What do you think my DR will say?

[Sweetface]

I'm new to this forum and thought I would ask something. My neuro cant get me in till next Friday. Here's my history:

I'm 41 and had an auto accident swerving from a deer on the freeway last Sept and hit the guard rail at 65 mph and the airbags deployed. I thought I came out unscathed but for 8 months had a CSF lead out of my nose and thought it was just a runny nose. I would also get headaches and then after
5 months my cognition started to wane, words started to slur, I'd blank out and forget what I was saying and have a heavy feeling in my head to where I felt I had a grapefruit weighing on my soft palete. At times at work I would get this sensation and slur words and taste metal in my mouth.

Long story short after 3 doctors my neuro said that it was most likely CSF but that symp is not as frequent now. I have orthostatic headaches occasionally but still have that foggy feeling, the heavy palette and so my Neuro did 2 MRI's. They found a 6mm cyst on my right thalamus. I ws told by a friend who had brain surg for chiari to send my MRI's to a neurosurgeon since they are more accurate so I did. His nurse said I needed an operation of some sort but they can't give me details till August 28th. Its not STAT. I guess its the Thalamus..

So over the last 6 weeks I start having ore sluring, others witness that, I also have falling dreams where in the dream I know I'm about to fall and I say to myself in the dream "oh no, not the fall, don't go there" and I fall thru space, or off a cliff or in an airplane and I jolk about a foot in my bed waking up. I've had those where I bite my tongue and a few days ago with no dream at all from a deep sleep I started convulsing because I woke from it with my head whiplashing all over the pillow and I woke screaming and bit the side of my cheek. I fell right back to sleep but had major muscle tension for a few days so I finally called my neuro and he wants to see me next week.

So, in short, I might need brain surgery, still have to see the Surgeon to find out what we need to do. The neurologist did not refer me to him so he wont call the surgeon to find out why he wants to see me. So I'm on my own I guess since I solicted the surgeons advice without a referal.

My questions are: Do people bite themselves during sleep seizures if its psychogenic? I don't think they are psychogenic because of the cyst on the Thalamus. Also, I read the Thalamus is a major player in Epilepsy, does anyone here have a cyst that gave them Epilepsy? Has anyone here gradually aquired epliepsy like this where it started mild and got worse? Also, I think my sluring moments are Absent Siezures, I think with the sensation of the soft palate hanging in my mouth that that might be my premonition because I get ringing in my ears and feel spacey and can slur my words at that time.

Anyone with Epilepsy have this happen to them? I also sometimes feel that there is a rubber band from the top of my head to under my upper molars pushing my head into a raisin. This is waking consciousness and no outward seizure.

My background: I worked in engineering in Proj Mgt, I'm a massage therapist, do fine art, sang opera for 12 years and ride horses on a ranch in MT. I'm a pretty smart person normally, but I feel cognitively challenged these days. Any advice is helpful. Thanks!

 

[Nakamova]

Hi Sweetface, welcome to CWE!

Given the fact that you had an accident AND a CSF leak AND have a cyst, it seems pretty likely that your symptoms are neurological in origin, and pretty UNlikely that they are psychogenic. The CSF leak can cause a lot of symptoms that are very similar to seizures (headaches, tinnitus, slurred speech,tingling, metallic taste, etc.). And the CSF leak is also a probable cause of the cyst, so that may explain the ongoing and progressive nature of your symptoms.

Did the docs diagnose and localize your CSF leak by injecting fluorescein? In some cases this injection can lead to delayed grand mal and absence seizures.

Best,
Nakamova

 

[Sweetface]

The CSF leak has seemed to have dried up. I would go #2 and it would come out my left nostril, if I bent over it would come out. Then I got a sinus infection that plugged that avenue off and it the CSF went down my lungs. What happened is that I went months of having this leak without knowing it was CSF and by the time my neuro gave me the beta 2 transferrin rx I could only get a few drops out at a time and even that was intermittent. I can't get drops in my lungs either. Since about 6 weeks ago, the fluid filling my lungs has stopped and the tinnitus much worse. Not sure if CSF is still flowing around there but we've had no spinal tap yet. We were hoping for fluid collection. I did get orthostatic headaches, they still exist at times but no more fluid when I bend over. The last week I've had nausea and the nausea is pretty extreme but I dont throw up, however thats when I have the heavy feeling on my soft palate. Also, my soft palate started quivering last night. I was an opera singer so we use our soft palate alot in singing and I'm very consious of that part of my body so its odd to feel it flutter. He's never done flurescein. I had the flu when I was supposed to see the neuro for follow up but his secretary doesn't like me much and would never call me back to reschedule. So now that I've had the seizures in my sleep, they want to see me, thank God.

I looked up www (dot) allabouttbi (dot) com and I think what I have is moderate to severe delayed or secondary TBI with all my symps, however, I'm not brain dead yet. I still walk upright and go to work, I just am not my normal self.

Because I've had no Rx's for any of this the seizures are all on their own for now. Do neurologists Rx the EEG first thing or do other things? Thanks for your reply.

 

[Nakamova]

If seizures/epilepsy are suspected, it's usually standard to do an EEG and and MRI to help confirm or rule out a diagnosis. It can be tricky, because not all seizures will show up on an EEG. If the EEG and MRI are inconclusive, and no other diagnosis presents itself, the neurologist might prescribe a low dose of an anti-epileptic drug to see if that helps in reducing the symptoms.

The soft palate sensations you describe sound like there might be some damage to the vagus nerve (which also plays a role in seizures). If the vagus nerve of one side is damaged, the palate elevates asymmetrically, and is pulled up toward the strong side. That might also account for the sensation you describe above of a "rubber band from the top of my head to under my upper molars pushing my head into a raisin." A damaged vagus nerve can also affect the production of stomach acid, and might cause your nausea as well.