an option). The AVM is largely occluded, but not fully. What restrictions should he observe? Specifically, can he play contact sports like soccer?
Cleveland Clinic Physician: I would recommend avoiding any contact sports like football or rugby. Kicking the soccer ball around and running without being hit by an opponent is probably fine. We do not understand the effects of scuba diving on vascular lesions, but airplane travel appears to be fine. There are no hard and fast rules. I think exercise should be done, and trying to predict bleeding in every individual case can be very hard.
elizabeth22: Can an AVM (arteriovenous malformations) be detected by an MRA (magnetic resonance angiogram) without contrast?
Cleveland Clinic Physician: Certainly the larger ones can, but sometimes smaller lesions are not as obvious. The best test is a diagnostic cerebral angiogram.
jmilarts: How do angiograms work?
Cleveland Clinic Physician: An angiogram is the best test for blood vessels. It literally means ‘in the blood vessels.’ Doctors access a blood vessel in the arm or leg with a small needle, and pass a small tube into the vessel under plain x-ray. Doctors then guide that tube through the highway of the arteries and veins anywhere in the body.
An angiogram means that you will get contrast dye (the same used in a CT scan), which in rare cases can hurt the kidneys or cause an allergic response—especially if you take metformin for diabetes. There is some exposure to x-ray radiation too. The contrast is injected into the blood vessel and the x-ray takes a picture of the vessels that fill up with contrast. This tells doctors about the inside of the blood vessel—how narrow or wide it is, where blood is travelling, and how fast it gets there.
Groggy Froggy: Is an angiogram just an MRI with dye/contrast?
Cleveland Clinic Physician: No. An MRI is a very strong magnet and does not use radiation. An angiogram is a combination of contrast dye and plain x-ray. This is the same kind of x-ray you might have to assess for fractures of the bone. An MRI can show blood vessels, but it also shows soft tissue, bone, fluid and everything else in the body. An angiogram only highlights blood vessels although you can see bone as well. Flow through the blood vessels is also seen, which you can't appreciate on MRI.
jluk: Are you familiar with any new test coming out that will detect AVMs (arteriovenous malformations), like a blood test?
Cleveland Clinic Physician: I am not aware of anything. AVMs are so very rare overall that screening has not been established. Arteriovenous malformation detection, at this time, still relies on imaging.
Treatment with Medication
auntmom: What treatment or follow up management do you recommend for a large unruptured AVM (arteriovenous malformation) which presents symptoms of numbness, tingling and partial seizures?
Cleveland Clinic Physician: It depends on the patient. However, if seizures are the only problem, then anti-seizure medication could be very effective and no further intervention is necessary. I would recommend an angiogram in all patients with an AVM to address the risk of hemorrhage. However, in some cases, if the seizures are well controlled well and the patient is otherwise asymptomatic, follow-up imaging can be performed every two to five years depending on the physician. Arteriovenous malformation features can change over time. Aneurysms can develop or draining veins can become narrowed (and both of those features can increase the risk of bleeding).
lilpuu: What side effects would be experienced after taking 2 mg of steroids twice a day for three weeks?
Cleveland Clinic Physician: This can be individual, in that some people have no problems and others are bothered tremendously. Symptoms, such as peptic ulcer disease, stomach bleeding, weight gain, moodiness, fatigue and increased appetite, have all been seen in people on steroids. If a patient is having trouble with steroids, sometimes the dose can be lowered which may make a difference.
cathyavm: What are the side effect statistics for radiation treatment? What about other AVM (arteriovenous malformation) treatments?
Cleveland Clinic Physician: Treatment depends on many factors, including patient age and health, the location of the lesion (surface of the brain or deep in the brain), size of the tangled vessels, and whether the lesion is in an important area of brain function (not all brain is considered ‘important’ in day-to-day functioning).
Treatment can involve anything, including a watch-and-wait approach, anti-seizure medication, surgery, endovascular embolization, radiation therapy or some combination of all the above. We try to treat the AVM without hurting the patient any further. The risks of brain injury have to be taken into consideration with treatment, and the risks are different for each individual.
An AVM that has never bled before typically has a four percent chance of bleeding every year. Radiation treatment is low risk, but is usually reserved for patients who cannot undergo other forms of treatment such as surgery. This would be because the blood vessels involved are in the part of the brain that we can’t live without and considered surgically inaccessible. Gamma knife radiation therapy is usually a one-time dose of radiation to the AVM, with risks of about five percent of radiation injury (which can be stroke like symptoms or swelling) and can happen six months to one year after treatment. Radiation is effective in curing the AVM in about 80 percent of patients, but the risk of bleeding every year is still four percent until the AVM ‘shrinks’ and disappears—and that can take anywhere from six months to three years after the treatment.
Del0res: My 22-year-old daughter was diagnosed with an AVM (arteriovenous malformation) near her thalamus. She sought many medical opinions, but no one would perform surgery to remove it. They did not want to embolize it because they couldn't reach the whole area. My daughter had stereotactic radiosurgery in March 2012 and has had nothing but problems since. She has severe radiation necrosis—despite many rounds of steroids—has nystagmus (her vision has gotten progressively worse), had a stroke and lost function of the right side of her body (including her arm, hand, leg and foot. She has had 60 hyperbaric sessions, five plasmapheresis treatments, and her third Avastin® (bevacizumab) infusion is scheduled for Octiber18 with follow-up imaging on October 24. Her last imaging showed the area of necrosis has tripled in size. The neurologist was afraid a spot he saw might be astrocytoma. However, rather than biopsy and wait 28 days before beginning Avastin®, he felt it was imperative to intervene immediately. Can you offer anything more? She is scheduled to receive ketamine for pain management in March 2014. Help please!
Cleveland Clinic Physician: Her radiation injury sounds very severe. It is often difficult to tell on post-radiation imaging what is tumor, inflammation or radiation necrosis. In some cases, biopsy is the only way to tell these problems apart. There is some current evidence that Avastin® may help with radiation injury. Pain control is definitely important with thalamus pain syndromes. I would direct you to a radiation oncologist who has more experience with these symptoms and issues.
jmilarts: I am 21-year-old female, and had my first radiation treatment for my AVM (arteriovenous malformation) in August, with a second planned for December. My AVM is large and too risky to remove via open surgery. What methods should I expect my doctor to use to monitor the size of my AVM in coming years? When am I likely to start seeing a reduction in the size of my AVM—if there is going to be any? If the AVM shrinks but doesn't completely disappear, how is that likely to impact my options for pregnancy in the next 10 to 15 years?
Cleveland Clinic Physician: After the first radiation treatment, it could take up to three years to see a result, and the bleed risk is still a potential during this time. Angiograms would be the main way to monitor changes in an AVM over the years. Pregnancy risk is about three to four percent in most literature about risk of bleeding, and bleeding could occur at the time of labor or even up to three months after delivery. The method of delivery, C section or vaginally, does not seem to change the risk.
Treatment is often indicated prior to a woman getting pregnant, but your options may be limited in terms of a cure if your AVM is complex.
I do not think that having an AVM is an absolute contraindication to pregnancy, but getting good counseling and having a knowledgeable obstetrician (you may be considered ‘high risk’) may help lower your risks.
Endovascular Correction of AVM
zengfu: My daughter has got a high-flow AVM (arteriovenous malformation) in her right cheek. Currently she has no obvious clinical symptoms, but she is slightly swollen from time to time.
If there are a lot of shunts (little connecting vessels), is it best to do surgery? Would embolization or sclerosis therapy not work? When does AVM warrant treatment? What happens if it is left untreated? What are the risks of AVM during pregnancy?
Cleveland Clinic Physician: A facial AVM can be alarming to see, but is typically much safer than an AVM in the brain. The risk of bleeding from the facial lesion is less, but it can also grow and get more extensive over time. If you leave it untreated (and in some cases that is entirely appropriate), there is a small chance that it could get larger and be a cosmetic issue in the future.
Any treatment that breaks up all of the little connections between arteries and veins is very effective—and that can be done in a number of endovascular ways. Sometimes it is better to try an endovascular approach first to make the lesion smaller and less likely to bleed more and then follow with surgery afterwards. An AVM in the face that has no connection to the brain or spinal cord is unlikely to be a major risk in pregnancy (although the AVM can bleed or grow)
bearboskie: If Gamma Knife was performed two times on an inoperable AVM (arteriovenous malformation) and the AVM was significantly reduced but not obliterated, is there an option for a third Gamma Knife procedure?
Cleveland Clinic Physician: How long ago was the second treatment? A second dose of radiation typically takes even longer to achieve results, and in some literature can take up to six years from the time of the second treatment. The risk of radiation injury can increase quite a bit, and I do not believe that Cleveland Clinic is offering more than two attempts. I would refer you to discuss this with a radiation oncologist who could give you more advice about the risks and benefits of a third treatment and the medical institutions that would offer it.
bearboskie: Have there been any significant developments in Gamma Knife technology (or any other treatment options) since 2007 for inoperable AVMs?
Cleveland Clinic Physician: Some AVMs are better left alone, in that the natural history of this lesion and the trouble it could cause to a patient is actually less than the risks of treatment. I do not know of any further advancement in treatment other than the results of surgery, endovascular and Gamma Knife, which is likely the same since 2007. Unfortunately, AVMs are rarer lesions, which makes research and new treatment protocols difficult.
krsch: Can the treatment itself for AVM (arteriovenous malformation), i.e., embolization, cause a bleed?
Cleveland Clinic Physician: Absolutely. Embolization by itself is rarely curative of an AVM, and usually done together with radiation therapy or surgery. Once you change the flow within an AVM, it's still active, so it can be prone to rupture. However, this is difficult to predict. It may not even happen immediately. In some published medical case series there is an eight to 10 percent risk of bleed during and after embolization.
Treatment for RASA1 Arteriovenous Malformation
pagelaneb: How does a RASA1 genetic mutation confirmation affect the treatment plan for a patient with an existing AVM (arteriovenous malformation) and multiple hemangiomas? Is enough known about the RASA1 mutation to predict how an AVM and hemangiomas will respond to treatments? How far away is genetic therapy treatment for a RASA1 genetic mutation?
Cleveland Clinic Physician: Treatment would most likely be aimed at the lesions that are causing symptoms. Prediction of behavior is based on the anatomy of the AVM (e.g., a deep brain lesion that is small and has deep venous drainage would be at higher risk of bleed than a surface brain lesion) rather than individual genetic factors. As far as I am aware, currently there are no active treatment regimens specific to genetics. We are trying to manage patients by symptoms and evaluation of risk.
Treatment of Cavernous Malformation of the Brainstem
jc7: I have a cavernous malformation in the brainstem. I have had two bleeds. One was more than 20 years ago and one was in 2012. I am doing really well other than swallowing difficulties and insomnia. I’m doing therapy for the swallowing to manage this deficit. I have had three opinions, and two doctors say to have surgery. I am struggling with having such a major surgery when I’m currently walking, talking and leading an active normal life. If I were to have surgery, there are no guarantees that I’ll be walking and talking as I am today. Every doctor has given me a different statistics of a re-bleed and it’s very frustrating. One doctor says there is only a one percent chance that it will re-bleed. If this is a factual statistic, then why would I elect to have surgery? What are your recommendations and are there good statistics for re-bleeds?
Cleveland Clinic Physician: Cavernomas, especially in the brainstem, are very controversial in management. I think you are considering the problem in a very thoughtful way. Cavernomas have microhemorrhages all the time, and there are many different statistics out there as you have seen. It's their nature, and the risk of a large bleed is difficult to predict. The trouble is the location. The brainstem is extremely important for day-to-day function and quality of life.
I prefer to offer to treatment to patients with a recent bleed who are having a lot of neurological difficulties, and that bleed is very close to the surface of the brainstem to minimize further damage to the brainstem. There is no evidence for radiation treatment as a good alternative at this time.
Other surgeons are more aggressive, which can be entirely appropriate. This is your life, and ultimately your decision. The risks of injury from surgery are unavoidable, and you have to weigh them against the risk of re-bleed and getting hurt that way. It's very individual. I wish I could give you a more straightforward answer, but I am more conservative with treatment for cavernomas.
jc7: Are there any cures or new treatments on the horizon for cavernous malformations in the brainstem?
Cleveland Clinic Physician: Currently treatment is limited to surgical excision or a watch-and-wait approach. There is no good evidence that radiation therapy helps. Reaching a cavernoma by endovascular therapy is not really possible—the feeding vessels are extremely small and are not seen on angiogram.
What you decide to do about your cavernoma is a very personal decision. The risk of bleeding is low, but over time symptoms can get progressively worse. The risk of surgery can be high. If the cavernoma is on the surface of the brainstem, it may be more amenable to resection in a safer manner. If the cavernoma is not bothering you, and you remain asymptomatic, it may be best to leave it alone.
jc7: Are there any cures for swallowing difficulties from a cavernous malformations bleed? I cannot swallow any solid food without chasing each bite down with water.
Cleveland Clinic Physician: When and where did your cavernoma bleed? I would recommend a swallowing study to make sure there are no other treatable causes of swallowing difficulties. If a brainstem bleed led to the swallowing issues, I would expect improvement after a bleed in the first three months, with some improvement over the next year. Unfortunately, some issues may be permanent and difficult to resolve fully.
Complex AVM Treatment
kerri92: What type of management strategies are recommended for individuals with large, untreatable AVMs (arteriovenous malformations)?
Cleveland Clinic Physician: Anti-seizure medication is used if seizures are present. Otherwise, the natural history of the lesion (the trouble this lesion can cause you) is often less than the risk of any treatment, and therefore it is best left alone. Unfortunately, there are some AVMs that do not have treatment options.
hurstmom: My daughter was diagnosed with an AVM (arteriovenous malformation) on both sides of her brain In 2008 when she was eight years old. She had a major bleed at that time. They only treated the left side of the brain affected with the AVM with the hope that the right side would not have any growth or activity and that new technology would enable them to treat it in the future. She suffered another bleed on Friday. We have now learned that the right side has doubled in size, and they are not able to treat due to a risk of causing a vegetative state. Have you heard of any other technologies? What is considered the best neurological center? I would like another opinion. I can't just sit back and wait for my child to die.
Cleveland Clinic Physician: It sounds like your child's AVM is extremely complicated. Some AVMs are very aggressive. Like all AVMs, the risks of treatment (which can make a patient worse) have to be weighed against the risk of re-bleed. Without seeing your child's imaging, it is difficult to say what the best solution is. Any major center with neurosurgery and neurointerventional endovascular management with experience in pediatric disease is entirely appropriate. Cleveland Clinic has a MyConsult® option, if you couldn't travel and wanted a second opinion that way. I would recommend you speak to your physician involved who can recommend an appropriate site close to you.
Moderator: To learn more about MyConsult® at Cleveland Clinic, please visit eclevelandclinic.org/myconsult.
lilpuu: My wife underwent Gamma Knife therapy two years ago and now has edema in her brain. Our doctors at Barrows Neurological Institute, in Phoenix, put her on steroids about three weeks ago. Will this get rid of the edema? What other treatment could be used instead of Decadron® (dexamethasone sodium phosphate) steroids for three weeks? We would like her to start oxygen treatment.
Cleveland Clinic Physician: Steroids have been a long standing proven treatment for edema. There is some new evidence that a drug called Avastin® (bevacizumab) is helpful for radiation edema, but radiation injury can be very difficult to treat regardless. I have no experience with oxygen treatment, but would recommend a radiation oncologist to help you with your questions.
Exercise and AVM
bearboskie: I understand that regular exercise is important to maintaining a healthy blood pressure and that increased blood pressure can increase the likelihood of an AVM rupture. If exercising can cause a spike in blood pressure, is an individual putting themselves at a greater risk of a bleed in doing so?
Cleveland Clinic Physician: I always recommend exercise. I would avoid contact sports and scuba diving, but all other activities are likely okay.
AVM Research and Experimental Techniques
lraber33: What research is being conducted currently on the treatment of more complex AVMs (arteriovenous malformation)?
Cleveland Clinic Physician: There is a lot of ongoing research about AVMs—with more focus on the underlying cause and development of these lesions. Arteriovenous malformations are so rare that creating clinical trials and big treatment protocols to assess best outcomes is really difficult because we simply don't have enough patients (compared to more common vascular diseases, like aneurysms). Even rarer are the larger and more complex AVMs, and treatment becomes even more difficult to address. At this time, there are just no ‘right’ answers with regards to treatment.
auntmom: Do you have any knowledge of treatments that are done outside the U.S. that may be illegal in this country but have shown to be successful elsewhere? I have heard of a treatment in Switzerland where embolizations are done with different materials and the results are good.
Cleveland Clinic Physician: No, I don’t know of any treatments other than the standard ones (surgery, endovascular procedure or radiation).
Moderator: Thank you for your time today in addressing AVMs. Also, patients, thank for your patience between questions. We appreciate your participation and hope you will join us for other chat topics in the future.
Cleveland Clinic Physician: Thank you for all of your interesting questions.
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