We Finally Got Some Answers!

Hello everyone! I want to say thank you for all your support and prayers. On friday the 4th I saw my dr in Nashville. They told me that I didnt have “true avm’s”. The neurologist and neurosurgeons that i have seen before this dr told me that i did have avms and the initial avm are on all my paper work.So when we got there friday they were confused because avm was written on all my papers. They wanted to give us the right information .The one behind my right eye is a CCF(CCFistula). And that I would in fact have a chance to get to the hospital. There was a nurse that worked in their offices temporarily and she told me that if either one bled that i would have a stroke and that i probably wouldnt make it to Nashville in time. The dr said that she didnt know what she was talking about. they were very upset and now understood why my wife and i called them so much. They spent about 3 hours explaining things in detail. They brought in diagrams, a plastic brain (so they could show exactly where things were) and lots of reading material. They way they found out that they were not true avms was with a cerebrial angiogram. Thats was the only way they could tell. The other neuro’s couldnt tell what they were because on the mri, mra’s and ct’s it will show avms and bleds but not what type of avm. They just told us avm. When we questioned the drs about why no procedures were done he told us that gamma knife, cyberknife, and radition couldnt be used on mine because my problem is my veins not my arteries. Dr. mericle doesnt use these things on veins. The reason i thought i had avms was because he turned me back over to the neurologist and he still assumed that i had avm’s. The neurosurgeon said that he would turn me back over neurologist because i didnt need anything done at the time. he wanted me to go to the neurologist and if i had any problems the neurologist would send me back to him (Dr. Mericle) so we were well misinformed. Its still very serious and dangerous and they couldnt say that this couldnt be life threatening but we can see some light at the end of the tunnell. The dr said that the one on the left side of my brain is a cavernous malformation and from what has been going on with me they think it has bled. They did an mri and an mri with contrast to see. If it has they said they would call set up a time for me to come in for surgery to remove it, because it has bled twice before. We should know tomorrow (Tuesday). Please keep your fingers crossed and keep us in your prayers. We appreciate all of you so much! Take care, Avery

so glad you have finally got some answers…keep positive…will be praying for you and sending lots of positive energies your way…hang in there and keep us posted xxx

Hi Avery,

Glad things have gotten cleared up for you and hope that you get positive news today.


keep us posted xxxx

Glad you got some straight answers finally, I know how frustrating it is to get the run around from a bunch of doctors. Will be praying for you.

Glad to hear that things have been cleared up and you can breath a sigh of some relief. everything will work out. You and your wife are in my prayers!

Avery, click on members and do an advanced search. I think you can find others with cavernous malformation is you are interested. Great news!