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kman

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Hi there,

I'm new here, i've been dealing with the Big E for 6 yrs now and it's been one hell of a ride.

After a baseball size tumor was removed from above my frontal lobe and parietal lobe, six yrs ago, I am now suffering with epilepsy. My seizures started small, numbness & tingling in my fingertips, then it moved from 2 finger tips to all finger tips, then to hand, then to forearm, then to the whole arm. This happened gradually, like 2 weeks periods. Then the movements started, the jerking, uncontrolled arm movements. It's progress is like the jacksonian march. 2 yrs ago had a grand mal. Last Nov and Dec i had 2 bad seizures that took over my whole body, but i was still conscious. Those 2 seizures really beat me up. So now I take ativan as my emergency pill, so now when a seizure starts, (tingling and numbness feeling in my hand) I will put a pill under my tongue and that has so far stopped 8 seizure this yr at the bicep/shoulder area. Only drawback to this is now i don't know if my seizures would of been big or small naturally.

Well i don't want to ramble, but good to be among people that can understand this mess called epilepsy.

Len
 
Welcome Kman,
you're right it's one hell of a ride. Glad you joined, you'll find this just the greatest place to be when it comes to keeping sane during the ride too. And don't ever worry about rambling, that's what friends are for! :piano:
 
Hi Kman,

welcome to CWE. This forum has been the best thing that has come my way.

I have learned so much from reading and asking questions, all of which I was never told from a Dr.

Hope you find this forum to be helpful to you as well.
 
Hello Kman its nice to meet you... I'm fairly new here as well... You're in a good place. The people here are really nice and very helpful :)
 
Welcome to C.W.E. Kman. You are welcom to rant, rambel whatever, theres no problem.
Take a look around ask a quistion or just sit back and relax. Your in a good place with good people who will help you. Welcome.
 
Hi kman, welcome to CWE!

I have a similar story. Also about 6 years ago, I had a tonic clonic (which began as a simple partial motor seizure) out of the blue. Found out at the hospital that I had a tumor. Fortunately, mine was much smaller than yours and looked to be low grade, so doctors took a wait and watch approach. About three and a half years ago, they decided they needed to take action and I had a craniotomy. The tumor was too invasive to remove completely, so they got what they could and I went on chemo for a year which took care of most of the rest.

My experience is different, though, in that my worst seizures were before surgery. After that first tonic clonic, I then had several big simple partial motors which left me twisted like a pretzel on the ground, but concious. After surgery, I had many, many small seizures (they were similar to what you describe, but smaller) but they became fewer and farther between as time passed. I haven't had what I know is a seizure since about six months after surgery. I've been on Keppra, due to scar tissue, just to be on the safe side. I have had problems with my lower right leg (the tumor was in the motor strip of my left hemisphere) since surgery which occurs when I'm trying to sleep. I'm not sure, but I think it's seizure related, but it's more annoying than anything - it just sometimes makes it hard to sleep, but doesn't interfere with my life otherwise.

Well, talk about rambling :)

Anyway, have you been having regular MRI's?
 
Welcome and you have been through some pretty serious stuff. Having a tumor removed is intense I bet. Having to deal with epilepsy is a hell of a ride, couldn't have been put any better. But we are all here to help, with whatever you need.
 
hi kman

I have definately got respect for you for where you have come from and its admirable that you are still fighting after all that.

I'm new here too and i have had nothing but a great reception since i found this site and joined.

i have tuberose sclerosis complex and both my kids do too, the only way they could diagnose the tsc is benign tumours in the heart, my 5 year old had 3 tumours and my 2 and a half year old had 5 tumours.Thankfully they lessen as you age and finally disappear so there was no intervention nessacary.

i wish you well and its always great to vent to those who know.... :)

Stacey
 
Hi len, welcome to CWE!

Hope you make yourself at home in here -- lots of forums here to explore, and good people to chat with.

Best,
Nakamova
 
travel bug said:
Hi kman, welcome to CWE!

I have a similar story. Also about 6 years ago, I had a tonic clonic (which began as a simple partial motor seizure) out of the blue. Found out at the hospital that I had a tumor. Fortunately, mine was much smaller than yours and looked to be low grade, so doctors took a wait and watch approach. About three and a half years ago, they decided they needed to take action and I had a craniotomy. The tumor was too invasive to remove completely, so they got what they could and I went on chemo for a year which took care of most of the rest.

My experience is different, though, in that my worst seizures were before surgery. After that first tonic clonic, I then had several big simple partial motors which left me twisted like a pretzel on the ground, but concious. After surgery, I had many, many small seizures (they were similar to what you describe, but smaller) but they became fewer and farther between as time passed. I haven't had what I know is a seizure since about six months after surgery. I've been on Keppra, due to scar tissue, just to be on the safe side. I have had problems with my lower right leg (the tumor was in the motor strip of my left hemisphere) since surgery which occurs when I'm trying to sleep. I'm not sure, but I think it's seizure related, but it's more annoying than anything - it just sometimes makes it hard to sleep, but doesn't interfere with my life otherwise.

Well, talk about rambling :)

Anyway, have you been having regular MRI's?
Click to expand...


Hi Travel bug, I do have MRI's every 6 months and so far the tumor has not returned. They wanted me to get radiation afterwards, but i did not want that. To radiate such a large area, the oncologist said i would not be able to work. I like you had a grand mal and prediagonses. That night at the Emergency center, I told the doc it was a faint spell, little did i know it was a seizure. Well that evening at the hospital they found the tumor and didn't want to let me go, since it needed to be operated asap, otherwise they said i might slip into a coma. I said i was there and i didn't want to wait, just take the damn thing out of me. For years before that, i had little issues here and there, that lead me to believe i was going to die soon, but i didn't know how to explain it to my doc. I had massive headaches, but the PCP didn't do much about it. Gave me pills to take that hopefully will make the headaches better. I don't normally complain, but when i do, then there is something wrong. I'm normally good at solving problems, so I tried to eliminate things from my house that could be causing my headaches, nothing seem to work. Plus the headaches where spread out, like every 3 or 4 days, making hard to diagnose.

My tumor was also on the left side, covering both my sensory strip and motor strip, that is the aura i get, the numbness and tingling in my fingers, starts in the sensory strip, then moves on over to the motor strip for the movement actions.

After surgery, i couldn't move my right arm, the surgeon came in and told them to put something in my ivs and then like a miracle, i could move my arms and everything was well. Luckily for me, they where able to get all og the tumor out, at least everything that was visible.

My seizures started after i reduced my decandron steriods medicine, i was taking at the time for swelling.

All is well with me now, one could never tell by just looking at me what i have been through.

Dating life sucks, as soon as i tell someone about my stories, they just run away. The girl i loved and wanted to marry, left me 6 months before they found the tumor.

There i go rambling on.

Do you have MRI?
 
My seizures started after i reduced my decandron steriods medicine, i was taking at the time for swelling.
Click to expand...

Very interesting given recent studies about the role inflammation seems to play in epilepsy.

I'm sorry that your dates "just run away". People can be so close-minded. I hope you find the gem you deserve soon.
 
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