I’ll tell you my story and then I’ll tell you about the condition afterwards.
I started having pains in my neck, shoulder blades and lower back about ten years ago. I know it was then because I remember having them when I was 23 and I had started a particular job at 23. I saw the GP, who said it was probably muscular. A few years later, I was involved in a car accident, a car hit the back of us at force and I had whiplash and I had a really bad neck, shoulders and back which I don’t know if that has aggrevated any pre existing condition or made pain worse.
I’ve also been having migraines and severe headaches since I was about 15 and used to be on painkillers at that time, then years later I was under the care of a neurologist who has prescribed me preventative migraine medication which I take daily and another migraine tablet that you take at the onset of a migraine but you are limited to about two tablets a week. I must admit the migraines and headaches have dramatically decreased with the medication which I’m thankful for, I did have a brain MRI which came back clear and I was diagnosed with chronic migraine.
I’ve had pains in my legs since I was a child, I used to be told they were growing pains but clearly they’re not as I’m an adult and still get them! I get them down my calves, in my feet, in my groin, in my ankles, pain in my knees, it hurts standing up still for more than a few minutes, I get burning in my feet, I get aching, I get tired. I get cramps, numbness, pins and needles, sometimes I can’t feel my legs. I’ve seen them in biomechanics and she said she’s going to refer me to physiotherapy and that she’s curious to know if all my problems with my legs are connected to my back!
I’ve had a lot of struggling to wee (urinary retention) and the last few days, I’ve been going once a day, sometimes twice. I have said this a few times when I’ve been in hospital and told my gynaecologist, before any of us knew what was going on with my back!
I’ve been having a lot of back pain recently, but I don’t like to complain of physical pain at my age. Just feel really embarrassed and ashamed and that there are other things of mine they’re dealing with other than more things!
I had an MRI scan on my pelvis and incidentally they noticed an issue with my back. The gynaecologist rang me to tell me and that he’d referrered me to Orthopaedics.
When I had a follow up with the gynaecologist, he told me I have Spinal AV Malformation. I asked him what it was and he just said its where the arteries and veins are tangled together.
When I saw my GP, She explained that the consultant in oncology and orthapaedics and tumours had suspected I had sarcoma cancer and that a multi disciplinary meeting team (MDT) had taken place and that I don’t have cancer but that it is definitely a Spinal AVM. She said she was going to contact them and tell them how much pain I’m in and take it from there.
She prescribed co codamol but it wasn’t even touching the pain. I saw her the week after and she put me on tramadol for the pain and she said she could see I was having muscle spasms so prescribed a short course of diazepam as well. I thought maybe the hormone injection had made the pain worse but when I contacted the Endometriosis nurse, she said she’s never known back pain to be a problem, she said muscle pain yes, but not back pain.
I’ve cried, that’s how much pain I’m in and I feel so helpless. I don’t know if the AVM is bleeding and that’s why it’s hurting so much, but I know that the only way to find out if it is bleeding, is to do an MRI scan or CT scan.
I’ve been referred to a hospital that specialises in spinal problems. They are going to have an MDT meeting and look at my scan and look at my GP’s referral and my symptoms and then contact me about what the next step is.
I’m struggling to clean, to lift, to bend, sometimes it’s difficult and slow pace walking up and down stairs as my legs have seized up or feel ‘strange’ or because my back hurts so much.
I’m so embarrassed writing all this!!
Anyway that’s my story and now I will put some information that I have retrieved from the Internet about AVM’s and Spinal AVM’s.
What is an AVM?
1) A congenital disorder (one present at birth) of blood vessels in the brain, brainstem, or spinal cord that is characterized by a complex, tangled web of abnormal arteries and veins connected by one or more fistulas (abnormal communications).
2) An abnormal communication between an artery and vein that may be present at birth or may result from injury or infection. Blood may flow directly from the artery to the vein, bypassing the small vessels where oxygen and tissue nutrients are exchanged. These unusual malformations are often found in the brain and spinal cord, but may occur anywhere in the body.
Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels directly diverts blood from the arteries to the veins.
What is a Spinal AVM?
A Spinal AVM is an Arteriovenous Malformation that is located within, on or around the spinal cord.
What is a Dural Fistula?
An abnormal direct connection (fistula) between a meningeal artery and a meningeal vein or dural venous sinus. (Also known as an arteriovenous fistula)
What are the symptoms of a Spinal AVM?
A lot of the time people don’t have symptoms of a spinal AVM and it’s been known that when there is a bleed within the AVM and the person is in pain or having loss of bowel or urinary motions that is when they may conduct an MRI or CT scan and then notice the person has a spinal AVM.
Symptoms of a Spinal AVM can be almost anything. The most common symptoms that occur are: numbness, weakness, sensation irregularity, problems with balance, burning or hot sensations, paralysis, headaches and random pains throughout the body. Symptoms can range greatly and can affect your body in ways that you wouldn’t think possible. For example, a Spinal AVM can also affect your bowel movements, urination habits & abilities, concentration and many other systems within your body.
The severity of your symptoms also depend on the size, location and type of AVM.
What types of AVM’s exist?
Type 1 Spinal AVM: Dural Arteriovenous Fistula
Dural arteriovenous fistulas are the most common variety of spinal cord AVMs, comprising 80-85% of spinal AVMs. These lesions show a male predominance (80-90%) and generally present in late adulthood, ages 40-60. Presentation is generally with radiculomyelopathy, followed by slow but progressive neurological deterioration. Subarachnoid hemorrhage is very uncommon in dural AV fistulas, and acute deterioration in neurologic function is unlikely.
Site of pathology in these lesions is within the dural root sleeve, where a direct arteriovenous fistula develops, generally with a single dural artery feeder vessel. Additional small feeding vessels from adjacent levels may also penetrate the dural and contribute to venous outflow. Hence these lesions are not true AVMs but instead AV fistulas. Venous drainage of the AV fistula is by a high-pressure, low-flow arterialized vein intradurally. Venous dilatation may extend rostrally and caudally from the fistula site. Eventual drainage is to the coronal venous plexus. Increased pressure in the coronal venous plexus yields spinal cord dysfunction, via chronic venous hypertension and loss of autoregulatory tone. Increased venous pressure yields chronic spinal cord ischemia, cell loss, and cord atrophy. Impaired autoregulation yields direct transmission of changes in systemic arterial pressure to the spinal cord without the normal dampening effect of the venous plexus.
Goal of treatment is isolation and obliteration of the fistula and draining veins, which normalizes venous pressure and corrects venous hypertension. Two different therapeutic modalities are possible: embolization of the feeding vessel, via endovascular techniques, and direct surgical ligation, through laminectomy and direct intradural exposure of the fistula. Fistula obliteration yields correction of the lesion; resection of arterialized veins is not necessary and may actually be traumatic to the spinal cord. Embolization in well chosen cases is a safe and effective therapy for dural AV fistulas. In cases where the site of origin of the AV fistula is a large radicular artery and embolization may be difficult or dangerous, direct surgical exposure is preferred.
Type 2 Spinal AVM: Intramedullary AVM
This is a true intramedullary arteriovenous malformation of the spinal cord. These lesions are characterized by a compact intramedullary nidus, with feeding vessels arising from the anterior or posterior spinal arteries, or both, and drainage into an arterialized coronal venous plexus. In contradistinction to spinal AV fistulas, flow within these lesions is high pressure and low flow, with rapid filling on angiogram and early venous drainage.
Intramedullary AVMs have equal incidence distribution between men and women, and generally present at a much earlier age (average age of presentation: 24). The clinical course of these lesions is marked by progressive and fluctuating myelopathy, often overlaid by periods of acute neurologic deterioration secondary to hemorrhage within the AVM. Sudden apoplectic presentation, often with profound neurologic impairment and possible transverse myelopathy, is common in spinal AVMs. SAH (hemorrhage?) often occurs in these lesions, occurring in 50% of cases. While dural AV fistulas are more commonly found in the lower thoracic and lumbar spine, true intramedullary AVMs occur throughout the cord, and hence presentation with upper extremity symptoms is possible.
Treatment of intramedullary spinal AVMs involves initial embolization of feeding vessels using particulate matter. Immediate clinical improvement is often noted after embolization, through reduction in arterial steal and improved cord perfusion; however, recanalization may occur over time, with continued risk of hemorrhage. Hence, surgical resection of residual nidus after embolization is generally considered.
Type 3 Spinal AVM: Juvenile AVM
Juvenile spinal AVMs are extremely rare lesions. These lesions are again true AVMs, with an intramedullary nidus which may occupy the entire spinal canal at the involved level. Cord tissue is present within the AVM interspaces. Extramedullary and even extraspinal extension of the lesion is possible
Juvenile AVMs are large and complex lesions, with multiple arterial feeding vessels often arising from different cord levels. Hemodynamically, this lesion manifests both high flow and high pressure, often yielding an auscultatable spinal bruit over involved levels. They occur most commonly in adolescents and young adults. Presentation and treatment are similar to type II AVMs; however, prognosis for these lesions, considering their size and vascular complexity, is understandably very poor.
Type 4 Spinal AVM: Perimedullary Arteriovenous Fistula
These rare lesions are similar to type I spinal AVMs, in that they are not true AVMs but instead arteriovenous fistulas. The fistulous connection in this lesion is intradural but extramedullary, with feeding vessel or vessels arising from the anterior spinal artery. Venous drainage is via an enlarged coronal venous plexus. No small vessel network or glomus is evident connecting arterial and venous halves of the circuit. These lesions were first described by Djindjian, and then classified as a type IV spinal AVMs by Heros et al.
These lesions may present in young adults, but presentation in the third to sixth decade is more likely. SAH is possible with intradural AV fistulas, with subsequent acute neurologic deterioration. A gradual but progressive neurologic deterioration is common. Three subcategories of intradural spinal AV fistulas have been recognized, with different treatment options appropriate for each. The simplest of these, the type IVa, features a single feeding vessel, often the artery of Adamkiewicz, with low flow through the arteriovenous shunt and moderate venous enlargement. Endovascular techniques are difficult with these lesions, due to the small size of feeding vessels. Surgical excision is therefore often mandated. Type IVb AV fistulas are intermediate in size, often with multiple feeding vessels, and more marked venous enlargement. Venous ectasia may develop at the site of shunting. Embolization in these lesions is easier, due to the increased size of feeding vessels. In cases of incomplete shunt obliteration with an endovascular approach, direct surgical excision may be necessary. The largest of the intradural AV fistulas are the type IVc, which feature giant, multipediculated fistulas, high blood flow, and large, tortous draining veins. Spinal ischemia may develop in these lesions secondary to vascular steal. Due to the size of these lesions, surgery is technically difficult and may jeopardize the spinal cord. Treatment is hence through combination of endovascular ablation, followed by surgical excision of retained elements.
Why do AVM’s occur?
It is unknown why AVM’s occur. They’re usually congenital, meaning someone is born with one. However, they usually are not hereditary. People probably do not inherit an AVM from their parents, and they probably will not pass an AVM on to their children.
AVM’s have also been known to be a result of an injury that did not heal properly but this is uncommon.
How common are AVM’s?
An AVM is estimated at around one in 100,000
Do AVM’s grow or change?
Most AVM’s do not grow or significantly change although the vessels involved may dilate. There are some reported cases of AVM’s shrinking or enlarging, but this may be due to clots in parts of an AVM causing it to shrink, or to redirect to adjacent blood vessels toward an AVM.
It is also true that the prolonged irregular oxygen distribution and/or pressure on the spinal cord can slowly increase nerve damage.
What causes an AVM to bleed?
An AVM contains abnormal and, therefore, “weakened” blood vessels that direct blood away from the normal tissues. These abnormal and weak blood vessels dilate over time and may eventually burst from high pressure of blood flow from the arteries causing bleeding.
What are the risks of having an AVM?
The biggest risk of an AVM is the possibility of a stroke. In order to have a stroke, the AVM must hemorrhage. The chance of an AVM bleed averages between 1 and 3 percent each year. Over a 15 year period, there is a 25% chance that an AVM will bleed causing damage and stroke. The more bleeds that occur, the higher the risks are that another bleed will follow at any time.
The average risk of a bleed over 10 years from diagnosis is approximately 30%. If the AVM shows signs of “wear & tear” such as aneurysms, it is more likely to bleed (like 50% or more). Over 30 years from diagnosis the risk of a bleed averages 66% but may be as high as 90%.
In the case of a Spinal AVM, the biggest risk is a stroke of the spinal cord. Depending on the location of the AVM it is almost most certainly going to cause some kind of neurological damage or even paralysis. If the AVM is high enough, and large enough, it may also go into the lower portion of the brain and cause an additional brain stroke. Each time a bleed occurs, normal tissue is damaged. This results in a loss of normal function, which may be temporary or permanent.
In the case of a brain stroke, there is a 10-15% chance of death and a 20-30% chance of permanent brain damage.
What should sufferers of an AVM avoid?
If you have an active AVM in your body, no matter where it may be… you should avoid straining… try not to lift, push or pull anything more then what feels comfortable to you. Do not push yourself. Try to keep your blood pressure from reaching high levels. Avoid smoking .(Smoking will raise your blood pressure, and weaken your veins over time and could increase the risk of a bleed.)
Avoid any medications or medicines that will thin your blood or increase your heart rate/blood pressure. Anything of this sort could increase your risk of a bleed and also make a bleed much worse should you have one.
If at all possible, keep your stress levels as low as possible.
How are AVM’s diagnosed?
Most AVM’s go undiagnosed until a bleed occurs. Some AVM’s are found incidentally, meaning they’re found during a test for some other medical condition. Most people find their AVM’s between the ages of 20 and 50.. and if they’re not found by 50, they will usually go unnoticed for the remainder of the persons life.
The best ways to determine the existence of an AVM is by either a CT scan or an MRI scan. These tests are very good at detecting AVM’s. They also provide information about the location and size of the AVM and whether it may have bled.
What treatments are available for an AVM?
Well first of all, it must be determined if the AVM can be treated at all. Some AVM’s are untreatable. In general, an AVM may be considered for treatment if it has bled, if it is an area that can be easily treated and if it is not too large.
The best treatment depends upon what type it is, the symptoms it may be causing and its location and size.
There are currently only 3 real treatments available for AVM’s that may lead to a resolution. All of which are invasive and dangerous.
1. Surgery – If an AVM has bled and/or is in an area that can be easily operated upon, then surgical removal may be recommended.
2. Stereotactic radiosurgery – An AVM that is not too large, but is in an area that is difficult to reach by regular surgery, may be treated by performing stereotactic radiosurgery. Focused-beam high energy sources are concentrated on the AVM to produce direct damage to the vessels that will cause a scar and allow the AVM to “clot off.”
3. Interventional neuroradiology/endovascular neurosurgery – It may be possible to treat all or part of the AVM by placing a small tube (catheter) inside the blood vessels that supply the AVM and blocking off the abnormal blood vessels with a variety of different materials. These include liquid tissue adhesives (glues), micro-coils, particles and other materials used to stop blood flowing to the AVM.
When an AVM is completely taken out, the possibility of any further bleeding should be eliminated.
How do I get help/support?
The first and most important way to get help and or support is to talk to your doctor. Make sure they know what you have and how serious it is. Make sure that all your questions are answered.
Your doctor may be able to provide you with a Social Worker should you need that kind of help as well.
If you’re aware of your options and are looking for support groups, donations and maybe some other people to talk to about AVM’s, then there are many websites available for this sort of thing.
Share your story with as many people and places as possible. Help yourself by helping others.
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