Connect
← Return to Living with epilepsy - Introduce yourself & meet others
Discussion
Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand Mall Seizures for 16 years. After an extensive, expensive and discouraging journey to find answers, I decided to seek help from the Mayo Clinic in Nov of 2017. I was admitted to the inpatient testing unit at St Mary's and spent about 5 days there being video and e.e.g. monitored. After years of getting nowhere with the University of Iowa where a Nurse Practitioner had been handling my case for 12 of the 16 years, which I have no problem with, it's just that it had just became a rotation of med changes, VNS settings, and "see ya next time". My care at Mayo was beyond outstanding! Within the 1st 48 hours being admitted, a small area of scar tissue was discovered in my right temporal lobe. It seems like all hands were on deck to discuss this with me so that I understood my options available. I was given many choices and one was to join a current trial in place using Laser Ablation. I had my procedure in July of 2018. As of now I have not had another grand mal seizure. I couldn't be happier! The procedure itself was done in less than 3 hours for me and I went home the next day. What an amazing time we live in. God Bless all Neurology Doctors, Nurses and Staff!! You are amazing!
Replies to "I'm a 57 YO female living in So Iowa. I have had intractable epilepsy with Grand..."
@anna61
Hello Anna, welcome to Connect.
Thank you for sharing your story. It’s always heart warming and encouraging to hear that someone has a successful outcome.
I suppose I have become somewhat cynical about certain Epilepsy treatments from the decades of participating on Epilepsy forums. One problem is Seizure patients who have Refractory Epilepsy or children with serious Epilepsy Syndromes or bad experiences are the ones who seem to use forums most and usually have the worst outcomes.
Take care,
Jake
@anna61
Hello Anna, welcome to Connect.
Thank you for sharing your story. It’s always heart warming and encouraging to hear that someone has a successful outcome. Rick @1634517678 mentioned some become cynical and angry. To a degree I’m guilty of cynicism but not anger.
I suppose I have become somewhat cynical about certain Epilepsy treatments from the decades of participating on Epilepsy forums. One problem is Seizure patients who have Refractory, severe, cluster, hard to treat or children with serious Epilepsy Syndromes or who had bad experiences are the ones who seem to use forums most. Those are the people I am most familiar with so sometimes my opinions may not be as impartial as they should. Thank you for pointing this out Rick.
Congratulations Anna,
Jake
Connect
What an amazing story, @anna61. You must be so pleased that you traveled to Mayo for a second opinion. It really worked out well for you.
What type of follow up care do you have? Do you ever anticipate having another laser ablation or has this one cured the problem?