Could this also be related to Epilepsy? My neurologist has not given an explanation to the findings. My son also jerks a leg, arm and sometimes his whole one side of his body when sleeping. Around every 20-40 seconds on a bad night. His EEG's show spikes and waves even when medicated and those run around 8-10 a minute, which is down from the 15-20 before meds.
Thanks for your responses they will assist me in asking the right questions when we go to our new neurologist.
I am currently requesting a referral from my doctor to go to a new neurologist. I will request more detail on the MRI. My son does have headaches and does complain of back aches. I have had a hard time getting our current neurologist to explain the findings on my sons two MRIs. I will keep you up to date on what I find and am just searching for a explanation. My son also has a speech problem and learning problems. He was fine up to the last year. He has spikes and waves all the time on his EEG's coming from the front lobe, even when medicated. One other odd symptom is that he jerks throughout the night while sleeping. Every 20-40 seconds he will jerk his leg, arm or at time whole side of his body. I know he is not resting well. I have video taped the movements and the neurologist cannot give me an answer on what the movements are related to. It has been a very frustrating journey. I hope all is well with you and that you have a good prognosis. Thank you for responding to my posts.
Hi there,
I started having refractory seizures in 1995, when I was 15. In 1998, an "abnormality" --i.e. the brain tumor I've been referencing--was seen on an MRI, and continually misdiagnosed, even during my pre-surgical workup in 2007 at Mayo. Why it was continually misdiagnosed, I don't know. It was only the post operative pathology report which correctly diagnosed the tumor. Without doubt, this tumor was the initial cause of my refractory epilepsy (and also the cause of some strange secondary back pain I was experiencing at that time, around 1995-1996. Brain tumors can have strange additional symptoms, not just seizures and headaches, thus my initial question for you regarding any secondary symptoms your son may be experiencing)
Removing the tumor (grade II astrocytoma) was only part of the resection, as the focus of the surgery was of course helping me get better control of my epilepsy. SInce my seizures, at the time of my surgery, were originating from my hippocampus, a structure next to the tumor, I needed a larger resection, thus the temporal lobectomy.
Do you plan on getting another opinion, out of curiosity? Mayo is definitely one of the best places for neurosurgery, of course, but not quite as good when it comes to diagnosis and research. I hope you can get answers to your questions, please keep me posted, as I am interested. Good luck to you, and best wishes :)
How were you finally diagnosed? Did they find the tumor when doing the surgery for your seizres?
I am not freaked out, but I have went for a second opinion, because I feel there is more to my sons story.
thanks for the answers:)
I had refractory complex partial temporal lobe epilepsy for 13 years, and had a temporal lobectomy in August 2007 at Mayo to help me get better control over my epilepsy. My pre operative MRI also revealed an abnormality in my left temporal lobe, described as also had a periventricular white matter in the anterior-medial section of my left temporal lobe, considered some type of demyelination or cortical dysplasia. I was told this for many years. This "lesion" actually turned out to be a type of brain tumor, a low grade astrocytoma, which is what started my epilepsy initially. By the time I had surgery my seizures were coming from a structure next to the tumor, my hippocampus. Low grade astrocytomas, (grade II), or pilocytic astrocytomas (grade I) are most common in children and people under the age of 20. I was 15 when I started having seizures. When my epilepsy started, I also had some odd symptoms, like chronic back pain, all related to the astrocytoma. Does your child have any additional mysterious symptoms? I'm not a doctor, of course, but I HIGHLY recommend getting a second opinion. WIsh I had. If I had known I had a brain tumor, I would have had surgery years ago, since any tumor is of course serious. I recommend seeing someone at Johns Hopkins, known for tumor research. My misdiagnosis was at Mayo (and RUSH), so don't go to ether for a second opinion. And don't let the second doctor know the initial diagnosis, as (due to human nature) it will inevitably influence the second reading. I don't mean to scare you, and I am not a doctor, bet get a second opinion. The words "brain tumor" never crossed my mind once during my 13 years of refractory epilepsy, but had I known, or even heard the possibility raised that my "periventricular white matter" probably a lesion or a demylination or cortical dysplasia may be a tumor, I would have had surgery immediately. Low grade tumors can become high grade. My advice, thus, is go for another opinion. Wish I had. Again, I am not a doctor, but check it out. Wish you best of luck--
Hi there,
Periventricular white matter changes means that there has been some change in the structure of the white matter near the ventricles of the brain. This finding always does not necessarily mean that something serious has caused it .The common causes of white matter lesions are multiple sclerosis, small strokes, vasculitis, demyelinating disorders and vitamin B6 deficiency. It is also seen in migraines, diabetes mellitus etc.It is advisable to correlate any test result clinically. It is best to consult a Pediatric neurologist and clarify your concerns. I hope it helps.
Best wishes and regards!