Most of us have probably had the "5 minutes" doctor who feels he knows everything. I certainly had one during my first year in Vegas.
I found the right one when my general referred me to someone else. This guy was excellent because he said "I'm sending you to where you belong." He hooked me up with the epileptologist who I've been seeing for the past 5-6 yrs.
I had a bad experience with Vimpat too. It kept me dopey and sleepy for the 1st few hours after I had taken it. Following an in-patient EEG, I told my doctor that I wanted to be removed from it. He was happy to hear that.
I'm doing great w/o it. The few seizures I still have are usually due to stress, cold/flu, or simple breakthroughs. I can handle those with no problem.
I'm glad you found one who values your input. A good doctor-patient relationship is always beneficial to medical treatment.
Hope you hang around. A new voice is always encouraging to those who seek support/answers.
It didn't bother me that I went from brand name to generic. My doctor would have recommended that we switch back if there had been a problem.
I get all my meds in 3 month supplies. Sorry you're unable to. Sure saves on trips to the pharm.
Vimpat, huh? That med gave me some heavy problems. The usual side-effects were extreme with me.
When I was on Vimpat, I visited the EMU for general observation. You know, decrease the meds,,, cameras...action!!
That visit I had only one seizure so when I met with my doc to discuss the visit, I requested to have the Vimpat discontinued. He was thrilled that I felt that way. Less meds(with seizure control) can make for a more productive me.
I am currently taking Levetiracetam(Keppra XR) and Oxcarbazepine(Trileptal).
At one time, I was taking the name brand of these. I don't recall why my doctor decided to make the switch. There has been no seizure activity increase since the swithch. I don't recall having any of those unpleasant side effects that come with new meds either.
I tried replying to your post earlier but there was a problem with the site. I wil try to remember what I wrote.
I am so sorry that I have placed fear in your hubby's thoughts.
The aftermath of my surgery was only temporary. My doctors wanted to release me from my leave but I asked for an extension. I didn't feel ready. Since I was working with kids at the time, I wanted to feel stronger and more comfortable with returning to work. Good call on my part.
It was a weird feeling not being able to recognize the medical team. I had been a patient at that EMU(epilepsy monitoring unit) many times before so knew many of the stafff. Just didn't know I knew.
Yes, it panicked my family. But as usual, I was the calm one who kept telling everyone that it would be okay. As time passed, the fog lifted slowly.
I compare this period to a broken bone. It takes time for the bone to heal itself before it can return to its usual functions. The brain needed time to heal too.
What happened to me is no guarantee that it is going to happen to you or anyone else for that matter. Dana, the girl standing beside, had the same surgery shortly before me. She experienced none of the amnesia that I did. She was able to return to work in a short matter of time.
I don't think that the doctors would have a scheduled surgery date if they so any impending problems. If so, they should have discussed them with you and your hubby. Mine were unforseen as well as only temporary.
I don't know if you had the same tests that I had. Medical equipment and procedures are constantly improving/changing. My tests showed there was no reason for me to have any concerns. I actually enjoyed the tests. Particularly the WADA when half my brain was sedated.
In additon to Dana, I have met others who have had the surgery for their ep. None of them have any regrets. Well, they might wonder why they didn't do it sooner. They have experienced none of the mishaps that your husband is concerned about. They are actually doing better as well as being on less meds.
The only physical problem I had following the surgery was a borken ankle. Dumb me slipped on some black ice when I was leaving work. People look at me like I'm crazy when I say "Brain surgery was easier than this!!!"
Surgery is recommended because the outcome looks extemely beneficial for the patient.
I think you're doing the right thing by coming to us "professionals" who do know what it is like to live daily with ep.
Keep the questions coming. Share your and your hubby's concerns with us. Should you want to share with more privacy, my email is posted with my story. Simply click my picture.
Again, I apologize for the uncertainty that I have caused. I also apologize if I'm rambling from place to place. Hope you understand what I'm saying. Hope this helps.
I have one regret about my lobectomy. I didn't get it filmed!!!! I I would to have my surgery in my dvd collection. What a Halloween nite that would be.
The tests I took were few but detailed. One of them is called a WADA. This test involved putting one side of the brain to sleep while testing the alert side. The awake hemisphere is tested for memory, motor, speech, etc. Once that hemi has been tested, it is put to sleep and the sleeping side is then awakened so that the same tests can be done on it. This is important in determining if surgery would alter/interfere with one's daily functions.
My seizures were moving so fast that the docs were unsure as to the area of the brain that was generating them. To overcome this concern, I had a grid(electrodes placed directly on the suspected brain area) to locate the specific spot. My meds were also decreased so that seizure activity was more likely to happen while I was under observation. Catching a seizure while being testing is very important in determining type, location, or surgical candidacy.
Once the doctors had enough seizure activity recorded, I was then ready for surgery.
Some doctors do the observation and surgery on different hospital visits. My doctors chose to have me stay for one visit. Tests...location,,. let's cut it out. This was explained to me prior to my hospital admittance. The docs felt that there was no reason to have to cut my skull 2x. Sounded good to me.
Now for the surgery. It went well. The problem area was removed. A metal plate was put in its place. I was stapled back together and wheeled to recovery.
I was confused following the surgery. I wasn't recognizing my docs, nurses, or some family/friends. The docs said this was nothing to be concerned about cause is should pass once the brain has more time to heal.
I was later discharged to my parent's care. UGH!!! This was probably because the confusion was still there. I wasn't recognizing many people but I looked at strangers like old friends. I later learned that this is called hyperfamiliarity. It did pass.
I was thrilled to get back to my place. But I had a problem. The medical team didn't want me to do any heavy lifting, cleaning, bending, etc for awhile some home assistance was arranged. I went along with it to keep everyone quiet. Someone else cleaning my apt...OH, COME ON GUYS!!
The confusion delayed my planned time to return to work. Once I had been released from my med leave, I started looking for a new job site. That's when I started doing the volunteer work at a school I was once employed at.
While I was in Mpls(where the surgery was performed), I was invited be one of my epileptologists to talk with his med class about the surgery and my life with ep. It was very enlightening for the students.
My highest seizure frequency was 20/month. Prior to surgery, I was on 4 different meds totalling 6000 mgs a day.
In short, I have no regrets about the surgery. I'm currently taking two meds. My seizures are 2, maybe three, a year. Since the decrease in meds/seizures, my memory has shown improvement. I'm not as tired and rarely feel dopey.
Thanks for the questions. I hope you know by now that I will answer any of your concerns the best way I can.
NO, your reply was not too long. You might even have wanted to share more but thought you'd already posted enough. Keep sharing.
I texted Dana this morning. She says she will reply to you as soon as she can. I'm sure she wishes you the best.
Dana and I met through our epileptologists(seizure specialists). Dana had the surgery before me. They thought it would be good for me to talk with someone who had had the surgery before I had mine. They made a good call.
Dana walked through it with me. She was very open to all my questions/concerns. We have become as close as sister friends can be.
Yes, I have been through a lot but what got me through it was my stubbornness. I've always been my own person so I wasn't going to let an over-active brain take that away from me. I did have detours along the way. Changing meds or taking leaves from college became a part of my life. At first it was hard to take a slower pace through college but it was for the best. And delaying my move from my mom was detrimental. She was driving me crazy. "No you can't because...". "I don't think you're ready because.." She never had a answer for when I asked her "why?". She mostly said "because...ummm". But having my own place came in time too. Not allowing the limits others wanted to place on me was an enormous was an important part. Self-confidence played a huge role too.
The hardest parts about my surgery were not being able to return to work as early as planned and having someone clean my apartment during my early recovery. I'm a neat freak and did the light cleaning myself.
The one constant that has kept me smiling has been my work with kids. It all started as a volunteer when I took a medical leave because of high seizure frequency. The kids were very reassuring and supportive to me. That experience determined my career path. After years as a volunteer as well as being a paid classroom asst, I'm back to volunteering. I love it.
Please feel free to ask me anything that comes to mind. Oh, before I forget, check Amazon for books on ep surgery. Candi will probably suggest that you check out the library too. I say Amazon cause I'm always adding to my personal library.
I'll stop here for now. Maybe my post is tooo looong..lol.