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Two Year Nightmare Over
Thu, 02/03/2005 - 08:02Topic: Family & Friends
Hello all,First let me tell you a bit of history about my son Jordan. He was diagnosed after his first seizure two years ago, at 12 yrs old. We've seen no control, and his personality and health has slowly declined. What was once my gifted, intelligent pre teenager has now turned into someone I don't even know. After several normal MRI's, we were urged by our family practitioner to look into surgery, which we ended up being referred elsewhere for. New hospital received all this records, mri's and eeg's.Well, the "normal" MRI's were not normal at all..they were read wrong! Jordan has a tiny, slow growing, benign brain tumor that the new neuro believes could have been there since birth, and says is very "common". He has seen hundreds of this same tumor in the same place..all very responsive to surgery.So there you go, get a second opinion! I can't even imagine the damage his body has gone through, when it didn't have to. Surgery process will start in March, and we're very hopeful that this is his chance to get his life back. He was previously diagnosed with simple partial w/secondary generalization..right temporal lobe focus. Arm twitches, deja vu, face twitches etc. If this sounds anything like your child, I urge you to look further.Lori Peters
Comments
RE: RE: Two Year Nightmare Over
Submitted by zilla on Thu, 2005-02-03 - 08:02
Hi Kim,We were referred to a hospital in Madison, Wi. who work in conjunction with our more local hospital (in La Crosse).We live in a rather remote area and the main hospital we have been going to doesn't perform brain surgery for epilepsy, so we had to be referred to a larger facility that could provide all the tests needed to pursue it. Jordan has had a psycho-neurological evaluation, a PET scan, another MRI and is now going through a 3 day video EEG as we speak.I don't know if this helps anyone except to urge others to pursue a second opinion, at least somewhere where they have an actual MRI team. His old MRI's were read by his pediatric neurologist, where as Madison has their own team of specialists to read them.I always knew there was something they were missing...so just go with your gut if you feel something is off.Lori
RE: Two Year Nightmare Over
Submitted by Kimberly on Thu, 2005-02-03 - 01:39
Hi!My son's case does not sound exactly like yours except for the fact that the doctors have told us Erik's MRI looks normal. Could you tell me who you went to for a second opinion? I live in Virginia by the way.Thanks,Kim