Re: A call to arms for epilepsy patients and advocates

Thank you very much for your very informative post. I am currently in the process of locating a neurofeedback practitioner for myself. Although I have not been diagnosed with epilepsy... I am certain that I have been experiencing seizure activity that is related to a yet-to-be diagnosed Acquired Brain Injury. How do I know that this is my diagnosis? I am a licensed clinical psychologist with a specialization in health psychology and have evaluated (including administration of the Halstead-Reitan and other neuropsychological testing) and worked with patients with all levels of TBI in acute, subacute and outpatient rehabilitation settings. I also have lab results that confirm the underlying cause of my Acquired Brain Injury and have additionally obtained MRIs (both with and without contrast)... although these have yet to be studied. Unfortunately... being on Disability and a Medicaid recipient does not lend itself to proper evaluations by a competent neurologist... that is... even if one is fortunate enough to locate any specialist one who will accept Medicaid assignment.

Having been bounced around for the past 8 months by the allopathic 'health care' system... I have chosen to seek other forms of treatment. While I do not expect to be diagnosed with Epilepsy... nevertheless... I am confident that this form of therapy... along with additional natural and holistic treatments... will be successful at addressing both my Acquired Brain Injury and the accompanying seizures.

I am well aware of the tremendous complications related to pharmaceuticals that are used in an attempt to control seizures. The side-effects can be horrendous... in some cases even worse than the disease itself! I have also had the experience of evaluating and working with an Epileptic patient... as a result of the aftermath of a surgical procedure that was performed in an attempt to correct his 'uncontrollable' seizure activity. Although I no longer recall the specific procedure that was performed on him... the consequences of his surgery were utterly disastrous!

You may be familiar with a movie entitled Memento...

http://www.imdb.com/title/tt0209144/


While fascinating and highly entertaining... I knew when watching this movie that... as well crafted as it was... it was not a realistic portrayal... and the reason that I knew this was because this particular patient had suffered the very sort of short-term memory loss that was portrayed by the lead character in that movie... and it was the consequence of his surgery!

This man was a brilliant and very gifted MIT masters level graduate who came from a family of significant financial means. Having suffered with severe seizures for many years... a neurosurgeon assured him and his family that a surgical procedure would eliminate his seizures after numerous medications had failed to control them. The result of his surgery was not only the failure to control his seizures... but also damage to his brain severely impacting his short-term memory to such an extent that he was incapable of any new learning. While he maintained complete access to any prior intellectual capacity and could function reasonably well in any environment that he had been familiar prior to his surgery... he no longer had the ability to recall any new information, people, or aspects of an unfamiliar environment.

To give you one example of the consequences of this for him... as I was in the process of administering neuropsychological testing with him (which is a very time-consuming battery of tests)... he had to use the restroom on a few occasions. Each time that he would leave the testing area... which required assistance as his surgically-related brain damage also included motor involvement... upon returning to continue the evaluation with me... he had NO recall of who I was or why he was there! His family attempted to place him in a sheltered workshop so that he could hopefully live as productively and independently as possible. The last time that I saw him he was unable to even sort greeting cards with their proper envelopes and it had been determined that he would not be able to work in any capacity. I later learned... serendipitously... that he had been transfered to live permanently in a long-term care facility as his aging parent's own limitations prevented them from caring for him and he could not live on his own.

Once I have addressed my own health issues... I will be pursuing training in neurofeedback and you will have yet another very vocal advocate! I too am determined to see that safe and effective non-pharmaceutical and non-surgical treatments are made available and covered by insurance! Please feel free to contact me either through a PM or email through CureZone.

All the best ~ Dr. O Tweet