Epilepsy Foundation

Surgery/Support for making a descion

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Surgery/Support for making a descion

It is abig descion to have surgery or not.  We can all share the questions we ask ourselfs and doctors and the challanges we have experienced.

Members: 50
Latest Activity: Sep 23

Discussion Forum

I am now a new candidate for surgery...

Started by Crystal caridad negron. Last reply by Denise Foster Jul 25. 14 Replies

I was just recently told that I'm a candidate for surgery in October when I had to do a five day EEG. I have to go through four test before everything is official and so far I've done two. I've had a…Continue

Laser Surgery

Started by Stacie Hatton. Last reply by Pam Sullens Apr 9. 3 Replies

I recently had laser surgery performed on my brain to remove scar tissue that may be the cause of my seizures. I was diagnosed at 2 years old with epilepsy, having grand-mal seizures. I was…Continue

Corticol Dysplasia Surgery

Started by Nancy Smith. Last reply by Toni Ramos Apr 5. 7 Replies

Please forgive me, I am new to this and dont quite know how it works. My daughter starts her Phase 1 in January. My understanding this is to see if she is surgical candidate, primarily to make sure…Continue

Surgery/Prognosis

Started by Josh. Last reply by Don E. Rosenblam Mar 12. 1 Reply

I am posting something for a few reasons.1. If there is anyone who is considering the option of surgery, more so the removal of temporal tissue(s), I am willing/able to discuss the details of these…Continue

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Comment by Kathy Tedesco on July 24, 2014 at 9:35am
I had left temporal lobectomy and left hippocampus removed.one yr and 5 months ago. I am receiving absolutely what I wanted. I feel I made the right decision. My emotions, moods, memory etc have changed..not very badly but noticably. I'm not complaining tho,since the surgery I've only had 3 seizures. Much less than before, just would like to know if any others have changed some what who they are after having this done. Do have to say I seem more like myself than I did almost a yr ago. Hoping maybe it just takes time to fully come back.
Comment by Alissa on March 11, 2014 at 1:42pm
I am scheduled to do my second phase 1 on March 24th. I did my first phase 1 when I was 13 and didn't fully understand the concept of it. It came back as generalized epilepsy and I was not a candidate for brain surgery. Fast forward 11 years, and I'm seizure free for 10 of those years. At 24 my seizures have become active again. I am now an adult and can wrap my head around the situation and its totally different now. My neurologist suggested a VNS, so I consult a neurosurgeon who would like new information to work with and suggested ANOTHER phase 1. My world simply got turned upside down from that point on. A VNS is better for generalized, which I have been since I was 4. I'm not sure if I can wrap my head around the idea of a person I barely know opening up my head and taking out a piece of my brain. Which I read could alter your personality. Of course I am expecting the worst. Has anyone else went through this who can ease my mind a bit?
Comment by Pam Sullens on February 24, 2014 at 2:42pm

Caroline, I had my Partial Right Frontal Lobe resection, May 11, 2013- I was "gridded" on April 23rd -I have not had any seizure since one week into my gridding the last week of April 2013.

My entire process was done @ University of Iowa Hospitals and Clinics. The best advice I can give you is this: Trust the doctors and neurosurgeons-and also the nursing staff-My nurses in the hospital were all trained and specialized in seizure control. So-trust that you are great hands-

How long have you experienced seizures? Mine were causes by a cortical dysplasia that over time grew worse, thus- I would have more seizures.

I'm pretty sure you know this already-but every person's seizures are located in a different place in our brains-

My cortical dysplasia foci, was in the  upper right portion of my right frontal lobe-I was told that if that portion was not removed -that it would cause possible premature death in me. I told the docs that I wanted to see my son graduate from college.-

I have Frontal Lobe Seizures. There is VERY little research out there studying the frontal lobe- The majority of people with E have Temporal Lobe-I am in the lucky 10 % who have Frontal Lobe.   It was very frustrating for me to research possible outcomes with FLE versus TLE.

I also underwent neuro psych. testing, did not go through the WADA which remains a blessing to me. 

What did you do the pass the time when you were gridded? I had about 15 days before my re section-so the team there conducted a lot of research on me due to my FLE.

(I even had a test made up for me.) It was fun but very tiring.

I named the turban I had. ("Achmed The Dead Terrorist") Anyway-I know it's really easy for me to say "good luck"and "keep your chin up." I remember waking up after the 2nd surg. feeling such a relief that I had that turban off my head-and the wires were not there.

I am going off my Keprra now and should be completely gone in ab out 60 days.

I"m still on Lamictal and Neurontin. They will have me take @ least 1 pill a day o be sure.

Next week I"ll be speaking @ a convention in Des Moines to possible brain surgery patients. I hope I can help them make the right possible choice. Choosing surgery now  is a (Pardon the Pun) "no brainer" option for me

Has anyone discussed recovery and what to expect? All I can tell you is to not push yourself, know your  body and its limits.    The hardest part about recovering for me was not being able to wash my hair. It would go a total of 31 days before I could wash my scalp and hair(what little of it there was.)

Anyway-Know I will be praying for you-it's a journey but be glad you are on the road to wholeness!

Take care,

Blessings, Pam

Comment by TravisEd on February 24, 2014 at 10:54am

Sorry Leslie, I didn't swing in to this group until now.  I had it done at the University of MN, Fairview University hospital.  The surgeon who operated on me is now out at Denver University.

The one thing I'd say since the surgery is don't let them kick you out too quick.  I had an unexpected movement in the skin and ended up with fluid buildup in the skull.  Thankfully they were able to do a temporary drainage line, and then check for infection.  They then clamped it off for 2 days to see if the fluid would build up or re-integrate into the body properly.  Thankfully I did not need a shunt.

Likely they will do a neuro-psych to test for the abilities the patient has before surgery.

Comment by Caroline on February 23, 2014 at 11:10pm

Hi Everyone,

I had invasive monitoring 1/20/14 for about 12 days.  On 3/3/14 (next Monday) I am scheduled to go into the hospital for a right temporal lobe resection (removing my right amygdala and some of the area around it---as I understand it).  I have some pre-surgical appointments on Tuesday 2/25/14 to talk to the epileptologist and the neurosurgeon.

 

Any words for me?  Would ***really*** like to hear from some who feel led to offer support.

 

Thanks!

Comment by Leslie Robbins on January 9, 2014 at 12:25pm

Travis,

All the tests you mentioned are exactly the protocol they described to us-including the internal electrodes.  Can I ask what part of the country you had the surgery done in?  We are seriously considering it and are taking the necessary steps.  His is being admitted to the hospital next month for five days so they can do a video eeg.  They will take him off his meds and induce a seizure.  He had this done in 2009 as well but they want to compare the 2 to maske seizure the seizure focus hasn't spread.  Then he will have WADA testing.  He has already had a PET scan and many MRIs over the years so they have a nice comparision. 

He too has been on a wide variety of meds from Tegretol to Keppra nd Topomax (which he did not do well on) to Zonagran and Depakote (which is his current regimen).

The concern is that up until October, he was going 2-3 years seizure free, and then a period of 1 year to 18 months with a breakthrough seizure every 2-3 months.  This was his pattern since 2007.  Prior to that he had been seizure free for 11 years (the last 3 being completely medication free).  So why is he all of a sudden having these extreme episodes of status epilepticus?  He is 45 years old and has always been able to live an average life, which includes driving and working full time.  Since Oct he has been on disability and has seen his qaulity of life vastly decrease.

Comment by TravisEd on January 9, 2014 at 12:13pm

Leslie, I wish I would have done surgery sooner.  In February it'll be 2 years since the surgery.  No seizures since.  My area was left anterior temporal lobe.  The seizures were a result of a brain tumor I had removed when I was a child.  I had been on a good number of drugs (about a dozen or so) over the years from oldies like Pheno and Dilantin, to just released drugs such as Keppra, Zonegran, and Vimpat.

Seriously consider surgery.  They do a good array of tests before making the final decision if the surgery is a go or not.  The list includes Neuro-psych test, WADA, scans such as the MRI or even a PET/SPECT/MEG.  In my case they also implanted depth electrodes to get a concise reading of where the seizures originate (think of it as an internal EEG) and how they spread.  This allowed them to pinpoint the point of origin for my seizures.

Some reason I was very at ease the day of the surgery.  I think my folks were more stressed out than I was.

--Travis

Comment by Jimmy on January 8, 2014 at 11:52pm
Best of luck Leslie. I have been there. I am 34 now but had my brain surgery in 1997. Haven't had a seizure since. Let me know if you have any questions.
Comment by Leslie Robbins on January 8, 2014 at 2:48pm

My husband developed left temporal seizures (grand mal/tonic-clonic) when he was 13.  He is now 45.  He has been on medication since then and has had pretty good control, although he has had break through seizures over the years.  This October was the 1st time he has status epileptus and was hosptilazed in the ICU on a respirator after have 7 consecutive seizures.  He was able to come home after 8 days and went back to work after 5 weeeks.  Then, on December 27th, he experienced another episode of staus epilepticus, having 4 seizures in a row, and requiring him to again be put on a respirator in the ICU.

I completely understand the PTSD references.  When I try to explain how I feel to people, that's exactly the phrase I use.  Sometimes, my husband will make a noise or facial expression that replicates something he does when he has a seizure and it FREAKS ME OUT!  I know he can help it, esp. since he has no idea what he looks/sounds like while he's seizing!

This has been very traumatic for my whole family, esp. our 2 children.  His neurologists want him to explore surgical options, removing the affected portion of the brain.  I really don't know what to do- we are filled w/stress and worry about brain surgery, finances, etc.  And that is not good for him either!

Comment by Caroline on August 12, 2013 at 10:17pm

I am being evaluated for surgery (temporal lobectomy).  I am at the initial scalp monitoring stage.  I am going to Penn State Hershey Medical Center in Pennsylvania.  Seeing Dr. Frank Gilliam.  Has anyone had any experiences at Hershey Med or with Dr. Gilliam.  I would be interested to know.

 

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