Anyone had LITT (laser interstitial thermal) Procedure?

Posted by csue1 @csue1, Sep 25, 2020

Has anyone had the LITT procedure at Johns Hopkins in Baltimore or Amygdalahippocampectomy via LITT procedure?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@stmr

I have LITT surgery scheduled at the Mayo on June 30th. Can anyone tell me about what to expect for the recuperation time and potential symptoms? My epileptologist is insisting that I'll only be in the hospital for one night. That's hard for me to imagine given that it's a brain surgery. Thoughts???

Suzanne Mills-Rittmann

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Hi ! My son had a hemispherotomy surgery at Mayo Clinic in February 2017.
In September 2019 he had another surgery to finish the first one.
Nowadays he is seizure free and taking just one medicine per day.
Unfortunately I can’t help you talking about LITT . His surgery was open scalp and he had his brain hemispheres separated.
I wish you luck and health! I am sorry I didn’t answer your questions.
Best wishes
Patrícia

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Hello @ patrassi

t is interesting to know that your son has had his brain hemispheres separated. May I ask, How is he doing? Years ago my neurologist suggested that I have brain surgery where my brain hemispheres were separated but I thought such a thing would make me a vegetable.

Laurie

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@patrassi

Hi ! My son had a hemispherotomy surgery at Mayo Clinic in February 2017.
In September 2019 he had another surgery to finish the first one.
Nowadays he is seizure free and taking just one medicine per day.
Unfortunately I can’t help you talking about LITT . His surgery was open scalp and he had his brain hemispheres separated.
I wish you luck and health! I am sorry I didn’t answer your questions.
Best wishes
Patrícia

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Thank you very much for your response. Keeping my fingers crossed for the great results you've experienced for your son.

Suzanne

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@patrassi
Have your sons complications gone away with the seizures.
Jake

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@jakedduck1

@patrassi
Have your sons complications gone away with the seizures.
Jake

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Hi! My son had physical disabilities since he was born premature and he can’t use his right hand properly. It was previously the surgery, but it got worse after it . And he also lost the side view of his both eyes .
But I have to tell you that since he is seizure free , he has a normal life, he goes to school , he plays tennis, he has English classes. He is free and happy.
There are no complications in his life for now ❤️
Best wishes

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@stmr

Thank you very much for your response. Keeping my fingers crossed for the great results you've experienced for your son.

Suzanne

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Best wishes for you Suzanne!
I will definitely be cheering you health and success in your procedure.
Pat

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@patrassi

Hi! My son had physical disabilities since he was born premature and he can’t use his right hand properly. It was previously the surgery, but it got worse after it . And he also lost the side view of his both eyes .
But I have to tell you that since he is seizure free , he has a normal life, he goes to school , he plays tennis, he has English classes. He is free and happy.
There are no complications in his life for now ❤️
Best wishes

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@patrassi
That's great!!
Always nice to hear when someone becomes seizure “free” and free in so many ways.
Great news, thank you for sharing.
Take care,
Jake

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@patrassi

Best wishes for you Suzanne!
I will definitely be cheering you health and success in your procedure.
Pat

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Thank you! Tomorrow's the big day. It would be a dream come true if I could be seizure free like your son. Fingers crossed.

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@colleenyoung

Welcome @stmr. I'm confident that @patrassi will return to tell you about her son's experience with laser interstitial thermal therapy (LiTT) and perhaps @suellipo68 and @santosha. While you can private message Patrassi, it would be helpful for others to hear more from members in the forum so others can join in the conversation and learn.

You can find instructions on how to use Connect here: https://connect.mayoclinic.org/help-center/

You may also be interested in this recently published article from Mayo Clnic:
- Expert Alert: Laser therapy brings the heat to minimally invasive epilepsy treatment https://newsnetwork.mayoclinic.org/discussion/expert-alert-laser-therapy-brings-the-heat-to-minimally-invasive-epilepsy-treatment/

You're in good hands at Mayo Clinic, Suzanne. It is hard to imagine that you will only need to be in the hospital for one overnight after such a procedure, but it's true. LITT is minimally invasive and the hospital stay is typically a day. Usually the return to former activity is within two weeks. Crazy, right?

Will you be going to Mayo in Minnesota, Florida or Arizona? Do you plan to stay at Mayo in a hotel for a few days following surgery? Are you traveling from from away?

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Hi @colleenyoung
My apologies for not replying before, I was on vacation.
I finally decided not to do a LITT as my neurosurgeon has said it would bring more losses than benefits, as my lesion is in the hippocampus on the left side.
I am controlling my seizures with CBD, a neurobehavior approach and yoga. Feeling good and well again, as I did not tolerate well the 5 AEDs I have tried. Some of them did control my seizures but have affected very much my life quality.
Have all a nice Sunday!
Santosha

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Santosha
did you have the laser surgery last year. If so have you seen any reduction in seizure activity?
My 34 year old son had the same surgery last year and we have seen a slight decrease in activity. In Jan of this year Mayo implanted a VNS. Now 9 months later we see some improvement but still having multiple dangerous cluster seizures. We're considering another implant called a DBS.
Would love to hear if any one in our group has had the DBS surgery.
James

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