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Jul 23, 2013 · 2 Replies

Overcoming Epilepsy

By SMHNadmin @mayoclinic
Rachel Skaug pictured four days after my surgery in 1998 and a current picture of her in good health.

Rachel Skaug pictured four days after my surgery in 1998 and a current picture of her in good health

My name is Rachel Skaug, formerly Rachel Kaalberg, and I used to have epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old, in 1998.

I am from Madison, Wis. Much of my testing happened at Mayo Clinic in Rochester, Minn. I had many tests such as blood tests, EEGs, PET scans and MRIs. I tried many medications, such as tegretol, valprocic acid, mysoline and phenobarbital, to control my seizures. I also tried the Ketogenic Diet (a diet high in fat, low in protein and low in carbohydrates). The diet forces the body to burn fats rather than carbohydrates. It is sometimes used to help control seizures under strict medical supervision.

Medication and diet changes did not seem to work for me 100 percent.¬†Therefore, as a last resort, I had to have surgery ‚ÄĒ I had five surgeries on the following dates:¬†July 30, 1997; August 2, 1997; October 8, 1997; and June 8 and 10, 1998.¬†The surgeries took place at Saint Marys Hospital in Rochester, Minnesota.

The last surgery I had was the miracle that helped stop my seizures, and I was taken off all medications a year after my surgery. The doctors that I remember most are Dr. Zupanc and my surgeon Dr. Raffel. During the last surgery, they took a 50-cent-sized piece of my right temporal lobe out, which seemed to stop my seizures. Today I have been seizure free since June 1998 and still going strong.

After my surgeries, the doctors diagnosed me with tuberous sclerosis (a genetic disease that causes benign tumors to form in many different organs -- primarily in the brain, eyes, heart, kidney, skin and lungs). I do have a few issues with comprehension, such as remembering what I read, but I work hard to remember things in picture format to understand what I read.

My parents stayed at the Ronald McDonald House in Rochester, Minnesota, during my hospital stays, and my younger brother stayed with numerous relatives during all of my hospital stays throughout the years.

I am now a healthy adult with a family and no medical issues. I continue to do checkups for lesions on my brain and in my kidneys about every two years. My experience at the Mayo Clinic was tremendous, and all the doctors and nurses that worked with me were great in helping me beat epilepsy. I am thankful and grateful for all the people involved that helped me try anything and everything to overcome my seizures.

HELPFUL LINKS

Tags: EEG, Epilepsy, Neurology & Neurosurgery, Rachel Skaug, recovery, Rochester, seizures, surgery, Tuberous Sclerosis

laura1961

Posted by @laura1961, Mar 19, 2014

I have emailed your appointments contact three times asking if you use stem cell treatment for Complex Parcial Seizures but nobody can answer that question. Does Mayo Clinic do this treatment ? it does not look like it does from what I have just been reading. If you are not using this treatment then why. I have come across another hospital that works out of 3 states that seems to use it, but I don't know how successful it is.

stacytheobald

Posted by @stacytheobald, Mar 24, 2014

Hi Laura, Yes, our Neurology department does see patients with complex parcial seizures/secondarily generalized seizures. Here is some information about a recent study that was done. If you would like to make an appointment please contact the appointment office at 507-284-2111. Thank you.

http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-experts-available-to-discuss-new-epilepsy-therapy

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