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preparation for surgery

Sun, 08/27/2006 - 20:41
My 27 year old daughter has intractable epilepsy and is a candidate for surgery. There is a lot to learn, for her and our family, in approaching this. I'm looking for ideas and resources (articles, pamphlets, personal experiences, etc) which could help us 1) in preparing for surgery and the aftermath of it and 2) help us with decision-making. (What are the decisions to be made, how to get help with decisions, questions to ask, second opinions and deciding on where to have the surgery?) I'd appreciate any suggestions. Pete

Comments

Re: preparation for surgery

Submitted by Kelly G. on Mon, 2006-08-28 - 05:46
Well, i'm suppossed to have surgery started on Sept 27th, if the state doesn't feel the need to drop my insurance. The appeal date is on the way via mail. I did alot of research online, made as many phone calls as I could on a daily basis and just took the tests, talked to the doctors and talked to others who already had the surgery they had done. They are all different circumstances, true, but they know where to start and how to cope. I have 4 weeks until I have to go in, if I do, yet NY is saying I make over the limit for Family Health Plus now. It's crazy the way the country works. I had originally had my first doctor for almost 10 years, thinking he was knowledgable in his feild of neurology. He was my doctor, I thought he knew what he was doing. Then, an emt in the ER asked me one day who I saw and what prescriptions I was on. He said one is just a sugar pill practically and I should get a reference to Albany Med where they could probably help me a little better. So, a year and a half later these new doctors have performed ALL the tests and I am a perfect candidate for surgery. My old doc is an idiot and if this goes well, I hope to find that EMT to say Thank You. My ignorance and my old doc got me nowhere until this one guy in the ER gave me a great idea. And Albany Medical Center is a great hospital. I'll get some important info together and get back to you. Where are you located? Keep searching and good luck. This is a great site to come to, too. Always and preparing to shave my own head in 4 weeks- Kelly

Re: preparation for surgery

Submitted by mommy2kyra on Tue, 2006-08-29 - 13:31
Hi Pete, I had surgery in my LTL 3/06. It wasn't easy. In my case, I needed intracranial monitoring before they would remove my foci so I went through the surgery twice. I had heard of major headaches being a very common effect of surgery, but nothing could prepare me for that intense pain. The pain was SO incredibly intense, and nothing controlled it. The doctors told me that 25% of patients don't get pain relief from any meds...I fell into that category. I continued the prescription meds (to at least allow sleep for 3 hours, here and there) for about 3 weeks I think. I switched to Tylenol in the day and presciption at night, which allowed me to eat again. The prescription med was horrible on my tummy, I couldn't keep anything down, and got *very* skinny. The Tylenol (and Advil) helped me eat again and put on some weight. My headaches were pretty much gone after about 6 weeks. An extremely common side effect of surgery is jaw pain. Jaw pain was also quite intense for several weeks. In the beginning, I couldn't open my mouth to brush teeth without incredible pain. That eased after a week, but yawning was very painful for around 4 months. I haven't gotten over that completely (as I still get that sharp pain w/ a yawn from time to time). Another biggie, for me, was vision. My surgery affected my left eye in that it would get lazy when both eyes were open. I had to keep my right eye closed at all times, in order to get strength back into the left. Even still, if I haven't slept enough my eye is lazy for a an hour or so in the morning. I was told that this efect is somewhat uncommon, affecting 10%. Lucky me! LOL Emotional effects began kicking in a few weeks after the surgery. Once my physical side effects began to subside, I guess. It started off as an emotional roller coaster. Some moments I was so very happy, and the next I'd be crying because of emotional pain. Up and down *so* fast. That did subside within a few weeks, and I was left in a depression. This effect is also pretty common. To battle my depression, I began exercising a lot and seeing a therapist. I've done well, but still depressed. My epi then decided to put me on an anti-depressant (just last week) to help me through. Last, but not least, is memory. Some (lucky) people have improved memories after surgery. Others (like myself) struggle a little more than before with memory. My memory has never been great, so I thought that I was prepared for memory troubles. The trouble is that a part of memory I never had trouble with before has been affected. I have a heck of a time w/ names in particular. I've recently figured out that my recall is what's having trouble. I may know the name (no problem) one sentence. The next sentence, that name is gone. I can't remember it for the life of me, and it's very frustrating! Doctors call it the "tip of the tongue" phenomenon. I *think* that I've recalled all of the biggies I've had to deal with since my surgery. I don't regret my decision to have surgery at all. The epi, neurosurgeon, and everyone else involved have been terrific. My sz's were also intractable, so it was the right thing for me. I have not had any complex partials or grand mals since surgery (a very big improvement), but I have had a few simple partials. As long as it stays there, I can't complain though :) It is a long, bumpy road...and your daughter will need all of the support she can get when she does have surgery. I wish her the very best of luck! You may want to check out epilepsy surgery on the E.com (for professionals) and Emedicine to get a complete description of the surgery itself. While it's kinda freaky, it's pretty interesting, and nice to know exactly how they're doing it! Take care! Heather :)

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