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[monroe26]

My daughter is about to turn 16, diagnosed with Epilepsy at 5 years old. with partial complex and generalized seizures. Tried several meds, but none subdued the seizures and she was having 100's of subclinical seizures a day. They decided after doing a video eeg to put the VNS implant in Oct 2003. All her eegs prior and after were abnormal even on full meds. A year after the VNS they wanted us to attempt to remove her from the three meds, we tried and she had major seizure (when she had big ones, she would stop breathing). So we went back up on the meds, she was in special ed and in 2005 she had tonsil and adnoid removal surg., because she had sleep apnea. We moved and she began seeing a Dr. at UNC, after several months, growing, and turning up the VNS, she had her 1st clean eeg. So, we started taking her off her meds and after a year she was med free. With the VNS turned up as much as they could for her weight and height. We then got orders for Italy in 2008 and was supposed to do an eeg post meds, but tricare messed up the referral and it was never done. She was doing well, no seizures that we could see without an eeg and doing  good in regular school classes. Now the VNS is causing a lot of pain and the lead wire is poking out. They are sending her to an Italian dr. to do an eeg on Fri. Because the VNS needs to be removed or fixed. My question is since the VNS is still on, if she is having seizures will they show on the eeg? If it is removed could they possibly come back? We thought since she had a clean eeg and has been off meds for couple of years that she must have gone into remission, is this logical? Since the VNS is still working. Should the VNS be turned off prior to doing the EEG to make sure it isn't suppressing the seizures? Sorry, about all the info, just need a little insight, we have no one here to talk to, and paranoia is setting in. Thanks in advance. 

[Dispatch]

   HI Monroe26, and WELCOME to the board!

I'm a hit and miss here on the board lately, and am sorry I haven't gotten to your post till now.

Your daughter sounds to have had great success with VNS which is awesome.  Although I have seizures, I was implanted for depression, so with that in mind, I am not as knowledgeable about VNS for the use in seizures as I am for its use in depression...but...standard for both is it is not supposed to be painful.

Did VNS cause her sleep apnea?  I would think if she is still having seizures, it would show on an EEG if they are occurring during the testing.  I would think it would be appropriate to ask the doc to shut the VNS off during the testing just to see if a seizure would happen, but then again, I wouldn't want to induce a seizure so...Is the lead fractured making it stick out?

Hope to hear more about your daughter's doc visit.  I hope all goes well and you get the answers you're looking for.

Take care!

[monroe26]

Hi, I am not sure if the VNS caused her sleep apnea, we never thought about the two being linked before. She did develop it after the VNS was put it, but I just assumed I hadn't noticed her breathing difficulties before. They are going to try and send her somewhere they can shut the vns off and then do an eeg. Just to be sure, because the lead isn't poking through the skin, it is just kinked so, that is is causing her pain and you can feel it under the skin. So we need to know if she still needs the vns, to decide if it needs to be fixed or removed alltogether. She had it put in when she was 8 now she is about to turn 16, so a lot of developing has gone on and her vns has definitely moved. This October is will be 7 years and I am sure the battery will be failing soon, although it is still working now, we can hear her voice change when it comes on. I hope this is the end of the road for her journey with epilepsy, but I am very apprehensive. Thank you for your reply.

[Dispatch]

  Good Morning monroe26!

If you have a moment, click on the "Articles and Links" tab above and read the manuals.  VNS can and does cause sleep apnea in some folks.  Birdbomb (our Site Administrator) developed this after VNS was implanted for her seizures, and we've got several more Members here who have developed it as well.  Fortunately, I didn't.  I do have shortness of breath though, but that is from vagal nerve damage, and each cig I smoke doesn't help it either LOL!.

It's possible to replace faulty leads.  Guess it depends on the surgeon, scar tissue, etc.  Considering there's a kink in the lead, I am curious if that's the route her doc will take.  Sounds like her battery has lasted a long time which is great!

When you said her VNS has definately moved, are you speaking about the generator?  The manuals also talk about device migration, and it shouldn't do this.  That can be a big problem if it moves around.  It can be secured in the chest wall, and of course that requires another surgery.  Mine migrated quite badly, and upon removal, the surgeon said it was not secured in my chest like the implanting surgeon should have done.  It can either be sewn (SP?) in, or the surgeon can make a "pocket" for it to be secured in.

Since she has had success with the device, how do you feel about having the issues fixed?  How is she doing now with the sleep apnea?  And, how has she tolerated the side effects?  I can certainly appreciate your apprehension!

Please do keep us in the loop about how ya'll are doing!  Take care!

[Birdbomb]

VNS gave me Serious Obstructive Sleep Apnea.  My CPAP is at the highest setting I can tolerate and I also must have oxygen @ 2 liters.  I had a sleep study done before it was implanted and no OSA was reported but after the VNS was implanted, it almost killed me when I had knee replacement surgery.  It states in the manual that asthma and apnea will be worsened by VNS and not to implant VNS in patients who suffer with these disorders.  Only most doctor either don't know that or choose to ignore it.

After so many years and so much growth she should have the leads replaced. Have they checked the leads for impedance? Might be wise to replace the unit too to avoid unnecessary surgery.  7 years service is very good and she has good results.