24 year old female with Cavernous Angioma

[DanniLynn]

I was diagnosed with a cavernous angioma late this March, I had a hemorrhage when I was in Maryland.  I went to a hospital in Washington DC, had a cat scan, and mri, and an angiogram. I only saw a neuro surgeon for about 20 minutes before I was released.
Making appointments to talk to the neurosurgeon has left me very frustrated and confused and still have questions that are going unanswered. I would just like to have a few questions answered if its possible I'm also willing to send/post pictures of my scans if it would help someone get a better idea of my condition.

1. This first question revolves around medicine mostly. I know to avoid any blood thinners, are there any other prescriptions, over the counter, pain (I've been told to avoid aspirin and ibuprofen), herbal, or vitamin medications I should avoid, or take that would potentially help?   When I was in the hospital I was taken off my birth control medication, which was the low dose combination birth control pill YAZ, if I can't use hormone birth control (estrogen or progesterone)  anymore, what options do I have? What about emergency contraception like the Plan B pill or Mifepristone? Also, Do I need to be taking a seizure medication even though I don't have a history of seizures?

2. Are there any "recreational" activities that I should avoid such as smoking or drinking?

[MAMIof03]

A related discussion, Cavernous Angioma was started.

[Debbielou]

Hi read your comments to DanniLynn recently, want to re-assure you that I also have this condition and have a 7 month year old son, sadly I didnt have a natural birth due to the possibility of raised blood pressure, but the hospital staff were very supportive and my little wonder is a bouncing healthy little boy.  Good Luck

[LPNGirl07]

I have 2 cavernous angiomas in the left front lobe of the brain, that bled at some point in my life. I am a 28 year old female. I've had them quite a while according to the neuro surgeon I seen at the Cleveland clinic about them 3 years ago. Mine are supposedly silent at the moment. I am 25 1/2 weeks pregnant w/ our 2nd child... Having the angiomas makes me a little nervous when I think about labor & delivery. I had my first child vaginally before I knew about the angiomas. They were discovered accidentally on a routine MRI after I have some neurological symptoms after the birth of my first child. I have never had a seizure w/ them so far, and don't want to. Just thought I'd post to let you know u aren't alone. There is a great website: angiomaalliance.org (I think that is correct) that is for people who suffer w/ angiomas. Good luck!

[DanniLynn]

Thanks for taking your time to answer my question, is been hard getting a chance to see a neuro surgeon, with the massive run around you get with insurance and hospitals and dr.'s offices. The information you provided was very useful and very helpful. If any other doctors scan over this, id like an answer or advice about my birth control question, or if anyone on this forum may know more then i do? Hopefully I'll get to see a doctor soon!

Thanks :)

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

It sounds like you have a cavernous angioma. I would be happy to answer your questions, but I kindly ask you not to post your imaging for us to view, as the purpose of this forum is to provide patients with information not to review imaging or give therapeutic advice.

Regarding your question about medications, as you mentioned, blood thinners like aspirin, advil (ibuprofen), aleve (naproxen), should be avoided. Unfortunately, a lot of the herbal, over the counter "natural" products being touted today can thin the blood (without really being beneficial). These include, but are not limited to, fish oil and ginkgo balboa. My advice to you is to always read the label and ask your primary doctor about any medication before taking it.

Regarding your recreational activity limitation, I will tell you that you shouldn't smoke even if you didn't have a cavernous angioma! But in someone with a cavernous angioma, there is even more reason not to smoke. While I do not think there is evidence that smoking increasing bleeding with these vascular malformations, smoking does increase the risk of other types of bleeding in the brain like subarachnoid hemorrhage. Also, if you were to go to surgery, your surgical risks in general are higher if you smoke. I think drinking in moderation would not be harmful, but moderation really is the key. I have to emphasize that use of cocaine and other recreational drugs should be avoided. Cocaine can increase the risk of hemorrhage in the brain, it can increase your blood pressure, everything you want to avoid when you have a cavernous malformation. Other recreational drugs such as ecstacy and amphetamines can have similar dangers.

We are more than happy to answer any questions you have, but I would like to refer you to another great website for patients with cavernous angiomas: http://www.angiomaalliance.org/

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck