[tchr012]

Wow, today has been such a crazy day and something really unexpected happened. I went to my appointment and of course my stim rep could not reprogram me yet again and we found out that now the battery and the leads are really messed up. Then we discussed if I was going to have another revision but we were worried because of my tendency to fall so he told me about the paddles! He even showed them to me and then him and my old stim doc (who was actually nice for a change) asked me what I wanted and said if I wanted the paddles I could get them! So, long story short I am going for it and now I am just waiting on the call from the surgeon to know when it will happen! I am just in a whirlwind of emotion right now and I cannot believe that I am actually going to get them! I am also kinda scared so I will be asking lots of questions for people with paddles I am very nervous but I feel very optimistic and that my prayers are about to be answered My first question is how long is the recovery, and are you woken up during surgery like when you have the regular leads in? I hope you sleep the whole time because that part is so painful when they wake you up! My stim rep said it will hurt more because there will be two pieces of bone cut out so I am trying to prepare myself for that since by itself it sounds scary lol. Anyway, I have homework to do but I wanted to let you know since this is such a big deal! I am also really hoping that some of you that have the paddles can maybe offer me some words of wisdom or just help alleviate some of my fears I appreciate any info I can get at this time! Take care 'sTara

[smae]

Tara,
I am SO happy for you! =) I obviously don't have any information on you, as I'm still in the earliest stages of getting a SCS.. but I just wanted to comment and tell you how happy I am for you! Woohoo! I'll be interested to read how that process is different!

[kzlrogue]

HURRAY!!!

I'm so happy that you are finally finding the answers!! I apologize for not posting a lot lately but YOU have inspired me!!! I have decided to go back to school so I have been very busy lately getting things in order as it starts next week for me!! I know you have had a rough time lately but you truly are an inspiration!!!

I had the paddle implanted back in February of this year and am LOVING life!! My recovery lasted a little longer than I anticipated. Now, having said that my Dr. said I'd be off from work for only 3 weeks but would be ready to go back after 2. So thinking that recovery would be a "breeze", I was a bit frustrated when I needed to take an extra week off and work 1/2 days my first week back. The surgery is an outpatient service but my doctor gave me the option to stay overnight (which she made possible for insurance to cover). I opted to stay overnight as I had some complications when I delivered my son via a c-section so I had cold feet about surgery.

To answer one of your questions, I was out for the ENTIRE surgery!! I asked that probably 3 or 4 times! My surgeon told me that since I had the trial she knew where to place the leads as they worked for the trial so I didn't need to be awake which was GREAT!! I had a bad experience when I had the trial. I didn't have enough sedation during the trial so I literally felt the leads go in and it was VERY painful. I did not want to go thru that again! After surgery, I can honestly say I was in pain when I woke up; however, haven't we lived in serious pain previous to the surgery? What's a little more! Except after surgery, they have this wonderful little button that feeds you happy pain meds. In my case, those happy pain meds made me REALLY nauseated so I had to stop taking them a few hours later and the only thing I found that didn't make me really sick was OTC medication.....so needless to say that made things quite uncomfortable. I ended up staying a total of 2 nights in the hospital due the severity of the nausea. On the 3rd day, I was finally able to go home ONLY because I was going crazy being in the same 4 white walls so I really needed to be in my own surroundings again. I knew I'd start feeling better if I were at home. By then I could actually get up out of bed without feeling like I was going to pass out or throw up.

At home, I religously took the OTC meds and my muscle relaxers and used a lot of ice......they didn't call me the Ice Queen for nothing you know!! Oh wait, I think I had that name before the surgery!! LOL!! I slowly would move around during the day.....got bored of daytime t.v.......but was feeling stronger each day. I did start having a sharp pain in my ribs that would knock the wind out of me. It felt like someone was stabbing me in the side. It was so bad that it sent me to Urgent Care. They took x-rays and everything was where it should be and couldn't find anything wrong. So, I scheduled an appointment with my surgeon and she said that I probably had the stimulator on too high and it caused the muscles to spasm which caused the pain. I turned the frequency down and didn't have them again. I think I just turned it on too high too soon so be careful of that. That was about 2 - 2 1/2 weeks after surgery and set me back. It made me feel like I was days out of surgery again so that's why I ended up taking an additional week off from work and when I did go back, I started 1/2 days for the first week.

About 3 months after surgery, I got the okay from my surgeon to start golfing! She said that since I had the paddle, the leads were so secure that she would even have a hard time getting them out herself. Now, I was not mentally prepared to golf yet as everytime I golfed pre-SCS, I suffered the consequences for weeks after. Granted why would I put myself through that if I knew I'd be in worse pain then I already was? Because I am stubborn and I wasn't going to let the pain have total control over me!!

It's now 7 months after surgery and I have been golfing for the past 6 weeks or so. The first time I went out it was suppose to be for only 9 holes but I felt so good I ended up going for 18! Now, I do know that I still have limitations so I've only golfed 3 times so far but all times it's been 18 holes. I've got one more tourney in October that I want to play in and then I'll call it a season.

I think you'll be happy with the paddle. Just make sure that your surgeon is really good and he/she places it is as close to the center of your spine as possible. I believe my surgeon is great but if you look at the x-ray really really close the paddle is off center just a hair. We both believe it is enough to make the sensations more dominate on one side versus the other. Luckily, there are so many different programs that we found one where I can set each leg differently but have them both on so if one day I need more on the left side, I can turn that side up but still feel something on the right side. It's amazing!! Of course, it did take a lot of tweeking to find the right combo but I actually haven't needed a tweeking for months now.

Well, now that your eyeballs are probably all red and dry from reading this really long post, I will leave you to your thoughts!! Good luck and let us know how things turn out!!! I may not be able to post that much since I work about 45 - 50 hours a week and now will be starting school (I know...poor me!!) but I will certainly be reading everyone else's posts!!

Take care!!

[Rrae]

Tara! WOW!

I know this must certainly seem overwhelming and yes it is a big deal, but I just KNOW in my heart you are doing the right thing!

Kzlrogue! GREAT POST! How WONDERFUL is THIS!!!

See Tara! You'll have your 'crew' here to help you thru this!
Mark also will be a fantastic one for a play-by-play......his thread tells a faith-filled story of it's own and all it lacks is a publishing company!

Try not to be intimidated by the description of the laminectomy - it all just makes for a much more secured future - look at it as stable investment......
You can do this!
You've got a Dr who really is on the ball and knows what he's doing and (WOW) low and behold the 'other' Dr (the one with the boot ) even came thru for you and is communicating well with the new Dr.
This is all so very good.
SO very good!

Which manufacturer are you going with? If you mentioned it, it must've went past my short term ------ ummm ----- ? yeah.

Just take one thing at a time. Again...Mark's thread will be a wonderful thing to keep you in check......

So happy for you
Rae

[Mark56]

Originally Posted by tchr012

Wow, today has been such a crazy day and something really unexpected happened. I went to my appointment and of course my stim rep could not reprogram me yet again and we found out that now the battery and the leads are really messed up. Then we discussed if I was going to have another revision but we were worried because of my tendency to fall so he told me about the paddles! He even showed them to me and then him and my old stim doc (who was actually nice for a change) asked me what I wanted and said if I wanted the paddles I could get them! So, long story short I am going for it and now I am just waiting on the call from the surgeon to know when it will happen! I am just in a whirlwind of emotion right now and I cannot believe that I am actually going to get them! I am also kinda scared so I will be asking lots of questions for people with paddles I am very nervous but I feel very optimistic and that my prayers are about to be answered My first question is how long is the recovery, and are you woken up during surgery like when you have the regular leads in? I hope you sleep the whole time because that part is so painful when they wake you up! My stim rep said it will hurt more because there will be two pieces of bone cut out so I am trying to prepare myself for that since by itself it sounds scary lol. Anyway, I have homework to do but I wanted to let you know since this is such a big deal! I am also really hoping that some of you that have the paddles can maybe offer me some words of wisdom or just help alleviate some of my fears I appreciate any info I can get at this time! Take care 'sTara

Hi Tara- Today has been such a wondrously emotive day for me too, singing for the memorial of an elderly friend who was taken by pneumonia VERY fast. Emotive, and yet good. Good, because again I was singing, and I so love to share that for others when they want it [Untitle Hymn again, and Amazing Grace], and Good, because continued healing is showing that this technology works, and works well.

I have paddles. YOU will be fully anesthetised if your procedure goes as did mine. I was out and they had begun to have a little worry I wanted to stay out. Clearly, I have a recollection of wanting not to come back, you know, I guess, because the pre-surgery pain had been so bad and in throes of anesthesia I was somewhere so much more pleasant.

Yes bone was removed at about T8 for the laminectomy part of the implant. A very sore upper incision that was, more so than the lower incision which was for creation of the pocket and insertion of PJ. Then the routing of those leads between the paddles and PJ were not fun either, but then this is a major back surgery. Felt just about as bad as when I had the ectomy of a bone growth protrusion of matter from my earlier fusion/lami/discectomy into the nerve pathway. NOT nearly as bad as the whole fusion process was. For months after, I felt as though I had been ripped in half and sewn back together again. The bone growth medium protrusion ectomy went a lot better. This I rate more severe than that process but NOT NEARLY as bad as the fusion whizbang workup.

I walked that same day, a lot, and they well, asked did I want to walk home or have Cleo drive me? No, not really, but they were pretty amazed at my performance in recovery once I did awaken.

First night after surgery at home was every bit as awful as any first night after major back surgery. I hurt like H&*% and slept very little. Oh, I was medicated to the limits, but still pain was HIGH that first night. Got better over time as with any major back surgery.

Healing, well, if you have followed my thread, you know I was in on 29 June and by now I am fully off of all pain management meds. I rely completely on the PJ device from Boston Scientific to do my pain management. I still am not sleeping well.... am weaning off of the withdrawal meds, taking less Librium and experimenting with less of the Compazine. I experienced a lot of withdrawal stuff, from insomnia, to diarrhea, to nausea so bad that I then, oh yes.... vomited.... a lot. I have had some irritability, and restlessness, but I think these symptoms are abating. Gee, this would almost qualify as my post for today, but it is over here rather than there, maybe I will copy it in and put it there too.

Since I have this awful neuropathy below the knees, I am unsteady without the trusty cane. I nearly fell face flat at therapy yesterday when I picked cane up and tried to balance. HA HA HA. Well, I won't try that one again. I feel my feet not at all, like they are biometric prosthetics or something, kinda quirky, I guess.

I am THRILLED to have paddles..... THRILLED. I even raised my arms above my head to hang my own suit back in the closet today after the funeral. No effect on the impulses. PJ sang right along and is still buzzing me.

Any questions at all, just tuck them in Rae's pocket for delivery to me [kidding of course] and I will be sure to chime in. Truly. I am happy for you that a solution is coming and soon for you. You have waited a long long time for this help. God is good!!

Praying still,
ASAP,
Mark56 PJ

[Rrae]

What a DAY you've had!
You've had so much on your plate especially here lately!
I didn't realize you are having sleep issues also! (Me too!)

You just keep giving and giving of yourself.....

((((HUGS)))) for you, dear Bro......

Please do whatever it takes to get some rest and take time for YOU.

Originally Posted by tchr012

Wow, today has been such a crazy day and something really unexpected happened. I went to my appointment and of course my stim rep could not reprogram me yet again and we found out that now the battery and the leads are really messed up. Then we discussed if I was going to have another revision but we were worried because of my tendency to fall so he told me about the paddles! He even showed them to me and then him and my old stim doc (who was actually nice for a change) asked me what I wanted and said if I wanted the paddles I could get them! So, long story short I am going for it and now I am just waiting on the call from the surgeon to know when it will happen! I am just in a whirlwind of emotion right now and I cannot believe that I am actually going to get them! I am also kinda scared so I will be asking lots of questions for people with paddles I am very nervous but I feel very optimistic and that my prayers are about to be answered My first question is how long is the recovery, and are you woken up during surgery like when you have the regular leads in? I hope you sleep the whole time because that part is so painful when they wake you up! My stim rep said it will hurt more because there will be two pieces of bone cut out so I am trying to prepare myself for that since by itself it sounds scary lol. Anyway, I have homework to do but I wanted to let you know since this is such a big deal! I am also really hoping that some of you that have the paddles can maybe offer me some words of wisdom or just help alleviate some of my fears I appreciate any info I can get at this time! Take care 'sTara

Tara

Got up this morning and straight onto this site to see what good news there is to peruse. AND WOW was there some good news today.

ITS FANTASTIC to hear that you are going to get paddles, and rightly so. I cant believe the turnaround a couple of weeks has made to your life. All those prayers are certainly working and doing their part. how marvellous. Im sure you will steam through no problem. You have well used to pain , unfortunately, but you have come this far now, so that little nudge extra to get those paddles in will be a doddle for you Im sure. I know, as Mark has said, that it is a painful operation and its not something you look forward to, but remember the discomfort will only be shortlived. Remember the good feeling you had when you initially got your SCS, well IT WILL RETURN. Having the paddles seems more secure, from the posts that some have made on NT, so Im convinced that one day soon we will be reading your posts telling us how fantastic you are and how much your life has changed.
Mark is a great example of the success rate of these marvellous systems. He is a true inspiration. So hopefully soon you too will be inspiring us all with your wonderous story.
Im so pleased for you, I really am

Keep us updated and we will 'help' you along on your path to happiness and success. I have a really good feeling about this and I know in a couple of months we will look back at earlier posts and see how far you have come.

Keep smiling Tara and take care

[fionab]

Terrific news, Tara

While I can't offer any insight into getting the paddle, I'll be in the background, cheering you on. I'm sure you'll get lots of support from those folks here who have gotten paddles.

[tchr012]

I just now was able to login and wow, I am truly touched by everyone leaving all those supportive and encouraging messages I am really really appreciative of everyone here whether you share your story or cheer from the side lines . I am feeling much better about it now that I know I will not be awake during surgery! It seems like a minor worry but its a big deal to me because during my revision I was awake much more and it was so awful I still even have nightmares about it sometimes. The really good news is that I get to keep my stim rep because it will still be boston scientific and he is even going to the surgeon appointment with me! I have a really special relationship with my stim rep he and I talk about way more than just my stim and we have both shared stories of our lives and since 08 when this all began, we have really gotten to know each other. He is very good to me and I am so glad he will continue with me!
When I saw all of your messages it did make me teary eyed and I felt so overcome with and support and just love for one another! I have never ever had this great of an experience from an online community such as this one! I really think NT has in a way saved my life! Sarah, thank you so much for stopping by and adding your thoughtful and kind words! I know you are going through a lot so it means a whole lot for me to see you on my thread
Rrae for being there to cheer me on and brighten my day! Thank you for saying that I won't be alone through this and also for motivating to keep fighting doctors, health care providers until I was able to finally get the best help possible! I am also appreciative because you are one of the first people to reach out to me and help me feel welcomed to this group!
kzlrogue for sharing your story with me! I am so very happy to hear that the stim has helped you so much and I agree I keep thinking about when I had it the first time and it worked so I am ready to experience it again! Also, congratulations for going back to school! That is really awesome and it made me feel very good when you said I inspired you You have also been an inspiration to me too because when I read your posting about being able to golf again it made me realize that I deserve to have a better working stim and that I also deserved to be able to do the things I used to enjoy again too!
jackie, you are so awesome because you also are very good at pointing out all of the good and showing me again that I have a fighting spirit. You like a lot of the others always know the right things to say to encourage me and cheer me up!
fionab, for cheering me on from the sidelines (that is also very much appreciated). I know that you are also going through a lot right now so thank you for sharing your support and encouragement! And of course thank you a HUGE thank you and Mark56, for sharing all of your experience with me and relieving some of my fears! I will probably have to go back through and read your whole thread again in between my studying and I am very thankful you do share your experience and story with us!
I still feel kind of in a daze over all of this but I am very determined that this will be a life changing surgery again and it will bring me closer to my goals of becoming a teacher and being able to be a mother as well. It was funny because my doctor and stim rep kept saying that well you know this might not work and it might not help you and I just told them that I know it is going to work! I am holding on to that belief this whole process no matter how scared I get or nervous this is going to work and this is going to change my life!!!! Its also a very different situation for me to have people to lean on while I go through surgery because I do have my husband and family but with you all it is different because you can all understand to different degrees this process and can give me great advice along the way! I am so very thankful I came to NT (because my initial posting was scary for me too) and have met all of you! I love how we can vent here or get support or just share our triumphs and letdowns because even through it all we are always still here for each other, and it feels so good to know I won't be alone

Originally Posted by tchr012

I just now was able to login and wow, I am truly touched by everyone leaving all those supportive and encouraging messages I am really really appreciative of everyone here whether you share your story or cheer from the side lines . I am feeling much better about it now that I know I will not be awake during surgery! It seems like a minor worry but its a big deal to me because during my revision I was awake much more and it was so awful I still even have nightmares about it sometimes. The really good news is that I get to keep my stim rep because it will still be boston scientific and he is even going to the surgeon appointment with me! I have a really special relationship with my stim rep he and I talk about way more than just my stim and we have both shared stories of our lives and since 08 when this all began, we have really gotten to know each other. He is very good to me and I am so glad he will continue with me!
When I saw all of your messages it did make me teary eyed and I felt so overcome with and support and just love for one another! I have never ever had this great of an experience from an online community such as this one! I really think NT has in a way saved my life! Sarah, thank you so much for stopping by and adding your thoughtful and kind words! I know you are going through a lot so it means a whole lot for me to see you on my thread
Rrae for being there to cheer me on and brighten my day! Thank you for saying that I won't be alone through this and also for motivating to keep fighting doctors, health care providers until I was able to finally get the best help possible! I am also appreciative because you are one of the first people to reach out to me and help me feel welcomed to this group!
kzlrogue for sharing your story with me! I am so very happy to hear that the stim has helped you so much and I agree I keep thinking about when I had it the first time and it worked so I am ready to experience it again! Also, congratulations for going back to school! That is really awesome and it made me feel very good when you said I inspired you You have also been an inspiration to me too because when I read your posting about being able to golf again it made me realize that I deserve to have a better working stim and that I also deserved to be able to do the things I used to enjoy again too!
jackie, you are so awesome because you also are very good at pointing out all of the good and showing me again that I have a fighting spirit. You like a lot of the others always know the right things to say to encourage me and cheer me up!
fionab, for cheering me on from the sidelines (that is also very much appreciated). I know that you are also going through a lot right now so thank you for sharing your support and encouragement! And of course thank you a HUGE thank you and Mark56, for sharing all of your experience with me and relieving some of my fears! I will probably have to go back through and read your whole thread again in between my studying and I am very thankful you do share your experience and story with us!
I still feel kind of in a daze over all of this but I am very determined that this will be a life changing surgery again and it will bring me closer to my goals of becoming a teacher and being able to be a mother as well. It was funny because my doctor and stim rep kept saying that well you know this might not work and it might not help you and I just told them that I know it is going to work! I am holding on to that belief this whole process no matter how scared I get or nervous this is going to work and this is going to change my life!!!! Its also a very different situation for me to have people to lean on while I go through surgery because I do have my husband and family but with you all it is different because you can all understand to different degrees this process and can give me great advice along the way! I am so very thankful I came to NT (because my initial posting was scary for me too) and have met all of you! I love how we can vent here or get support or just share our triumphs and letdowns because even through it all we are always still here for each other, and it feels so good to know I won't be alone

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