Brain Surgery Done - Now What? | Epilepsy Foundation

CDC funded page

Not a CDC funded Page

Well...Surgery on my front, left temporal lobe is NOW COMPLETE! Approx. 4 inches was removed. It has been a little over 4 weeks and I am seizure free thus far! I realize this could change, but I thank God for the results. My current healing process is as follows...still very tired. I feel better now than I did right after the surgery. I had surgery on a Thursday and went home on Saturday morning! It's amazing how quick the surgery was completed - approx 4.5hrs. I have had no negative changes in my brain (speech, etc.) that I can notice as of yet (I am still very cautious). Again, this is a blessing and I am very thankful/happy to have this. So, my questions are these...who has had this surgery and what is (are) his/her healing results afterwards - i.e., How long were you tired? Were there any other major side effects? I was told the healing process could take up to 1 yr, but I also spoke with a lady who said her recovery lasted approx 1 month and she was back to driving, etc. I know it will vary from person to person, so I'm just trying to get an idea(s). I really don't want to push myself, but I also don't want to sleep all day. I'm sorry this message has been so scattered, but I write as my brain asks! =0) Thanks for any/all replies! God bless, Peyton

Comments

Re: Brain Surgery Done - Now What?

Submitted by peytonwelch on Fri, 2011-05-06 - 16:05

Thanks for the kind reply Amy and all prayer is greatly appreciated. It took me about 2 years of constant seizures before considering to have surgery. It was a scary proccess, but the more I studied, the more I found out that the national statistic of this surgery is very good re: no more seizures or a decrease in them (around 85%). According to my main seizure doc, the man who did my surgery (Dr. Adametz) had 100% success rate. However, let me state this, Dr. Adametz does not do a lot of brain surgeries in this area, as there are not a lot of requests for this in AR and his speciality is spinal work. But, as I said before, he is also successful at the brain work he does and I would reccomend him. His office number is 501-225-0880. Since you live out of state, it may be worth a phone call with questions if you are interested. I had my brain surgery done on a Thursday and went home on Saturday morning. It's amazing that such an important surgery could have such a quick turn-around. However, my doc's say the the actual healing process can take up to 2 years. Just let me know of any other questions yoou have and I'll try to help. There are a lot of amazing seizre docs out there, so it may be worth post a simple question on this website like : did you have.....surgery? What was the result? Would you reccomend your doctor? If so, are you willing to provide his/her info?" Well, those are my thoughts for now. Have a great weekend! Peyton

Re: Brain Surgery Done - Now What?

Submitted by sdmp on Wed, 2011-04-27 - 04:31

It may differ for us all but if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life. I had the same surgery in 1990 on my left temporal lobe as well and it rid me of the petite mal seizures that I had been having since the age of 4. I was then at the age of 10 knocked across my head by another kid that made my left side go numb, and two weeks later had my first grand mal seizure ever, directly preceded by the petite mals I had always had. The only time in life I would have grand mals was every once in a while directly (within a minute) after the petite mals. After the surgery in 1990, the petite mals were gone. My how things improved by not having the petite mals in cycles of 5-10 per month! The main problem and frustration however was that the grand mals still continued. The grand mals I had only came on once per month however, approximately 28-31 days apart. This "once a month" I accepted and lived with for the next 10 years of my life. The tegretol and all medications (many that they've since outlawed, taken off the market, or simply called a dangerous narcotic) taken from the age of 10 always made me drowsy, hindered my short term memory, and made it tough throughout school and college. After college graduation I accepted the surgery with nothing to lose. After my surgery and then marriage the side effects of tegretol on a male started to frustrate and embarrass me. I was then told to take trileptol instead. It was great for the first 6 months, but then noticed an increase in my seizures for the first time in over 15 years. I was then given another medication to take its place called lamictal, but noticed the same with this one as well. I then remembered how when I was young, before my surgery how the more medicine the doctor perscribed and my mother forced down me, the more grand mals I would have. Why when I would skip the medication to avoid drowsiness, seeing double, and help to improve my short term memory would my life seem so much better? Because I would have less grand mals. I argued this with my mother and doctor for decades and nobody would listen. After begining on Keppra in early 2007, I was being asked to increase it as I slowly decreased the lamictal. When off of the lamictal after 3 months, I started to notice how excellent things all of a sudden were. My short term memory was improving, I was not drowsy, and last but not least no seizures!?!? I was then on 4000 mg total daily keppra, 2 morning and 2 at night. What I then did recalling my past with medication was go to 1-2 for a month, then only 2 in the evening for another month. I then went down to 1 per evening after one year and had only had 3 grand mals!? Was the less medication I took better for me as I had always thought? The doctor couldn't believe this as well and since then I have dropped down to only 500 mg. once per day. This was myself that did this as the doctor watched/recorded. With less than 3-4 grand mals per year since 2007 in comparison to the way it previously was my whole life on multiple medications, I was nervous and didn't want to "quit" taking my Rx. Seizures effect us all differently that is true, but why does someone without epilepsy who takes an anti epileptic medication have a seizure? The medication. Anti epileptic medication to me this is like chemotheoropy for cancer. It's just something that causes the same thing it is used for. Once again, it may differ for us all. But if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life. What makes me happy is that my doctor finally agrees. Good luck to all.

It may differ for us all but if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life.  I had the same surgery in 1990 on my left temporal lobe as well and it rid me of the petite mal seizures that I had been having since the age of 4. I was then at the age of 10 knocked across my head by another kid that made my left side go numb, and two weeks later had my first grand mal seizure ever, directly preceded by the petite mals I had always had. The only time in life I would have grand mals was every once in a while directly (within a minute) after the petite mals. After the surgery in 1990, the petite mals were gone. My how things improved by not having the petite mals in cycles of 5-10 per month! The main problem and frustration however was that the grand mals still continued.  The grand mals I had only came on once per month however, approximately 28-31 days apart. This "once a month" I accepted and lived with for the next 10 years of my life. The tegretol and all medications (many that they've since outlawed, taken off the market, or simply called a dangerous narcotic) taken from the age of 10 always made me drowsy, hindered my short term memory, and made it tough throughout school and college. After college graduation I accepted the surgery with nothing to lose. After my surgery and then marriage the side effects of tegretol on a male started to frustrate and embarrass me. I was then told to take trileptol instead. It was great for the first 6 months, but then noticed an increase in my seizures for the first time in over 15 years. I was then given another medication to take its place called lamictal, but noticed the same with this one as well. I then remembered how when I was young, before my surgery how the more medicine the doctor perscribed and my mother forced down me, the more grand mals I would have. Why when I would skip the medication to avoid drowsiness, seeing double, and help to improve my short term memory would my life seem so much better? Because I would have less grand mals. I argued this with my mother and doctor for decades and nobody would listen. After begining on Keppra in early 2007, I was being asked to increase it as I slowly decreased the lamictal. When off of the lamictal after 3 months, I started to notice how excellent things all of a sudden were. My short term memory was improving, I was not drowsy, and last but not least no seizures!?!? I was then on 4000 mg total daily keppra, 2 morning and 2 at night. What I then did recalling my past with medication was go to 1-2 for a month, then only 2 in the evening for another month. I then went down to 1 per evening after one year and had only had 3 grand mals!? Was the less medication I took better for me as I had always thought? The doctor couldn't believe this as well and since then I have dropped down to only 500 mg. once per day. This was myself that did this as the doctor watched/recorded. With less than 3-4 grand mals per year since 2007 in comparison to the way it previously was my whole life on multiple medications, I was nervous and didn't want to "quit" taking my Rx. Seizures effect us all differently that is true, but why does someone without epilepsy who takes an anti epileptic medication have a seizure? The medication. Anti epileptic medication to me this is like chemotheoropy for cancer. It's just something that causes the same thing it is used for. Once again, it may differ for us all. But if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life. What makes me happy is that my doctor finally agrees. Good luck to all. 

It may differ for us all but if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life. I had the same surgery in 1990 on my left temporal lobe as well and it rid me of the petite mal seizures that I had been having since the age of 4. I was then at the age of 10 knocked across my head by another kid that made my left side go numb, and two weeks later had my first grand mal seizure ever, directly preceded by the petite mals I had always had. The only time in life I would have grand mals was every once in a while directly (within a minute) after the petite mals. After the surgery in 1990, the petite mals were gone. My how things improved by not having the petite mals in cycles of 5-10 per month! The main problem and frustration however was that the grand mals still continued. The grand mals I had only came on once per month however, approximately 28-31 days apart. This "once a month" I accepted and lived with for the next 10 years of my life. The tegretol and all medications (many that they've since outlawed, taken off the market, or simply called a dangerous narcotic) taken from the age of 10 always made me drowsy, hindered my short term memory, and made it tough throughout school and college. After college graduation I accepted the surgery with nothing to lose. After my surgery and then marriage the side effects of tegretol on a male started to frustrate and embarrass me. I was then told to take trileptol instead. It was great for the first 6 months, but then noticed an increase in my seizures for the first time in over 15 years. I was then given another medication to take its place called lamictal, but noticed the same with this one as well. I then remembered how when I was young, before my surgery how the more medicine the doctor perscribed and my mother forced down me, the more grand mals I would have. Why when I would skip the medication to avoid drowsiness, seeing double, and help to improve my short term memory would my life seem so much better? Because I would have less grand mals. I argued this with my mother and doctor for decades and nobody would listen. After begining on Keppra in early 2007, I was being asked to increase it as I slowly decreased the lamictal. When off of the lamictal after 3 months, I started to notice how excellent things all of a sudden were. My short term memory was improving, I was not drowsy, and last but not least no seizures!?!? I was then on 4000 mg total daily keppra, 2 morning and 2 at night. What I then did recalling my past with medication was go to 1-2 for a month, then only 2 in the evening for another month. I then went down to 1 per evening after one year and had only had 3 grand mals!? Was the less medication I took better for me as I had always thought? The doctor couldn't believe this as well and since then I have dropped down to only 500 mg. once per day. This was myself that did this as the doctor watched/recorded. With less than 3-4 grand mals per year since 2007 in comparison to the way it previously was my whole life on multiple medications, I was nervous and didn't want to "quit" taking my Rx. Seizures effect us all differently that is true, but why does someone without epilepsy who takes an anti epileptic medication have a seizure? The medication. Anti epileptic medication to me this is like chemotheoropy for cancer. It's just something that causes the same thing it is used for. Once again, it may differ for us all. But if your seizures are controlled to where you only have them monthly or in predictable cycles, see about decreasing the Rx gradually. It only improved my life. What makes me happy is that my doctor finally agrees. Good luck to all.

Re: Brain Surgery Done - Now What?

Submitted by peytonwelch on Wed, 2011-04-27 - 11:50

Thanks sooooooooo much for the reply!!! I have taken a lot of different meds over the last few years, many of which you mentioned. I've also tried getting off of one, but I have been unable. When I go down on the med just by 100 mg, I may last a few weeks, but then I start having seizures - every time. My goal is to get off all meds, but I want to wait a while as my brain heals after surgery. I'm glad to hear you are doing well and may the GOOD jouney continue for the both of us!

Brain Surgery Done - Now What?

Comments

Re: Brain Surgery Done - Now What?

Submitted by peytonwelch on Fri, 2011-05-06 - 16:05

Re: Brain Surgery Done - Now What?

Submitted by sdmp on Wed, 2011-04-27 - 04:31

Re: Brain Surgery Done - Now What?

Submitted by peytonwelch on Wed, 2011-04-27 - 11:50

Sign Up for Emails