Journal Entry for November 20, 2007
November 20, 2007 4:04pm
LovingGrayGhost 
-
About Me
LovingGrayGhost
-
About Me
I have started having epilepsy at 13yrs.They have been uncontrollable. Medicines never controlled them. I was told I wasn't a canidate for any of the epilepsy surgeries. I was thinking of a VNS that's when my Dr. stated they where not doing them there, at Mass General Hospital in Ma.They are one of the Hospials in the country that where doing the Clinical Trail for people with epilepsy that is on the idea of a VNS. It's called a RNS- Responsive NeuroStimulator. It is put in your cortex of your skull and has a cord like a VNS and electrodes but the cord is not as long and that is the helping of controlling the seizures better because the shorter cord the faster you get the Stimulation control. The cord is as long as the length it needs to be to go to where your chip of epilepsy is from the stimulator. The Stimulator is made from the company NEUROPACE. I never thought I would do this seeing it isn't FDA Approved yet, but when you think of all the surgeries now that are helping people they had to be in a CLINICAL TRAIL to be able to get FDA APPOVED. I want a better quality of life.I hope that doing this for myself will someday help others that have had uncontrollable epilepsy with meds.I did this 10/12/06.
I have started having epilepsy at 13yrs.They have been uncontrollable. Medicines never controlled them. I was told I wasn't a canidate for any of the epilepsy surgeries. I was thinking of a VNS that's when my Dr. stated they where not doing them there, at Mass General Hospital in Ma.They are one of the Hospials in the country that where doing the Clinical Trail for people with epilepsy that is on the idea of a VNS. It's called a RNS- Responsive NeuroStimulator. It is put in your cortex of your skull
-
Interests
I like cats and dogs. I have a Lhasa Apsos.I like medical things.
I like cats and dogs. I have a Lhasa Apsos.I like medical things.
-
-
Recent Activity
- Sorry, there is no activity in the My Activity feed.
-
Journal
-
Hugbook
-
I’m With You
If you are still on this support group, I apologize for not responding for an ENTIRE YEAR to your perfectly legitimate questions. Sorry
Hug
Thanks so much for your comment! big Sunday afternoon Hugs. We haven't heard from the owner yet if we will get the house or not. We keep praying about it. The house is so lovely. I got the results of my MRI and I will see the surgeon On Aug 6 I will probably have to have surgery to releave the pain in my arm and hand. I do the very best I can. I t willtake 2 months for us to get our background checks back. I'm not worried in the least. Just to let you know to that I located my 2 birth brothers in Texas after 51 years. God Bless you alwasy. ~~~~~~~~~~~~~Suzanne
Hug
I meant the pap from the FDA that ask's me every question in the world. I have finally filled them all out now. As for the battery, after the surgery they told me that they are trying to make a rechargable battery for the RNS. So when I have the next surgery for the new battery. Than that will be my last surgery for a while. Then they'll just have to put a wand or something over my head for a little while, and they will get the battery recharged. So we shall see how it all goes. your buddy Shawn
-
Hug
Moe, when you send your EEG info over the lap top. That also sends info on how your battery is. Then at either a doctors visit or a phone call they tell you that a surgery is nedded to have the battery changed. The surgery was so minor it's an out patient surgery just like it was for the VNS. The surgery for me was under an hour, and when I was recovered from the anesthesia, I was able to go home.
-
Hug
Oh as for the green books, I'm still doing mine because i'm still in the study for another 6 months. I'm also having to fill out another form on how it's affecting me so the FDA will know from the majority of people what the side effects and stuff are. The last one I'm doing is in October.
-
Photos
LovingGrayGhost hasn’t uploaded any photos yet
-
Advertisement -
Support Groups
Close Epilepsy & Seizures
LovingGrayGhost hasn’t entered any details for this support group.
-
Groups
