VNS anyone?

korisue · #1 05-15-2008, 08:58 PM

Hello - i am new here. My daughter Jess, who is almost 4 now, has been having every kind of seizure, including A Typical Infantile Spasms, since she was 3 months old. Her MRI's, CT Scans etc are all normal - Her EEG's on the other hand are not. Her seizures do not originate from any one area. On top of her seizures she has an undiagnosed neurodevelopmental disorder. We have been through a few neurologists and numerous drugs etc etc. We were directed to Dr.Kao, who is awesome, last November who, after going over Jessies history approached us about the VAGUL NERVE STIMULATOR -VNS for short. After a lot of research my husband and I decided it would definately be worth it, and thank God, it was. She had surgery in December and after healing from surgery (about 2-3 weeks) we went back and they turned the stimulator on. To actually have some control and be able to do something when she seized - helped us so much, but much more importantly - it has so changed Jess for the better. I won't go into VNS detail, you can look it up on the net, but after so many meds and treatments have failed - ITS WORKING!! We didn't see a lot of results immediately ( which is normal), but w the VNS her seizures were less severe and happening less and less. Currently she is 33 days seizure free and everything about her is improving - from her physical to her mental. It is so woderful to have our happy girl back again and to see daily improvement. I haven't seen any reference to the VNS so wanted to share with you all. It may not be for everyone but if you or a loved one has epilepsy etc. please, please look into it - it has changed Jessica'
s and our lives and i am so thankful we finally found a neurologist who doesn't accept what is and fights to make it better. God bless !

**RobinN** · #2 05-15-2008, 10:56 PM

Hi Korisue - I am glad that this has been working for Jessica.
I found many references to it here, I just chose to go an alternative route first. We began with nutritional changes, tried four different meds that didn't work for my daughter, so she is now supplemented with specific vitamins and minerals for brain health. We also decided to try Neurofeedback. It is a non-surgical alternative, and we too have seen improvement.

The most important part of this conversation though, is that you did your research and made a decision. Our approach here at CWE is to discuss all forms of therapy, the known and the unknown, and not dismiss anyone for the decisions that they make.

I am really thankful that you are seeing positive results. Keep up the good work.
Give a hug to Jess.

**Bernard** · #3 05-16-2008, 07:59 AM

Hi korisue, welcome to the forum.

I've read several of your other posts already, and am glad you started this thread so we could say hello to you without dragging another discussion off topic.

It sounds like your daughter has had it pretty rough. I'm really glad to hear the VNS is working for her!

Kids are so enjoyable at 4 years old. Mine cracks me up every day.

**Birdbomb** · #4 05-16-2008, 04:40 PM

Welcome korisue

May your daughter continue to have success! Have you been to my site yet?

hawke86 · #5 05-16-2008, 04:42 PM

I have had mine for about six years.

paradise survivor · #6 05-26-2008, 03:00 PM

Thinkin about it...hate the meds! They don't work for me and they really mess with my quality of life..any thoughts on the subject?

korisue · #7 05-26-2008, 03:34 PM

Thank all:-) Jess is still seizure free- almost 45 days now. She has gained almost 3 pounds and is still so happy! When she is not having seizures everything about her is so much better!

We thought about the keto diet, atkins, etc etc etc - but with her not being able to do solids yet still those were out of the question, she would have starved first.

Paradise--- It is different for each person, and the best info you can get on it is the VNS website and mailers they will send you with FAQ's and a video etc. Alot of people for one reason or another don't see improvements with meds, diets etc. We went through the vitamins and all that also but they just made her miserable and didn't help the seizures or her overall. It is a very minor surgery with fast healing time. She was in the OR for less than and hour - although we made the decision to have it done, watching her being taken away on that bed was one of the hardest things we've ever dealt with - including the seizures, but she recovered so quick and healed beautiful and now has been seizure free - well, basically i'd do it all again in a heartbeat. We are very close to weaning her off the Depakote - we actually didn't turn up the setting on her VNS at the last appt because she has been so stable. We'll continue with our appointments etc. but if this keeps up hopefully by the end of the year she'll be off the meds!!

**Bernard** · #8 05-26-2008, 03:41 PM

Originally Posted by korisue

:

Jess is still seizure free- almost 45 days now. She has gained almost 3 pounds and is still so happy!

korisue · #9 05-26-2008, 04:07 PM

Wow - Bernard, I was actually really shocked. That link is an excellent listing of treatments available, but i don't believe it comes close to even being comparable for Jessica or any other person who does not have cognitive abilities, eating issues, etc etc. And it really suprises me that brain surgeries are so high up there - not all people with seizures can pinpoint where they are originating from in the brain- as in jessica's case. I understand the adverse effects of the VNS, but that rating seemed to just slam VNS and not point out any good effects at all, which isn't right. The positve needs to be posted with the negative. I firmly believe that VNS is not for everyone and it does indeed perform differntly with each person, but it should definately not be slammed down. As stated we have tried way to many meds (which have worse side effects), vitamins, the shots, etc. - can't do diets because of her eating problems etc etc. Guess what it comes down to is personal choice and I firmly believe that each treatment probably works wonders for some - that being the point. Each person and medical situation is unique and must be looked at that way and not as a whole. Guess Jess is one the Really lucky ones that the VNS has done wonders for. The surgery and battery replacements are no different than for pacemakers - I am not a spokesperson for VNS, but i believe that it must be individually researched, as with all treatments.

**Bernard** · #10 05-26-2008, 04:34 PM

If you are referring to the chart, yes, there are some subjective scores included there (as stated) and the system doesn't account for the fact that some treatments are not appropriate or available for everyone. It's merely there to provide information and awareness of alternatives. It's not a final authority by any means - just a starting point for people to get information and think about the options in a big picture manner.

BTW, if you click on the links for any of the options listed, it will bring up a page with more information detailing how/why the option was scored.

korisue · #11 05-26-2008, 04:52 PM

Thank you. I checked them out, but you stated it beautifully when you said they are not appropriate or available for everyone :-)

I am very glad i stumbled upon this site and the was given the link to the VNS site. I will probably have quite a few eye openers, which is good. Makes ya think a bit more!

I still believe in the VNS for Jessica and am so sorry there are so many out there that appear to have had nothing but problems with it - I pray they can find something that will help them.

We are still in the early stages of VNS and with the info available here and VNS site i will know what to watch for if there are any problems.

Thank you :-)