Hi all well we get to see my daughters proffesor on monday. I have had it put to me that we can turn it off all together or seen she is still getting side affects on a low setting that we can just keep ramping. Now my daughter can not speak for herself although i do know that it is all making her feel very low and the school have also said this to us. School have also said she has started to loose the ability to grasp objects as well as she could do and her consuntraion levels are a lot worse.
Now would you rather put up with all the side affects of coughing , sneezing and swallowing difficulties plus the voice issue or have seizures. Its a hard one for me to decided. She has around 4 to 6 convulsant seizures a month and is quite twitchy on a daily basis.
I think its not fair that we have to decide this. I know the voice and swallowing issues will not clear up straight away as i feel that they have damaged her vaguel nerve. Does anyone know if this repairs its self. I am going to ask if they can put a camera down to have a look. Is there any real pluses to having it removed. I do not think they will remove the wire just to box.
Please help me to understand how it is affecting her.

:D Hi Bawden2!

Thanks for the update on your daughter. You certainly have a tough decision to make. Considering the school is now noticing issues, that must put added pressure on you. I am sorry to hear you and your daughter have had to go thru these problems.

I am not sure if the vagus nerve can repair itself like a persons liver can. It can heal, but whether it can do a total repair is something I'm not sure about. That would be a great question to ask the doctors, and please fill us in on the answer.

If you want to go the route of having the device removed, I don't see why the docs wouldn't make a sincere attempt to remove the coils as well. Some doctors don't want to even take the chance because it is risky, but, it is possible to have a complete removal-I, and others here on the board have had complete removal.

Is it her vocal cords that are injured? I think it's a good idea to ask they take a look down her throat to assess that. If this were me having to make this decision, I would consider having the device shut off for a few months to let her vagus nerve and vocal cords heal from the trauma they have been thru. The surgery itself traumatizes both those, then stimulation adds to it. Since she has had little to no luck with better seizure control with the device activating, having it off could give her vagus nerve and vocal cords good time to heal, then in a few months if you want to give it a go again, you can. Once the device is out, it's a done deal. These are things you can bring up to her docs and see what their opinion is, but in the end, since she is the one suffering and you are the one who is suffering right along watching your child go thru this, you'll be her biggest advocate.

On the other hand, if you feel you don't want to chance having her go thru these side effects she has been experiencing again in a few more months, then shutting it off and removing it would be something you'd want to consider and talk over with her docs. Maybe time for the vagus nerve and her vocal cords to heal will be the trick. In some people, that is all it has taken for them. Also, having it off for a few months and then a low stimulation may provide good results for her.

I am sorry I wasn't able to get back with you sooner today. I realize the time difference between us, and it is about close to 2am your time. My computer is giving me real hassles right now.

I am thinking about you and your daughter, and wish you peace as you try and make the best decision you can for your daughter. I look forward to hearing from you again soon!

B)

Thankyou Dispatch :Thanx:

I had a talk with her dad last night and shown him the letter school have sent to the proff as they sent me a copy. We think it is best that the device is turned off. We would lik them to take a look down her throat to see if the nerve is damaged. If in time her voice and swalloing seem to improve then we will look at using the VNS again. If not then we will ask them to remove the device.
I will let you all know how we get on although it will not be until wednesday as we are off to the children's hopice.

I'm sorry that your daughter is having such a hard time.

:D HI bawden2!

Wow, you seem to know what direction you are going with this, and it seems like a good direction. I hope things start to go smoothly right quick for you all! Please keep us updated!

Take care!
B)

PS: :Thanx: for the thank-you & you're welcome-been my pleasure!

Please keep us informed and updated!

Well we saw the Prof on monday and we will have the VNS turned off for now. It will not be turned off until 12th March as the nurse is away and then booked up. We are going to see how her voice and swallowing go over the next 6 months and if it improves we may look at turning it back on. They will try her with a new med once its been turned off but he says she has quite complex seizures. When she has had EEG in the past it either shows up on the left or right or central. Apparently this makes it quite hard to control her seizures with meds. I can not see why we have to wait for it to be turned off and he said himself its on such a low setting that it will not control her seizures . He has also told us that he does not think the surgery or VNS has caused her to almost lose her voice or have swallowing problems. He thinks her health is deteriorating. I am not sure on that but we are seing the Peads on tuesday so we will see what they say.

:D Hi bawden2!

Thanks for the update. I am hoping the next several weeks will go good for you & your daughter. It's too bad the device couldn't have been shut off while you guys were there. Geesh...

I also hope the appointment with the pediatric doctor on Tuesday gives you better answers. It is just too strange she wasn't having these issues prior to VNS, has them now with VNS, but the doc doesn't think VNS caused the issues when it is known it does. I am hoping she gets better & better. At least with the device off for a period of time her vagus nerve and vocal cords will have time to heal.

How are you holding up? I hope you are able to find some time for yourself to have some sort of enjoyment and relaxation.

Please take great care and keep us updated!
B)

Dispatch, I could not have said it better!

You know, if things get really uncomfortable for your daughter, don't hesitate to tape the magnet to her chest to shut the unit off. It really irks me how these doctors give patients the run-around. No problem b4 VNS, then all kinds of problems, but it CAN'T be VNS and then you'll have to WAIT to turn it off.

I'd love to be on the giving end of this treatment to a few select doctors. Just turn the tables and allow then to see first hand, what harm and discomfort they are actually doing to the patient.

Thanks all. I have been a bit stressed about it but i expected no less to be honest. The saying here is been there got the tshirt. Believe me we have been here alot. I will keep at it till i get answers. Thankyou all for being here to help me answer some questions i would not of been able to get answers to else were.

You are more than welcome, we just hope we have been helpful and your daughter gets good treatment. :bigarmhug:

Hi Bawden2,

These guys have pretty much said it all, but I just have to chime in.

I can tell you first hand that the VNS can get very painful even at very low settings. My Doc. loves to tell me that I'm the only person that couln't handle the VNS at the lowest settings.

I guess what I really want to say is if you think it's hurting her in any way you need to demand they shut it off before March. Shutting it off is just a matter of waving a wand over her chest. Like Birdbomb said until that time tape the magnet over the VNS, this will stop the stimulation as well.

I taped my magnet on my VNS and it finally got to the point that I demanded that it be turned off. An on-call doctor came in and turned it off, it had to be done I was in pain.

Good Luck,

Elisa

:D Hey BB! Why Thanks Kind Lady!

:) HI bawden2! HAHA been there got the T-shirt...my Dad says that all the time!

I can only imagine your stress. Please hang in there. I really hope your daughter gets on the mend right quick and those docs get crackin' on getting the device shut off.

Hope to hear from you again soon!

B)

PS: You are more than welcome! :bigarmhug:

We have seen the peadiatrican with Beth today. She has to have a videofluroscopy and chest xray done. It does sound like it has something to do with the VNS and they think its permenant. We now have to watch her closly as she is now prone to pnemonia. We have Cyberonics (think they are called that) coming here on tuesday although the pead said he just mumbled when she talked to him about it

:D HI bawden2!

Oh my goodness...I am really sorry to read the problems your daughter has endured are most likely from VNS, and extremely sorry to read the word permanent. I was sure hoping and praying for some better news. I will continue hoping and praying you all are holding up alright considering what you have been going thru. Did they shut her device off yet?

Yes, the name of the manufacturer is Cyberonics. Not so much a surprise to me your daughter's pediatrician got a mumble from the Rep.

I am at a loss for words what to say at this point. I will be anxiously awaiting your next update about how things are going. Until then my UK Friend, hang in there across the big puddle...I am thinkin' about you all.

B)

Thanks Dispatch. We hope it will be turned off tuesday when cyberonics come to our home. I will let you know how we get on with them.

Hi Bawden,

It seems things are not that promising but having a pediatrician working with you with your daughter's best interest as the key, that is what will help.

Don't be surprised if the Cyberonics Rep does not want to turn off the stimulator, but hold firm if this is what you and the doctor think is best for Beth. Remember the motto: First do no harm.

Please keep us updated and hope Beth feels better soon.

Hugs,
Cindy

:D HI bawden2!

I've done a bit of quick like thinking about your daughters situation and I agree whole heartedly with what Gel posted about not being surprisd if the Cyberonics Rep does not want to shut the device off. I also agree that you will need to stand firm with the Rep that it has been decided by her pediatrician and you that the device needs to be off for the time being.

Do you have a contact # for the Rep that is coming to shut the device off? I believe you should make contact with the Rep to make certain he is bringing the wand to shut it off. If you are uncomfortable talking with the Rep, then you may want to have Beth's pediatrician make contact with the Rep to make sure he is going to shut it off.

Cyberonics does not like to shut devices off or have doctors shut it off. It goes against their positive statistics they have to report to our FDA-Food and Drug Administration.

I had to demand my doctor to shut mine off.

Please keep us in the loop...we are all greatly concerned.

B)

They come to your house?! They are not allowed to program a patient! That's practicing medicine without a license! It must be done by a physician! They can answer a doctor's questions and make suggestions but cannot TELL a doctor what the setting to make. Oh man, this is not good.

Sounds like the ONLY reason that bawden2 is getting a personal visit from a Cyberonics rep is so he can change her mind about having the device turned off.

<_<

Oh man, do I learn something new here everyday!!! THANKS Birdbomb for getting me straight.

Two different Cyberonics Reps were with me at 2 of my initial appointments training the doctor. Now that I think of it, they talked the doc thru it and didn't touch anything.

bawden2, have you considered shutting her device off with the magnet until her doctor shuts it off? I agree with Dennis, the Rep is going to try and change your mind about shutting it off. Here I am thinking things may work differently with Cyberonics in the UK, but to the best of my knowledge, practicing medicine is universal.

My good thoughts are being sent your way.

B)

*** EDITED TO ADD***
Also come to think of it, I can recall all the multiple times I had to talk to someone from Cyberonics about my problems with VNS and was told "We aren't allowed to practice medicine or give a medical opinion, you need to call your doctor." But then there was many times the person(s) ended it with "I don't think it's VNS causing your problems" and/or "I/we have never heard of that happening." : g :

Hi all Cyberonics came today with dd epilepsy nurse, nurse from her respite home and a doctor from our local hospital. They have now agreed that the problems with her voice and swallowing are to do with the coils and that these are attached to the wire so when they replaced the wire the coils had to be replaced as well. I am guessing you guys will know if this is true as up until now they were telling me the coils had not been touched just the wire being redone when it broke as they resited the device. The guy tried to get me to keep the device on and said i had put dd through the surgery for nothing. I was having none of it though and siad she was having coughing and sneezing problems as well. He said they could alter the settings but i said no. So they have switched it off but left the magnet on and apparently we can still swipe which will activate the device but if we do not then it is just off. Its all way to confusing for me i am afraid.

Good for you on insisting that the VNS be shut off. You of all people knows what is best for your child. Trying to lay a guilt trip on you by saying you put your daughter through surgery for nothing sounds like something a Cyberonics rep would say. You might want to ask your doctor exactly how further surgery would alleviate common side effects of the VNS. I do not understand that one.

Thanks. Now am i right in thinking if you hold the magnet over the device it switches it off. He has said the magnet is still on and if we use it when she is having seizures it will activate the device :wacko:

If your daughter starts to have a seizure place the magnet over the device and then remove it.

Placing the magnet over the device and keeping it there will turn off the device until the magnet is removed.

Just magnet mode is activated so the only time that the VNS will work is when you place the magnet over the device and remove it. After the 30 second stimulation cycle the VNS will shut down and will not activate again until you use the magnet.

:D HI bawden2!

Wow, sounds like you all had a rather interesting day. Good on you for insisting the device be shut off and shame on the Rep for making such a heartless statement to you. Ya know, I love the UK, the people there, the beautiful sites, etc., but it sounds like the ethics of Cyberonics in the UK is the same as it is here in America-they have none. That Rep is just bent out of shape because he has to go tell his boss another device had to be shut off because it was the cause of the problems. I hope you didn't buy into that nonsense because none of this is your fault.

I am glad the device is off and I hope your daughter starts felling better right quick.

Yes, you are right that if you hold the magnet in place over the generator site it will shut the device off, but if you just swipe it, it will increase the stimulation. But since it is programmed off, a swipe will activate it for a period of time like Dennis told you.

Thinkin' about ya'll and wishing you and your daughter better days ahead! Take great care!

B)

Wow Bawden, not only have you been through so much, as has your daughter, but we are all learning through this process. I did not know that the magnet would temporarily turn the device on when the stimulator is switched off. That is very important information to know and I want to thank Dennis and Dispatch for explaining this process.

My prayers are with you and your daughter that her body will now heal and things will go better. It did not surprise me that the Cyberonics rep tried to make you feel guilty and I am so glad you did not allow the rep to manipulate you or sway you from your decision.

Please keep us updated on how things progress now that the stimulator is off.

Hugs,
Cindy

Thankyou all. I have learnt so much about the device from here as well. The guy did not get under my skin as i know i was only doing the best with the information i was told by this company. Its a shame thye do not look at all the side affects people are getting and address the issues.

Hi bawden2,

With only the magnet mode activated you do not have to worry about turning it off because the device will only work when you swipe the magnet over it and after the 30 second cycle it shuts off automatically. I just wanted to make sure you understood that.

:D HI Ya bawden2!

First off, you are more than welcome! I have also learned so much from this board about VNS, other forms of treatment. and a wide variety of things. The support here has been awesome!

This company is going to have to be forced into full disclosure about side effects, adverse events, etc. They don't operate on the truthful side. Not sure if investors in your country have ran into this with Cyberonics, but here in America there have been many lawsuits over securities fraud. My theory is if they can lie to their investors, they will lie to their patients. It is sad because there are still people who would try the device considering so many other treatments have not been successful.

The more I learn, the more I question whether VNS is appropriate for developmentally disabled people. In my opinion, in a lot of cases, it seems the worse a persons health is, the worse VNS can make their already ongoing issues and then add more. I do know the device has been successful in some developmentally disabled people, but are the side effects worth it.

Cheers to better days ahead! Take great care!
B)

Hi, i have a question and I'm not sure where to address it. Lauren had her vns explanted 11/24/08. I was told by pathology at the hospital that if we took the unit home and an attorney took our case Cyberonics would accuse us of tampering with the unit to cause problems. Well we all know the unit was already bad but what are others doing with their explanted vns units??? i have a call into the hospital right now to make sure the unit is still stored at the hospital. I really need help on this ASAP, the vascular surgeon who implanted it knows by no means to turn it over to Cyberonics so should I get it and keep it until we can find an attorney to take lauren's case??? thanks MOL Mom of Lauren

i just spoke to the hospital, they still have the unit, now what? : wtf1 :

These are my thoughts to as i know of another young lad that is severly disabled who has had to have the device removed recently.

Yes thankyou i now do.


Kathie no answers for you but just wishing you all the best and hope you manage to get some answers for your daughter from this company.

Hi Kathie,

That is such a fine line. If you take it home, they could accuse you tampered with it, but wouldn't they have to prove it was done by running an interigation? If it goes back to Cyberonics, you will probably never have a case. Would your attorney be willing to take it into his possession? I personally brought mine home from the hospital but I am not planning any actions as my side affects were so slight and have now ceased with having the unit explanted. I just knew I was not going to let Cyberonics have it back!!!

Suggestions anyone?

I hope you get some input soon, Kathie. How is Lauren doing?

Hugs,
Cindy

:D HI Kathie (MOL)!

I hope you & Lauren are doing well.

If you've got an attorney, it would probably be best to ask him/her to store the device. If you don't have one, is it possible to have the Pathology Department keep the device for you? If you are stating the device malfunctioned, it is a given the device is going to have to go back to Cyberonics to be tested, and we all know how that will turn out...they rarely and most always never find problems with their device even if a doctor says it wasn't mechanically working or it was causing the problems.

If you've got medical documentation that states the device malfunctioning caused her the medical problems etc., that should shoot the thought out of the water that ya'll caused problems with the device, but you don't want to take any chances.

I wish you the best of luck! Please keep us updated!
B)

:D HI bawden2!

Hope you are feeling more at ease today with having your daughters device shut off. How was her 1st night without stimulating?

I am sorry to hear about the young lad you wrote about. I hope he is doing better with the device out. There's a lot of people developmentally disabled with the device, and it is scarey to think so many of them can't communicate what is going on with them, so who is to know if there are problems with the device, or problems the device is causing healthwise.

Please do keep in touch...I look forward to hearing how Beth does now the VNS is off. Thinkin' about you all!

Take care!
B)

Thanks Dispatch. The young lad is doing well apart from seizures. My daughter is much the same but i did not expect to much of a change as stimulation from the vns was very low. I will just be glad now to get her started on new medication and to get all these tests done to see what is going on with her voice and swallowing. Will keep you all updated.

Take care x

I know for sure that keeping the magnet taped over the VNS. I was set too high and had to wait 24 hours to have it adjusted.

That was the time I met my Dr. in the parking lot of an out of town bar. Two SUV's pulled beside each other. A man holding a device and a lady(me) holding something down her shirt.

I'm sure it was an interesting sight and maybe a few thought they were too drunk!

:ROFLMAO:

Oh Labrat...that had to be a sight! Bet ya'll looked real suspect!

B)

:D HI bawden2!

I am very much looking forward to hearing how your daughter is doing with her new meds. I hope the upcoming appointments for her voice & throat issues will help get to a decision what to do to help her heal. Please give her a :bigarmhug: from me. I really admire you for being such a strong advocate for her!

Take great care X!
B)

:hiya: bawden2!

Thinkin' about you and your daughter & wondering how things are across the big puddle. Hope you all are hanging in there!

Please give an update when the time is good for you!

Take great care! X
B)