Hi everyone. Looking for some advice, hoping someone out there may have some insite...
History/new symptoms: May 2010 had embolization for DAVF(right side of brain) due to previous issues such as whole left side going numb on several occassions and the noise in the ear. They glued off 80% and did radiation on remaining. Good for 10 months. In March 2011 had enother episode of whole left side numbness but this time many other complications - ie. walking to left side, left foot not working for short periods of time, etc. After about 2 weeks of this I started having these episodes of what I call head waves in which I would zone out a bit but could talk through them but would be crazy tired afterwards. This come and went for a few months. Then in May they started happening every few days with the tireness and hazy/foggy feeling in my head lasting for 2-3 days. Saw the neurosurgeon in April - he thinks maybe seizures and is sending me to a neurologist who specializes in seizures - appointment on August 2nd. Had an EEG - irregular brain waves but not conclusive to seizures. Back to neurosurgeon last week for a follow-up. Now he is wondering if the DAVF is regrowing. Now I have to wait for another angiogram. I haven't been working for the last 3 weeks and the Dr. has taken me off work due to the increase number of episodes(sometimes 3-4 in a 3 day span) followed by 3-4 days of recovery time in which I am so tired and walk around in a fog. Currently have about 1/2 to 1 day a week in which I feel like myself again.
Has anyone else out here had anything like this??? Any insite would be wonderful!!!!!
Just so frustrated - I am at the point now where when the episodes start, I feel panic, because I don't know how long I am going to feel 'out of it'. Everyone jokes that it must be nice to have the summer off but I just want to feel well again! I am missing life - IMost days I sleep all night and the 3-6 hours during the day... Trying to stay possitive and have been, but sometimes the waiting and the unknown just gets to me....
You sound as if you journey is very difficult. As for the daytime sleeping, I suggest you accept that as your new normal, at least for now, and PLAN to get 3-6 hours of sleep in the day in addition to night. Chari tried to push herself in her brain surgery recovery, and she always paid for it in fatigue. Your body is talking to you (grin). LISTEN and get plenty of sleep.
Our experience has been the neurosurgeons are the wizards of cutting, but don't know or don't handle the after-issues, until it might require more surgery. We found our neurologists were the drivers, handling all the medication issues, and processing side effects to figure out what the next steps should be.
Ron is right about the role of the neurologists. They're the ones you want making the calls, then they will send you to neurosurgery if it is determined that you do indeed need surgery. You might try calling to explain to the neurologist what's happening and asking to get on a "cancel" list, especially with the symptoms you're having.
For now, it's time to just take things a day at a time. Get the extra sleep you need. Get through today. Worry about tomorrow when it gets here. It's very easy to want your normal life back -- heck, I will admit to saying the same thing many many times. After you get through this, you'll be able to figure out what your new "normal" is and adapt accordingly.
These could indeed be partial seizures; seizure activity doesn't always show up on an EEG, unless they're monitoring you during an actual seizure. If they are seizures, anti-seizure meds can make a big difference. If you're already on seizure meds, there are so many different ones a specialist can suggest for you to try.
So it's good that you're seeing a specialist. Maybe you can try to move the appointment up...ask the office to call you if they have a cancellation? You probably want to figure out what's normal vs. what's treatable as soon as you can.