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.

Progress to report

Let me just start by saying, "Life is good!! Really good."I continue to be grateful for how good I'm doing especially considering where we were almost three months ago. We are thankful for all that I can do and continue to work on all the things I can't do yet...or can't do well yet. I have been in rehab for just over a month and for the most part it is going well. I am meeting/exceeding lots of goals and that is something that makes me very happy, especially because my #1 goal is to take care of Jack. I had missed him so much while I was in the hospital and even at home when I wasn't strong enough to pick him up. Well, I can pick him up now and I have been able to do so for about two weeks...huge accomplishment!!! and I feel like I'm getting my boy back. (tears of joy!!!) I got to take care of him by myself last Tuesday afternoon for the first time since surgery/stroke and it was like bliss. I got to feel "normal" again. Thrilling! He's also starting to know that I can do more too. He'll ask me to pick him up now, but he knows to be gentle and to help me when I ask him. He says, "Mama has an owwe on her head", and then he taps my head gently if I'm holding him. It's so precious. Sometimes when I'm carrying him I will ask him to help me by holding on and he does...sometimes I just ask him because it's so cute how he wants to help me and I love his tight squeezes. :) A few nights ago was another first. John was reading him books and putting him to bed, then he was rocking him like we always do. Normally Jack will request a certain song for you to sing to him and John thought he was requesting a new song, but it turned out he was saying, "I NEED Mama". Of course, I couldn't be any happier to fulfill his request until I figured out he was just playing us for more delay time. As soon as I got in his room to rock him and John left the room he said," I NEED Dada." My ego was instantly deflated ;)  So the short story is that I'm doing lots more with Jack and I'm super happy about it. As for rehab, I said for the "most part" it's going well and by that I mean occupational therapy and physical therapy are going well. Speech therapy...not so much. Speech therapy is the one area that has the least objective criteria, so maybe it's also more difficult to note progress, but according to John and myself there is much progress to be made. While I have made huge strides since surgery, my speech is still slightly slurred and somewhat monotone. We were working on what's called prosody and intonation in rehab in Phoenix, but they have not focused on that in this new place. I'm not happy about that because I feel like that is where your personality comes through in your speech, and I want to still be me once I'm recovered. I used to be pretty animated (maybe too much) and now it's the opposite, but according to the therapist, working on those issues are not priorities because they are not considered medical necessities. I have a ton of other deficits that fall into the speech therapist's realm too like information processing, focusing attention, multitasking, short term memory issues, and the list goes on. So to me speech therapy is really important, and I was pretty upset when she told me last week that she was going to reduce my time spent on speech therapy. In my opinion, I need more time in speech therapy not less!! John and I had a meeting with them last week to discuss this very issue and we didn't feel good after the meeting, so I'm not sure if I'm going to have to find a new rehab or maybe just speech therapy somewhere else. What I do know is that I'm not giving up on making progress on any of my deficits yet!! We'll see how it turns out, because I really don't want to start over with a new rehab altogether...but I'm not ruling it out either. Transportation (since I can't drive) has been a pretty big issue too so it just makes more sense to have all the therapies at the same place ideally. We'll work it out one way or another and we won't settle for any thing less than effective thorough therapy although at the end of the day, I'm just happy to be alive and as always, we continue to be be thankful for everyday!!