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Date of last update: 10/04/2017.
Forum Name: Neurology Topics
|prism - Mon Apr 20, 2009 5:52 pm|
I've been doing some research since all my neurology appointments keep falling through the cracks. I have Ehlers Danlos Syndrome, Occult Tethered Cord, Functional Cranial Settling and Instability, Postural Orthostatic Tachycarcia Syndrome and a Seizure Disorder.
Right now, my seizures are my main concern. I have them everyday and I realize that they are probably what they were 2 years ago when I was tested- (they told me it was psychosomatic) but it was really because of the brain stem compression going on- and most neuros aren't familiar with my conditions. So- my seizures are either worse and more frequent because my cranial- cervical junction is just getting worse, or possibly it could be related to my Dysautonomia. (POTS or a different version) - Until even just a month ago I could get them to calm down with cervical traction but now I have them even in traction.
I have a friend who has a similar situation who has convulsions due to cerebral perfusion and I was wondering if there is a way to test the flow of blood in the brain during a seizure while sitting up- like they do when they do an EEG, and if this is ever done, what it is called if it is so I can request it.
BTW. is there any testing for seizures that they can do to monitor the cervical junction? and the possible compression going on there? or is it only always them looking for the origin being in the brain?
And, finally- do you know if seizures of either of the two types I have mentioned- Grand Mal in nature but not in origin- could be potentially damaging to the brain or am I safe if the origin is not in the brain?
I hope I made enough sense for you to follow. My life is pretty miserable. I have begun to use a catheter and can't walk well at all and seizures to the point where I can't go anywhere. (and the neurologist won't see me because he doesn't have enough proof that I need to be seen..) oh brother. And the other one says it's over his head.
Thank you for your service here. It really is wonderful.
|John Kenyon, CNA - Thu Apr 30, 2009 8:36 pm|
Hello prism --
While everything you said makes sense to me, I also understand that many neurologists and even whole centers may not be equipped to adequately address some of the problems you deal with. I don't know where you're located, but you are more likely to find the answer to some of your questions regarding physiological testing of seizure activity at one of the larger, highly developed centers of national reputation, such as Hopkins, Mayo, Cleveland, etc., just to name a few. Even then this could be frustrating, but there are out there some doctors who are interested and creative enough to find ways to do things such as you're suggesting, even though there's no standard for some of these exams. The most difficult would probably be the one to measure blood flow in the brain during a seizure while sitting, but again, there are those who would really relish the opportunity to set up something like this. The problem is finding the right place and doctor.
The two neurologists you're currently dealing with are nowhere near qualified (by their own reactions) to be working with you. This is another good reason to seek admission at one of the major centers as mentioned above.
As for the risks of the seizures you asked about, the answer is probably not, given that grand mal seizures do have some risks attached that are not directly connected with their site of origin, more like traumatic injuries due to violent spasms, so if these are not a concern then the fact that these seizures are probably not as risky as true grand mal type. They still could have some secondary risks attached.
I do hope this has been somewhat helpful to you. I realize it isn't much, but as I'm sure you know, it's going to take a center with people who are really interested in working through some challenging problems for the sake of the patient and medicine in general. This isn't as common as it ought to be.
Please stay in touch with us here and follow up with us as needed. Good luck to you.
|prism - Mon Apr 19, 2010 12:51 am|
Believe it or not, I was too sick to keep up on my email and totally missed that you had responded to my question. Thank you!
I've been told several times that I need to seek out care from one of the larger medical hospitals. I have been going to UC Davis and UC San Francisco, most recently Stanford, which helped some- but have only been to one nationally known hospital over the last few years. The Chiari Institute was the best and most expensive risk I ever took. If it weren't for them I'd still be believing the Neurologists who love to tell me 'it's all in my head' or psychosomatic.
Since I haven't had the medical help I needed this last year I spent the time going off of a slew of medications. I'm now on 7 pills a day instead of nearly 30 and my seizures finally stopped! It became immediately apparent that many of my neurological problems were being exaserbated by the meds instead of helped, even so- my doctors are a little sceptical. They had said that if the medications were causing the seizures that my brain would still respond with an electrical storm that they would see on the EEG. Is this always true? Could it not be a combination of the side-effects of meds and autonomic dysfunction or brainstem related iregularities? (Theoretically speaking)
The Orthostatic Specialist at Stanford put me back on a beta blocker- and apart from going off several offending medications I believe that subduing the adrenline's affect in the brain has something to do with the cessation of my seizures. Does this make sense to you? From the reading and conversing I'd done I was pretty convinced my 'seizing' was most likely Vasovagal Syncope.
What I'm dealing with now are minor neurological problems- some in keeping with responses that people who have an organic brain syndrome or have had a stroke have. My situation is not a whole lot clearer, but oh! very much better without the seizures. I'm also able to walk a bit better- and can do so with more control over the tendency to have my legs turn inwards or the need to drag my lagging left one.
Do you happen to know if the John Hopkins facility in CA would be sufficient for me to get better help? Or would I need to go to the main location?
Thank you again for your response,
It may not have seemed like much, but it certainly makes a difference to me.
|prism - Mon Apr 19, 2010 12:54 am|
ps. Yes, email me if a reply is posted!
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