Epilepsy Community

I meant to say HAVING SEIZURES

hi you coauld ask your neruo about a VNS, rahter than surgey...

LEss invasive and can be controled by you AND your doc.

I have one and it woks great.

YOu can rub the VNS with a very high powered magnet you get in the kit that they give you after t he surgery and swipe the VNS when you feel one coming on and it will stop the szs in thier tracks and auras as well.

just a suggestion for you, not going agaisnt what you adn your doc decided. I was NOT a candidate for surgery, so I had to have the VNS or I would NOT be here. It would have killed me (the EP). I was going down hill fast.

I hit a tree head-on on Dec 3rd of 02 and had sever whip-lash and a head injury from it. I have had one child die from a rare form of JME (juvinile Myoclonic EPilepsy) and she was only 13 at the time. I have one more at home who just tuenred 16 and a 41 yr old husband. Iam 38. We have a dog that by chance also has epilepsy as well

I take 400 mgs of VImpat, 600 mgs of Lamictal, and 3 mgs of Klonopin.

See if he can adjust your meds some or as Candi says ride the med merry-go round.

HE will get it right eventually.

Hawii Girl.


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Hello blondchic,

Have you had or considered a Second Opinion? Have you done much 'homework' on your other 'options'? Like the VNS or Diets, Chiropractic, Biofeedback, etc? You realize that Surgery may Not be an Option? You will need to be tested & monitored in an EMU. (Epilepsy Monitoring Unit) The tests Don't hurt. It's just BORING!!!

My daughter was recommended for surgery, at one point. She was Pleased w/ what she read back then. Her Hubby & I were Supportive. But, the Final Decision Would have been Hers. Then the Hospital "lost" her records & it took 5 more Yrs of meds & testing to find out her seizures were No Longer 'operable'.

But, Knowledge, Surgery techniques Have Improved Since. Watch for relies from Angie & Dana. First Hand Experience. It Helps. Keep asking questions? Lean on Us for Support. Whatever You decide, Let us Know!

Hugs! Love Candi

my brother has had bad seizures ever since he was 3 and is 57 now. Mom and Dad tried to take him every where and do every thing. A long time ago a doctor told them never let anyone opperate on him. Well they didn't and yrs. went by a doctor at an epilepsy center in Memphis told them he could do surgery and it would make him 90% seisure free and no side effects. A they grew older they thought well we may need to do something and they let him opperate and the first time not much change so they did it again and now he is just here and like a retarded person. He don't laugh, talk and has no emotions. He has no sense of comprehension. You can make him talk but he just repeats what you say. We wish we had never had him go to surgery. They cliped 3/4 of the nerves connecting one side of the brain with the other side.
ladyc222

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.

Please do not give up!
Dana

Hi "blondi",

Dana texted me about you last nite. I was having problems logging on or I would have responded to you sooner.

I had a lobectomy in '02. My meds had finally run their course of effectiveness and my seizures were getting worse.
I was getting frustrated, and so were the docs.

I went through many tests, out-patient and in-patient, before it was determined that I was a candidate. When I found out that I was, I was not hesistant in saying "let's do it!"

The surgery has removed more than 95% of my seizure activity and my meds have been reduced.

I too would be wondering the "what if " had I not gone through with the lobectomy. I have no regrets about it.

As Dana and Candi suggest, please seek another opinion before you definitely say no. Surgery has changed so much over the yrs and can be quite effective in seeking the results that you hope for.

Please do not listen to the scary side of a lobectomy. As Dana said, there are risks involved in all operations.

What specifically are your concerns? The tests that are usually performed to see if one is a good candidate will help locate your other functions as well as locating the seizure origins. You know, speech, mobility, memory, etc. Since my surgerey in '02, my memory is much better.

Ask your doctor if there are any patients who have had this procedure who would be willing to talk with you. That's how Dana and me. Our epileptologists hooked us up. Dana was,and still is, a good support to me. If there is an epilepsy support group near you, now would be the time for a visit.

No one understands how you are feeling better than those whose footprints are along the same path. We're here for you.

Read my story and it might help you. Check with us as soon as you can. Don't give up your fight against ep.

angie

To read Angie's story or Mine just clik on our UserID. I do hope you are still reading/watching your post & others'.

Love Candi

you don't "try" surgerty. either you do it or you do not.

Trying it is like being a little bit pregnant

how about looking into the VNS?

it can be reversable as it can be explanted if it dies not work.

IT can be controlled by BOTH you and you doc at both ends,

I have one and it works great for me,.

You can not change your mind in the middle of the surgery and say "whopps I changed my mind. ONce you start it there is no turning back.

VNS is also for szs that do not respong to meds as well adn is not as invasive.

hawiian girl

A New treatment. Sounds similar to a Pace Maker

Brain Stimulator Shown to Reduce 'untreatable' Epileptic Seizures. Use your Search Engine or maybe it is Posted on the Epilepsy Foundation Site.

hi Candi,

I thuoght that the Deep Brain stiution was used for Parkinsons. If it is used for non stoppable SZS then that is cool, one more option for us.

I never knew that it is. Are they still working on making it a real option or is it a lready out?

just curious.

NAncy

Yes, it started out for PPL w/ Parkinson's & essential tremors. It has been tested on PPL w/ refractory (med/treatment resistant) Epilepsy, since late 2005, in 32 States, for 3 YRS. Quote: "First of its kind study" & there is a # to call for more Info, for PPL w/ Epilepsy. HFCEP Epilepsy Hotline: 313-816-3200

So, I am gonna assume they Have made it available in some areas. This was written up in the current issue of Neurology & featured on www.newswise.com. Source: Henry Ford Health Center.

Love Candi

Please do make surgery sound like the worst decision to make. The doctors decide if you are a candidate for surgery AND the VNS. In my case if surgery was not an option I would have gotten the VNS.

This is team work to give support to each other for medications, side effects of medications, questions about medications, VNS questions, surgery questions and to be there for each other.

Surgery is not evil it is a miracle. VNS is a miracle and life is a miracle so lets support each other.

Dana

I am NOT saying surgery is not a bad thing all I was trying to say once you start it you ca not go back you must be sure that is what you want to do adn if your doc thinks you are a good candiate for it. That is all. I was not tring to make it a badd thing at all.

I have the VNS and it has saved my life. I was litteraly dying from my ep. I had no choice I was reffered to a doc thta has put in hundreds of these and it has turned out great. I can swipe szs away adn auras as well.

Yes it is a mirical for me.

I know nothing about surgery that is why I said once you tart it you can not llok back beacause it may not work for you or some others. It just depends on the person cause every one is different.

IA also may not work as well.

I just don't want to see you have it done nad not work and have you all upset becuase you are still having szs. That would hurt everyone to hear that I am sure.

I wish you the best of luck wether you ahve the surgery r the VNS.

I wuld want you to have surgery in your case.

GOd bless in wahtever you do and know that I wil pray that God will guid the syrgeion's hands to get the surgery done which ever way you decide to go!

HI Girl

Hi hawaiin_girl,

Dana, aka clarinet2, is having trouble with her internet at the moment. So, I'm responding for her.

She is concerned that some of the new readers are being misled/confused by how some of us might be interpreting/presenting the possible outcomes of various medical therapies for ep treatment.

You say that once you start on the road towards surgery that there is no turning back. Do you mean that once you've decided to go for the surgery that there is no turning back or after it has been done?

Before surgery is done you do have the op to change your mind. The surgical team asked me when I was on the table if I was sure and wanted to still do the lobectomy. There is an opportunity, or open window, for the patient to have a change of heart.

I'm sure it is that way with the VNS, isn't it? Lobectomies or VNSs are possibilities to help eliminate or reduce our seizures. It will always be an individual choice regarding seizure type, location, frequency, and comfort.

I am pleased with the outcome of my '02 lobectomy. I had no fears. Dana was a great mentor who has become a non-blood sister to me. Again I say that her concerns are that the newly diagnosed, or any body with questions, might be frightened if one appears to be totally shunning brain surgeries.

Individuality is an important aspect of living with epilepsy. We all have different recipes for the same/similiar dishes. Coke, Pepsi, RC, 7-Up are all soft drinks with many similiar fomulas but have a distinct difference.

Everybody have a good day.
angie