Hi, I'm a 29 year old man who for the past two years have been living with angiomas. I had a 25mm one removed from my brain in April 2006 which turned out to be a great success but whilst having the surgery my specialist found another one in my spine.
After only a couple of weeks of recovery i was back on the operating table again for a massive lemonectomy, the surgery turned out to be quite difficult as my doctor was afraid of damaging my spinal function, only a portion of the angioma could be removed.
After some time i began to recover nicely but to my disappointment the symptoms returned in my brain and have been told i now require more surgery to fix another angioma.
Have there ever been any cases of someone having three separate angiomas in a space of two years.
Its beginning to destroy my life style and i am petrified of going back for another crainiotomy, will this be the last operation or will i have ongoing problems with angiomas showing up in other parts of my body?
Sorry to hear about your problem: Cavernous malformations are groups of abnormal, tiny blood vessels and larger, stretched-out, thin-walled blood vessels filled with blood. Viewed under a microscope, cavernous malformations appear to be composed of fairly large blood-filled "caverns."
These blood vessel malformations may occur in the brain, spinal cord, covering of the brain (dura), or in the nerves of the skull. Cavernous malformations range in size from less than one-quarter inch to the size of a small orange. They occur equally in men and women and have been found in people of almost all ages.
Cavernous malformations tend to grow because of repeated small hemorrhages, or leaking of blood around the abnormal tissue. During surgery, they are usually very distinct from the surrounding normal brain and resemble a mass composed of an old blood clot. There is no normal brain tissue found within these lesions because they tend to push the normal brain tissue out of the way rather than bring it into the malformation.
Although rare, cavernous malformations may run in some families. They seem to occur more frequently in Hispanic people. People are not born with them; they develop over a person's lifetime. They are extremely rare in children, but have developed after radiation therapy in children and adults and following surgical biopsy for other brain lesions.
You may want to look into the follow resource:
107 Quaker Meeting House Road
Williamsburg, VA 23188
Often time treatment is based on symptoms and just because something is found does not mean you need surgery. The treatment of choice is usually surgical but some centers (we have not been one of them) have used radiosurgery for CA. Vascular malformations can also be found in other parts of the body. You should be followed by a vascular neurosurgeon familiar with this disease. I wish you the best with this difficult problems. GS
Sorry to hear about your situation. It sounds like you've been through so much already. I was just curious as to what symptoms you were experiencing that led you to this diagnosis. Was it reoccuring headaches, dizziness or other? Also, what tests were performed that confirmed the cavernous hemangioma? Was it CT scan, MRI scan, etc?
I do have alot of constant headaches, they never really go away. Also very severe shakiness in right arm & hand. I did have CT scans but was thought to be a contusion of the brain. It wasn't until I suffered a massive seizure that an MRI was performed & the angioma was discovered. The spinal angioma was discovered after having a angiogram prior to craniotomy.
Cavernous angiomas are usually benign and may not need to be removed unless causing intractable symptoms: headaches or frequent bleeds. Seizures, although unfortunate, can be easily treated. Talk to a neurologist who may want to treat these more conservatively instead of jumping into surgery.
Have you visited the website (www.angiomaalliance.org) for the Angioma Alliance? It is a non-profit international voluntary health organization created by people affected by cavernous angioma (cerebral cavernous malformations). The website provides, among many other things, a wealth of information about the illness with in-depth articles on topics of special interest and updates on research findings. Best of luck.
I highly recommend the Angioma Alliance also. I have been on both sides of the deal. When my szs started there was no one to talk to. They were considered very rare (not true). I have 7 or 8 in my brain, and a huge patch of port wine stains on my behind. I had brain surgery several yrs ago, and meds are keeping the szs mostly under control. I'm glad that I haven't needed a 2nd surgery. (although two are growing again). The thing I find comforting is knowing that this is not malignant cancer! It's just having to deal with the little bleeds that may start to give us trouble. (I have my dad to thank for this, which all 4 of his kids!) It's great that we now have others to unload on, and maybe feel a bit better. Best to you:)
I was just reading throught the forum and thought I would ask a question or two. I have had headaches for the last 1-2 months on the right side of my head, went to my primary DR, had an MRI and a few abnormalities were found. I go to the neurologist next week and am a bit nervous. The MRI report said that I had periventricular hypertensities in the right white matter, low-signal lesions in the white matter and hemosiderin. It said this could indicate and small cavernous malformation. I suppose the question(s) I have are, should I be concerned about the periven. hypertensities and the lesions? Also, for the cavernous malformations, if they choose to do surgery, do they do it based on size and/or headaches?
Im a 29year old female who has just been told she has a third Cavernous Haemangioma. I relate to 'petrified' both same age and sick to death of these things ruining our lives.. I had my first when I was 4and a half and my 2nd wasnt until 2005. I asked for a MRI in my recent check-up and they found a small malformation in my frontal lobe (inferior, temporal). The good thing is it is in a location where surgery shouldnt be too much of a drama (I really feel for those who have them on places difficult to get to), although I am wanting to know whether there is any way I can prevent another one from occuring as I have alot of years ahead of me.. I hope, without more health issues.. Also my Aunty has just found out she has a Haemangioma also so obviously a genetic thing, do you know the chances of me passing this onto my offfspring, if I ever have children? Thanks, any feedback would be great..
Just want to say thanks to savhpj for mentioning the website angiomaalliance, its really helpful and has already answered many of my questions- yes i have a 50percent chance of passing the gene on... great website would recommend it to everyone connected with these malformations.. what doesnt kill us makes us stronger right??
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