Grammyof2
member
United StatesFirst, my history...
Spondylolisthesis and central canal stenosis have plagued me since 2004, though back then they were called "sore back" and Restless Legs Syndrome. I'm among the minority of RLS sufferers whose legs jump around because stenosis irritates their nerves in the spine.
My PCP prescribed Percocet, which stopped the jerking! But she retired a few months later and her replacement declined. For years, as the jerking got worse, a series of neurologists prescribed barely-helpful RLS drugs. Physical Therapy didn't help much. I worked in a health agency, assessing patients from behind a desk while my legs jerked around and I found excuses to move around my office. Sleep was rare.
Around 2007 a sleep doc (I also have sleep apnea) prescribed methadone. It helped! In 2013 he promised to start me on Bupropion, which has a longer half-life, saying that increasing doses of gabapentin while I took less and less methadone would ease the transition. He said withdrawal takes 6 months. I looked it up: it always takes 3 days. He lied, telling me I was wrong. I suffered mightily--gabapentin barely helped. With my lower body jerking every six seconds, I couldn't function at work or at home.
Desperate to keep working, I saw a spine surgeon at Scarborough, Maine's Spine Center (2 hours from home). I showed him a case study in which supposed RLS was stopped by spinal stenosis surgery. Assuming I was a faker trying to get disability, he laughed me out of his office.
So I had to quit the job I loved. Realizing his plan had failed, my sleep doc admitted he'd lied--he just wanted to stop prescribing methadone--and abruptly referred me to a different sleep doc and to a neurologist. An MRI revealed the Spondylolisthesis and central canal stenosis.
For years, when stuck sitting down or trying to sleep, only banging my knees together hundreds of times quelled that awful jerking sensation. The neurologist prescribed methadone, which stopped most jerking, but the damage was done: in 2017 and 2018, I had total knee replacements (physical therapy really helped then).
At this point, I could barely turn my head. A new MRI revealed cervical spine arthritis, so I was referred to another spine surgeon in in the Scarborough practice. (I keep going there because it's associated with Maine Medical Center, the biggest hospital in the state, and that's where the best spine surgeons work). He'd read the first man's notes, so he just ridiculed the obesity caused by lack of exercise and ushered me out, un-helped, warning of total body paralysis (but not offering surgery) and saying I'd have a heart attack soon because I was fat.
My PCP ordered lots of tests: my heart was fine.
Despite the TKRs, my lumbar spine pain meant I could no longer walk more than a block. We bought an Upwalker so I could get some exercise (fantastic!). My PCP referred me to a pain clinic ("Physiatry"). Over a couple of years, their interventional radiologist did 3 sets of rhizotomies, which permitted me to walk on my own, and they switched me to Suboxone (Bupropion + naloxone). During that 3-day withdrawal period, my body jerked 60 times a minute.
Standing up to clear the dinner dishes was agony, so I had an epidural spine injection. The jerking was GONE! That lasted a blissful three months, proving my theory that the stenosis caused it. The second injection lasted two months. Full of hope, and rarely in pain thanks to an ever-increasing dose of Suboxone, I set aside the UpWalker, bought a set of trekking poles, walked over a mile a day, worked out at the YMCA, and lost 80 pounds in 80 weeks.
In November of 2022, the burning, blazing, blowtorch pain I feel in the back of my thighs when I get up after lying down a while got even worse, so I was referred to a very kind interventional radiologist in the Scarborough practice. He studied a new MRI and said my back was worse now, so I could have spine surgery any time, but could delay if I wanted. My reflexes and strength were good and (thanks to pain meds) I could almost touch the floor. I decided to wait.
But I abruptly got worse in early December, so in January 2023 I asked him to refer me to a spine surgeon (*not* either of the mean ones), who would do the surgery. Here in Maine, there's a big shortage of doctors, including spine surgeons, so having been deemed surgery-worthy meant my consultation appt was three months away! My surgeon-to-be did order a new MRI, but his office messed up the order twice. My original interventional radiologist (from Physiatry) finally ordered it himself--it will happen April 20, at Maine Med.
The pain kept increasing, as did doses of Suboxone and gabapentin. I also took Tylenol and Ibuprofen until the latter made my blood pressure soar. I stopped it and started taking a blood pressure medication. Now I have edema, too.
On March 24, my Physiatrist said I had developed symptoms of early cauda equina (which paralyses patients if surgery doesn't happen soon) and sent me to the Maine Medical Center ER. They kept me 24 hours, in a johnny, being fed Saltines and water, waiting for the MRI that would be followed by emergency surgery. Then two things happened: an aide brought me a big dinner and a surgeon came to apologize and discharge me: No electrophysiologist would interrupt his own schedule to monitor my pacemaker during an MRI unless this was an emergency... and there was no way to *prove* it was an emergency until I had the MRI I couldn't get.
On April 4 I finally met my surgeon. We planned my surgery--just a stenosis decompression, not a bunch of fusions, since I'm 75 years old and longer surgery would mean longer anesthetic, which could harm me. Surgery will either happen immediately after the MRI (if I do turn out to be in danger of paralysis) or a few months later. Surgeons are now working 6-day weeks, but there are so few that it's impossible to keep up with the flood of patients.
He kept stressing the severe pain I must expect for months, while I heal. I kept shrugging. I'm writing this April 9, 2023. Let's see, which would I prefer? 1) My current pain, which sometimes has me shrieking for a few minutes at a time and will keep getting worse until I die? or 2) Intense pain after surgery that will gradually lead to healing and a lot less pain?
I don't quite know how I manage it, but I just keep floating along, doing what I can when I can, enduring both pain and medication-induced grogginess, sleeping a few hours here and there, focusing on every small good thing (we have two new cats now!) and remembering to thank and hug and kiss my dear husband, who's become a splendid chef. The day after the upcoming MRI will be our 50th wedding anniversary!
Spondylolisthesis and central canal stenosis have plagued me since 2004, though back then they were called "sore back" and Restless Legs Syndrome. I'm among the minority of RLS sufferers whose legs jump around because stenosis irritates their nerves in the spine.
My PCP prescribed Percocet, which stopped the jerking! But she retired a few months later and her replacement declined. For years, as the jerking got worse, a series of neurologists prescribed barely-helpful RLS drugs. Physical Therapy didn't help much. I worked in a health agency, assessing patients from behind a desk while my legs jerked around and I found excuses to move around my office. Sleep was rare.
Around 2007 a sleep doc (I also have sleep apnea) prescribed methadone. It helped! In 2013 he promised to start me on Bupropion, which has a longer half-life, saying that increasing doses of gabapentin while I took less and less methadone would ease the transition. He said withdrawal takes 6 months. I looked it up: it always takes 3 days. He lied, telling me I was wrong. I suffered mightily--gabapentin barely helped. With my lower body jerking every six seconds, I couldn't function at work or at home.
Desperate to keep working, I saw a spine surgeon at Scarborough, Maine's Spine Center (2 hours from home). I showed him a case study in which supposed RLS was stopped by spinal stenosis surgery. Assuming I was a faker trying to get disability, he laughed me out of his office.
So I had to quit the job I loved. Realizing his plan had failed, my sleep doc admitted he'd lied--he just wanted to stop prescribing methadone--and abruptly referred me to a different sleep doc and to a neurologist. An MRI revealed the Spondylolisthesis and central canal stenosis.
For years, when stuck sitting down or trying to sleep, only banging my knees together hundreds of times quelled that awful jerking sensation. The neurologist prescribed methadone, which stopped most jerking, but the damage was done: in 2017 and 2018, I had total knee replacements (physical therapy really helped then).
At this point, I could barely turn my head. A new MRI revealed cervical spine arthritis, so I was referred to another spine surgeon in in the Scarborough practice. (I keep going there because it's associated with Maine Medical Center, the biggest hospital in the state, and that's where the best spine surgeons work). He'd read the first man's notes, so he just ridiculed the obesity caused by lack of exercise and ushered me out, un-helped, warning of total body paralysis (but not offering surgery) and saying I'd have a heart attack soon because I was fat.
My PCP ordered lots of tests: my heart was fine.
Despite the TKRs, my lumbar spine pain meant I could no longer walk more than a block. We bought an Upwalker so I could get some exercise (fantastic!). My PCP referred me to a pain clinic ("Physiatry"). Over a couple of years, their interventional radiologist did 3 sets of rhizotomies, which permitted me to walk on my own, and they switched me to Suboxone (Bupropion + naloxone). During that 3-day withdrawal period, my body jerked 60 times a minute.
Standing up to clear the dinner dishes was agony, so I had an epidural spine injection. The jerking was GONE! That lasted a blissful three months, proving my theory that the stenosis caused it. The second injection lasted two months. Full of hope, and rarely in pain thanks to an ever-increasing dose of Suboxone, I set aside the UpWalker, bought a set of trekking poles, walked over a mile a day, worked out at the YMCA, and lost 80 pounds in 80 weeks.
In November of 2022, the burning, blazing, blowtorch pain I feel in the back of my thighs when I get up after lying down a while got even worse, so I was referred to a very kind interventional radiologist in the Scarborough practice. He studied a new MRI and said my back was worse now, so I could have spine surgery any time, but could delay if I wanted. My reflexes and strength were good and (thanks to pain meds) I could almost touch the floor. I decided to wait.
But I abruptly got worse in early December, so in January 2023 I asked him to refer me to a spine surgeon (*not* either of the mean ones), who would do the surgery. Here in Maine, there's a big shortage of doctors, including spine surgeons, so having been deemed surgery-worthy meant my consultation appt was three months away! My surgeon-to-be did order a new MRI, but his office messed up the order twice. My original interventional radiologist (from Physiatry) finally ordered it himself--it will happen April 20, at Maine Med.
The pain kept increasing, as did doses of Suboxone and gabapentin. I also took Tylenol and Ibuprofen until the latter made my blood pressure soar. I stopped it and started taking a blood pressure medication. Now I have edema, too.
On March 24, my Physiatrist said I had developed symptoms of early cauda equina (which paralyses patients if surgery doesn't happen soon) and sent me to the Maine Medical Center ER. They kept me 24 hours, in a johnny, being fed Saltines and water, waiting for the MRI that would be followed by emergency surgery. Then two things happened: an aide brought me a big dinner and a surgeon came to apologize and discharge me: No electrophysiologist would interrupt his own schedule to monitor my pacemaker during an MRI unless this was an emergency... and there was no way to *prove* it was an emergency until I had the MRI I couldn't get.
On April 4 I finally met my surgeon. We planned my surgery--just a stenosis decompression, not a bunch of fusions, since I'm 75 years old and longer surgery would mean longer anesthetic, which could harm me. Surgery will either happen immediately after the MRI (if I do turn out to be in danger of paralysis) or a few months later. Surgeons are now working 6-day weeks, but there are so few that it's impossible to keep up with the flood of patients.
He kept stressing the severe pain I must expect for months, while I heal. I kept shrugging. I'm writing this April 9, 2023. Let's see, which would I prefer? 1) My current pain, which sometimes has me shrieking for a few minutes at a time and will keep getting worse until I die? or 2) Intense pain after surgery that will gradually lead to healing and a lot less pain?
I don't quite know how I manage it, but I just keep floating along, doing what I can when I can, enduring both pain and medication-induced grogginess, sleeping a few hours here and there, focusing on every small good thing (we have two new cats now!) and remembering to thank and hug and kiss my dear husband, who's become a splendid chef. The day after the upcoming MRI will be our 50th wedding anniversary!
