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my VNS
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hula_dancer73 posted:
This is not a one-up-manship.

IT is telling you about the depletetion of it.

IT is doing weird things right now, and at some point will need to be replaced.

my szs are picking up in pace, more of them, it doesn't run half of the time, it feels like it is running harder/stronger, weak or not at all. IT doesn't always hold the 20 seconds for the st imulation, etc.

My neuro is out of town until the end of next week so there is nothing I can do about it currently. so I have to put up with it until then.

ANNOYING!!!

hula_dancer
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dancer86442 responded:
Nancy,

This doesn't sound good at all. I Hope your DR can figure out what's what. Personally, I think I would be calling an 'Available' doc ASAP!
 
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clarinet2 replied to dancer86442's response:
Nancy,
I agree with Candi's response. There must be a back up physician or another neurologist on one of the Islands who should cover your main neurologist's patients while on leave.
especially when it deals with the medical device.
 
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saxofone1 replied to clarinet2's response:
Hi Nancy,

We are all thinking the same thing. You need a medical doctor at your disposal for such emergencies/concerns.

Is there an Epilepsy Foundation on the island that might help you locate a doctor?

Stay strong. Please keep us posted as to how you're doing.

angie
 
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hula_dancer73 replied to saxofone1's response:
depletion is normal when it runs out of juice. I have already had my neuro paged yesterday and he is going to check it when he gets back in a week.

Don't panic you guys, it is normal and expectid when it wears down.

IT was replaced in aug of 10 with a 6. Numbers 1-7 is the scale and 6 is whatit was so it got replaced. No biggie.

I am NOT going to mess with another doc, since this one doesn't want anyone else messing with it. He wants to wait until he gets back and then have me fly in to see him on emergency basis.

I have already talked to him and he is very aware of what is going on.

YEs there are neuros on this island that I have routine w rok done, jsut not the VNS.

don't panic. IT is not going to get that much worse than it already is. It can wait one more week, if it has waited this long. We hhad to wait for the symptoms to apprear before he can do anything, so he will when he gets back.

THe VNS rep in PHX is also aware of it as well.

you guys panic too fast about things.

It won't kill me to wait till next Friday.

the symotoms have only been felt for about 2 weeks and it is the same way it went 2 years ago. The same ones.

Nancy
 
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clarinet2 replied to hula_dancer73's response:
Nancy, no one is panicking here, we are simply giving you some advice to share with your doctors. It is not fair that you have to wait so long as a patient, that is not good patient customer service at all.

What if this was a another patient with a VNS and it was truly an emergency similar to the man Dennis from the other discussion?

I think you should discuss this with your doctor, who would cover for him or her if they were ill and not able to work?

I hope you understand where we are coming from? No one is panicking we are just offering good advice to share with you and your doctor.

Your learning experiencing will benefit each other and other patients for the future.
 
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clarinet2 replied to hula_dancer73's response:
Nancy, the responders to your email are not panicking, we are simply trying to give you information to pass on to your doctor for your quality care and service.

Having to wait in this situation is not good patient care. What if your doctor became very ill or had an emergency who would cover for them?

This can be a very good learning experience for your doctor because what if your doctor had a patient with the VNS who had a life threatning experience with the VNS similar to Dennis from the previous VNS discussion?

This could help you to help other future patients so they did not have to wait to get their VNS adjusted. what we are trying to share with you is that your doctor need back up coverage.

This is not downgrading, just simple facts that should be looked at by doctors to help their patients.
 
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clarinet2 replied to clarinet2's response:
sorry for the dual responses the 1st one did not show up on the screen so I thought it was lost.
 
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saxofone1 replied to hula_dancer73's response:
Ok, Nancy,

I think "panic" is a bit too strong. We are concerned for you and want your seizures to be at a minimum. Just as we would be for ourselves should we be waiting for our docs to call in a refill on meds that would run out before the weekend. That's why I always carry four days in my purse.

And, there is no reason why someone shouldn't panic when it comes to the safety or well-being of a friend, or anyone for that matter.

It now sounds like a situation that you are familiar with. It was that you mentioned "weird things" and "my seizures are picking up in pace" that caused our concern.

Now you say that your doc "doesn't want anyone else messing with it". He would rather see you on an emergency basis when he returnds than refer you to someone nearby. Okay.

One more thing. None of us were suggesting that you change doctors but that maybe you should think about having a second one that is nearer to you when such discomforts/concerns arise. We're simply throwing out ideas that we thought would be helpful/supportive to you.

angie
 
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dancer86442 replied to saxofone1's response:
Nancy,The Depletion of your batteries may not kill you. But, who is w/ you to Insure your seizures don't???? Increased seizure activity is Not Good & You Know It!

Dang It, Nancy, what we All are trying to say: We are Worried & care Very much about What is happening to You!

You've been thru this B4. We've been thru this B4. I Disagree w/ your DR & Your Rep! It may be 'Normal' for your battery to need re-placing. But, No Big Deal? BULL! Is what I say. Not when it involves 'Increased' seizure activity! You Do Need Another 'back-up' DR for when Your DR ain't available! I agree w/ Dana! What if he Doesn't make it back from where ever he is due to 'Complications'? None of us are Invincible, Including your DR!

I Apologize if I have upset you! But, you Have Upset Me! WHY? You Know WHY! I Care! We have been Friends a Long Time! I wouldn't say any of this, if not! Nancy, Please, reconsider seeing another DR ASAP! I wouldn't wait another week! No Way! But, that's Me!

BTW: Is this your DR in Phoenix? Or on the Mainland? Either way. He Should be More Concerned for your Welfare. I want to Knock him upside his Head! You should Too!

Love Candi
 
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saxofone1 replied to dancer86442's response:
Candi, thank you for saying it to the point.

I want you to know that my "okay" in the previous post was not an agreement to how Nancy and her doc are handling this. You know how we respond with "okay" out of simple frustration?

Nancy, no one is trying to replace your doc or tell you how to handle a situation. But we all the unpredicability of seizure activity and the possible circumstances. Just simply look at all the possibilities, the good and bad ones.

Candi, I'm all for an "OOPS UPSIDE YOUR HEAD, I SAID OOPS UPSIDE YOUR HEAD"

angie
 
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Haylen_WebMD_Staff replied to hula_dancer73's response:
Hi hula!

Please keep us updated...lots of people love and care about you here

(((hugs)))

Haylen
 
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hula_dancer73 replied to Haylen_WebMD_Staff's response:
hi Haylen,

Saw my neuro on the mainland today.

He had to do some adjusting on it.

He lowered the cycling on it but kept the magnet swipe up.

So now I am at 2.25 amps every 5 minutes for 20 seconds and the magnet swipe he left it at 2.75 amps.

Nancy
 
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dancer86442 replied to hula_dancer73's response:
Hi Nancy,

Sooo glad you got That taken care of & that everything is OK now.

I hope you aren't Mad at us for being Sooo Concerned.

Now, as for your reply to Dennis' posts. Don't get Pissed, but, here is How I See It! Everything he has Posted is Legit & Should be posted for Anyone who visits that wants/needs to Know More! Then it is Up to Them to weigh the pros & cons! He is Not posting those Links Just For You! Nancy, Dennis & Anyone Else that has Info pertaining to Treatments has Every Rite to post that Info! Good Or Bad. We aren't Just a Support Group. And You Know That! I have been Researching & Reporting on Everything/Anything pertaining to EP &/or Treatments for YRS! If I was the One posting the links/Info that he has, would you tell me to "STOP"?

Discussions that were Posted YRS ago, are still being Read & responded to. Again, that Info Ain't just for You! You don't Like it! Don't Read It! But, as a Rep for VNS, in my Opinion, You Should Know & be Reporting All of That to PPL you talk to!! Not just how well it works for You! Am I repeating myself? Probably! But, so are You!

Hugs! I Still Love You! OK??????

Love Candi


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