Hi, I am new to this subforum, but I started posting an introduction in the new members forum last week. I have had my Neurostimulator implant since August 08. I was doing really good with it until my leads moved and I had to end up having a revision done April of 09. This helped me again and I was doing great until I had a very bad fall in September 09. Since then things have not felt right and my stim stopped covering my pain in my back and right side even though my left leg was okay. My pain dr tried nerve blocks and injections and it did not help and now its to bad that my stim rep cannot even reprogram me! I just had him try it again today and everytime he tried to do it I ended up with more pain and pressure So, after that disappointing meeting he told me that there was nothing else he can do right now because they have to figure out why my right leg is not only in pain over the stim but also goes numb pretty often (which causes my falling). He also said that the only options after that would be for them to move the lead which means I would have to continue using walker or wheelchair with my stim or have them do a surgery with paddle leads and that would be way more involved since they take out a piece of bone! But the pain dr told me that no one will do anything until I see the neurologist which is august 9 to see what they say and see what they want to do. I am just so frustrated right now because I am also trying to go to school full time and I am so tired of being in pain and also tired of the falling or the losing feeling in my leg! I used to love my stim because it helped have a life that I wanted where I was able to walk and exercise and do everything and it was great because I have lost so much since the accident that made me have to get the stim in the first place. I am just really upset and feeling down and looking for others to talk to! Thanks for listening

Tara

z
Welcome to our little group
We listen well and offer onderful support!

Tara,

You've come to the right place for venting and support that we all need when the pain starts taking over. Hang in there!! Everyone here is FANTASTIC about listening and getting you to smile which always makes the pain more tolerable!!

I'm sorry to here about the problems you're having with the SCS. If it has helped you get your life back in the past....please think about the paddle. I have the paddle and had to have bone cut out. I know it is more extensive than just placing the leads but think of what you may gain from it. I've had JJ (that's the name I've given my unit) since Feb of this year. It was slow moving for the first 4 - 6 weeks but I also was getting use to the settings as I had JJ set too high so it would tense up my muscles and cause more pain.

I've heard so many different stories......from people on this site to my own Dr. My Dr. actually gave me the go ahead to start golfing about 3 months after surgery. She said that because of the paddle those leads are VERY secure. She said that even if she were to go in and take the leads out (at that time) she would have difficulty. (Now, I haven't been mentally prepared to golf but I'm really really close.....as in I think I'm going to try it this weekend!!!) I have gotten such good advice on this site regarding people's experience and what they recommend. One point that was made was to wait until at least 6 months before becoming more active (other than walking) because even though you have the paddle, the leads from the battery to your spine are only secured by scar tissue. I think it really depends on your Dr, you as the patient, and what you both feel comfortable with.

Hang in there!! Remember you are surrounded by people who care!!!

I read your post in the intro's and am touched to tears!
This forum was made for you, Tara, and i'm SO glad you've found us!

I'm pretty much speechless at the moment, and am so thankful to see all the replies you've received from the 'A-List' of brave troopers here at NT......actually, there is no 'B' list.....
The support here is beyond comprehension.

I know that feeling of being completely overwhelmed. But if you picture yourself as who you want to be 5 years from now, I bet you will be amazed at what can be done in your life with the determination and strength you have.
Take things one at a time and do your best to put things in perspective.
Stay strong on the positive aspects of what you've experienced so far......your SCS worked wonders for you. You had a terrible setback and things haven't been the same since you had your fall. BUT,
You have a husband by your side....time is on your side......
you have a good relationship with the Rep who wants that SCS to work for you again.....
If you end up having to 're-do' your implant and get the paddle leads, you'll probably look back on this and see that perhaps it worked out better for you in the longrun to have it done this way. There are several here who've had the laminectomy, and, yes, it's more involved than the percutaneous lead, but it's also a more 'solid' approach.....the chances of lead migration are much slimmer by having the paddles, so please don't feel intimidated by this. These SCS's are becomming more commonplace as the days go by and many MANY people are testifying that they've improved their quality of life beyond any expectations. You are familiar with what the SCS is all about, so you know that there is that goal to attain.
Try not to put too much pressure on yourself at this point in your life. You've got aLOT of ambition, which is great.....just try to take it slow right now....be easy on yourself and accept that your body is in a fragile state, but on your way to improvement.....
It will take time, but it'll be worth it in the longhaul. USE that wheelchair, or a 'walker' or whatever you need at this moment. The last thing you need is another bad fall. GET the testing done that the Dr's are wanting to do.....it may seem needless and questionable, but chances are they are doing most of this to rule out conditions, which is a good way to cover bases.....

Time is on your side, i said it once, but it bears repeating.
People have latched on to your posts because we see someone determined and deserving of a fulfilling life.
You've got the strength...... now you've got the support......
So glad you're here

Truly Caring
Rae

Hi Tara!!

I saw you in the intros and am glad you came to the SCS subforum. These folks are tremendous!! They come alongside when you vent, as you should, and try to help, giving what any can by way of personal experience and thoughts, while also providing shoulders on which to lean.

Hope your school work is still coming along despite the pain, the worry, the fear about your stim and its current very difficult issues. College work is hard stuff, and then the student teaching obligations you now work through. I just hope and pray that all will be well in your education as you near completion of that life goal dealing with having your stim give fits. Real fits of trouble as it seems not to work right for you now. Goodness, several of us on here have been in the Bionic Butt club for less time than you have known your stim. We do have a feel for the agony you are living right now because the pain is so recent in our past.

Even though the stim I have is doing its work to thwart the nerve pain I have known since my 2005 wreck, it does absolutely nothing for the numbness I knew far before stim came into my life. Sure, back surgery in 2006 did relieve back pain, but its circumstances seems to have left me with chronic numbness in both of my legs, the left below the knee, and the right foot besides the pain causing nerve damage which resulted in recent SCS implant surgery. So, yes, I do have to use the cane, the wheelchair some, shopping carts as temporary walkers..... and all because I cannot feel the earth so much anymore. The brain and eyes know it is there, but for some reason the lower extremities have this propreoception issue.

When you talk about your original surgery and the implant, then move to discussing the speculation about more surgery and partial laminectomy with implant of paddles, I kind of wonder whether your original implant was an implant of leads and no paddles? Maybe if that was the case, it could be that your docs wonder if leads were dislodged and now think in terms of technology which includes more invasive steps. My recent SCS involved partial laminectomy for implant of paddles. I do realize this procedure is VERY recent, three weeks ago today, but the effect on the nerve pain thus far has been really very good, and friends and family are thrilled when they say the "old Mark" has come back. I know such a surgery is invasive and takes a while for real healing, but for me this has begun to instill great hope!

In reply to your intorduction post, I shared that yes, I, too, had to go through the neurological exam after my wreck. This was to make sure what was going on due to the concussion I suffered with after effects. So, that step was necessary in my case. It has seemed over the years a great many steps have been medically taken to "cross off" possible causes of issues as we moved closer to one treatment and then another. My wife and I ached in frustration time and again as this was tried and then that. Doctor after doctor after doctor visit. We wondered whether we would see the end of this path. Now we begin to think in terms of positive conclusions, potential realized ends.

I so hope for you that your caregivers come together to suggest a result which is REAL and EFFECTIVE in bringing a treatment to resolve your current return to pain. Each of us can certainly share at least a bit of knowing understanding of your pain as the survivors of that period between the Trial surgery and Permanent Implant. I ache for you that your implant has become so troublesome and pray that solution is found soon!

No answers are provided for your situation here tonight, but caring is abundant.
Prayers for you,
Mark56 PJ

Hi Tara- You came into my mind this morning, and I was just thinking of you and those difficulties with your stim. I surely pray that today all will be well for you.

Praying,
Mark56

Wow, I am so amazed about the massive support I am getting already from joining this site! I am also inspired by everyone else's experiences and it makes me more determined to keep going after my dreams even while I am dealing with all of this. It is really nice to know that I can go somewhere and talk to people that don't immediately judge me or brush me off ! Sorry, about the time it takes for me to get back to people but I have a lot going on with my school stuff and also dealing with my other health problems but I do read the replies and appreciate them! I also told my therapist that I was talking to other people online with stims and chronic pain and she said it was a great idea because I feel alone in dealing with this and my life has changed dramatically and I guess I am still adjusting. Also, for the time being I am back on my walker because I have to be careful and not fall anymore as it will add to more problems and I don't want my leads to move again! I was using the wheelchair for a while at school but I broke a wheel (the pavement is all messed up there) and now it looks like I am definitely back on the walker which upset me at first because everyone stares but then I got to thinking that it really does not matter what they think and just because I have to use the walker now does not mean it will be forever! Yesterday when I went to campus I held my head a bit higher instead of being embarrassed or ashamed because I am taking care of myself and that is way more important than worrying about my appearance to others I was also nervous because I had to do my teaching demonstration in front of kids and was on a walker and I was afraid of their reactions but it turned out to be a great experience! It also made me realize that I am willing to do anything it takes to be able to get my dream of becoming a teacher and helping children! Well, I am way behind in my music class so I need to work on school work I just wanted to make sure to give a reply so that everyone would know how appreciative I am to have supportive and understanding people listening to me and sharing their experiences with me! I am looking forward to getting to know more about everyone and like I said I am very inspired by your experiences and determination! Thank you for keeping me in your thoughts and prayers! Thank you so much Mark56, Rrae, kzlrogue, pooh_ac, and also Burntmarshmallow! You have all made me feel so welcomed and I am so glad that I found this community!

Tara

I was smiling the whole time I was reading thru your post!

You are an incredible young woman!! You've got a huge purpose awaiting you in this world so in need of caring folks like you! Your ambition and feedback has inspired ME too! I somehow felt 20 years younger as I read your post!!
And don't worry about having to post replies......we know you are busy!
If you have a chance to read our feedback, just maybe punch that "thank you' button at the bottom right corner of each post,,,,,then we'll at least know you've 'heard' our outpour of support! k!
Don't put the extra pressure on yourself!
just give us an update to your thread here when you have time

You are awesome!
YES! Hold your head high as you make your way around campus!
Make jokes about it if you have to somehow people seem to be drawn to humor, despite a 'not-so-good' temporary situation.....
Tie a big smiley face balloon to your walker !
Rae

Rae, Thank you so much!! I just now figured out about the Thank You button so I finally started using it, I would have sooner but I guess the stress made me confused on how to use it I will definitely keep you posted and updated on things, I am also going to try to start posting more! I am very appreciative for all the support and encouragement that everyone keeps sending my way! I have survived a lot of really bad things throughout my life (besides the health problems and pain) so I always want to give back. I feel like my purpose in life is to become a teacher and help children and that is my way of giving back

I also really liked your idea of tying a smiley face balloon to my walker! I definitely think humor helps in situations like that

Oh YES! You'll soon discover there are all kinds of fun 'diddies' to play around with......wait til you happen upon the big page full of 'smilies' and characters you can animate your post.......it sure brings out the kid in me

Actually, Tara, we are gonna do a 'chat room party' for the first time ever in our 'Buzz-Butt' Club! Come join in! Pop in and say hi! This is new to us, so I'm not sure what to 'wear' which hat do i look better in?
I think we are goin in the 'chat lounge' (clear up top of page) around 8:30 Central time tonite........ how cool

see ya there!