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amy71

Is it even worth going through another surgery?

Hi everyone... I had a brain tumor removed back when I was 16. It never stopped my seizures. i'm 41 now. My Dr. tells me they've come a long way now and can pin point more where the seizures are coming from to try to stop them. I'm om Lamictal, topamax, and onfi and have less seizures now then I ever have. I finally gave up driving 8 years ago after I had my son because of numerous fender benders and knew I shouldn't have been on the road. Thats my main goal to want to drive again.. I can't stand this!!!!!  But if I do go through a second brain surgery and its not successful, ill be devastated.. I'm already missing a big chunk of my brain due to the tumor removal, do I really want any more removed??????  Any advice from anyone else that has gone through any kind of surgery???

 

Thanks

Comments

Re: Is it even worth going through another surgery?

I read you post  and I understand your concerns. Most of the people in here have been devastated in more than 1 way in our lives.

As for surgery being better It has come a long with. I have heard that form people. I also know that the medications being created today are far better than they were in the past. Many of the old medicines are still being used today because they worked well. I know I was on medications for epilepsy before you were ever thought of.

You posted that you had a tumor removed which is great . However you did not mention what type of seizures you have or the cause of your seizures. That is important and your neuro would have to know that information. He would do a study to find out where your seizure activity is in your brain. Which lobe it is coming from? Is there activity in more than 1 lobe. He needs as much information as he can get so that information can be looked at by the neurosurgeon that will be doing the surgery. Unless he is the neurosurgeon himself.

My neurologist has had the procedures done for some of his patients with great success. He has looked at my information and becasue I hve more than 1 lobe with scrar tissue I am not a candidate for surgery. I have been in drugs studies for new medications which are now on the market some of which have fewer side effects then many that are out there being used now. 

Have a meeting with your neuro and ask questions and find out what he will need to know. QUestion him as to what tests will need to be done andask all your questions. Tell him what your iasues are and discusse ALL THE OPTIONS that are  available. Once you have done that and discussed it with your imediate family ask for their input. Until you have that information and their input you do need to relax and try not to let things stress you. There are triggers to many seizures. If you are sick. Taking other medications can interfer with your AED's so relax because stress triggers mine. If I get really stress I can have a seizure. 

I will watch for this post and chech now and then but understand you are not alone and many of us have been devastated. I know I have been many times osme due to my epilepsy while others are just thru life experiances...

Hope I helped in some way

I hope you do get seizure free    Do hug you kid and tell hin he is loved.

Re: Is it even worth going through another surgery?

Hello amy71,

 I had surgery 2 years ago with my entire temporal lobe REMOVED after trying and failing 10 medications in decades.  Now I am seiure free.  Since your post reveals limited information about the tumor and type of seizures, it's very hard to give you advice.  I have a friend whose older brother had a tumor removed alongside hydrocephalus when he was a teenager and has epilepsy since then.  He is NOT a candidate for epilepsy surgery of any kind because of the drainage tubes implanted in his brain through the spinal column.

 All I can say is that be very open to your neurologist; ask him /her lots of question, listen to their exoert opinions, and make your decision from there. 

God bless you,

JC