First off, I appreciate anyone who offers their time to read thru my frustration. I am finally at my wits end and want to leave mainstream medicine because these people are talking thru places that weren't meant for speech.
I am a 53 yo woman (and ususally quite nice, most people like me) whose had, not once but twice, a multi level cervical laminectomy with revision surgery in 2001 and again revision surgery and fusion in 2006. Today I still suffer the same symptoms. My neck flat out hurts. My head feels like it weighs 30# and it's getting harder and harder to hold it up. Sometimes I will wear my hard collar just to support my head when I'm very tired or the weather is very bad. My right arm has developed a mind of it's own and frequently hasd it's own agenda - spasms I guess you call them. But most of all, it's this incessent burning that is breaking my mind and spirit. My arms from the elbow to shoulder caps burn and all around the back of my neck burn. When I shower, I feel like I'm standing an acid rain bath. No - this description is as accurate as I can make it - not for drama.
My surgeon sent me for an emg - then decided I should have those "shots" which did no good and the doc that does them said no more go back to the surgeon. So, now, ok, we do more exrays - oh, broken screws at T1. Two screws have fractured inside of the vertibrae body or walls.... ummmph. My arms are sore as hell, my strength is down to almost zero in my right (dominant) arm --- I had a CT scan. So, now, after a series of C-spine MRI's. a CT scan, nerve conduction test and standard exrays - FIVE different doctors have said there is severe stenosis and impingement at C5, 6 7 and T1-2. Oh yes, a neuro confirmed FMS...that was diagnosed by my original surgeon as "alodynia" for phantom pain with no source. He left the area in a hurry 6 years ago. Gee, I wonder why.
Anyway - I had a recheck with my surgeon this week who was very busy and sent his PA in to see me.... umph.... I'll tell you what he said to me, but you have to sit down.... He (the PA) said there is NOTHING wrong with my spine, no stenosis, no impingements, yada yada, BUT, there is rotator cuff damage and a cortizone shot will fix me right up.... What the .... heck!!!!! This rotator cuff thing came from left field. Nobody even looked at my shoulder before he even said this...I showed him all the reports I've been collecting from all these tests, which include pictures and research I've done on my own - he blinked at me... "where'd you get all that?" Never mind that, I asked, how can you tell me I'm fine when all the doctors you referred me too have a very different opinion?
I don't know where to turn or who else to see. My skin burns so badly when I rub it, it feels itchy - then I scratch - bad mistake!!!! Sometimes, there are the tiniest of bumps on the surface that bleed if I do give in to scratching - but to just look at these arms - there is no visible rash, the bumps are easier felt than seen.
I recently took myself off neurontin (gabapentine) 2700 mg a day! And I have to admit, even though I was on them for 7 years, and think I have been permanently dumbed down by them - they worked. I have to give in and go back on them. But not 2700 mg's again.
Oh, also, I have been complaining that I choke a lot. I have to sleep on a -U- shaped pillow, because ANY pressure on my throat makes me gag (this includes collars and jewelry). They sent me to the ENT for that, and since he couldn't find anything wrong, he figured I should live the rest of my life on acid reflux medicine.... OMG! I don't have acid reflux, I have scarring from anterior cervical surgery and my throat's messed up. Why can we figure this out and they can't? .
I know I'm not alone with this....Any thoughts? And, again, thank you for sharing your time with me.
J