I'm 32 years old. It was about a month ago that my husband took me to the ER because I was talking really strange (and had 2 seizures during the night which he didn't know what one looked like, he thought I was just choking in my sleep, I had another grand mal seizure at the hospital), I could understand others but could not express myself. I had a hemorrhage in my brain where my motor skills are. I was in the hospital for a week. I don't remember any of this. Next week I am supposed to have the MRI done to determine what is going on. The surgeon believes it to be a cavernous malformation and very small chance it is a tumor. With what I've read it seems most likely the cavernous malformation as the surgeon said. I'm really scared and so is my husband. This just came totally out of the blue, no signs of anything wrong before, other than my head hurt really bad before I went to bed the night of the seizures. I saw this site and thought maybe some people here could tell me more about cavernous malformations and maybe the possible things that I am going to have to look forward to.
There is a sub- group you may wish to join…http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
You came to the right place :)
I too, was diagnosed with a Cavernous Malformation last year after i developed symptoms. I was always active and healthy. My Cavernous Malformation was located in the brain stem (the nervous system) and like you, I had seizures, problems with speech, dizziness, very strong headaches out of the blue, and many other symptoms.
When I first found out about my CavMal, I was told it was inoperable. I had to stop working because I had simple partial seizures every 10 mins or so, was often too dizzy to function and just miserable. If your CavMal is in your nervous system, chances are you are going to be told its inoperable. Please do not lose hope... after months of my condition getting worse, I found a Dr. that specialize in operating in the brainstem and had a successful resection on March 1. Of course it was not easy is still is not, but I am alive and I am blessed to never worry about about this... You may not be told what I was told, and I am sorry if this scares you, but i actually want to bring you hope and avoid you the helplessness that comes to hearing that. There are quite a few members here who had a craniotomy near or in the brainstem. It may not be where yours is located either, but I guess I just want to give you hope in case you are told something that makes you lose it.... Do please ask your Neurosurgeons.
I opened a blog the month I was diagnosed, maybe if you go read in the archive :it was july 2012" you will relate and also the following months what i went thru. I know we are all different, but it was so valuable to me to find people that had the same condition as me... which i didnt find until 2 weeks before my surgery, but it brought me so much comfort. Please do not hesitate to contact me, write etc. my journey blog is www.windlessdandelionwishes.blogspot.com
My name is LIsa and I am 35.
Bluereef, Welcome! This group has meant so much to me. If you have ever heard someone say, "I know just how you feel," this is one place where we really do know "just how you feel," or close to it, anyway. Please post questions, any questions, and you will most often get responses from those who have lived with cavernous malformations for varying amounts of time. It is important for you to know that you and your spouse are not alone. Additionally, some of the time you will get recommendations of neurolgists and neurosurgeons to pursue. Finding the right doctor or doctors is critical. Don't short-change yourself when it comes to the quality of medical care. It is your brain, after all. George
Welcome bluereef. I'm so glad dandelionwishes commented here too. I was going to recommend you look her up. Please let us know if you have any questions.
I know how you feel - 25 yrs ago @ the age of 28, I experienced my first-time generalized seizure from a CM bleed in my left parietal lobe.
While I don't remember the actual seizure, I remember afterwards the confusion & fear I felt. Immediately following the seizure, I knew what I wanted to say, but the words came out as jibberish & was so frustrated by that.
All the tests, CT, MRI & angiogram were terrifying as well - it was a whole new world for me.
In time, learning as much as you can & becoming your own advocate will become a necessity, as well as a 2nd nature in time.
Finding the very best neurosurgeon & neurologist who routinely reviews, manages & treats CMs is very important.
I've had excellent experience w/ Dr. Gary Steinberg http://med.stanford.edu/profiles/neurosurgery/researcher/Gary_Steinberg/ of Stanford http://stanfordhospital.org/clinicsmedServices/COE/neuro/VascularMalformations/cavernousMalformation.html & many years ago @ UCSF http://neurosurgery.ucsf.edu/index.php/cerebrovascular_disorders.html.
Best wishes to you & your husband.
I almost forgot to mention, if a CM is suspected or diagnosed, you'll need to avoid blood thinners, such as: Aspirin, Ibuprofen, Alleve, Vit. E, Omega supplements, Fish oil supplements & Sudafed, etc.
That is so good you are mentioning it! I know this since I saw Dr.Spetzler, but didnt before and Alleve is ALL i took when i had headaches!! I wonder if that is why i had bleeds closer and closer to each other. Anyway, its in the past now :)) SO important to be informed!!!
yeah, it's so easy to overlook the commonly-used OTC meds & supplements that carry potential bleeding risks for 'us.'
Many drs. unfortunately are unaware of potential bleed risks in the many Rx's they freely write. So before I have an Rx filled, I ALWAYS do my homework beforehand.
Always best to play it safe & be our own advocates! :)
I also have cavernous malformations. I have 3 total, with 2 that bleed. One is still actively bleeding in my brainstem. The issue I have had since 2011 is finding a good Neurosurgeon. Thanks to Patti and Lisa, I have been directed to some awesome DR's that specialize in cavernous malformations. I am on my journey to find a surgeon to get these things out of my head! :) This is definitely a very scary experience, and a journey I'm sharing with my 8 year old daughter, and now my mother that has moved in with us to take care of me and my daughter. I have several neurological deficits currently. Feel free to look at my profile...I've tried to list it all on there. Barbara listed the cavernous malformation support network....we're all part of that as well. This is a great place to be, and a second home. So many members have reached out to me and led me through many scary times, and I couldn't ask for better friends. We're so glad you're here! :)
I'm very glad you mentioned that. It has taken me trial and error to realize I couldn't take all of that. All I take now for headaches is Ibuprofen. I have also learned a very valuable leasson in keeping my blood pressure down. :)