Has anyone had to have scar tissue removed on brain from avm surgery?
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I’m not sure that surgery to remove scar tissue is something that anyone would do. To physically go in there to operate seems liable to me to give you more scar tissue than less but I’m not a doctor, so I don’t know.
Is it something your doctor has talked about or are you just wondering what is done about scar tissue?
Best wishes,
Richard
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That was my sentiment exactly. I go in for another EMU this week. They already know it’s scar tissue. Taking epilepsy meds isn’t helping. I’m maxed out on 3 meds. That’s why I’m asking if anyone else has had to face scar tissue removal.
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I’ll be interested to know what the doc says!
Good luck!
Richard
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Not really funny story but a number of years ago when I did a regular scan to check on shunt and drain, the noticed that my appendix was obstructing the drain line for the shunt in my head. So the did surgery again and removed my appendix to free up the shunt tube. Kinda gross, kinda relieved. Regardless, yes I’ve had to have a follow up abdominal surgery before. Those can be painful in the recovery. Blessings as you continue!
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I just found this information
Hope it works
I will look into it. Thanks
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Hi Blessing, I’ve been living with epilepsy from scar tissue left by 2 craniotomies for about 50 years. I’ve been on a lot more than 3 meds and some of the side effects were disastrous.
But as far as your quality of life, I don’t know what kind of seizures or the frequency of yours. You can still have a great life if you can’t drive or do certain jobs.
It may be preferable to devote your energy in that direction. Best wishes, Greg
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Hey there Blessing
About nine months post craniotomy developed epilepsy because of the scars.
Keep us posted on what options they give you If you don’t mind.
I had no idea that this was coming after all of my surgeries.
I don’t know about you, but it was something that was never talked about for me, and I’ve heard the same from others. Took about three years to get the meds right. But I can certainly understand if they aren’t working for you.
Hang in there and have a great day.
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I am sooooo sorry to hear you’re having the same difficulty. I just spent a few days in the hospital to try to get a better idea of what’s going on. The EMU did not show anything new. They want to MRI my neck. Common since would be that a seizure could cause a neck problem. However, no other doctor has mentioned it. Vimpat has stopped the biting tongue at night but my light sensitivity has gotten alot worse. I do not know if Vimpat is causing it. I think epilepsy medicine the rest of my life will be the best option. I am having a little more positive thinking with this doctor. Please let me know if anything has changed in your diagnosis. Hopefully we can help each other cope better. There’s knew technology every day.
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Thanks so much. I am sorry you’re having difficulty too.
My 24 hour EMU didn’t show anything at all except for video footage, which captured some things.
However, this was after I had a large focal, unaware seizure where I couldn’t respond to verbal commands and was speaking gibberish about things. I still have minor ticks and jerks on my stroke affected side, but they’re well controlled.
Vimpat was not for me that’s for sure. It made me really sick.
Briviact is the next generation of Keppra. A lot of people complain that Keppra makes them angry. This, along with lamotrigene and Onfi have really helped a lot!
Briviact is rather expensive but they have a discount coupon program. I use it along with my private insurance and it brings it down to about $10 per 30 day RX. Everyone’s brains and nervous systems are different. I just wanted to mention these in case your neurologist had not. Like I said in the previous post, it really took a while to find the right cocktail. I’m certainly not seizure free but I’m a lot better off. Good luck in finding the answers you need. Yes, I’d like to help you cope as well.
Have a great weekend.
Dick
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Thank you. I am trying my best.
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Hi Dick, Thanks for the info re Vimpat. I’m going to look into it. I had a scary seizure (they all are) and I’m disappointed because I’d gone just long enough to hope I wouldn’t have any more. That is common with me too.
It makes it more scary if I’m alone in an unfamiliar place. Be well, Greg
Update for those who wanted to hear back. My EMU did not show anything like before. My new neurologists ordered a MRI on my neck. It showed some abnormalities. I am hoping this will get to root of most of the madness. I have started having some crazy symptoms.
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Constant pain has caused me to develop diabetes. Along with some bad diet choices. I need to find a way to slightly reduce the intensity of the pain