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Seizures Returning 4 Years Post Op??
Fri, 08/18/2006 - 22:04Question:
I need other opinions on this- 4 years ago I had a RTLobectomy to remove a benign tumor and seizure focus. Since surgery I have been seizure free until about 6 months ago when I started having episodes of deja vu accompanied by what I call "funky vision" when things just don't look right (a lot like when you've been drinking). I also frequently see spots in my vision (usually black spots but sometimes white or 'clear'). I'm concerned that these are simple partial seizures (aura's) returning.
What do you think? I've been debating about going to the neuro for a while because I know she will insist on an MRI and an EEG and quite frankly I don't think either will show anything and I don't want to spend the money on them. My last EEG was a couple of years ago when I thought perhaps I was having simple partial seizures but the EEG showed nothing (not unusual though to have those results). I'm pretty positive there isn't a new tumor growing, but I can't help but feel that these are seizures again (milder than before but still seizures).
Do you think this warrants a trip to the neuro or is it something I should just ignore? My mom makes a good point that it might be best to go earlier rather than later in case I need to go on meds again (perhaps keeping them from progressing in severity like they did before)....
??????
stef
Comments
Re: Re: Re: Re: Re: Re: Re: Seizures Returning 4 Years Post Op??
Submitted by mommy2kyra on Fri, 2006-08-25 - 13:49
Stef,
No, I'm not feeling much better yet. Thankfully, my weeping has waned but my temper is short and I'm stressed to the max.
I can fully understand your financial concerns. We were so tight on money I had to get a job. My first job in 6+ years (even more if you consider my last jobs were in college), but we needed the money badly. I have a significant balance with Mayo Clinic, and they're quite particular on how much I pay bi-weekly. I have to continue going to Mayo to monitor things. And I really can't imagine going to see a regular neurologist who is considered to be a preferred provider, so I'll do all that I can to pay Mayo off.
The extra bill is most certainly stressful (which doesn't help with the seizure threshold!), but maybe you can work something out w/ your epi. I have heard that many doc's understand financial concerns and try to work around them. For instance, my epi at Mayo pushed my surgery through so I wouldn't have to pay another $3,000 deductible. It doesn't cost anything to call. See what he/she says over the phone. I would think that they'll be eager to get you in there and at least do an eeg. They may also want to do some blood work, but I don't think that they'd do anything else. My guess would be around $400-500 total, before insurance.
We haven't begun reducing meds at all since surgery. I am still at the same dosage of phenobarb. I know that the epi wants me off phenobarb, but I don't know when a change will occur.
I hope that things improve for you soon, and that these incidents stop. Take care!
Heather
Re: Re: Re: Re: Re: Re: Re: Re: Seizures Returning 4 Years Post
Submitted by stefie on Fri, 2006-08-25 - 14:08
Heather-
Why do people with e (or any other medical challenge for that matter) ahve to pay so dang much for medical care? I still have $16,000 left to pay on my surgery and all the other tests etc done (again- 4 years ago). I never seem to get the balance paid down because of the interest (and quite frankly I don't make that much at my job, but it's within the stress guidelines for me).
Unfortunately, I already know that if I go see the neuro it automatically means not only an EEG but also an MRI (always to see if there is tumor regrowth, even though the chances of that are really small), plus bloodwork etc. I have really good insurance (or so I'm told) but that still means I'll pay at least $1000. And right now I just don't have any way of doing that. I'm not about to put anything more on credit cards.
Honestly, that's the main reason I haven't gone back. I know there will be lots of expensive tests that will most likely show nothing (and of course in the case of the MRI, nothing is good, but still..).
On the other hand, I saw spots off and on (mostly on) all day yesterday. And everyday so far this week I have woken up with a splitting headache (only my RX migraine medicine helps even slightly with those).
One other thought.. I continually smell cat urine (even at work and there are no animals of any kind there). That concerns me. Way back in the beginning of my seizures, I would smell something that no one else ever did (always familiar yet unidentifiable, not unpleasant however)- I know now that those were sp's. That's all I can think of now when I smell that.
Have you considered trying another aed besides phenobarb? Perhaps there is another med that will work better at controlling the sp's and the moods (Lamictal is used for mostly cp's but also as a mood stabilizer). That may help.
Keep your chin up. I'm here if you need me.
stef
Re: Re: Re: Re: Re: Re: Seizures Returning 4 Years Post Op??
Submitted by stefie on Thu, 2006-08-24 - 20:11
Heather- I hope you're feeling better today. I think you're right, I need to call the neuro (I say this after seeing spots frequently all day today), just not sure when. Right now there's no way we can afford the extra bills. Have you been able to reduce the meds very much since your surgery? Sp's are definitely better than cp's or worse. I don't want any seizures, but if I have too, I'll take sp's. I can relate to your sense of not wanting to celebrate yet, I'm still wary of being "too comfortable." Know what I mean? I've heard that from other people too, always feeling like the seizure monster is behind you... Take care and never give up. Keep thinking about that wonderful little girl you have, she needs you. Stef