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Patient stories


 

Patient story: vagus nerve stimulator (VNS)

My husband and I began noticing signs of epilepsy in our son, Ryan between the ages of 3 and 4 years old. He would be sitting at the table eating a meal and kept dropping his spoon or fork. We decided to take Ryan to our family doctor who confirmed that Ryan was having seizures. As he got older, Ryan was constantly struggling in school because of the seizures. Just imagine going through a day where your brain stops 4 or 5 times within 15 minute time period. He had difficulties in reading, struggled in math, and continued to be tired because of medications. After dissatisfaction with a local neurologist, we found Dr. Christopher Inglese who was based at St. Luke’s Medical Center in Milwaukee, WI. From the start we could tell Dr. Inglese was exactly what Ryan needed.

Doctor Inglese worked with Ryan to adjust his medications. This meant a lot of weaning on and off medication and many blood draws. On top of all that was the list of side effects such as stomach pain, tiredness, diarrhea, shaking, etc. And the worse part of all this is that the seizures continued. We did EEG’s, MRI’s and other tests. Ryan otherwise had very healthy brain wave activity but because his seizures came from both sides of his frontal lobe of the brain, he was not a surgical candidate.

After adjusting Ryan’s medications with no significant seizure relief, Dr. Inglese suggested Vagus Nerve Stimulation (VNS). We didn’t know much about it and implantation surgery for our young son was a scary thought. After a few more unsuccessful medication adjustments, we decided to seriously consider and finally did pursue VNS.

Ryan received the VNS implantation on January 12th, 2004 and now lives with very infrequent and much less severe seizures. He has been taken off almost all seizure medications and is finally enjoying life like a 9 year-old should.

The implant was more that we ever hoped for. We never thought he could be free from so many medications at any point, but God smiled down on Ryan. He is a wonderful, fun-loving kid who just loves life and goes from the dawn to dusk playing and enjoying a normal childhood.

Without the support, love and dedication of God, Dr. Inglese, his nurse Sue and other medical staff, our family, friends, teachers, and Cyberonics, the VNS manufacturer, we would never have had the courage or strength to get through this difficult journey. We thank every one of them from the bottoms of our hearts for all they have done.

I hope our story will be an inspiration to others who are dealing with situations like ours. Perseverance truly pays off and Ryan is proof of that!

--- Monica Stahl, Ryan’s mother

Dear Dr. Morris:

Just a note to tell you how well my son Todd is doing with VNS! The first year at college he got F's and D's before VNS. He got VNS in June and last semester his grades were C-, C+, B, B+ and A! His memory is definitely improving. His seizures are down to one mild one every 3-4 weeks. His personality is more outgoing, his mood is brighter, he smiles more and is more outgoing. This is noticed by many other people, too. Thanks for your support and care. Hope he continues to improve!

Thanks for helping my son.

Linda

P.S. If you have any parents who are "on the fence" about VNS, we'll be glad to talk to them!

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Patient story: right lobectomy

I never knew how much driving meant to me, or how much not driving would take away my freedom, until my wheels were taken away. A year before I had my surgery I was no longer able to drive. I had not been able to go a full 3 months without having a seizure; I went 6 weeks or 8 weeks or even 10 weeks, but never that full 12, and I did not want to have a seizure and hurt myself or anyone else.

I have been independent all of my adult life and to have to depend on my husband to take me everywhere I went, including back and forth to work, where I have been for 29 years, was an extreme hardship for me.

I had a right lobectomy in September of 2001 and in January of 2002 when I returned to work, I drove myself. As a matter of fact as I drove myself I would laugh and smile all the way. People in cars alongside on the freeway probably thought I had lost my mind, but I didn't care. I WAS DRIVING!!! I drove everywhere, all the time. Some days I wanted to get in my car at lunch time and just drive around just because I could! When I came home from work after a hard day at the office, many days I would go to the mall just so I could drive; even when I didn't need or want to buy anything because I didn't have to wait for my husband to take me.

In March of 2002, I bought myself a brand new car to drive! I am having a good time now. Driving and smiling and smiling and driving.

Thanks to Dr. George "Chip" Morris for giving me my life back!!!

Freda

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Patient story: temporal lobectomy

To All Seizure Sufferers:

My name is Mary. I am writing this in hopes that one day you will be seizure free like I am. This is my story.

In 1975, at age 10, I was diagnosed with petit mal epilepsy. I went from doctor to neurologist to epileptologist for years trying to find a cause and cure for my seizures. I tried every medication and dosage imaginable but nothing seemed to work.

As I matured into my mid 20's and early 30's, my seizures turned from the mild petit mal seizures to the more complex partial seizures. I not only was having staring episodes but I was also falling down, leaving my house, and sometimes ending up many blocks away from where I originally started. I was taking three different medications, 21 pills a day and taking naps during my lunch hour because of the high dosage of medication. No matter what I would do (i.e. relaxation tapes, breathing techniques, etc.) I could not get my seizures under control.

This same year, my epileptologist referred me to Dr. George Morris (neurologist) and Dr. Wade Mueller (neurosurgeon). I underwent testing to see if I would qualify for a temporal lobectomy brain surgery in order to remove scar tissue (caused by high fever seizures when I was a baby) that was causing my seizures. By luck, the scar tissue was located in a very safe removable area and I qualified to get the surgery done!!!

On Feb. 1, 1999 (the day after Super Bowl Sunday), I did something that changed my live FOREVER! I had a temporal lobectomy brain surgery performed by Dr. Wade Mueller. Now, at age 37 (4 years after the surgery), I maintain the healthiest life I have ever lived. I have much more energy than in my younger years, my memory is sharper and I even bought my very first car - a 2002 Grand Prix 40th anniversary edition!

Yes, I had my doubts about having brain surgery. I even took a trip to Egypt and cruised the Nile in case something were to happen. But now, after having the surgery performed, I would HIGHLY recommend this to anyone wishing to become SEIZURE FREE!!!

For two months after the surgery I experienced some headaches, but those eventually subsided and I was back living a normal life again. Actually, two weeks after the surgery, I went to a casino in Illinois; but, of course, had much better luck with the surgery!!! And, a few months of headaches sure beats a lifetime of seizures and medication!!!

I wish you all luck and hope that someday your lives will be SEIZURE FREE!!!

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Patient story: scar tissue removal

SEIZURE FREE AND INDEPENDENT
(from an anonymous patient)

What led up to my independence was becoming a patient of Dr. George Morris in September, 1998. After telling him what was happening to me a few times a month, he immediately diagnosed it as epilepsy. In the next two months he sent me for several tests to see if I would be a good candidate for surgery. It was discovered I had scar tissue behind my right temporal lobe from a high fever I had from convulsions as a young child.

Dr. Morris told me because of the location of the scar tissue, I was able to have the surgery. Surgery will never be done if what they find in the test would leave you impaired in any way.

Surgery took place in November of 1998, and I did not get seizures anymore. A few months later, Dr. Morris started taking me off seizure medication.

Dr. Morris knew that if I were seizure-free, I wanted to get off medication and wanted to drive. Because everything was going so well, Dr. Morris encouraged me to get going and get my driver's license. Ten months after surgery, I had my driver's license. What a wonderful change in my life. Feeling free as a bird and not having to depend on others for rides.

I am now able to take the car and go shopping, make doctor appointments at my own convenience, do errands for my husband when he is busy doing something but needs a part to finish his project. I also give rides to relatives and friends who are unable to drive. My husband no longer has to do all the driving. If he ever becomes ill where he needs to get to a doctor or hospital, I'll be there for him and be able to take him.

My husband has been very supportive of me and is well pleased with how my surgery turned out, getting off medication, and being able to drive.

In the last year before surgery, I started falling and sometimes getting hurt when I had a seizure. That fear is now behind me.

I urge and encourage anyone with epilepsy to see Dr. George Morris, and if he tells you surgery will help you, GO FOR IT. The independence you will get and the loss of fear is worth millions.

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