Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Sunday, March 27, 2011

GIANT sigh of relief!

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!

My experience has been that cavernous angiomas are virtually unknown in the neurological community outside of a few really fantastic experts. This is one of the greatest obstacles in finding good treatment/care for this condition. Since my first diagnosis in Aug 2009, I have received so much wrong, dangerous, unreliable, and scary advise from countless doctors with a "neuro" as a part of their title whether it has been a neurologist, neurosurgeon, neuro-ophthalmologist, etc...you get the point. That's why it's so important to be an advocate for yourself if you carry this or any other serious medical diagnosis. For now...., I'm in the clear...and we like it that way! This latest scare is yet another reminder to always cherish those you love and to be thankful for everyday because everyday is such a gift and blessing.


  1. Elizabeth - I am delighted with your news. I am the Canadian that is going to Toronto for a second craniotomy. My brainstem cavernoma was NOT completely removed; the tiny portion did act up two and a half years later. I learned the news on May 15/10 and had another bleed on May 30/10. It looks like I will have my operation in May. My surgeon is a skull base specialist and is probably the best in Canada. I sent my MRI to Dr. Spetzler; he advised me to have the surgery. I am confident that the results will be positive; I just have to prepare mentally for the second procedure. Blessings from our home to yours. My son is 15 - they grow up ever so fast! Seize the day and continue your advocacy. Cheers. Marian

    1. Hi, I am looking for a neurosurgeon in a Toronto and was wondering if you could recommend a good one?

  2. Elizabeth,
    I am so very relieved and happy for you and can relate with your experience, thus I always send my films to Dr. Steinberg @ Stanford for review. My local neurologists/radiologists have overlooked bleeds on my films repeatedly, so I know how frustrating, scary and exhausting it is to have to be your own advocate.

  3. Such good news! Im so glad to hear that bloody thing is gone! Sorry you had to go through the scare tho....


  4. Hi Elizabeth,
    I am in Australia and was sure there must be others out there with this condition, who were grateful for what they still can do, instead of concentrating on what they can't.
    Your attitude is like a breath of fresh air and I just wanted to wish you all the very best as you continue on your path to recovery.
    Kind regards - Karen. :)

  5. Elizabeth!! What wonderful news! The angioma community really needed a win - I'm so happy that you and Adelle are now able to go ON with your lives <3<3<3

  6. My fiancé at 40yrs old had a cavernous malformation in 2011
    It affected the back of the brain he has problems with double vision,balance, numbness left side,right hand muscle spasms unable to write unable to run was a police officer for 16 years any advice for recovery please help pneumann07@yahoo.com

  7. Hi there I am 27 and I was just diagnosed (thanks to a random seizure) with a cavernous angioma in my left frontal lobe. It isnt familial I am just a lucky lottery winner. I am going to Emory in Atlanta for the surgery to remove it and I am very optimistic. I liked your blog because it gave me some piece of mind that the piece of my mind that is causing my headaches, memory loss and random seizures can be taken care of and moved on from.:)

  8. Golf girl,
    I'm sorry, I do not know of any surgeons in Canada. Do you have a cavernous angioma? If so, the Canadian version of AA, is headed by Henk and he is very knowledgeable with all things rt angiomas and Canadian doctors and such. Reach out to him and he will help, I'm sure! You can find him on AA or the Canadian AA.

  9. Hi , I am diagnosed with cavernous angioma in my brain close to right occipital lobe, First it was bleeded in 2011 and after that now .I am scared of Surgery. Can anybody recommend a good surgeon in Greater Toronto Area who has expertise in removing cavernoma.