Connect
Seizures developed after TBI in 2011
Hi everyone. I am new to the group and I am so excited to get to know all of you.
My husband, Travis, fell 30 feet off a ladder at work in 2011. He landed directly on his head and broke his back in 3 different places. He was flown to Springfield, MO to their neurotrauma ICU.
He was on a ventilator for a couple of days then he was put in a turtleshell back brace. The surgeons felt that they could heal better than with surgical intervention. It was a really hard few months.
Then at the beginning of 2012 is when he dropped and had his first full on grand mal seizure. After a lot of testing and imaging, it was concluded that this was due to the head trauma he sustained in his accident.
Here we are in 2024 and the seizures have evolved and changed over the years. Increasing in intensity and severity and changing in presentation. He used to be able to have a full aura, allowing him time to get somewhere safe before it hit.
A couple of years ago, he passed out in the kitchen without warning. He fell face first with his full body weight against his face. He had a nasty gash that I thought needed stitches so I took him into the ER. Come to find out, he completely busted his orbital socket on his left eye. Then he started seizing in the ER back to back and they shipped him back up to Springfield where his neurologist was. They put him on an EEG and even when he was awake and aware, his brain was completely misfiring. They said the EEG was completely abnormal and the wave patterns showed he could start seizing at any second.
He's been on pretty much every medication out there: Vimpat, Lamictal, Depakote, Tegretol - You name it, he has likely been on it.
Our current meds are Keppra 1500mg twice daily, oxycarbmazepine 900mg twice daily and then we have oral Lorzepam as a rescue med if we need it.
Our neurologist wanted to refer him out for possible surgical intervention because he said "you cannot be controlled by medications." So this is our next step.
We were first referred out to Barnes Jewish in Missouri. After getting the run around for SIX MONTHS, they tell us they won't take his insurance. Which is red/white/blue traditional Medicare under disability. I'm a RN...how a hospital can come back and say they don't take Medicare is crazy to me. But I have had others tell me the same thing. I think it might be just for that neurology clinic, but still. They left us hanging for 6 months with nothing.
So I took matters into my own hands and reached out to Mayo. We had a consultation phone call last week with some general medical questions. Then that kicked us up to their Neurology department who asked us more indepth questions about his history.
They wanted his records so I began trying to gather everything from 4 different hospitals across 2 different states. They told me their neurologists would review his records then decide if he's an appropriate patient to take on.
I was able to send in the notes from our local hospital with all the ER visits while I was waiting on the other records.
They emailed me on Friday and told me he had been accepted for an in person appointment and to call to get that scheduled.
We are meeting with Dr. Gregory Cascino on September 16th!
I am hoping and praying that there is something they can do to give my husband back his quality of life. We have more bad days than good days anymore. And he's only 47.
On Father's Day, he was down with a debilitating migraine (another issue with we deal with from the TBI) and he broke down into tears and said that he was so tired of feeling so bad all the time. On the day we are supposed to celebrate what an amazing Father he is, shower him with love and appreciation....it was replaced by pain.
I am literally watching my husband waste away before my eyes and it is frightening.
Has anyone here met with Dr. Cascino??
Like
Helpful
HugInterested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Connect
Hi I’m so sorry that you’ve had to endure this. My heart goes out to your husband especially. I don’t know Dr. Cascino but I have had the corrective brain surgery for epilepsy. While my seizures were not as extreme as your husbands I did experience a great difference after the surgery.
Just having been recommended for the surgery is a really good thing. So many are told they don’t have a surgical option because of the type of epilepsy they have.
I’ll be praying for your husband and look forward to hearing about what they say after you’ve seen the doctor.
I was 49 when I had my surgery in 2006. I haven’t had a seizure since. But I didn’t have seizures often. Still, I have huge hope for him if he can get the surgery. Don
-
Like -
Helpful -
Hug
2 ReactionsI am glad you are doing so well. What type of brain surgery did you have. I only have seizures a copy of time a month. My Dr is recommeding a VNS. I'm just scared.
Michele
Hi Michelle, I’m not sure of the names of the procedures. My surgeon told me mine was very typical with no surprises. I now that it was a temporal lobe location. And they basically remove all of the damaged tissue, with the expectation that it will not be able to interfere with brain function and cause seizures. I guess it would be considered a partial lobectomy.
-
Like -
Helpful -
Hug
2 ReactionsThank you for responding. They talked to me about a lobectomy but I went with laser ablation but did not help. My scar tissue was on the left side and I am right handed so I have more issues with Expressive aphasia. It is very hard when you are a nurse trying to have a conversation with a patient. I have gone through so many types of medicine and not getting better. I think ts hormonal related. My Dr at Mayo Clinic would like me to get a VNS buti have not heard of any good responses unless you are a child.
Very depressing.
-
Like -
Helpful -
Hug
1 Reaction@clevelands
i've had Generalized Epilepsy for almost 60 years. Possibly caused when I was hit in the head with a baseball bat as a kid.
I've always refused VNS, surgery or any other devices or procedures.
I had seizures daily or near-daily until I was put on an extended version of carbamazepine (Carbatrol). Since then my seizures stopped unless I fail to take my meds. My last Neurologist didn't prescribe generic seizure medication unless a patient insisted. I can't think of any other reasons why my seizures would have stopped after 45 years. Also, some people have seizure when they get refills by a different manufacturer. Stanford University did a study recommending seizure patients not take generic seizure medication. how often does your husband have seizures? Why doesn't the doctor believe medication will control his seizures? Do you know what type of epilepsy he has? Does he have only tonic clinics seizures or does he also have other types?
Take care,
Jake
-
Like -
Helpful -
Hug
3 ReactionsJake, I also take the carbamazepine controlled release. And it worked the best (also only when I took it properly lol). I’ve always taken the generic.
-
Like -
Helpful -
Hug
1 ReactionHi! I am So Sorry to hear about your husbands seizures and I know it must be so hard for you to watch what happens as well. He doesn't know what is going on when they happen suddenly. It is very Scary for You and for your family to witness this Traumatic Experience.
I took a Fall back in 2020 while we were Donating items to people and Donation Centers. I Fell in a Handicap Space where we were parked and I exited the passenger side of the vehicle stepping over cement bars which was a real hazardous especially for a Handicap Space to give a homeless man a small plastic bag of clean clothing. I handed him the bag and he said God Bless You to Me, and said Thank You.
As I walked back to the car I Tripped on the Bent Rebar where the cement bar should have been, hitting my Face on a Curb which snapped my neck back.
I got checked out at our local emergency room and then shortly after moved to Florida.
The following year I started having Epileptic Seizures out of the Blue. I had never had one in my entire 64 years on this earth. The first Hospital blamed it on medications from a prior hand surgery. It was a hospital where the Ambulance took me, and not too many people like this Hospital.
The second Grand Mal Seizure happened 4 months later, and at this point I was not taking any of those medications from that hand Doctor. The Doctor comes into my room at the Second Hospital and said to me 🤔 Have you had a FALL❓ I looked at the Doctor and said Yes, However that was in July, 2020. She replied; You can have a Seizure Up to 2 Years After a Fall.
It wasn't until I had My 3rd Grand Mal Seizure that the Next Doctor put me on Levitiracetam which is generic for Keppra. I had not had a seizure for 2 +years and I missed a dose of 2 pills and had another Grand Mal Seizure making this my 4th.
I am on this medication for LIFE.
These Seizures have Changed My QUALITY of LIFE.
I am in PAIN 24/7 at different levels during each day.
I Had NOT planned on Retiring this way, when All I was Trying to do was help People in Need.
I HOPE and PRAY that the MAYO CLINIC is the ANSWER to HAVING My LIFE BACK, and Enjoying my Partner, Children, and Grandchildren Again!
I have you in My Prayers!🙏
Hi @clevelands
I have epilepsy since I am a teenager and just got diagnosed of epilepsy in 2019 when I was 48 years old. The first 3 years were very difficult for me, I got desperate. Medications did not work well for me, either because they worsened my seizures or I could not tolerate the terrible side-effects I had. Surgery was then recommended (laser ablation). But thankfully, I had an appointment with another neurosurgeon for a second opinion. He did not recommend it to me as it would cause more harm than benefits, such as aphasia like @msabbygail has mentioned. He insisted on trying other alternatives before such surgery and recommended an epileptologist who has made a great difference. There are many options before doing such surgery, that few doctors explore, unfortunately.
I same the same opinion as @jakedduck1. Surgery should be the last resource when everything else has been tried: AEDs, diets, trigger management, TMS (transcranial magnetic stimulation) and other alternative treatments (Johns Hopkins Hospital seems to be a hospital that explores well those alternatives, according to some of mu contacts). If they do not work, you can stop with those treatments at any time without consequences. Differently from surgery, that after doing it and a part of your brain is removed, there is no way back.
I today control my seizures and have again a life quality through Epidiolex (medical cannabis), a specific diet (gluten-free and anti-inflammatory diet), lots of exercising, yoga and trigger management.
Stay strong and fighting!
Chris (@santosha)
-
Like -
Helpful -
Hug
2 Reactions@restisaweapon
Just curious, when you refill your medication, do you make sure that it's refilled with a same manufacturer every time? Different manufacturers of drugs sometimes makes a difference in your seizure control. Might want to think about it. Just like not knowing when a seizure will strike not knowing If the differences in medications will cause a seizure. They do happen. I try to reduce all the chances of having a seizure.
Take care,
Jake
-
Like -
Helpful -
Hug
2 Reactions