Grace and peace!
I wanted to start out by saying thank you for this forum. I've had lots of questions as of late and when I google them I always seem to get the best information here.
So here's my situation: I'm a 41 yr old female, mom and grandma, quite active, love to hike, camp, garden, etc. Most of my adult life, I've lived with a "bad left shoulder." It would flare up every so often and give me a couple days of pain and eventually ease up. I wasn't surprised as I'm blind in my right eye and sometimes overuse my left side because of my limited field of vision. I had X-rays done a long time ago and was told I had mild osteoarthritis and to take NSAIDs as needed.
In summer of 2014, my shoulder flare up didn't go away like it normally did, and I was having some neck pain, but what was really bugging me was my left arm. It hurt so badly it was keeping me up at night, but not like a muscular pain. I'm thankful my PCP didn't do what all the other doctors did. She said, "Honey, that's not your shoulder. It's coming from your neck." She referred me to a neurologist, who is also a neurosurgeon.
The day before my initial appointment, I spiked a high fever and was vomiting at least once an hour for a good 6 hours or so. I'm a nurse, so although it takes a lot to alarm me, it did occur to me that I just might have meningitis, and I thought that was a good reason to go to the ER. An MRI, which I was blessedly almost unconscious for since I'm claustrophobic revealed 3 herniated discs with compression, and bloodwork revealed I had a good old fashioned stomach bug. And fortunately, I already had a follow up appointment in place.
I like him my neurologist. He's a good guy, busy but has a good bedside manner and a good reputation, and to my relief, he is very conservative. He wanted me to start PT, but as luck would have it, in 2 weeks I was to go on the trip of a lifetime to Europe for 18 days, so he suggested an epidural steroid injection.
I've had 2 babies, and the thought of an epidural was scarier than the pain of childbirth, so I was very uncertain. Then again, I wasn't going to enjoy my trip in the pain I was in, so I gritted my teeth and went for it. I was really scared and it wasn't a fun procedure, but it did help, and Europe was amazing.
I had resigned my position to go on this trip. I had been working in an inpatient rehabilitation hospital. We had a lot of strokes and oath patients, but we also had a LOT of back/neck patients. I've seen the worst of the worst; surgeries that went amok, central cord syndrome, Cauda Equina, upper and lower paralysis due to all kinds of sickness and injuries. I have people tell me it's a blessing I have so much knowledge, but I'm not so sure. I'd get claustrophobic every time I had a patient in a neck brace, (and those things smell horrific after awhile), and it seemed like nobody had just one back surgery. A lot of patients regretted the surgery, plenty told me to never ever do it, and I often wondered how on earth someone could wind up bedridden, without hope or motivation, chronically constipated, and addicted to painkillers. Not in a judgmental way; in a sad, angry way because these folks were broken and not getting fixed due to a lot of factors. To find myself suddenly diagnosed with Degenerative Disc Disease and remember all those folks was a scary thing.
I lost my health insurance when I resigned my position, so I made up my mind: I was going to get well. I was going to fix this. And I did, or I thought I did. I joined the Y and began with simple range of motion exercises, gradually adding weights. I began running. I began to get into really good shape, and do you know.....I wasn't in pain anymore, at least not all the time. My right hip would pain me at times but I thought it was due to the running and middle age. I was convinced I was cured. The epidural doc gave me something like 90 Percocet last July. I probably have 60 left. If the pain gets really bad I'll take one but it's nerve pain so I find it's really not super effective. Probably just helps me relax more.
Except this spring I developed bilateral carpal tunnel syndrome so badly I was dropping just about everything, including exercise equipment. My grip strength just wasn't good. This time my PCP told me to wear braces and go to an oath guy. He did EMG testing and told me I needed surgery to fix it. He was actually a bit put out with me when I told him I really thought since this was bilaterally equal I should probably check with my neuro guy first, but I wasn't about to have a surgery for nothing.
Neurologist welcomed me back and said "Let's start over where we were last summer" and I began PT in June. My range of motion in my neck and shoulders increased, but the CTS symptoms didn't get better and some nights it was so bad it would wake me up and keep me awake. I decided to keep with it until early this month my neck began to hurt a bit again. I was walking around a convention when I realized my gait felt funny and I was off balance. When I put my right foot down, I wasn't feeling the impact as much and was completely off balance. The pain was now in my neck, left lower back, and both legs, sometimes shooting, sometimes just feeling like a low voltage electric current was running through them. I went back to the neurologist. He sent me for a thoracic MRI which came back clear. He said he wasn't surprised. When he told me he thought it was coming from my neck and "Since this has progressed, depending on what the new images show, we may have to consider going in." He got X-rays at the office and I have the cervical MRI tomorrow, which based on the last one, will require 5 mg of Valium to get through.
I apologize if I sound like a brat. I know so many people are suffering worse than I am. But, guys, the thought of neck surgery is enough to send me into a full blown panic attack. I know there is nothing I can do until I have the info, and that is why I am doing research and signing up here and trying to arm myself with as much knowledge as I can. I've enjoyed good health and fitness and losing that has been devastating. The concept that I can't fix or change this is very difficult to deal with. I just want to make it better. Sorry for the novel and I look forward to exchanging information and hopefully can be of some help or support to someone. Welcome to Spine-Health
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