Hello! I need some advice of where to go from here..

[Annie4637]

Hello everyone!

Ok the hardest part about introductions is telling everyone your history and typing all of the details since it takes so long to do. Anyhow here is a summary of my history.

I have had epilepsy since I was seven years old. I have been on and off medications since then. I took Phenobarbital for two years after the one I had when I was seven tried to go off of it only to have another one and then went back on meds and the same scenario repeated itself when I was in tenth grade. For these past occurences I had Grand Mal seizures.

A few years later after high school I went to a different doctor who took me off of Phenobarbital and switched me to Tegretol. I was on that for about 10 yrs when I would intermittenly have a seizure every now and then. TheTegretol controlled my seizures for the most part.

However the Tegretol or Carbratrol raised my liver enzymes and as a result my doctor had to switch me from Carbratol to Lamictal. When he first switched me I was on it for about a couple of months before when I had another episode I almost went into a full blown seizure but I kept myself from doing so. It wasn't easy but I managed to do so.

Then about a year later this past August ( 2008 ) I had four temporal lobe seizures in one day and rushed to the hospital. I was in the hospital for four days and during that time they performed a CAT scan along with an EEG. The CAT scan showed damage to the temporal lobe area. The doctor who was seeing me in the hospital was not my regular neurologist plus I didn't agree with his advice about medication because he wanted to increase my carbratol which increased my liver enzymes to begin with but that's another story. He also said that I should surrender my liscense which wasn't an easy task to do!

A couple of days after my stay in the hospital I went to see my regular neurologist and he performed an EEG and it came out abnormal. He also decreased my carbratol and raised my Lamictal from 250mg to 300mg. During this time I had another another seizure in September at first I didn't tell my doctor and then about a month later I had one more. I went back to see him in October a couple of days after the second one and he raised my medication from 300mg to 400mg. Also during this visit he suggested having surgery something I didn't expect. Since I had been on three medications in my lifetime that have not controlled my seizures. When he mentioned this it scared me and I went home crying about it since I felt totally out of control. This was a total shock to me!

I called my mother who is a retired RN. She has been nothing but supportive and has watched out for me in numerous ways with my seizure disorder. She said that she and my dad had been talking about the surgery themselves and said that they were looking into the information about it about where the best place to have the surgery according to the success rates. After my visit in October when my doctor increased my dosage to 400mg of Lamictal I haven't had any seizure problems but I have had the side effects of the medication which have included not being able to sleep that well, my joints are sore and I have been clumsy with some things. I also noticed that my sex drive has decreased dramatically and that has been extremely frustrating!

If I don't have any more seizures for the next couple of months I may be able to get my driver's liscencse back since before my seizures were controlled by my medications. Plus I live about 15 miles out of town so I am totally dependent on having others to drive me to and from work. I need to have my job in order to pay for my bills and my medication. Also with my job I have to drive around to see people and that in and of itself is frustrating. Since I work with people with disabilities my employer has been supportive with having someone drive me to the places I need to go but this will only be temporarily since my agency can't afford a salary for this person but can afford mileage and that is the only reason why they stay. I have thought about looking for another job in the future that doesn't require driving.

At the moment though I have a lot of vacation time and sick leave so that if I do decide to have the surgery it would be the best time to do so. Since this will be the last year we can carry over our vacation time from last year. However that in and of itself is not a reason to do the surgery. So now I feel like I am in a pickle and am in need of advice of where to go from here. Thanks for reading this looong forum!

Have a good day everyone!

[josieb]

Annie: Welcome to the group! I read your post and see that your history is somewhat similar to mine. My seizures were controlled with different meds for extended periods and then they would start again. It finally came down to trying numerous meds with no control at all and the frequency of my seizures increasing. When I first heard my neurologist mention about brain surgery - I was totally freaked out and thought there was no way it would ever happen.

Over time, things continued to get worse and after doing some more testing, they discovered a small tumor on my left temporal lobe. My neurologist left the decision up to me about attempting the "wait & see approach" while trying more and more meds, which resulted in terrible side effects, etc.

I did have the surgery in February of 2006, and I will be the first person to tell you that it was really tough. My recovery was a lot longer than expected and I dealt with some depression issues as a result of the surgery. About 5 months after my surgery, I started to have a milder form of a seizure, without actually losing consciousness, and to me, that was actually worse than the original seizures I was having. I was then started on new meds and have now been completely seizure-free since September 2007.

I have spoken with others who have done great since having the surgery with no problems or seizures at all. I'm sure others will respond to your post and tell you about it.

I can understand your "pickle", and in the end, it is completely up to you. Your seizures are again being controlled, but at the same time, you're dealing with terrible side effects from the high doses of meds. I do know what that's like. In addition, I also had to give up driving, and it was almost 4 years before I was able to get my license back.

My best advice to you is to read up as much as possible about the surgery (as well as the necessary pre-surgery testing), and as your parents have noted, find a location with experience and high success rates. But no matter what, it's still up to you and what you want to do. If you have any doubt and feel that you would rather try other options first, then don't be pushed into having the surgery. I do wish you good luck!
Sincerely,
Josie

[Bernard]

Hi Annie, welcome to the forum.

I think you will find that there are many people here with stories very similar to yours.

Many people have enjoyed some success with brain surgery, but I think many doctors tout the very positive 6 month results from initial studies and don't tell people about the less positive longer term prospects.

Food for thought: Proactive Prescription for Epilepsy

[RobinN]

Welcome Annie - I hope that you find the information here helpful.

[Annie4637]

Hi everyone!

Thanks for the replies. I tell you that it is not an easy decision to come to! I have so many questions and the hard part is figuring out which direction to go. Sometimes I wonder if what all the doctors tell you is true or is there another answer. In some ways I feel that I need to go somewhere else to get another opinion. I also wonder if now that since my seizures seem to be under control at this time should I wait and see what happens or do I go ahead and pursue the surgery. What stinks is that there is no indication of which way to go and as the statistics show there not everyone ends up with good results. I feel like I am lost in a deep forest and don't know which way to go.

Thanks again for your responses and the warm welcome!

[brain]

Annie,

From the sound of your post, it does appear that you
are in good hands - but personally, I would give it more
time ~ for it's not like you are having seizures going on
11 to 30 to 50 or more times a day! (Big difference there)

I've been through this for decades, and one bad thing
about anti-epileptic drugs is that it is possible
for one to develop resistance / tolerance to a drug
or drugs, so the need to switch the "cocktail" over a
period of time, as it were in my case, can be a pain;
however I've had periods of years of being seizure free
while being on medication.

So you have a balance here.

My recommendation?

Go for a 2nd Opinion! Talk with your mother about that!
I wouldn't jump the gun and aim high for the surgery just
yet - have a talk with your Primary Doctor about this as
well and cover all the bases. I'm a strong advocate of 2nd
Opinions and recommend it.

It's strongly possible that these titration of medications
is actually provoking seizures (yes, some medications can
cause seizures if too low or too high of a titration or worse
not at the proper titration).

So all of this needs to be re-evaluated and reviewed, for
the patient's benefit. I recommend that your 2nd Opinion
would be heading to the BEST Hospital that deals and
specializes in Neuroscience in Epilepsy / Seizure Disorders!
It's worth all the trouble and effort, you just might find
yourself not even NEEDING a brain surgery but rather,
being on the right titration of medication(s), on the right
diet, on the right this or that, and everything else. These
Hospitals look into everything. Even how you sleep, eat,
drink, and so on - so do not "hide" anything behind, let
it all go and be honest before them, for they are there to
help - and if they feel that brain surgery is needed, then
they would be the best ones to handle it ... after all they're
not up there at the top ranked Hospitals without a reason!

Something to think about and talk it over with your mother
and Primary ...

Just my humble thoughts here!

And there are alternative methods as well - NEUROFEEDBACK!
See Bernard about that one! (After all we call him ...
Johnny Neurofeedbackseed for a reason ...)

[sixpack]

Hello and welcome