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Hello to all :)

babybubblesbabybubbles Posts: 159
edited 06/11/2012 - 8:44 AM in New Member Introductions
Hello, everyone! I hope to make a few new friends here -- no one needs to tell any of us how important it is to talk to someone who's been there. I've been there too -- you can read about it in the paragraphs and signature below. ;)

I have been a very active person in the past -- taught and/or took about 15 aerobics classes per week, was a personal trainer, loved gardening, was a voracious reader (mostly history and gardening). I managed to do all this despite everyday moderate to severe arthritis pain, and even loss of sensation in my hands for several weeks in 1998. I knew I had spondylolisthesis in my lumbar spine back in 1996, but aside from a few pain injections when needed I just kept active, stretched, took NSAIDs, and dealt with it. I never had a diagnosis for any cervical or thoracic conditions, although I had constant pain in these areas, oftentimes sharp and radiating. But you see, I had had pain for so many years, I just figured this was something I had to live with. (An orthopod had told me when I was 34 that I was "just getting old." How's that for a kick in the head?)

It wasn't until late 2006 when, while trying to get help for my lumbar spine pain, I noted in passing to the neurosurgeon the pain and loss of use of the first three digits of my hands 8 years prior. That set the ball rolling on addressing severe multi-level cervical stenosis that had reduced my spinal cord to a mere thread. I had a 3-level ACDF with 2-level hemicorpectomies a few weeks later. Although I still suffer from the effects of such severe spinal cord compression to this day, along with newer deficits, the surgery did reverse the severe stenosis that was present. (My condition was such that a slight blow to the head would most likely have left me paralyzed.)

As someone "like you" (not that anyone experiences pain the same way) who is also a surgical nurse, I would like to offer a few words of wisdom to anyone just starting out with a diagnosis:

1. Surgery should be treated by your doctor (and you) as a last option to dealing with spine issues. The thing is, the main purpose of surgery is to prevent further deterioration of a serious anatomic condition. If a spur is pressing on your nerve root, surgery is performed to free up the nerve. It MAY or MAY NOT lessen or end your pain -- there are no guarantees.

2. "I have pain, my pain does not have me." Trust me, I have to repeat it to myself all day, every day. But keeping a positive mindset DOES make a difference. Yes we need medications, and they cost too much. But endorphins are free! Laugh if you can, chuckle if you can't.

3. Do everything within your power to MOVE. It is true true true -- if you don't use it, you will lose it! Every day in the operating room I have seen pain patients who are immobilized, not by pain, but because their muscles have shriveled and their joints locked up. Their pain was real and severe, and yes moving caused more hurting. But they allowed the fear of pain to become the fear of moving, and they gave up. If it truly does hurt too much to stretch, ask your doctor if you can see a therapist to learn some passive stretching techniques to do at home.

Finally, know that I'm not a "happy Hanna" who bravely strides through the pain with a smile on my face. I haven't been able to work in almost 8 months, and I'm fearful of our financial situation. Will we lose our house, our cars? I can live without "things" but I can't bear to think of losing our pets. I'm two months into an SSI claim, and after all the expensive, advanced tests I've been through in the past four months, SSI wants me to have an exam with their doctor -- for an X-ray and EKG, of all things. For many months now I can't straighten up, my leg drags behind me, and my buttocks and legs burn as if I've been whipped with a leather strap. Just about every level of my spine is herniated (I have about 7 herniations in the thoracic spine where it is rare to have any problem). Rounding my lower back to relieve pain actually *increases* my thoracic pain and vice versa. I can hardly turn my head, and I have shooting pains in my neck, arms, and hands. My hands feel as if I've fallen and scraped them on cement. I have developed early cataracts (the opthalmalogist says due to corticosteroids prescribed in the past to treat severe asthma and back pain). I'd say my usual pain is 8 to 9 (0-10 scale). I've now had just about every test you can imagine (including for MS), and after several visits (each entailing yet more tests) I have hope that my neurosurgeon will tell me next week exactly what surgery he thinks will help my lumbar spine. (He thinks I need a neurostimulator to deal with cervical/thoracic issues). Things are hardly peachy...

But I still have hope. I've been through an awful lot in life, haven't you? It hasn't beaten me yet, and I hope that, at least most days, you can say the same. I hurt, I'm angry about it, it's not fair. But for now, at least, this is my life, and I ain't giving up, not by a long shot.

I wish you all the best!


  • You have a positive and knowledgeable spirit! Best wishes for your upcoming Dr. exam for SSI. There's a lot of info here and support when you need it. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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