Please help...seizures, momentary paralysis much too frequent

[pan1230]

3 years ago my brother was diagnosed with a cavernous angioma after symptoms manifested in the form of a seizure.  He was prescribed medication for the seizures and released never to be affected again until this spring (never affected in 3 years but not because of a strict adherence to the medication...he stopped taking it about a week after he was released 3 years ago).  A second cavernous angioma was found on the left frontal lobe (the first being found on the right frontal).  Now, some 3 months later, his seizures are occurring 2-4 times daily (or more) and he has been experiencing numbness and momentary paralysis on his right side.  He is an assistant district attorney for the state of Louisiana's 6th judicial district, 29 years of age, married for less than 6 months and now cannot work because of this.  He was placed on leave after having an 'episode' during court back in May.  Although reluctant, he has been to 4 different neurologists and the only diagnosis has been epilepsy caused by the angioma.  He's been suffering from burning sensations in his head which leads me to believe there is definitely bleeding.  His memory and speech have noticeably been affected on a full-time basis.  This past weekend (june 21-22) his condition worsened to the point he had to be transported to the emergency room via ambulance.  Here's the kicker...3 more neurologists reviewed an mri performed Sunday evening and could not find the problem.  During his stay, he lost the capacity to stand, walk, or even feed himself because of shaky hands which all are obviously a result of a sensory motor impediment.  These were all temporary lapses and he at least regained the ability to walk and talk today, 2 days later.  Is there anyone who has seen something similar or exactly like this?  If so, what do my family and I need to do?   We've taken him to a Dr. Nanda out of Shreveport, La who is touted to be the best.  He is one of the 3 who couldn't conclude anything from the most recent diagnosis.

[tazmanforever]

Although my symptomology was consistent with complications from the cyst, it was determined after my first surgery, in 2001, that the cyst was not the cause.

The truth of the matter is that, although medical science has come a long way in understanding parts of the brain, doctors are still baffled by how the brain operates.

For example, when I get a bad enough migraine, I seize.  The doctors never classified me as epileptic, but I have seized as many times as 15 in one day.  Afterwards, I am groggy and disoriented and in bed for the next 18-24 hours.  

The doctors are baffled by this and have told me that I am experiencing "pseudo-seizures" , which are simply my body's reaction to extreme pain.

The surgeries that I have had have ended up to be "shots in the dark" to help relieve some of the symptoms and haven't really been beneficial, but when your in pain, sometimes you'll try anything.

Medications that helped for a while were Topamax and Depakote.  Both had very little side effects, but controlled the seizures and helped me to function for quite some time.

My suggestion is to have your brother admitted to the hospital and monitored closely so that, in the event of an episode, he's hooked to machines that can tell the doctors where the problem is and what they might be able to do about it.  Most doctors will admit that this is the best way to diagnose your brother's symptoms.

[pan1230]

Thank you for your post.  I am going to do some research immediately on sub-arachnoid cysts and determine if the symptoms are a close match.  My brother's seizures are not turbulent as you indicated your's may be.  However, it's early yet and I'm more concerned about a condition that would render him disabled because I believe that would be a fate worse than death for him.  Is your condition controllable with medication?  Was or is surgery ever an option for you?  It's funny because what you're describing sounds like something my father has suffered from since about the age of 30.  He has always had severe migraine headaches and about 27 or so years ago he began blacking out.  You mentioned there are times you're more likely to seize.  Well, he can feel the blackout spells coming on a full 30 seconds to a minute before he actually blacks out.  When awakens, he's basically ill for the rest of the day.  Doesn't happen very often.  Also, it seems that sudden bursts of sounds and/or light trigger these episodes, I digress.  Thank you for your insight and I hope everything is well and continues so.  

[tazmanforever]

My heart goes out to you and your family.  I do not have any information on your brother's particular illness, except to say that I have a sub-arachnoid cyst in my brain and have severe symptomology very much like his and have since 2000.

The first thing I learned is that teaching hospitals and doctors are the best and most up-to-date.  I go to University of California in San Francisco Medical Center and have found their doctor's to be the most knowledgeable and helpful.

On the flipside, and this isn't meant as a barb to other doctors, I have been to general hospitals and neurologists and neurosurgeons that have misdiagnosed me and one did an extremely invasive VP Shunt surgery that was unnecessary.

This is a very frustrating procedure, but self-advocacy is the best means.  

There are times that I am more likely to seize and times that I am not.  My wife has requested that I wear a neck collar when I'm more prone to seize and also asked that I "stay put" so that if I do go down, I won't injure myself further.

I hope this helps and I'll keep you all in my prayers.