Thank you Angie for the detailed response! Tim, As you can see we all have a journey and some are seizure free, some have a drastic reductions with medications and or other options.
I agree with Angie about getting a 2nd opinion from another doctor especially and Epileptologist.
I was also shuffled around with doctors f since 1974. I started out with a neurologist and then three other Epileptologists. I had to change from one Epileptologist to a new one because my insurance would not cover the current one when I moved from Wisconsin to Minnesota.
I made a decision on my own to change to a 3rd Epileptologist specialist because my seizures were not reducing and I needed to see what another doctor's opinion would be.
We just need to keep a positive outlook and accept that yes we may never be seizure free, but if the seizures can be reduced with medications and without major side effects from the medications that is a start in the right directions.
If other options for treatment come up then that will be another journey.
If you are prescribed other medications for your other health conditions along with your seizure medications I would suggest showing a pharmacist the entire list of medications and vitamins if you are taking any.
A pharmacist will view the medications you are prescribed and check to see if there may be any counter-interactions between the medications which could reduce the effectiveness.
A pharmacist will also explain what foods and liquids should be taken with or without your medications and what time of the day other medications should be taken.
Doctors may know the medications to prescribe for patients, but the doctors did not go to pharmacy school and learn all of the side effects and what medications may not work well together.
It sounds like a lot to absorb, but I learned so much from pharmacists and ended up working in a pharmacy office because I really enjoy learning from them.
Tim, you are going in the right direction if you have the testing done then at least you know what your options are. You can then focus on the current situation with your mother and follow through with surgery later.
As Angie said, Bless you for being there for your mother she should be very proud of you.
With the MRI I know there are stand up ones used for reasons such as claustrophobia. DanaView Thread
Tim, I think EMU stands for Epilepsy Medical Unit at least that is what I can figure out. It sounds like you had an EEG, but the EEG's can easily miss your seizures that is why Angie gave the information regarding the hospital stay where the patient is hooked up to an EEG machine 24 hours. You are in a hospital bed, but you have the ability to get out and move around with the EEG hooked up to you.
Seizures can start so quickly and move throughout the brain so fast that a regular EEG test cannot pick up the exact area where the seizures start.
My other questions are: 1. Is your doctor a neurologist or Epileptologist. An Epileptologist specializes specifically with seizure disorders, 2. Did your doctor talk about having an MRI done? 3. If there are no specialists with Epileptology in your area, you may need get a referral to another city where there is one. I had to get from Wisconsin to the Minneapolis Minnesota area to find the more detailed specialist. 4. Ask your current doctor about Epilepsy Foundations in the area you live. 5. Use the computer check out the Epilepsy Foundation of America to help you find an Epilepsy foundation or support group near you. 6. A support group may give you the ability to meet others who can give you the support you need during this time. 7. If your EEG showed up normal that is where the more detailed testing should be done, hooked up to the EEG to monitor your brain waves during the day and when you are asleep. 8. Since you have other medical issues with your mother to deal with you may have to postpone the testing, but keep moving forward and know that you have several of us here on this sight who are backing you up 100%! DanaView Thread
Tim, there will be more testing done to find out if you are actually a candidate for surgery, go ahead and find out if you are. If you decide to back out that will be your option.
Brain surgery is much more precise than it was years ago. I had a right lateral temple lobectomy after doctors did testing to find out where the seizures were starting from in the brain.
Once doctors find the starting point they will check to see if this part of your brain is your dominant side or non-dominant side.
Brain surgery sounds scary at 1st but if you do not check if you are a candidate you will be asking yourself years later should I have looked into it or not?
Surgery takes time and patience for recovery as long as you have family or friends that can be there for support it is worth the effort.
Not every surgery comes out completely seizure free, but if the seizures can be reduced that is the important part.
After the surgery I had back in 2001 I know have been seizure free. I still am prescribed two medications because the seizures I had were starting from multiple areas. The surgery controlled one side and the medications are controlling the other seizures.
I was off work from late January 2001 and back to work beginning of April 2001.
There are other options if you are not a candidate, but check it out and connect with others that have had surgery. I am going to contact a friend who is a part of this sight who also had surgery.
Pros: your life will change to get freedom You will meet others who have gone through it You can help others to be a mentor for them Your medication dosage may be reduced Cons: sore head at first headaches during recovery time you may have some mild depression but that is common at first . You may still have a seizure during your recovery time It may take 6 months to a year to fully recovery
After all that it was a whole new life! DanaView Thread
taylor, this is a very difficult time for you and the testing, waiting for the test results and the thought of medications can be very scary especially for the parents and grandparents. Many times EEG and CT scans come back normal even when we have had the visible seizures as your granddaughter has already experienced. please keep in mind this information: If your granddaughter is diagnosed with a seizure disorder she should see the next specialist up called an epileptologist. This is a doctor who specialized with epilepsy (seizure disorders).
This may or may not be a seizure disorder diagnosis, there could be reactions to specific foods or other things like small scar tissue on the brain which the MRI may or may not show. Your granddaughter's seizures sound very similar to what I experienced and others on this sight.
our thoughts are with you during this journey and we want to know that you are not alone, thousands of children and adults have this diagnosis. Tips: 1 Keep asking questions to the doctor 2. ask questions about the medications with the pharmacist to understand how the medications should be taken properly what time of the day and with or without food. 3. Not everyone has the side effects that are listed so do not get to afraid from what is listed. 4. Have your family keep a journal of when the seizures happened (time of the day) 5. Keep a journal of what your grand daughter had for food, this can also help the doctors. 6. If your daughter is diagnosed with seizure disorder ask doctors or check out support groups for parents & family members for children with seizures. 7. Epilepsy Foundation of America I know other friends will be responding soon.View Thread
Hello wahoo, Angie contacted me and I agree with her response 100% about documenting and watching carefully during your friend's recovering. One piece of advice is to let your friend get rest and help your friend realize that we just do not jump back into our normal routine after surgery. Just a simple trip to the grocery store with my mother several days after arriving home made me very tired and triggered a seizure which is very normal.
It takes time for our brains to heal and it is common for seizures to happen during the 1st few months after surgery so help your friend not to get down if a seizure happens after surgery
Simple things like good movies or an easy card game helped me to get my memory going. Give yourself and your friend inspiration to take this recovery one day at a time. Patience helps to the road to recovery.
Best wishes and bless you helping your friend. I had a wonderful mother helping me after, but we started to drive each other crazy after about one week and it helped to have an old friend from high school come and visit.
I did return to work after about a month of recovery, but I started out working half days to get myself back into the routine before going back full time.
Hello we are happy to help you out. As Candi pointed out what tests have you had done? Of course the most common is the EEG, but that can miss seizure activity since we really do not know when our seizures are going to occur.
Doctors never could find anything wrong with my brain, no problems during my birth, no head injuries, no allergies so the neurologist were pretty perplexed, but not as much as I was.
An MRI and other scans later in my life found very small amounts of scar tissue on the brain so the doctors came to that conclusion that was the problem, but they were not completely sure.
As Candi commented find another specialist. If you have not seen an Epileptologist please do to get more opinions to compare. Please do not give up because we can still have a life to live even if you are having seizures and the more perserverence you have the more you will learn.
Amy, I agree 100% with Candi and Angie. Your husband's mother is a threat to your husband, you and herself. Mother in law need psychological help now!
The authorities need to be notified to get your husband out of the captivity he is now in. This can be be a health threat to everyone. Get a restraining order because you are his wife and you need to be together.
As Candi said get your name as an emergency contact and take his mother off. Please contact his neurological doctor to make sure you are the primary contact not his mother.
My prayers are with you and please keep fighting for his freedom that is why we live in America!