new to site

[gls]

Hi my husband has had epilepsy since age 5 and he is now 51. He would have seizures a couple of times a month, some at night, we would go for spells when he would have none, he didn't drive for a year one time. They would last for about 30 seconds but he would loose consciousness. We have tried every medicine that there is and he had a vns put in and taken out because it shocked his stomach. He had a car accident because he was having a seizure and luckily no one was hurt. The seizures became out of control. He went into an epilepsy monitoring unit for the second time in his life and this time the MRI showed the area the seizures were coming from. He had a left frontal resection done in April 2011 but had flat affect right after surgery. After months of various therapies he is back to work. Several months after surgery he was having problems with staying focused which was a slight problem before surgery but much worse after surgery. The psychiatrist put him on Ritalin to try and help and he got paranoia and almost killed himself falling down a flight of stairs. He hasn't had a seizure since surgery and is on 600 mg of Lamictal a day. He is about 95% back to normal since surgery but he has issues with short term memory loss. He had so many seizures from the time of the accident until after the surgery that it had to have an affect on his brain along with the resection itself. I also wonder if the Lamictal has any side effects that could contribute to this problem. I was wondering if there are other people who have had this same surgery and how they are doing and coping??? Thanks for Listening

 

[Nakamova]

Hi gls, welcome to CWE!

So sorry to hear about all that you and your husband have been through. It's good that he is getting back to "normal." The lingering memory issues could be related to all three factors -- the seizures, the surgery, and the meds, so it may be tough to narrow it down.

Lamictal has a reputation of having fewer cognitive side effects than the other anti-seizure meds. That doesn't mean that it works well for everyone however. I know some CWE members have had bad experiences with it. It hasn't caused any memory issues for me, but I am also on a much lower dose than your husband (150mg/day).

Has your husband had a recent neuropsych evaluation? It's basically a series of tests measuring different kinds of memory and cognitive skills. It can be helpful to set a baseline to measure any future changes. I don't know if this is an option for your husband, but you might want to look into neurofeedback. It can help with attention/focus issues as well as with seizures, and it might allow your husband to at least reduce his Lamictal dose slightly. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

I haven't had resection surgery -- I hope other folks who have will chime in.

Best,
Nakamova

 

[gls]

yes he had the neuropsych testing done before surgery and six months after surgery and there was a decline in his results.

 

[CQ:)]

Hi gls,
Welcome to CWE.

I had left front temporal lobe laboctomy in March last year, I was lucky enough to have a good recovery & I am almost 18 months seizure free.

I think memory is an issue with a lot of people with left temporal lobe epilepsy.
I had problems with my memory before my surgery which I'm sure was a combination of the meds as well as the seizures. I still get confused at times or forget things but it isn't too bad at the moment. I think I get more forgetful when I am tired.

I had an evaluation from a Neuropsych in Nov 2010 as part of my pre surgery testing which included memory test, I had another memory test with my Neuropsych 3 months after my surgery which I actually went well with & my Neuropsych told me that my memory was in the normal range.

A the moment I am on Tegretol & Keppra but our goal is for me to eventually be on 1 med. I will most likely be on 1 med for the rest of my life but a much lower dose. In March I was able to start the process of reducing 1 of my meds under the supervision of the Neurologist, we decided to slowly take me of the Tegretol. I go back to the Neurologist next month & I am expecting that he will most likely reduce the Tegretol more.

I have a Neuropsych who is a great support, I often email her with updates on how I am going. If I ever feel stressed or down about something I will email her & she usually replies straight back with some great feedback which usually makes me feel better.

 

[gls]

Hi--thanks for answering me. I must have misread something you wrote---I thought you had left frontal surgery---but now I see that it is left temporal surgery. It seems that memory is an issue with a lot of people with epilepsy. Glad to hear that you are also seizure free after surgery. Sometimes it is still hard to believe that the seizures are gone--at least I pray that they are. It is nice to hear and read about other people going through the same things that we are. I am glad that I found this site--I wish I would have found it before and after surgery. Sometimes I feel like the doctors are done after surgery and you are on your own to figure everything else out. The recovery is still going on in many ways. Thanks for listening!!!!!

 

[CQ:)]

Hi--thanks for answering me. I must have misread something you wrote---I thought you had left frontal surgery---but now I see that it is left temporal surgery.

gls - I was diagnosed with left front temporal lobe epilepsy after MRIs showed scarring on my left front temporal lobe. The neurosurgeons removed the scarring & any dead brain tissue on my left front temporal lobe.
My surgery was called a left anterior temporal lobectomy but I find it easier to say left front temporal lobe surgery.

. Sometimes I feel like the doctors are done after surgery and you are on your own to figure everything else out. The recovery is still going on in many ways. Thanks for listening!!!!!

I had my surgery at the Austin health in Melbourne Australia & I went through an epilepsy program to have the surgery. The epilepsy program is made up of a team of specialists (neurologists/epitiologists, neuropsychologists, psychiatrist, neurosurgeons, epilepsy nurse, technicians who do the MRIs, EEGs etc). I started the program prior to my surgery when I had all my pre surgery tests & will be with the program until March 2013 (2 years after my surgery).
The specialists who are part of the program find that if they kept in regular contact with the patient for the 1st 2 years after surgery it helps the patient & their family adjust to life after surgery. They encourage their patients to go back to the epilepsy clinic on a regular basis for follow up appts with the Neurologist & Neuropsych for the 1st 2 years after surgery (every 3 months for the 1st 12 months then every 6 months).
I am due to go back to the epilepsy clinic in 3 weeks time to see the Neurologist & Neuropsych for my 18 month review.

Did you or your husband have any support from a Neuropsychologist after his surgery?
My Neuropsych has been a huge support for me & my family (in particular my Mum who had to adjust the most to me not having seizures any more). I was able to adjust to life ok after my surgery & I don't seem to be as stressed since the surgery (I think deep down I'm not worrying about having seizures any more). There are still times when I let myself get over stressed about things so there have been times when I have emailed my Neuropsych with what is concerning me (often it isnt epilepsy related) & she will always email me straight back with some great feedback which usually makes me feel better.

 

[gls]

Yes we had a whole team like you did for before surgery, during surgery, and after surgery...but we don't have the relationship you have with your neuropsych. My husband thinks that he is fine and reports that to the doctors...but I see differences in his short term memory that he doesn't notice and his personality is different...he is more dependent on me than before...I wish there was a support group for the rest of the family and not just the patient. I guess I just have to get used to the way things have changed and of course I am happy about no more seizures!!!! Thanks for listening and responding!!!

 

[AngelwithDentedHalo]

Welcome to CWE. I'm sorry about what your husband has been through and glad to hear it sounds like it's now under control. I had a Grand Mal January 4th 2011 but they don't know where it came from and discovered a brain bleed two months later, which I had to have surgery to fix.

When they did the Cat scan and MRI later, it said that I had atrophy, which I understand is a shrinkage of the frontal lobe and therefore I have short term memory loss. Worse since the seizure. Unfortunately it's also a natural part of aging but sucks when it's taken from you prematurely.

 

[gls]

Sorry to hear about the atrophy---I have been doing some reading on that. Are you able to work?? Do you realize that you have the short term memory loss or do people around you notice and tell you?? Thanks for writing and take care!

 

[AngelwithDentedHalo]

I think mine is a result of several head traumas when I was younger and could have played a role in the bleed too, doctors seem to think so. I can work, the memory loss isn't too significant and it's not something noticeable but things I forget is usually just things that aren't that important and sometimes remember later like what I wanted to buy at a store or remembering what I wanted to look up online. I've never been good at remembering names of people I just met unless I meet them more than once or they become a part of my life but that's natural. I have no recollection of what happened between the seizure and waking in the ambulance, then the hospital though. I was probably unconscious or asleep, hard to say.