Ellen, We are very happy that you connected back with the discussion to keep us posted on Eric's journey. I know that it can be difficult for some patients to connect with others especially when it comes to surgery. I never was given a name of a person to connect with prior to my surgery. My next thought was let's just get this done and take the recovery journey one day at a time.
Eric we are with you in thoughts and prayers each day prior to your surgery and after. Keep moving forward and try your best to share your feelings and concerns with your doctors, friends and your wife. The more you get your questions and frustrations out the better you will feel.
I now feel that maybe there was a purpose for me to have been diagnosed with seizures because I have connected with many citizens to share our journey in life with this disorder.
Please aske more questions to your doctor to learn more about the lobectomy. The more questions the more you will understand. The basic information is if medications, specific diets and other alternative natural methods do not work, then the doctors usually check to see if a patient is a candidate for surgery or not.
If a patient is not a candidate for surgery then the VNS may be the next option. Some patients are candidates for one, but not the other.
If you are a candidate for one or the other get information, education videos and also get referrals to other patients who have had the procedures done. It really helps to speak with others who can share their own experiences.
I know four friends who have the VNS and four who have had lobectomies. Some are seizure free and some are not, but for the patients who are not, the seizures have decreased and made our lives much better!View Thread
Meg, I forgot to write in my message that I did not go through with the lobectomy to get all of memory back, I just wanted to reduce the seizures or possibly become seizure free.
The 12-15 complex partial seizures each month were wearing me down and I did not want my family to be walking on pins and needles especially when I lived alone. I was also concerned with aging about the possibility of having convulsions again.
It was great to have a dramatic drop with medication levels. I only have to take 2 medications in the AM and 2 in the evening which is a dramatic decrease compared to 3-4 in the AM, noon and evening.
Meg, I can relate 100% to the memory loss due to seizures. It was very frustrating and I had to have notes with me all the time. A journal of my 2-do list, check off sheet for my medications in the pill box, doctors appointments, hair cuts, the list could go on forever.
After the right temperal lobectomy my memory has increased dramatically. There are some things from the past that I may remember, but not too much from my teen years when I was still having seizures. Most of my teenage years have been lost somewhere in cyberspace
After the brain surgery the clinic did another neuropsych evaluation and I could not believe how much my long term and short term memory had improved. The doctors also stated in the results that my self esteem improved.
Now I am in middle age and starting the peri-menopause stage which I am giving the name perimental pause because I am working too fast and sometimes misplace a note or forget a simple duty at work.
I just wanted to reply to your concerns about surgery. Every surgery is different, but the technology has come a long way compared to 15-20 years ago. Make sure to go over details with your doctor and neurosurgeon. Please do not be scared by what others may have gone through because the technology has improved dramatically!
Any surgery can have complications such as a simple appendectomy. It all depends on if you are physically and psychologically prepared to make this decision to go through with surgery.
It has been 10 years since my brain surgery. I was 38 years old when I made the decison to have a right temperal lobectomy and it has changed my life. I decided what do I have to lose? Medications were not working, I was getting older and seizures were increasing. I had to find out if I was a candidate for surgery or not. After I found out that I was a candidate, I decided to go through the surgery.
If I backed down I know that I would have been wondering for the rest of my life: should I have gone through the surgery or not? I did not want to live the rest of my life with that heavy question on my shoulders.
Get a 2nd opinion if you feel comfortable. If you can get referrals to other patients who have gone through brain surgery please contact them. It will help you with this decision to go through surgery or not.
Candi, You are very correct about neurological medications. Where I work of course generic brands are trying to be used first accept in the case of anyone using medications for neurological reasons (depression, epilepsy etc). There have been too many incidents with seizures happening when patients have been switched from brand to generic.
The reason why doctors do not want to change is there may be too many liability law suits if a patient is switched from brand to generic and in our case a seizure happens. My neurologist and I discussed this and we both agreed that it was not worth the switch.
It is the insurance companies that we need to watch out for because they have denied paying for brand names and want patients to switch to generic for seizure disorders. We pay so much for insurance and you would think that they would realize how much I am saving them by only having to see my neurolgist once per year compared to every 3-6 months in the past!
I am concerned how I am going to pay for the two medications as I get older and god only knows if I will be others due to age.
Candi, Thanks for the link. I have very possitive about this length of time going seizure free, but I will not get my hopes up too high. It seems as though the surgery controlled one type of seizure from one part of the brain and the two medications I am on are controlling the seizures that were coming from the sides that could not be operated on.
Even if a seizure did happen the 1st thing I would do is give up the car keys. I refuse to drive if a seizure happened because I do not want to harm another human being.
Because I never learned to drive until I was 40, I learned how to adapt my life without a vehicle and saved alot of money.