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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

My VNS is up and running.

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Old 04-23-2007, 03:22 PM   #1
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Default My VNS is up and running.

I just got back from my PCP's office and the VNS rep was there and turned the VNS on for my depression. At this point it runs 30 seconds out of every 5 minutes. I can't turn it off my self but I can hold my magnet over it to stop it. He said it could take up to a year to see the depression change.

It's going to be interesting. When it comes on it bothers me but I am hoping I can get use to it. He thinks I'll do find with it. What I feel is like a slight choking feeling but it hasn't changed my voice. Just too wierd.

I go in every week for 4 weeks to change the setting until we get it to where we want it.

Keep your fingers crossed. I'm just nervous about it right now.

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Old 04-23-2007, 11:09 PM   #2
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Sending good wishes and prayers for speedy help Ada.
Big Hugs

Pocono area, PA



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Old 04-24-2007, 12:58 AM   #3
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Well done, Ada! Wow...it's going to be really interesting, please let us know how it affects you. What is the sensation that bothers you? Tingling kind of thing?

Hope it starts doing its job sooner than normal; have they said how you can tell if it's starting to work? Do you just gradually feel better in yourself, or what?

No hurry for answers, you just look after yourself - a bionic woman needs all the care she can get

all the best!
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Old 04-24-2007, 01:03 AM   #4
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You are in my thoughts and prayers!!!! Here is some love to have a speedy recovery!!!
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Old 04-24-2007, 10:01 AM   #5
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Default Thanks for the support.

DiMarie, I sure hope this does help me and I hope that you continue to see better days since the loss of your loved one. I just really love you. Being with you on the forums all these years has been a delight for me.

Artist. It can take up to a year for it to start working. He said if I didn't see any improvement even in 6 months not to give up. He has only seen one person that saw improvement right away.

He was amazed at how good I was doing after surgery. He said with those wires wrapped around the vegal nerve most people start having problems right after surgery with talking, a cough, or swallowing. My voice is fine so he says he is sure I will do good with it.

I was talking to Devin last night and my voice started changing when it went off. He asked me what was wrong with my voice. I sounded funny. I have to get use to it.

It really is an amazing thing though. In the surgery, they wrapped wires around the vegal nerve that goes to the brain and there is a part of it that goes to the heart so my Dr. asked questions about bradycardia but the rep seemed to think it would be fine on that part. The box is right near where my bra strap is. I have a magnet that I can wear on my wrist or one I can wear on a belt and if I sing or make a speech, which most likely you would never catch me doing, I can hold the magnet over it and stop it until I done. Now picture that one. Me standing there holding my hand over my heart while I'm doing one of those. Everyone is going to think, what the hell is she doing, it's not the Pledge or not the American song. LOL The people that represents the company have been the best people I have ever met though. They have been the best at helping me get it approved through my insurance which only took one time to get it done but they did it and they have kept in touch with me through every bit of the time of getting it done.

I know a lot of people that doesn't have the depression issue doesn't know how important this is but there are so many people out there suffering from depression that I am so hoping this works for me and keeps working for the others that have it. I think he said 2000 have had it put in for depression so far.

Keep your fingers crossed for me.

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Old 04-24-2007, 10:41 AM   #6
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Hi Ada

I feel bad that I havem't replied before now. I have been diagnosed with clinical depression; as a mental health professional I've worked with severely depressed patients in the setting of a psychiatric hospital. Like other staff I have felt totally impotent when state law forced us to release patients before they were ready to go. Before they were willing to go.

If anyone understands depression, it should be me. But I don't. And you started your threads on your hopes for this VNS and I was just like the people who don't talk to us because we're in wheel chairs; I didn't say anything because I didn't know what to say.

Well, I can say that I hope and pray that this thing exceeds your wildest hopes. You sure deserve a break. I have no advice to give, just love...take as much as you need...Vic

The great end of life is not knowldege but action. T. H. Huxley

When in doubt, ask: What would Jimmy Buffett do?

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Old 04-24-2007, 10:45 AM   #7
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Ada: I wish you continued success with your VNS. Perhaps you can keep a journal about how you are feeling and that way you may be able to see if you are improving, even if you do not notice it otherwise. Best of luck!! Lil
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Old 04-25-2007, 02:29 AM   #8
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Default Lil and Vicc,

First off Lil, I wanted to thank you for the ideal of the journal. I told someone on here today I believe that she might want to do that and I use to journal everything but I hadn't thought of journaling about this journey that I'm going to take with the VNS. Smart ideal.

Vicc, I wanted to thank you for your kind words. I appreciate them and as you said at times it's very hard to know what to say to a person in any situation but I'm glad you did.

Like you, I have trouble at times saying the right words. Susan takes care of a friend that has MS and she is in a wheelchair. She worked for her for a year before I knew I had worked with Diana. Susan finally said that she worked at this company and we finally figured out that we had worked there at the same time. Sat right next to each other and sewed. She was in her late 20's and me in my late 30's. I knew when I worked with her that she had some major health problems that she didn't know yet what they were. It turned out to be MS as I said. I ran into her in the Goodwill awhile back and it is hard to know just how to handle certain situations. We started talking about our past together and then I relaxed. So I do know where you are coming from.

Death is another issue that is very hard to know what to say to a loved one that has lost. I just lost a friend this morning so I am dealing with that now.

The night I was in the ER with chest pains two weeks ago a very good friend of mine was in there. He had tried to commit suicide. He had surgery on his foot and has RSD now. I went by his house to see him last week to see how he was but he wasn't home yet. Now he is gone home to stay with his folks for awhile so they can help him to get through this. He is Susan's age and I call him one of my adopted kids. When he gets back, I have to figure out how to deal with this. As I said, I love him like my own and he actually lives here in the park I have moved into so I know I will be seeing him soon. He will also be around the kids again. I am hoping he gets councelling to help him through all he's going through so this won't happen again, maybe for the worst the next time.

Depression is a hard one to understand. I've been blessed, not one person has questioned me with mine. They probably wonder why I am dealing with it but I've had it all of my life as I said, and I can tell you it is not something you can control on your own. With me it is a chemical imbalance and I would suspect it to be the same with others that have it like I do. There are different forms of it I know such as what comes with loss of a loved one, or divorce, but mine is as I said from a chemical imbalance. I can tell it too. I talk about it openly. I have a Nurse that has it as bad as I do and she and I are trying to help each other through it. She is hoping to get the VNS if it helps me.

You are so right about how the Government doesn't help people enough to deal with it. They just aren't helping people to the level that they need the help. When you go to a Mental Health Facility for help with any Mental problems they should work through to the end of a person's journey with it and with them. You just don't see that happening.

I am thankful that friends like you come forward and give me the emotional support that I get from being on here. It is a different kind of support then we get from friends and family because they aren't walking in our shoes, at least most of them aren't. I'm just overwhelmed by how many people deal with depression. My step-daughter told me today that she is dealing with it really bad as his her husband and it didn't just come on after losing Bill so that's not it. It's become an epidemic of it's own.

You said the right words to me by just saying them.

Thank you,

Last edited by dreambeliever128; 04-25-2007 at 11:18 AM.
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Old 04-25-2007, 10:31 AM   #9
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Ada, So sorry to hear of the death of your friend & I hope your "adopted" kid can get help too.
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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