For seven years I have lived with progressively worsening
pain in my back. I owe every bit of it
to my life time of cigarettes and less than optimal eating, but I like to blame
it on the carton of copy paper I swung into a shopping cart. My back exploded;
the end of life as I knew it.
I took out L1 in that escapade, and over the years other
vertebrae have settled and settled. Two inches worth, so far. There is a back
pain protocol and I can recite it verbatim. I've been marched through it all, almost
in lockstep, with a few balks along the way. I am very familiar with every inch
of my spine and if some doctor’s explanation of his proposed treatment didn't
stand up to questioning, it didn't happen.
There have been two surgeries on my spine, both completely
successful. I am very fond of the C2/C3 fusion with a cadaver bone. It saved me
from a surprise broken neck and the complication of paralysis—or worse. The
other surgery freed nerves and eliminated leg pain. But the pain that seizes my
back has not been controlled, worse luck. It truly limits my life; I hate it.
My back pain got me assigned to a competent arthritis doctor
who has prescribed drugs that used to work better than they do now. NSAID’s
and, two years ago, Lyrica. Heavy duty stuff. Expensive to the extreme. The latter
is being used “off-label” I believe it’s called; it stops pain in the brain,
not the back. I appreciate what they do, but not what they do to me. And, the
effectiveness is diminishing. And, the cost is killing me.
One piece of protocol suggested was an “injection,” one of
several nerve blocks available. I could not bear the thought, and declined.
However, I did allow a cortisone injection into each knee, to block the pain of
pseudo arthritis. That was eleven months ago. The pain went away and has not
returned yet. That is an interesting thing about pain. It really is all in the
brain, and once the connection is broken I think it takes time to reconnect. It
can take forever, as far as I’m concerned.
So, I reconsidered the nerve block. There’s a protocol, I’m
on the yellow brick road. But, here is the rant. My arthritis doctor did his
bit with the recommendation and referred me to the pain specialist who would
inject. In setting up the appointment I was asked if I had seen a pain
specialist before and the answer is yes, in the very beginning.
The new specialist will not give me an appointment without
the records of the previous specialist. I explained the previous specialist is
in prison for sexual assault. I saw him twice and his behavior was
unprofessional. Creepy. Aside from the pain drugs leaving me completely
non-functional he gave me little notes as I left. I never went back. Imagine my
surprise several years later finding him on the front page. I never wanted him
near me again, and I don’t want his diagnostic notes, either.
But, no notes, no new appointment. I went to the office this
morning so I could look people in the eye and make my request. I wanted the
papers in my hand, but the charge for that is twenty dollars. They will be
faxed for free. I enjoyed saying the doctor’s name to the receptionist, hearing
the reception area go quiet. Small revenge for twenty dollars I will not spend.
The new scheduler is following her protocol—no notes, no
appointment. I had to wait two months for the appointment with my
rheumatologist to get the referral to the pain doctor. He applauded my decision
to pursue this; I was so pumped up. And now another person with protocol power
has to have the notes of a doctor I consider a complete fraud in order to proceed.
I would reach through the phone and smack her, but she is not returning my
phone calls about setting the appointment date prior to the new doctor
reviewing the old notes. The initial appointment, before her discovery of the other doctor was several weeks out. "I cancelled it," her only reply to my request for a provisional date.
So, that is my
rant, and I do feel entitled to it.
Although I have not smoked for six and a half years, the
protocol gods were not appeased.
You are talking my language
ReplyDeleteI was a spinal injury nurse for 19 years
A rant you are well entitled to! I hope a competent doctor can alleviate that pain.
ReplyDeleteI had a C6 fusion 25 years ago...that neck pain is not fun.
Thank you for putting my absolutely petty obsessions entirely into perspective, and thereby making me feel so much better, Joanne. I mean that. X
ReplyDeletePain is not petty,Tom. It is consuming. If it can be kicked in the butt, I say over the goal post. Do look into it. I mean that.
DeleteI can't imagine how you manage that enormous loom with your back issues!
ReplyDeleteI vote that you send this post verbatim to this new anal scheduler - and I'm referring to her attitude, not her specialty.
Twenty minutes at a time, Marty. But with my back fixed, watch out!
DeleteI went with my husband to his pain doctor today. Husband had back surgery a couple of months before he turned 80. Story too long & complicated to tell. Six weeks later another surgery followed by unmitigated pain. Finally I had had it with the neurosurgeon who kept insisting the pain would go away in time. Don't think the old man would live long enough to see that happen. Our primary care doc had his staff call & get an appt. with the pain doc. Injections in his back gave him the most relief he'd had in months. Now the pain doc requires that he go every two months, just to see how he's doing. So far, he is getting injections every other trip. I think it stinks that rules matter more than people do. Your rant is understandable. Can you put it online somewhere that would make a difference? Like the new pain doc's web site? There are sites that allow people to evaluate their experiences.
DeleteToo bad you didn't know ahead so you could have just lied about a previous consult. What a crock!
ReplyDeleteI know. As the conversation progressed I tried to formulate a convincing lie of making a mistake. However, she knew the doctor's name. The jig was up.
DeleteNothing worse than back pain it strikes without warning or mine does.
ReplyDeleteBut all medical red tape is very hard to understand.
Merle..................
Hari Om
ReplyDeleteThis arthritic back is just going to have to make do... I don't 'do' doctors full stop... for all the sorts of reasons you are facing now. I do hope you get that appt soonest - there's weaving to be done!!! YAM xx
The red tape & paper of current medical stuff astounds me. Here's to hope in the future.
ReplyDeleteI have RA, so I understand pain. And I have dealt with back and sciatica pain for years. The ONLY thing that brought me any relief were the yearly spinal injections that I get. I was AMAZED at how effective they are. And yes, doesn't it just KILL you to think of your brain dealing out that pain? I have tried all sorts of hypnotizing, etc. Nothing has worked. But the injections. GET THEM!!!!
ReplyDeleteI do wish these people obsessed by protocols could experience the pain for themselves....just for a little while, until they took on board thagt pain relief is more important than paperwork which covers their backside/
ReplyDeleteIs there a different pain specialist you could be referred to? She doesn't sound all that empathetic, I'm thinking with dismay. I know a number of people with chronic pain and they would hate that treatment by a doctor who is supposed to be helping them.
ReplyDeleteI hope this gets worked out for you soon Joanne, I don't like the thought of you suffering... not one little bit.
ReplyDeleteSorry to hear you are suffering.....hope everything works out for you.
ReplyDeleteSo sorry about your pain. So if the records got destroyed like in a fire or something else like that, you wouldn't be able to make an appointment? Doesn't seem right. While I understand the reasons behind wanting to see old records, I certainly think you are competent enough to give a thorough history of your condition. Ridiculous the hoops you have to jump through to get a little relief!
ReplyDeletebetty
Good luck. I was taking Lyrica for my neuropathic pain and did get some relief. Then it faded. And disappeared. My bank balance improved immediately - but that was the only thing that did. We haven't found a substitute yet, and since my pain is a moveable feast - back/arms/legs, a nerve block isn't an option.
ReplyDeleteI will cross everything for you. Pain is a soul sucker. And tiring. And turns me at least into the psycho bitch from hell at intervals.
You certainly deserve to rant about the medical doc's. When they are bad they are very, very bad and when they are good they are very, very good. The stories I could tell as I am sure so many of your readers could tell. -- barbara P.S. Has your doc's ever heard of fax machines?
ReplyDeleteVery sorry to hear of your back pain. Pain, where ever it is makes us want to rant and smack someone. I hope you do get some kind of relief for it. Even a little back and neck pain is too much. xx
ReplyDeleteI've no idea how the US medical system works, but can you get a referral to a different specialist and get it stated *in the referral* that your previous notes aren't available? There must be a more flexible specialist who is interested in people in pain, not rules, and has their administrators chosen for the same qualities. Here's hoping.
ReplyDeleteIt would have been better, in hindsight, to say no when asked had you seen a pain specialist before.
ReplyDeleteI'm so sorry to hear you have this much pain and hope something is done very soon to relieve it.
My own back pain is mostly muscular with a little arthritis thrown in at each end of the spine, easily managed with rest and hot water bottles. As long as I stay away from work.
I don't know how you've kept working all this time with pain such as you have, you're a much stronger woman than I am for sure. And raising the grand children, and weaving! I take my hat off to you Joanne. You're a five star woman*****
Oh dear Joanne - I have a friend with very similar problems - he is in agony and because he smokes they will not do anything until he stops - he is trying hard.
ReplyDeleteDear Joanne,
ReplyDeletethis is very hard for you to endure that much pain! Your country's health care seems to be a very strange system, and to have to pay for all these medications from your own purse can be very hard indeed. You are right about pain-memory: it engraves itself into the brain - and one has to un-learn, I wish that your new doctor is more able than the last one!! And that you get soon as painfree as possible.
That is so sad. I wish I could make you feel better, Joanne.
ReplyDeleteMy husband had back surgery in 1978 on his herniated disc and felt much better.
But he does have arthritis in his knees and hips and it is just a matter of time before he has surgery on those, too.
I didn't know of your pain. Hope things get better.
ReplyDeleteI'm sorry you're in so much pain. My mom also had a spinal fusion, so I have some idea of what you've been going through. How awful about your abusive pain specialist. I hope the new doctor is able to find the right combination that works well for you. Feel better, Joanne.
ReplyDeleteJulie
an object lesson in how fucked up our health care system is. I hope you get it resolved soon. back pain is the worst.
ReplyDeletexox
ReplyDelete