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Topic: ONSI trial date set - Small Update (Read 574 times) |
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Lizzie2
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ONSI trial date set - Small Update
« on: Jan 4th, 2008, 1:36pm » |
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Hi Everyone,
Hope everybody had a happy and PF new year! I haven't been around much lately due to some family crises issues, being between my parents' house and my apartment, and this week working on a major cleanup of my apartment with my boyfriend, Jason. Sorry bout that!
I wanted to share some good news...or at least very hopeful news! My mom and I went to the Pain Center today to discuss the trial of the Occipital Nerve Stimulator Implant. All the doctors we saw (and office staff) were very nice, and they took a lot of time to answer all our questions. For the trial stimulator, I will have to get it implanted just under the skin (subcutaneously) under light sedation, but I will be awake in order to tell them if the stimulator is covering the areas of my pain - current migraine pain but also where my cluster pain normally occurs. I will have electrodes implanted occipitally bilaterally and one above my right eye. After the procedure, I will work with the rep from the company to develop programs that work for me. Unfortunately with the trial, the programmable device only holds 2 electrodes, so I'll have to work between 2 devices to accomodate all 3 electrodes, but for the permanent stim, one device works all 3 electrodes - so it's just a temporary thing!
I am having the trial implanted on Monday, January 21 sometime in the morning. I have to have off from work that day, and I am. I have a 4 hour meeting at work the next day, and then the day after that I work a 12 hour shift. Then I have the following 2 days off, and I'll get it removed on Friday, January 25 if all goes as planned. I work the weekend prior to that so I intentionally scheduled this for a light week. I want to go to work with it as I should carry out a normal day as much as possible, but I didn't want it to be a crazy busy week. I can't wash my hair for the 5 days I have the trial stim, and I will have to have some of my hair shaved on the back of my head. However, with my hair down, it probably won't even be noticeable. If I get the permanent stim, that'll be a bit more obvious!
I'm a little nervous about it all, but I'm very excited, too! I'm just very hopeful that maybe this will help me. I could really use a break right about now! If any of you wouldn't mind saying a few prayers or sending up a few good thoughts about all this, it would be greatly appreciated! Thanks!
Luv and PF wishes,
Carrie 
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| « Last Edit: Jan 18th, 2008, 9:31pm by Lizzie2 » |
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Tiannia
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Re: ONSI trial date set
« Reply #1 on: Jan 4th, 2008, 1:49pm » |
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One thing that helps me with nerves is head out side and sing you favorite song or yell as loud as you can. People will look at you odd but once you are done you wont be all that nervous anymore. Of course I sang in Theater so I;d have a blast singing. But once you get over what people think, it can be rather fun.
Good luck hun I hope it gives you some relief.
Only 5, well 4 days, or trail? I thought it was going to be 2 weeks? How long after the trial do you get the perm one?
Tia
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Lizzie2
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Re: ONSI trial date set
« Reply #2 on: Jan 4th, 2008, 1:58pm » |
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You know me - I love singing! Or anything musical.
Anyway - I originally thought it was 1-2 weeks, but I didn't know for sure until I went to the guy who does this part. He said that he would like to see 50% reduction in something - 50% fewer attacks OR 50% less pain intensity with attacks OR 50% less abortive medications taken.....50% less something. If I feel that the stimulator is not helping at all, they will remove it after 5 days. If I think it's the best thing in the world, they will remove it after 5 days because they know enough about it. If I am not sure and think it might be helping, then I can keep it for a few more days to make my final decision. It won't be nearly as helpful as the permanent one CAN be - but the trial is to establish that it does SOMEthing and also that it doesn't make things worse. So I was pretty satisfied by that description! Shoulda put all that in the first post.
Thanks for the well-wishes!
Hugz,
Carrie
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E-Double
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Re: ONSI trial date set
« Reply #3 on: Jan 4th, 2008, 2:10pm » |
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I can't believe that I have to bang my
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Gonna take a breath and try again.
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Tiannia
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Re: ONSI trial date set
« Reply #4 on: Jan 4th, 2008, 2:19pm » |
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on Jan 4th, 2008, 1:58pm, Lizzie2 wrote:You know me - I love singing! Or anything musical.
Hugz,
Carrie |
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ok that makes more sense.
hehe I used to go out the back door of the theatre in full costume and belt "Oh Darlin'" by the beatles. Would get odd looks from people in the parking lot, but after that I could go and do my lines of whatever without any issues.
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cash5542
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Re: ONSI trial date set
« Reply #5 on: Jan 4th, 2008, 7:50pm » |
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I wish you all of the best with the surgery!!! Maybe you could find a pretty scrarf if things don't look too good. It's only temporary. Are you doing this at Jeferson? Keep in touch and Good luck!!!!!! 
Charlotte and Lisa
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Jonny
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Re: ONSI trial date set
« Reply #6 on: Jan 4th, 2008, 7:58pm » |
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on Jan 4th, 2008, 2:19pm, Tiannia wrote:
ok that makes more sense.
hehe I used to go out the back door of the theatre in full costume and belt "Oh Darlin'" by the beatles. Would get odd looks from people and stray dogs, not to mention the homeless bums in the parking lot, but after that I could go and do my lines of whatever without any issues.
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8 horns up for luck, Kid!!!! 
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| « Last Edit: Jan 4th, 2008, 7:59pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Charlie
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Re: ONSI trial date set
« Reply #7 on: Jan 4th, 2008, 10:15pm » |
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You'll do fine kid.
Charlie
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DennisM1045
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Re: ONSI trial date set
« Reply #8 on: Jan 5th, 2008, 7:36am » |
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Good luck Carrie! With your attitude I'm sure this is going to go well.
-Dennis-
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lionsound
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Re: ONSI trial date set
« Reply #9 on: Jan 6th, 2008, 9:51am » |
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sending calm and PF thoughts!!
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Lizzie2
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Re: ONSI trial date set
« Reply #10 on: Jan 6th, 2008, 10:30pm » |
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Thanks so much for the positive thoughts, everyone! I'm excited about trying this - I just wish the 21st would get here already just so I could get on with it and stop the waiting. Tomorrow I have to tell my boss about all this since I will be working 1 full day with the trial stimulator in place, and I have a 4 hour meeting day the day after the procedure. And then there's the possibility that if the trial helps, I will be going for the permanent implant and then I might be out of work for a couple of weeks. I guess we'll see! Thanks again for the positive thoughts and all - it really helps!
I'll keep you all posted!
Hugz and PF wishes,
Carrie
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Guiseppi
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Re: ONSI trial date set
« Reply #11 on: Jan 6th, 2008, 10:35pm » |
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All our love Carrie
Guiseppi
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Lizzie2
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Re: ONSI trial date set
« Reply #12 on: Jan 8th, 2008, 10:01am » |
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Update: Well I let my boss know yesterday that after I get the trial stimulator, I'll be coming to work with a wired head for a day...and also going to a 4 hour meeting for a day. I also told her that if the trial stimulator works, then I will be going for a permanent implant, but at least 4 weeks later, and then I might need to miss a couple of weeks. She was totally cool with everything, and she wished me good luck with it. So that's nice!!
Originally, I was supposed to have a neuro NP appointment on the 21st, but it is more important to get the stimulator in that day, so I moved the NP appt to the 22nd at the end of my 4 hour meeting. When I discussed the stim with the NP before, she had never seen a patient with it on in the trial phase, so I figured it would be good to go when I have the trial in place so she can see what it looks like and know what to tell future patients who might be getting this done.
I'm getting excited and a little nervous!! Since they're only shaving the back bottom of my hair off for the trial, it shouldn't be too brutal, but I may have to get a new hairstyle for the permanent one at least! That's not what I'm nervous about, but these things do matter at least a little bit! I'd do anything if it helps the pain get better, though.... I'm ready for this after having researched it for a long time, and I'm excited about the possibility of having something finally help.
Thanks again for all the support!
Hugz,
Carrie
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DennisM1045
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Re: ONSI trial date set
« Reply #13 on: Jan 9th, 2008, 12:46pm » |
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Thanks for the update Lizzie. I hope it brings you everything you want and more.
-Dennis-
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Lizzie2
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Re: ONSI trial date set
« Reply #14 on: Jan 9th, 2008, 2:12pm » |
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Thanks Dennis!
Yesterday I ran into my neuro in the hall at work. I told him about getting the trial stimulator implanted, and he said that if I don't have any negative effects from the trial stim, then I should go ahead with the permanent stimulator. This is a little bit different than the pain center said with respect to 50% improvement in some way. However, both my neuro and the expert on ONSI who was visiting from England have said that the trial stim doesn't usually show much of a great benefit, but then patients do see a benefit with the permanent stimulator after quite some time. I just have to take all this into consideration!
The final thing he said when I told him that I'll be in to see the NP the next day was, "Good you can show us your new toys!" haha...
I received a webcam for Christmas, and I'm thinking once I get the trial stimulator, I might record a little something talking about it and showing what the trial looks like and then try to make the video available for people to see or something like that. Especially if this procedure is something that anybody else might try someday, I'd like to be as much help as possible with explaining what I went through. I know others from our group have either had the stimulator implanted (Mike Pollock) or gone through the trial(Unsolved), but I'd still like to share my experiences if it'll help someone else!
Take care,
Carrie
**Edited to add the half of my comment that got cut off somehow!
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| « Last Edit: Jan 9th, 2008, 2:16pm by Lizzie2 » |
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Lizzie2
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Re: ONSI trial date set
« Reply #15 on: Jan 18th, 2008, 9:31pm » |
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Small Update:
I got a call from the hospital today, and I have to be there at 9:15am on Monday morning. So we're all set for the trial procedure! I'm excited and nervous at the same time!! I really just want to see how this is going to work!!
Take care,
Carrie
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ski2k
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Re: ONSI trial date set - Small Update
« Reply #16 on: Jan 18th, 2008, 9:40pm » |
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I'll be pulling for ya! Sure hope it helps! I get migraines as well, and know how draining they can be, so any relief you get will be a great improvement.
Best,
Adam
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cynjeep89
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Re: ONSI trial date set - Small Update
« Reply #17 on: Jan 20th, 2008, 9:25pm » |
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Just wanted to bump this up and say good luck to you tomorrow, Carrie. We'll be thinking of you and hope all goes well.
When you are feeling up to it, drop us a line and to let us know how you are doing, okay?
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Lizzie2
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Re: ONSI trial date set - Small Update
« Reply #18 on: Jan 20th, 2008, 9:34pm » |
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Thanks Adam and Thanks Cyn!!
I worked my 6th day of the week today and now I'm officially done and nothing stands between me and tomorrow. Well, I'm about to eat dinner since I can't eat anything after midnight, and then I'm going to get my shower and straighten my hair tonight. Because I can't wash my hair or get a real shower for the next 5 days, I've got to straighten it so it doesn't look like hell. I'm sure it will look like hell anyway if they are shaving some of it off! heh... No more ponytails for Carrie!
I'm really excited, and nervous.....and it's making me feel jumpy. I just want to get it done with now. This isn't even the big big part as that comes after the stimulator is in place. I'll try to post as soon as I can about how it's going - and I'm going to get my mom to take some pictures tomorrow, too - so I can show everyone what the trial stim looks like.
I know that with the trial stim, I'm going to have all kinds of wires going out of my head, and that makes me a little nervous for going to work on Wednesday. I don't want anything to interfere with my job as a neonatal nurse. But worse, can you imagine if one of those babies got ahold of a wire and yanked?? Yeow... That wouldn't be good! But we'll just have to see what this thing looks like once I get it tomorrow!!
For those of you who sent PMs, thank you!!
Hugz,
Carrie
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cynjeep89
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Re: ONSI trial date set - Small Update
« Reply #19 on: Jan 20th, 2008, 9:51pm » |
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"The waiting is the hardest part", isn't it?
Have a good dinner, get some rest and tomorrow will be here sooner than you think.
All my best to you!!!
Cyn
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Grandma_Sweet_Boy
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Re: ONSI trial date set - Small Update
« Reply #20 on: Jan 20th, 2008, 10:11pm » |
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Good Luck Carrie. Wishing a wonderful outcome for you.
Hugs
Carol
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Re: ONSI trial date set - Small Update
« Reply #21 on: Jan 20th, 2008, 11:28pm » |
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Good Luck Carrie!
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Ray
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Re: ONSI trial date set - Small Update
« Reply #22 on: Jan 21st, 2008, 12:38am » |
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Carrie:
We're all pulling for you and expecting the very best for you!
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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