Cavernous angioma or Arteriovenous malformation

[Anse]

Yesterday I received information that my MRI diagnosed left temporal lobe cavernous angioma or AVM, which has already hemorraghed. Severe migraine like headaches, blurred vision,  mostly present on right side of head, possibly petit mal seizures, somedays I just can't seem to get going and I seem to be more forgetful (but this could be perimenopause)led me to my GP who ordered CT, then MRI.  While waiting for the neurologist appt, I am nervous about actively exercising, traveling, medicatin. My GP is downplaying the situation, says I can do Karate, but I am anxious, still experiencing the headaches and want more information, don't even know what to take for my headaches.  Should I curtail activites, cancel trips, get to a neurologist immediately, what information can I ask for re: MRI to gain more complete info? I am supposed to travel overseas in July.  I am a 50 year old woman, college professor, otherwise healthy, but need to know how this will affect my life and my family. What do you recommend?  Have others had experience with this type of diagnosis?

[CCF-Neuro-M.D.-CS]

AVM's have a higher risk of hemorrhage then cavernous angioma. Without evaluating you and seeing your films, I can not provide clinical advice. However, limiting your physical acitivities until you see a neurologist or neurosurgeon would be reasonable. I would recommend seeing either a neurologist who specializes in stroke, or a neurosurgeon who specializes in vascular abnormalities. Either condition can result in headaches, seizures, and hemorrhage. A MR angiogram should be useful to distinguish the two. Otherwise a CT angiogram or a conventional angiogram may need to be performed. The specialist should be able to review the films and make recommendations. Good luck.

[090308health]

Hi, I just read your post and know what you`re going through. I posted a question below on the same thing. I`m a 24 yr old female who was diagnosed with a cavernous angioma on the left side of my head - not sure what part of brain yet though. After having my daughter in 2002, I started having neurological problems (sensory type stuff). After seeing several neurologists, I finally found one that said he found a CA on my MRI. I had an MRA yesterday to look at it more. The last time I talked to my neurologist, he said that he thought mine was benign and wasn`t doing anything, but we`d talk more at next visit after MRA. He said it was just an incidental finding on the MRI. The radiographer said my MRA looked ok yesterday, so I`m curious to know if mine has bled or not also. My neurologist didn`t say at last visit, and I didn`t ask because I didn`t know enough about these things at last visit to know what to ask him. I`m nervousily awaiting my next visit too. I have a 21 month old daughter, am a wife, and am a college student. I`m scared this thing may destroy my life.... email me if you like. ***@**** good luck! It`s nice to know that I`m not alone. However, I don`t wish this kind of thing on anyone.

[090308health]

By the way, I was just diagnosed a couple of weeks ago. Forgot to say that in last post....

[Anse]

Thanks for responding.  I wish you all the best.  Do doctors respond to these postings or is it just for those of us willing to share our feelings re: this info?

[090308health]

Yes the doctor will respond. Goto: www.angiomaalliance.org This is a great webpage w/ a forum for people like us! Oh, I also emailed you back at your email address. Take care...

[Dar2004]

Hi guys...I just wanted to let you know there are others out there with the same problem :0) Unlike you guys I have know about this problem for 15 years and I am still here !!!! I thought it would make you feel better... I have a cavernous malformation...or angioma...or hemangioma...I have been told all three different words in the past 15 years. Anyway in my Left temp lobe...It has had leaked..on my mri it shows dry blood..thats how we know it leaked... we dont know if the leaking is still active or not...I get it checked now and then..I have had MRA, angiograms done..eeg testing you name it they done it... in some cases these can be removed,, I am in the process of looking into getting this removed.. I am 37 years old..female..I had 3 children... I did have a gran mal when I waspregnant with my first thats how we found out about this problem....but it didnt kill me...the reason i am getting so detailed is I was hoping it would make you guys feel better...I know I was a mess when i found out about this ....I am stil on medicine,,,, I still have complex partial seizures... they were under control for many years ....then all of a sudden they just acted up again..I hope I helped out a little bit.... I am still learning about this problem after so many years....hey there is another board to check out also on web md... I learned alot on there also...the epilepsy support group... you might get some info to help you ... take care :0)

[090308health]

Thanks... I hope you are able to get yours taken out successfully if you ever want it removed. I don`t know much about mine yet. I have to ask the doctors some more questions at next visit. All I was told at my last visit was that I had a benign cavernous angioma that wasn`t dangerous. It was nice to know it wasn`t dangerous, but I don`t like having anything in my brain that shouldn`t be there! It`s nice having support from others w/ this. Take care, I`ll keep you all posted.

[Dar2004]

Thank you too :o)  Just so you know I checked out that site angioma alliance also.. it looks pretty interesting..I could see I will be learning alot..Like I said I have known about this problem for 15 years and never knew all the facts or correct answers..I dont think we can ever know enough...At least we know it isnt life threating !!!!Glad to hear yours is benign...And yes sometimes pregnancys can bring on seizures and leakages that was a big concern when I had my children..But I did have 2 more children after I found out about this malformation and did not have a problem.. so dont be discouraged...There is so much to learn about this ...It is amazing...Feel good !!! There are many of us out there :o)

[Anse]

Hi and thanks for responding.  It does make me feel better to hear from others, though I am sorry to hear that anyone else is dealing with this as I am.  Still waiting to get my appointment with the neurosurgeon, waiting is never easy.  Do either of you or anyone else know of safety of different medications for headache control.   Is aspirin dangerous?  I guess that I am very lucky, getting to 50, having 2 succesful pregancies and really have minimal symptoms compared to some others.  Thanks for other website info.  

anse

[090308health]

I`m not sure on medications yet either. I have to ask my doctor a lot about medications. I have high blood pressure and am on BP meds. Plus I take birth control pills, so I have to get all the facts on that as well. I read somewhere that aspirin isn`t a good idea w/ a CA. But I`m not sure how valid that statement is. Definitely just talk to your doctor about it. Thanks to you both for support. :) This thing isn`t bothering me at all now that I know I`m not alone. Imagine how we`d feel if we weren`t lucky to have internet... I`d crack up!

[Lee Ann]

Both of my siblings have multiple cavernous angiomas; a sister, age 51 (diagnosed at 41) and brother, age 48.  



My sister is doing fine after 10 years when she had visual distortions and sensory changes in her leg. Subsequent MRI's have shown no further bleeding (hooray!).



My brother was diagnosed less than a year ago and had seizures that are now controlled by medicine.



I am not sure if I want to have an MRI (I have no symptoms, but I'm 45 and have the genetics going against me).  The question is...what would I do with the information?



My prayers go out to all individuals and families dealing with this sneaky (and little known) condition.



Lee Ann