... n her body. She is very thin. When she falls, she had had bruising on it since it sticks out. We are always trying to keep her safe as all of you know. Hope the VNS works for everyone trying it out there. Definitely worth trying.... ... (2 replies)
... We are thinking of having Rebecca's VNS removed. It has been in for 10 years. Battery is no longer working and we don't feel it made a difference for her. ... (2 replies)
... Has anyone had their VNS Removed? ... (1 replies)
... Hi Paula,
I would love to chat with you about your daughters seizures and their triggers. My daughter, like yours, has seizures that are triggered by startling sounds.
You may email me at:
ellen (6 replies)
... I'm thinking about that.Because she has had it turned off for so long, I presume that tells us it is not working. Thanks for the info. on removal as well. Rebecca did well with the insertion. She has had it in for over 5 years and it has been turned off for a few. ... (6 replies)
... So sorry to hear that the VNS has not helped her. I have read that it is pretty simple to remove. ... (6 replies)
... I'm sorry to hear the VNS hasn't worked for your daughter. I'm sure your doctor already spoke to you about the device sometimes taking several months to a year to get up to speed? ... (6 replies)
... since the VNS officially was unsuccessful for our daughter Rebecca, we are hoping to get it removed next year. Has anyone had it removed and if so, any complications? ... (6 replies)
... If it was the model 101 (first version) the wires (leads) will remain but the device itself will be removed in a same day surgery just as they installed it. Faster in reality due to not having to place the wires this time.
Due to the scarring over on the nerve there is no real way they can remove the wire thats up by the neck from the first technique. This may have... (2 replies)
... WoW! They sped up the turn on time. Before it was close to 3 weeks so the body could scar over the leads. Quite a change. The "ramp up" for electrical discharge will take time; assuming that process has not changed.
P.S, don't expect "removal" from medications once they get it up to full strength. a "reduction" of meds is possible. It's case by case.
Future... (3 replies)
... No personal experience with this, but I have seen others post about this on other forums.
It can be removed, but usually they leave the wires in. It is difficult to remove those since it would take microsurgery.
I am sorry it did not help her any. I would talk to the neuro surgeon to have it removed, too, I think. (1 replies)
... Hi - well she slept last night - I slept in her room and was overjoyed to watch her getting some sleep....previous 2 nights were just about nothing with her having 4 tonic clonics each night....our health ministry provides our family with 2 nights of night nursing so I got sleep for one of them.....thanks for the support....Rebecca continues to teach us.......loving... (6 replies)
... Hi Paula,
It sure sounds like you are having a rough time of late. I have no advise only support!
Is she sleeping any better?
Your family remain in my thoughts and prayers.
Love and light (6 replies)
... to get the vns turned off and schedule removal. ... (1 replies)
... pically done with the patient awake for that very reason. The brain is truly amazing, and after this surgery as in other procedures, the body compensates for the removal of a segment. There is some rewiring that takes place after this surgery over time. I know you are dealing with some tough issues. ... (53 replies)
... Hi Jill,
Generalized activity is seizure activity that involves the whole brain. It also sounds that the doctors believe she is showing activity all of the time, which would be the subclinical activity Kayakmom mentioned.
I would recommend she seek an Epilepsy specialist, called an Epileptologist. They have extra training in dealing with just Epilepsy. You can do a... (2 replies)