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Has anyone had the LITT procedure at Johns Hopkins in Baltimore or Amygdalahippocampectomy via LITT procedure?
I see that this is your first post on Mayo Connect, welcome! I had not heard of the LITT procedure, so I did google the term and came up with some information from the John Hopkins website. Here is the link for anyone who might want more information.
Are you an epilepsy/seizure patient yourself? If so, please share a little about your history with this disorder. Are you interested in pursuing this LITT treatment for yourself?
I look forward to getting to know.
Did you undergo this LITT procedure? This same procedure was recommended to me recently. I would very much appreciate talking to people who have undergone LITT surgery.
Has anyone had laser interstitial thermal (LITT) surgery?
I have refractory epilepsy (temporal lobe epilepsy with hippocampal sclerosis – left hemisphere). I have already tried 5 different medications (including medical cannabis) without success. Very recently LITT surgery has been recommended to me. Right now, I am trying to learn more about LITT and would very much appreciate talking to people who had undergone this surgery in the past, his or her experience and the results.
I just wanted to check in with you to see how you are doing with your seizure disorder. Did you have the LITT procedure or another treatment?
I look forward to hearing from you.
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@santosha 5 different medications is a lot to try and it's important to gather as much information and support as possible before seriously considering surgery.
You'll notice that I moved you question to an existing discussion on this topic. I did this so you could connect with members in a central location.
Members like @jakedduck1 @jeffery @deeebeee @lsittll @jillian18 @caseybach @heal33 @wildone101 @heal33 @debint have recently discussed epilepsy and may be able to offer support.
May I ask if you have consulted with a second opinion?
Thank you for your message and sorry for not replying before.
Yes, I have already consulted a second opinion and I am also planning to see a third one.
I will be traveling to the United States just for LITT presurgical testing by the end of May. LITT surgery is not yet performed in Brazil. It would be very nice to talk to people who had this experience in the past. This would help me much to prepare myself for the appointments at this presurgical testing and the decision-making process.
@santosha, I'd also like introduce you to @patrassi, who has traveled from Brazil to the U.S. (Mayo Clinic) for epilepsy care for her son. I'm not sure if she has any experience with LITT (laser interstitial thermal), but I'm sure she has tips about traveling to the US for medical care and about Mayo Clinic if you're interested in seeking an opinion at Mayo.
Have you traveled to the U.S. in the past for medical care?
Hi @colleenyoung! Indeed, this is the first time I am traveling to the US for medical care, I have traveled just for holidays and work before. It would be very nice if I could talk to @patrassi and hear her experience with her son at Mayo Clinic. I am sure this will be a high-added conversation. Thank you very much for this nice introduction. Kind Regards
Hi ! It would be a pleasure to talk to you about my experience in Mayo Clinic. Please let me know how I could help you .
@patrassi, I'm so pleased you saw my message. Please note that I removed your personal email from your message. We recommend not sharing personal contact information on the public forum. Feel free to use the secure private messaging to exchange email addresses. I also encourage you to share in the forum for the benefit of others too.
How are you doing Patrassi? How is your son?
Hi ! Thank you for your attention!
My son had another surgery in Brazil September 2019 and he is taking just one medication now and he is seizures free . I am so glad and thankful for his health.
I hope I could help others with our history .
I answered your request in a private message .
Thank you for your attention
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