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New Member

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:27 AM in New Member Introductions
Hi everyone -

This is my first post. I'm 51 and I've been dealing with back pain for so long I can't really remember exactly when it started. For years I would have sudden "spells" where pain would come on suddenly and was debilitating for several days to a few weeks. I remember a friend recommending Voltaren and it was a godsend for "the early days" before I actually herniated.

My first surgery came after months of waiting to see a specialist, "flunking" PT, and unsuccessful epidurals. July 2004 I had a discectomy/laminectomy at L4/5, L5/S1 as oupatient surgery. I was waking up listening to the nurses arguing with each other that I shouldn't be going home but that's what the doc's orders said. I remember thinking, "Great, I hope someone knows what's going on!" I was barely starting to recover when I felt something pop 8 days P.O. and the pain increased. MRI confirmed a new herniation. Unfortunately, I didn't have the best experience with this surgeon during the many weeks of appointments that followed. It was nearly impossible to have a conversation with him - brilliant surgeon - rotten doctor/patient relationship.

I met my current neurosurgeon by chance really. My dad was hospitalized with a subdural hematoma and the doctor on call was amazing with my parents. I made an appointment with him to review my case and am so happy I did. The way I felt was that since it appeared my situation wasn't going to be cut and dried, I needed to feel like I could really communicate with the surgeon instead of being brushed off. As I look back, it was a critical decision and I can't imagine anyone else treating me. December 2005 he repeated the surgery and also discovered I had 2 nerves exiting the foramen at L4/5 and peformed a laminectomy in addition to creating a larger exit for the two "buddy nerves". Even as I was waking up in recovery I could feel a tremendous difference.

I did quite well for the better part of a year when in October of 2005 I was working out in the garden and felt that now familiar pop. November of 2005 I was back in the OR with what was described as a massive herniation with adhesion to the spinal dura. As meticulous as he is, my surgeon was unable to prevent a small tear in the dural lining so I had 10 days flat on my back because of the CSF leak. Again, the pain relief was wonderful and immediate on waking in recovery. Although most surgeons would probably done a fusion this time, my doctor said he just hated to do the fusion yet if we didn't have to. All the way through this I've felt like he really cared and was happy to take as much time with me as needed to discuss the options and clarify any questions I might have.

Jeez, this is getting to be a novel - sorry, I tend to ramble a lot. I did very well for about 2 years when I was tying a bow on a baby gift when I felt the old pop again. How sad is that?! I wish it was at least a decent reason - like I was saving someone's life and unfortunately my back gave way - but noooo, a gift-wrapping tragedy! The good news though was that there really wasn't much left in there to herniate so although it had, it wasn't such an acute problem. I've now really entered the beloved chronic pain years, I guess.

Anyway, I feel like I'm lucky compared to so many of you with much worse trouble. But, as someone told me, "Everyone's pain is their own." I think what I hate most is that everything has changed so much for me. I live in fear of causing more trouble so I find myself not doing so many of the things I love. I've gone from a very active, happy, carefree and pretty fearless person to one who is sedentary, afraid of doing anything to hurt myself, isolated, 50 pounds more than I was 5 years ago, depressed. I told my surgeon that I feel like I'm walking on eggshells. One of the other things I just hate is that stupid 0-10 pain chart. I never focused on pain because I didn't want to dwell on it but that thing makes me feel like I'm chained to my life with 0-10 scale. Ugh!

Alright, before you all just keel over from reading this, my surgeon referred me to an interventional radiologist last year, who I just love. I'm so lucky to have two such amazing doctors! Beginning in May 2008, we've undergone a para-sympathetic nerve block, four epidurals and nerve blocks, a spinal cord stimulator trial in June with permanent installation in August. Unfortunately, it just wasn't covering my pain. After numerous attempts to reprogram and make some medication changes, We did a revision in December. I went in on the 22nd but they ran into trouble getting a satisfactory placement after several hours so they decided to do a temporary trial again. That was removed on the 26th and the permanent was done on the 30th. It's still hard to tell how things are going to turn out and this one in very affected positionally - more than the first one at this point - but it seems like there might be some effect. The hamstring is covered well but with some breakthrough pain. The numbness in my big toe is better, I think, but my calf and lower back don't seem to be responding. It's so hard to tell because my pain is intermittent - sometimes quite livable and other times unbearable.I guess time will tell.

Well, that's pretty much it! (aren't you happy? This is way more than anyone should have to read!) I don't know what will come next? The epidurals have never really done much for me and I have a terrible time with the steroids. He also started me on Lyrica and Neurontin at the time of the surgery and is now starting to wean me off of some part of them. I hated Neurontin the last time I was on it. I felt so ditsy and slow - I couldn't think straight. My husband calls it "Morontin". I went grocery shopping the other day and kept walking off with the wrong carts. It happened 3 times - twice with the same lady's cart. I think she thought I was high.

So, if any of you are still awake, have you had any experiences with the stimulator? What's next, I wonder? Maybe I'll have to live with it - but my doc is still very enthusiastic and optomistic. I go to see him Wednesday and I want to be prepared so I can ask him intelligent questions. Have any of you had stimulators that didn't work or only partially worked? I'm trying to keep my energy going for all this but I'm so worn down from it all. I also know stress makes it worse and I've had a horrible year. My father passed away last February and my mother has dementia and I had to place her in skilled nursing just a few months after Dad died. I really put myself at the end of the line which only makes it harder to have a successful outcome because I've waited so long - maybe too long.

OK, I'm officially done writing. This post is ridiculously long! I promise not to write so much the next time - there's just so much to explain the first time around. Thanks to all of you for sharing your stories. It really helps to know I'm not going it alone.

All the best! Marian


  • I totally understand about being scared to do too much for fear of more pain/problems!! I just got my SCS on January 5th, but I love mine!! No help at all with the numbness (I have lateral numbness in both legs, hips to toes), but the pain is greatly reduced. I would say 80%? I had quite a nightmare with my trial and permanent placement procedures due to scar tissue and other things, BUT once in place, the leads appear to be doing their job. I have 2 percutaneous leads with 8 nodes each, so my programmer has 16 total nodes to work with. I have 2 programs, one for sleep and one for day.

    I have the ANS/St. Jude Eon Mini and the pulse generator is tiny - just slightly larger than a silver dollar! I have hardly felt it at all, and wondered if it was put where I was already numb? My doctor makes a very tight pocket, and maybe that is why I have not had any issues with it?

    Within 2 days of placement, my leads moved and my programmer was nervous, but it appears to be fine. I've been very very careful waiting for scar down (4 to 6 weeks, they said). My coverage is lower buttock, entire thighs, then calves to heel. I kept it on much stronger at first, but noticed it was causing some pretty intense nausea. Turned it way down, sometimes keeping it on my sleep program all day long. Covers the nerve pain just the same.

    I am already doing so much more, even though being really careful until scar down. So happy to have so much mobility now after living reclined 23 hours a day for the last 2 years!! Am dealing with some conditioning now with my weak body! lol Get worn out easily.

    I hope your programmer can work some magic with your leads. I'm assuming you have percutaneous leads?? (the kind they thread up your back). What brand do you have? My programmer is great and I feel like I can call her any time and can go in for tweaking with no problem. I think I've seen her 4 times now? But it's only been a month tomorrow, but doing very well.

    Keep us posted with how it goes Wednesday!!

  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sorry you are dealing with chronic pain. ~X( please have a look around and make yourself at home. good luck as you search for pain relief! :D Jenny :)
  • Hi All -

    Yesterday was interesting as I experienced some pain that was approaching some of my worst. I tried experimenting with the stimulator during this time but can't really say I noticed any difference. I want to notice something so much but if I do, it's pretty subtle. My impression with the people who like their stim is that there is a clear difference in pain. That sounds like what you're experiencing, Cheri? There has been a lot of difficulty getting the coverage because the normal lead placement doesn't respond for me the way it does with most people. My stim is the rechargeable Medtronic. I have 2 leads now but haven't focused on reprogramming much yet though I will soon. The coverage is pretty good now except for my back but the pain just comes right through.

    I'm supposed to return to work after my doc's appointment Wednesday. Fortunately I only have 8 more months to work until I can retire with 30 years! It's a good thing because I've pretty well wiped out my sick leave and vacation with 2 back to back surgeries and 6 week recoveries. I'm wondering what's next if the stim doesn't work. Anyone have any experience with that?

    I'm also worried about work. I haven't really been performing at my best for quite a while which makes me feel so guilty even though I was a proven worker for the first 25 years. I appreciate my employer's willingness to allow me to work from home part of the time but I wish I could just go back to being able to work normally. It's been quite a switch because I had such a physical job. ( I do video production and make educational materials for a large veterinary clinic) I miss not having to worry about my back and I hate having to ask for help not to mention worrying about getting hurt if I can't get out of the way of a large animal - or worse, putting someone else in danger. I'll be glad when I don't have to feel bad about my job anymore. I've really enjoyed being home without the guilt. I'm in hot water with some people because I haven't completed projects.

    Last year was so hard, though between my problems (I was in the hospital 7 times either for a procedure or surgery) and my father passed away. We were very close. I also had to place my mom in skilled nursing because of dementia. Any one of these things would be rough but all together? I'm wearing down. I'm trying to keep the faith that something will work but I was so disappointed when the first stim placement was a failure and now, it's just a nightmare. I'm dreading everyone asking how things went or saying how they're glad I'm back so I can do this or that. Ugh! Just makes me tired thinking about it but I know if I can just wait it out for a few months, I'll at least have that stressor removed. I should be able to finish my degree by the end of spring or summer too so that'll help too.

    Thankfully, my doctor is amazing. He's really held me together. He's so enthusiastic and upbeat that I've got to keep up my end of the bargain. I told him - In for a dime, in for a dollar! I guess I'm going to try to think one day at a time. Hope this email isn't too much of a downer, I've just been dreading this week and having to go back.

    I promised not to ramble again in my next mail - Oops! Thanks for all your kind words and remember to lift with your knees!

  • Hi Cheri

    I'm so glad your stim is working. I can't imagine what you've gone through the last 2 years. You must have been stir-crazy! I've spent alot of time in bed because that's where I'm most comfortable but nothing like you. I actually have times where I feel pretty good but then the bottom falls out. Last year after my father passed away I went to see my neurosurgeon and said I thought I needed to hear him tell me this was as good as it gets and I'd have to get used to it or I wanted to pursue whatever might help before it's too late. I really pushed my own needs to the back shelve when my folks needed me which I'd do all over again but has definitely led to some permanent difficulties with loss of sensation and muscle strength.

    You are much more saavy as to your stim than I am. I have a Medtronics unit with a rechargeable battery. My first trial was in June with the permanent placement August 16th. Went back to work the end of September. Many, many programming sessions later my doctor suggested a revision. That was scheduled for Dec. 22nd but after several hours they still couldn't get a satisfactory placement and my BP and HR were elevating so they basically set up another trial. I wore that until Friday, the 26th and the permanent placement was done on the 30th. I have good coverage for my hamstring but my calf is pretty dead as far as sensation. Evidently I'm wired differently than everyone else because the normal lead placement isn't even close for me. They never could get whole parts of my anatomy covered. The Medtronics rep. said that most people describe a feeling of pulling on a hip length tingling sock. Mine is more like a sock with tons of big holes!

    The other problem is the sporadic nature of my pain. Of course, while the trial was done, I was feeling pretty good. Sigh! I'm still on leave from work and will have about 40 hours of vacation left when I go back (hopefully Thursday) I'm meeting with my doc tomorrow afternoon. I've been healing pretty well from the surgery - both times the incision in my bum have been the worst - very sensitive. I've been joking about getting it tattooed like a blue jeans pocket! Anyway, Saturday night I felt the old familiar pop in my back - different than what the "poppers" were talking about. When I feel the pop something bad is coming. I've actually felt each time I herniated/reherniated. Sure enough the next step was like a hot poker. Then the back pain started. I was actually glad to have a good test for my stim - nothing! It didn't make any difference and even caused pain at times. I tried turning it up higher but then I couldn't control my leg it was spasming so much. I tried all the programs I have but none of the areas with pain were helped from what I could tell. I could have cried.

    Now I'm dreading going back to work. I can just hear everyone saying, " We're so glad your fixed and back and do we have jobs for you!" The good news is that I only have 8 months to go and I'll have 30 years in with a state job so I can retire and start receiving a monthly income immediately. It's just not the way I wanted to go out - with a sputter. Oh well, at least I've managed to hang on until the magic number. I just don't know what my doctor is going to suggest next. Depending on what, I'll just need to wait till more leave accrues or take it without pay.

    I have 2 leads, I guess. I thought he removed the first one but the Medtronics rep. said that he left it in. Thankfully I was asleep at that point. I really had trouble during all the procedures, including the epidurals and nerve blocks with the sedatives. The second epidural went fine but all the others, I swear I could feel almost everything. I really felt the incision once they got the lead placed this last time. The turned the juice up after I groaned and then I was happily snoozing. Usually I'm so sensitive to those things that I really sack out. Maybe I'm getting immune from stuff since I've been taking Percocet so regularly. I'm not sure how many nodes I have but it was also placed percutaneously. I really liked my rep. the last time a little better. They were very nice this time but the first guy kept in very close contact with me. This time, I think it's going to be more up to me.

    Well, that's all for now. My posts are so long! I'm sure most people are thinking, "Oh not again!" Blah! Blah! Blah! I'm so happy you're able to get around a little. I know what you mean about being out of shape! I have always been very active - was an exercise jockey, I play bagpipes and my job entails a lot of running around (and sometimes running away from) with the animals.

    Well, take care and I'll be anxious to hear how you progress. I'm pulling for you! Oh yeah, one question. How did you know your leads moved?

    Sleep tight!

  • I can also relate to being afraid to increase pain levels and not doing much of anything because of the fear. Please take a look at the pain management section and you will find others with experience with the stimulators. Good luck and please keep us posted.
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