Best of luck with that Ada :hug:

Thanks to all of you for your support.
 

I am excited but after I got the news I cried all evening. I cried myself to sleep. I was thinking about Bill. I wish I could have had this done a year or so ago before he passed so we could have gotten to a more normal place in our lives. He was looking forward to a trip to Ca. and Arizona and I was trying to get better to make the trip with him. Deep down though I was afraid to make the trip because of how he had went down hill. He wouldn't have cared, he was always going no matter how he felt.

I wonder why it is a man can go more when he's disabled then a woman can. I made him go places the last few years by himself. I was determined I wasn't going to make him sat at home because I couldn't go.

At a time when I should be happy, I'm having a time getting there.

If it weren't for my PCP standing by me and pushing me, I don't think I'd be here today. He has been one of my best friends for the past 16 years and has helped me get all of the help I need just as he did for Bill.

All of you on this forum have been a great support to me. I can come on here and post to keep my mind off of my grief at times or just talk about it.

Thanks,
Ada

(((((ADA))))) My heart goes out to you... (((hugs)))

Ada

Bill is there with you as a guardian angel. He is rooting you on.

He probably was there telling the insurance company that this
was what they had to do. THat it was your chance for a life.

He will be there when your ready to go on your next trip, and you
will. You'll take a trip because its what he would want to do.

You'll go somewhere do something that he would want to do.

Donna

Hi All,

Ada !!
You got the ok for the vagal nerve stim so fast, it must be some kind of
record :) for those insurance companies :eek:

I have never been to this forum before ... I just found myself here reading :confused:

I really want to thank DiMarie for all you have said - It has really helped
me understand some things going on inside of me.
I want to thank everyone else too for helping Ada.

Also I want to mention I have a very good friend who is Bipolar.
He is always manic but no one ever sees the depression.
Lots of anxiety and continually moving and talking, but never sad.
So I guess it just doesn't show on the outside. It is so severe, he left work disabled over 8 years ago.
He gets upset because he always has to make the effort to keep our friendship going.

((hugs)) Ada. There is so much history behind your depression through
all these years, I couldn't begin
to understand the pain you have gone through (and still do) :hug:

I want to thank you Ada for identifying what is going on inside me.
I couldn't put my finger on it or express it but I knew something was wrong.

It is what you said about "being numb".
That is exactly what has been going on with me but I never knew how
to say it -- to put it into words.

Things you say about the way you are sound so much like me.
If I don't take medicine I have insomnia and stay up all night.
But I DO take meds and so I sleep, I sleep a lot. 12-14 hours at night and some during the day.

When my husband bought our retirement home a few months ago we left a tiny condo, for a larger very comfortable ranch style home.
SO MANY people kept saying how happy I must be to have such a nice home.
I really couldn't say that and still don't say I feel happy about it.
I don't know know how I feel except I miss my home. (I've moved a lot tho)
It must have hurt my husband so.
He is so confused about why I'm not excited, but am - as you say - numb.

As a result the same people keep asking me if I am happy here
(where I live) but I can't say yes because I don't know.
Like there is no feeling there.
That word numb never crossed my mind.

When my children & grandchildren fly across the country to visit,
my friends visit, take me out to lunch and such,
others say "How nice, are you excited?"
I can't say I am....I don't even like to go out to lunch.

I love my family and they love me a lot.
So why don't I get excited to see them - why don't I "feel it" ?
I must be excited but don't know it.
I don't say yes, I'm excited about things to people, because I don't feel excited
I only get dressed 1 ort 2 days a week when I have to leave the house,
but I don't care to go out. I only bathe because I have to and that leaves me so tired I go back to bed.
I don't say yes, I'm excited about things to people, because I don't feel excited. I lost enthusiasm, which I always had a lot of.
I started a thread before this one to explain my situation a little better.

I just wanted to say thank you Ada for giving me the words to describe
how I feel .... or don't feel .. not sure which.
Thanks for listening.
Hope

VNS (Vagus Nerve Stimulation) information for the Depression Patient...
 

Dear Ada (dreambeliever128),

I happened upon your posting on another topic to which I responded and I’d like to also respond to you on this topic and too take this opportunity to wish you good luck and wellness with your VNS Therapy for TRD.

There are individuals in this life who, like myself, try to make a sincere effort to share information in a non-alarmist fashion both balanced and unbiased advocating for education of the patient and his/her support person(s) to make informed and un-coerced medical decisions in collaboration with one’s trusted, knowledgeable and licensed health care practitioners from a pro-active stance and to encourage hope and persistence.

Unlike a previous poster and her cut and pasting of information I’m sure if you also read carefully the drug inserts on many of the medications you’ve utilized you’d also read similar forms of information. The point is and which I advocate for is education as well as hope and persistence and to never give up or give in.

I’d be interested in and so would others in following your experiences with the therapy for Depression as there are so few patients utilizing this therapy for Depression (about 2,000 or so) and the fact that CMS (Medicare) has put a major damper on the therapy for the Depression patient.

My spouse was one of the earliest study subjects (D-01 study) implanted approximately 7 ½ years ago and she has been doing remarkably well as are a number of other patients with whom I collaborate.

There are no guarantees of efficacy with this treatment for Depression as there are no guarantees with any of the other treatments. For my spouse and me our 43 years of this journey has been a "Trial and Error Approach to Wellness" which has proven to be fruitful for my wife about 7 years ago.



Once again, I wish you wellness.

Hi All,
 

I saw the surgeon today. The VNS will be put in on a Friday. Don't know which yet, my PCP has to be there so the have to get together and sat a time and date. I am thinking Friday after next.

Hope, I will keep you up on this. I have had several people in my area wanting to know how it goes. I'm excited but scared.

Ada

Vns
 

Hi Ada,

I am using my husband's laptop to write...not used to this.
I had a whole post written and it disappeared. :(

I'm may be close to knowing how you feel. :hug: I've waited over 4 years for an approval for the SCS and the last two for the intrathecal morphine pump with denials. :mad:
A year ago, I got approval for the pump trial. I had it, worked well, so doc asked for permanent pump.
WComp said, not only are we DENYING the permanant pump, but we are NOT going to pay for the trial either. :mad:

2 months ago the doctor told office staff to ask my Private Insurance & WComp again, to authorize the intrathecal (spinal) morphine pump. The staff never even worked on it until I called a week ago and asked them what the status was. So they asked my private insurance and got THE OK :D
The didn't ask WComp however so I told them to ask w comp because my insurance coverage is poor. I have medicare to help out also. So yesterday they called w comp and we are waiting for their answer. Meanwhile we are scheduling the surgery anyway. It may me next Friday or the week after.
I'm sitting here pretty much without any emotion. My friend said, "Are you excited?"
Honestly, I said no. I want it, I am not scared or excited, I just want pain relief. I am sure the day before or day of surgery I'll experience some emotion - I'll let you know. That is what my first post was about, not having feelings and if I do, not knowing what they are. I wonder if that is from all the pain meds I take. They may be numbing my emotions instead of my pain :confused:

I look forward to (my) & your surgeries and the positive results. I am praying for our surgeries to be successful - positive outcomes, and that we experience success without any complications. That all goes well and these things do what they are supposed to do.

By the way, I emailed you and asked in a post if you ever received the information I sent you on the splanchic block for abdominal, pelvic and hip pain. Did you ever get it? My friend had it and it relieved her pain.
Take good care of Ads...love ya, pat

Hi Hope,
 

I did get the PM you sent me on the block. I email and PM so many people I swear I can't keep up with them. I even talk to a lot of the forum girls and I can't keep up with who I have talked to and who I haven't. After Bill passed I had several to call me and I think now was that this one or that one.

I'm very excited about this VNS. My biggest worry as I posted on the RSD forum is the spread of the RSD. He has one patient that is dealing with it in the neck area of the surgery. They can't do a block in that area since it is up kind of high where the wires go. The box goes in the chest area near the arm pit. This surgeon told me he would help me if the RSD came out and my PCP said he'd jump right on it but you know how RSD is. They can't calm my worry about it.

I am hoping you do get that pump. I wanted it back in 2003 but this idiot PM Dr. at the UofC said because I had CSS that it wouldn't work for me. He also told it to another girl on the forum but others have told me that is just not the case. It would work for me.

Between WC, PM's, SS, and SSI we all have a long road to go. My insurance has already approved my VNS. The Surgeon told me that my insurance was a big advocate of this and that's why they approved it so quick.

As far as the numbness and no feelings, it can be the meds but if you are dealing with major depression you know it. I actually have a nurse that has it and she is excited about this for me so she can see how it does so she can get it if it works for me. She says she can't imagine living 5 more years like she is.

From what you have said in your post it does sound like depression to me. I would say the length of how long you have felt the way you do tells you if it's depression or not.

I have dealt with it all of my life and I am 55 years old. It got worse after an etopic pregnancy in 87 and got 10 times more worse after I developed TOS and RSD.

When I say I am excited about this I guess it's the wrong word I think just relieved. I have laid in bed many a night and thought if something doesn't happen for me then something's going to happen to me. I most likely would not be alive in a few years if I didn't get this VNS and if it didn't work.

My husband loved life and never gave up and I'm just the opposite.

I will keep you up on this. Thanks for the info on the block. My problem is when I think about doing something else I need to do for one medical problem I run up on something else that needs taking care of first. Now I am dealing with CFS again so I have to find out what to do about it next.

Keep you hope and faith up. What you want will happen if you want it to and you keep after getting it done.

Ada

Hi Again
 

Glad you got the info on the block.
I thought you could plant the seed in your doctors ear in case someting really severe happens and you needed an emergency treatment. Once can only take so much pain.

I am getting the pump from what they said. Maybe next week, but I should know for sure. I had surgeries as a child, a ton of surgeries 15-20 yrs ago, 2 just before RSD and hoped I was through. This next one is the last I hope. We are getting too young -- oops, old for this. lol

I sure hope that person on the RSD forum tries those lidoderm patches. Taking meds or patches to help relieve pain gives us hope and less chance of depression. Just like the VNS is going to help YOU :D :hug:
Love ya, Pat