Hi my name is Emily and I just joined myepilepsyteam! My neurologist suggested neurosurgery because medication is not controlling my seizures. I have an appointment with a neurosurgeon next week. The next step is an inhospital EEG 4 hours away from my city.Then they'll proceed on deciding on the surgery. Have any of you gone through this? If so, which surgery? What were the side affects and what should I expect? It's okay if you don't wish to talk about the side affects. I would just like to… read more
Good Day Emily. I hope your Sunday is a restful day. Now to answer your questions.
Have any of you gone through this? If so, which surgery? I had a TBI which needed to repair the broken blood vessel. Sleep deprivation and distress without much a means to lighten that up are huge sparks..for me
I have twice spent a few days in the VA/OHSU wired for 24 hour EEG. Actually I volunteered/demanded it the first time. Honestly have peace to have the EEG monitoring done. You also will be on a video monitor in your room while there because if you were to have a seizure, the team can diagnose what type/s they were and align it with the recording EEG.
What were the side affects and what should I expect? Losing weight after any surgery is common but get this EEG done and go from there, k?.
"I'm honestly so scared". That is normal and we all would agree. So the question is if you have a pastor/faith Bible or counselor. If able get outside hang with friends and fear not.
My mom be with me during the phone call so what questions should I ask?
Just get the EEG done and go from there for you. Ask for the hospital Social Worker to call you both so to give you the resources for your family/friends while you are admitted.
I will pray for you. We all look forward to your posting after the EEG is done.
I had right temporal lobe surgery last year via laser ablation. I will be 11 months seizure-free tomorrow. I went thru a 5-day EEG and had 4 seizures. My suggestion is, if you know your seizure triggers, try and make them available-maybe your hospital stay will go faster (i.e., artificial sweeteners cause seizures for me so I drank diet sodas under doctor supervision). The main side effects I had from surgery were some short term memory loss and emotional issues. I'm on a new anti-depressant/anti-anxiety regime and I feel much better.
God Bless you for all you have been through. You are a strong person.
Yes I had a right temporal lobe labectomy way back in 1994. It totally eliminated all 20-30 Partial Complex Seziures per day. It was well worth it for me. They did extensive testing in order to map my brain and find the focal point . I am blessed. Many thanks to my neurosurgeon, Dr. William Howes and my neurologist Mark Sadler.@ wendall
I've been thru 4 epilepsy different types of surgeries in 12 years, and no more for me. 1999
1-I had My VNS stimulator implanted in my chest. In the beginning after being adjust several times it was more effective then it was toward the end, even with a battery replacement 1 time. I had it removed Oct. 2016.
2- When I had Neuropace RNS implanted in my scalp. That required. Some pretesting EEG to locate the seizure focus area of my brain. Before surgery so the lead could be implanted in the correct place.
3- I Did have a "right temporal lobe tumor" removed about 8 years ago. This didn't stop my seizures either.
Last - Jan. 2017 I had to have surgery to have the Neuropace RNS implant removed due to problems. I was developing very bad headaches over Mov. //Dec 2016. Had a CAT SCAN,something irregular showed up and my Dr. Wanted me admitted. Well after being admitted and checked, I had a "Spinal Tap". The results of that showed that I have bacteria in my nervous system channel. I was then started being treated with IV Antibiotics, and after further evaluation the Neuropace RNS stimulator had to be completely removed. It turns out I wasn't told this. But for all types of implants there could be a "slow growing bacteria" which causes problems in about 4% of patients.
With all that I've been through since 12, now 57yrs, I'm not trying any more surgeries unless it is life or death. I will always have a seizure once and awhile, as you read others they still have them too. Complex Partial is my type.
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