Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Right temperol lobe surgery questions! Please help
Tue, 07/31/2018 - 17:04Topic: Surgery and Devices
I live in Hawaii! & I bounced back and forth between doctors and got no answers for 5 years! My epilepsy is in my right temperol lobe. After years of medications not working I took control & finally got to see a specialist in the mainland, out of pocket and on my own. I now see the doctors at harbor view medical clinic in Washington and they gave me hope in my first visit! They’re pretty confident that surgery will help me get my life back! So I go back in October for more tests, PET scan and neuropsychological testing to determine what part of my temperol lobe. All of my MRI’s are normal, so they have nothing to pin point! I’m so excited to be able to do the surgery as these seizures have interrupted my life completely! I have a young daughter, trying to finish school, and trying to provide for my family is a must!
I see a lot of post that people have pain after the first week of the surgery. Is there anyone that didn’t? What can you take for the pain? If it’s that bad, should I plan to stay in Washington for a few weeks after my surgery, instead of flying back to Hawaii and not be able to get help?
Comments
I don't think you will want
Submitted by RTLEmum on Sat, 2018-08-11 - 21:29
I don't think you will want to fly so soon after surgery. Check with your doctor. Do you have an epileptologist who will help you after surgery in Hawaii? You will eventually need a follow up appointment. Are you planning to fly back to Washington or be followed by someone in Hawaii? I would also consider your health insurance and whether you can afford to cover all your follow up testing out of pocket. There might be neuropsychological exams, MRIs, EEGs etc. You are going to need someone local you can turn to if you need help. There are Level 4 epilepsy centers in Hawaii.
As the other two have said
Submitted by pfincher on Fri, 2018-08-24 - 15:40
As the other two have said you probably won't be able to fly right away. I had a left temporal resection in 2016. I saw the surgeon two weeks after surgery and then again 5 weeks after surgery. I went home after two nights in the hospital but I had help at home. My pain wasn't bad at all after leaving the hospital but there would be times where my balance was off and I was also tired allot. I had family helping cook my meals and get me what I needed. BTW, 5 years isn't bad. I went 26 years before seeing an epileptologist and went down the surgery route! It didn't cure my seizures but went from 5 a week to 1-2 a year, Now have a VNS implanted to stop those and lower my AEDs.
You definitely need to ask
Submitted by Jenn0030_5968b3e028e9b on Tue, 2018-08-07 - 20:43
You definitely need to ask your surgeon how soon you can fly after surgery. As for the surgery, I only spent one night in the hospital after the resection (mine was a Right partial temporal lobe) and I was able to be driven home day 2. I had my SEEG a month prior to the resection which had me in the hospital for about two weeks (to pinpoint which portion of the TL to remove). Both surgeries were painful but in different ways. The Pain of the SEEG is controlled at the hospital and the resection surgery was tolerable but not unbearable.