Hey Guys! Guess What? - Epilepsy Message Board

tkdmom96 · 07-13-2004, 09:58 PM

Hi everyone!

Well, Katie finished the fMRI study she started at the medical college here last August. They did a post-surgery MRI and some computer work with her. She gets paid hourly plus a $25.00 bonus for completing the study. Cool!

We met a woman who is 34 (who was chosen to start the fMRI study today) and has had E since she was 20. She had a few febrile seizures when she was under the age of 3. They just found scar tissue a few months ago (on her MRI) and she is in the middle of the surgical candidate process. They are from a town about 2 hours away. I spoke with her sister, who had to drive because of the other's E. Anyway, Katie and I were able to share her story and how the sugery went, what you feel like etc. Also spoke about the neurosurgeon, and Dr. Mueller is who her sister will have as well! So we filled her in on him and how we think the world of him! They couldn't believe how well Katie was doing after about 5 weeks. We tried to help pump her up and feel positive! Hopefully we helped. They gave Katie and I a hug before we left. Another "meant to be" moment!

ALSO we got a letter in the mail yesterday "Dear ......, We regret to inform you that Dr. ..... Walsh will no longer be seeing patients at ... effective August 31, 2004. If you have an appointment with Dr. ..... Walsh please call to reschedule with one of our other Neurology doctors... and it was signed
Sincerely, DR. MARY ZUPANC."

OUR NEW EPI IS THE DIRECTOR OF NEUROLOGY AT CHILDREN'S HOSPITAL OF WI AND SENT THE "DEAR ...." LETTER REGARING OUR OLD NEUROLOGIST, that we left last year to have Dr. Zupanc take care of Katie. So either he left on his own, or something else happened. I wonder if he lost too many patients to Dr. Z or if he just wasn't up to snuff anymore. Interesting! Now we don't have to deal with seeing him in clinic. That made us uncomfortable. It was awkward, even though I sent him a nice letter when we decided to make the switch last summer.

So, that's my news for the day! AND it was 84 today...with sun and 87% humidity. Oh well, can't always have it all!

Vicki

gagcas · 07-14-2004, 06:04 AM

well vicki,

you know, it is so glad to hear you talking with alot of certainty and confidence, let alone actuall proudness i guess you could say compaired toyour post pre op. im so happy that things are going so good for you. almost like working that big prodject and then come to find out allthe hard work got you the biggest promotion you could ever ask for........a healthy katie

.

did the study make katie want to be in this field when she grows up even more? what all did the MRI show, or wont you know just yet.

god works im mysterious ways as far as the old dr. is concerned. what exactly happened that you didnt like him very much anyway? well your where you should be now as far as the new neuro was concerned so i guess that is all that matters.

its pretty warm here too. but as usuall we have thunderstorms today and its 8:00 am and the sky is already rumbling so maybe it wont be too hot.

tkdmom96 · 07-15-2004, 09:22 PM

Hi Jen,

I have no idea what is wrong with our computer! I just typed you a response and it disappeared again! This is the 3rd time in about a week. UHG!!!

So I'll make this shorter I guess. Long story short, our old neuro (that Katie had for 14 years) became complacent and conservative. He was hopping from med to med and combos of those meds. We decided that we had had enough and that is when I came to the boards here looking for help and info. That is when I found the info on looking for an Epi and E surgery. Our old neuro never referred us to Dr. Z when they had been in the same clinic together for over a year! We found out about her from a friend of ours who is a social worker/pyschotherapist at Children's. We were going to head out to teh Cleveland Clinic (where we eventually found out a colleague of Dr. Z's is) or to Johns Hopkins in Baltimore. And the whole time we had an excellent Epi in our BACKYARD! 10 feet from our old neuro's office! UHG! He was too busy stroking his arrogant ego, with the new Epi in town. He definately didn't work in the best interest of Katie. That is why we left him last summer to join on with Dr. Z full time. Good thing we did, she is extremely busy now. So that is why we became less than happy with him.

And as Forest Gump would say..."and that's all I got to say about that...."

So, things happen for a reason. It took us a little while to find our Epi, but we did and that's all that matters now. We have gotten more than we ever expected!

Katie had decided to go in to nursing about 2 years or so ago. But all that she has been through over the last year have helped solidify that. She would like to get her CNA license and be a "care partner" (nursing assistant) at Children's in the EMU. A bunch of nurses want her there. So we'll see what happens. It's only a 6 week, weekend class. And she can work there through college and possibly get hired after her graduation.

As far as the MRI goes, they won't share anything with the one from the study the other day...unless it is life threatening. Study info can't be used to diagnose or treat. But they can give certain info to the doctor and tell them they need to check something out. Katie had an MRI the day after her surgery that showed that they got all of the tissue they needed during the surgery. The left hippocampus and the amygdala. There's a black "void" on Katie's MRI now, a vacant spot where they removed the part of the brain. Sort of interesting looking. Katie hasn't seen it yet, because she was on so much morphine those days.

Man, I hope I don't lose this again...urrrrrrrrrrrrrrrrr...

Have a super weekend!
Suppose to be in the upper 70's to low 80's with

!

Vicki

The Prodigy · 07-15-2004, 09:26 PM

tkdmom96, Could you respond to my thread? You're the only one that replied that seemed to understand what I was talking about but you asked me a few questions and a replied with the answers so I thought you may have some more good advice to share.

Thanks again.