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