status

[js34]

I have had epilepsy for 22 years and had epilepsy surgery in july 08. i started having seizures again two weeks ago. they are not the clonic I was having but complex parial. today was the worst day since recovery. I had 8 seizures today, Dr. told me to go to ER, and I asked if there was anything else I could do. She made a deal with me and called in a perscription for Adavan. told me that if I have anymore after taking that I need to go to ER. I'm afraid to go to sleep, thats when they are worst. Could I really be in Status if I am doing ok between seizures?

[RobinN]

Have any of you looked into nutritional changes?

[curse]

The surgery was for the removal of an AVM, anni & another little piece in there that caused the seizures & migraines.So the surgery did lower the number of siezures. The effects su#k. Poor memory, energy, etc.,you name it! Different drugs for different folks, so your Grandmothers side effects may be no big thing for her.  

[lynsey579]

hey there i just read your letter did the surgery do anything for your epilepsy?? i have grandmal fits and absent sezuires they have put it down to absent epilepsy and generalized sezuires. so there is no point in me even asken bout that  just intressted on the effects that it has lynsey x

[curse]

I'm curious why the neuro's are against the VNS? That is where my Neuro. attempted to send me for one. Of course, I refused for the same reason Nancy mentioned. I searched for info. for over a year & read more bad results than good.

[brainpain]

wow i was thinking of having that sugery done. i think ill leave well enough alone ! doctors allways tell you about the good and leave out the bad.ive never heard about the sugery doing that to anyone. i have grandmal seizures and they are controled with meds,i have mine in my sleep to.sorry to hear about both of your stories. and thanks for them to, i wont have the sugery done

[js34]

No I did not have that done. I had a right temporal lobectomy. I did meet with a rep several years ago about the device and felt she was trying to sell it to me. My neurologist and neurosergeon at the Cleveland Clinic are against it very much so. I had asked him about it during my visit before surgery. I also agree with you about our wonderful Gov. Tons of ****. I wish your sister best of luck.

[Nancy256]

Hi status, My name is Nancy and I read you letter. You stated you had epilepsy surgery in July 08. Please tell me you did not have a vagal nerve stimulator implanted. My sister Judy had one implanted in March of this year and now she is a patient in a phychiatric hospital. She has developed a severe phycosis and has gone from being a registered nurse,single mom and purchasing her own home to being a patient in a phychiatric hospital. I have written senators, congressmen, President Bush and Vice President Chaney and have been involved in a heated cyberspace exchange with Bonnie Alderton of the FDA to demand that this device be removed from the public market. The Supreme Court made a decision called "Riegel v. Medtronics" that would not allow companies to be sued who obtained PMA {pre-market-approval} for their medical devices. In July a bill was submitted before Congress to reverse this decision. This can be a lengthly process since it would have to be then sent through the House, Senate and then approved by the President. This bill needs to go through!! Anybody who has had any medical devices implanted that have proved to be sub-standard and faulty needs to contact their Congressmen and Senators and the White House. Look up the surgery you had done on the computer and type in "Have there been any fatalities or serious injuries reported due to this surgery" and I sure hope you don't get the list as long as my arm like I did. We too often assume because it says FDA approved that it is okay. Type in "FDA approved devices and medicines that have caused serious injuries and death" and I guarentee you you will be floored. Have you noticed all the Perscription drug advertisements that are now on television? Every day there are two or three more! Where are all these drugs coming from and who is doing all this testing? I believe the public needs to take serious notice and beware because if I didn't know any better I'd say we were all being used as lab rats!!