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Could really use some good thoughts

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Adlham posted 12/4/2019 20:43 PM

I found out yesterday that yet another vertebra has decided that it didn't like baking out with its neighbors and is a good 11mm out of alignment and the disc is pretty much shot.

I think I'm looking at yet another fusion. I'm already fused from L3 to S1. Now L2 is moving in and out and causing problems that I can't ignore, no matter how much I want to.

I'm really down about this. I've already had 3 back surgeries over the span of 7 years. The last one was 3 years ago and though I knew this was a potential outcome, I really had hoped to have more than 3 years.

Officially, it's called anterolithesis. Unofficially, I'd like to just lay down and die. I do not want to go through this again. It's so painful.

I'm having a pity party today. Tomorrow will be better. But right now, I'm kind of just devastated.

northeasternarea posted 12/4/2019 23:07 PM

Good thoughts and prayers for you.

burninghouse posted 12/4/2019 23:08 PM

Sending a big ol bunch of positive thoughts your way Adlham. You're in my prayers.

Bleu posted 12/4/2019 23:28 PM

{{{HUGS}}} and good thoughts coming your way!

tushnurse posted 12/5/2019 07:05 AM

((((Adlham))))

I would recommend you see another neurosurgeon. There are newer microsurgery techniques that many patients don't have a significant amount of pain after.

Unfortunately as you know once surgery starts it seems to progress up the spine. I'm sorry you are going through this, I know it's miserable.

((((And Healing))))

BraveSirRobin posted 12/5/2019 07:10 AM

I'm so sorry, Adlham. One of my best friends has had several of these, including a rather scary one at the base of her neck in her mid-20s. It sucks hard.

((Adlham))

lieshurt posted 12/5/2019 07:45 AM

Sending good thoughts and big hugs your way.

zebra25 posted 12/5/2019 08:48 AM

Sending good thoughts and healing mojo.

ZenMumWalking posted 12/5/2019 09:13 AM

You got it ((((Adlham))))

Sending out loads of love and mojo, and positive, healing thoughts to you.

((((Adlham))))

Adlham posted 12/5/2019 10:38 AM

I appreciate all of you so much!

I am on top of it, at least. I found the lump on my spine about 2 weeks ago and saw my PCP the next week. Last time I found a lump, I had thought it was Some hardware failure but it turned out to be L3 not wanting to hang out with its neighbors.

I had hoped this time it was just built up scar tissue or something equally unimportant.

As a nurse, I'm a notoriously bad patient. But I followed doctor's orders to the letter last time, so for it to go to hell so soon is such a bummer.

And my favorite surgeon no longer works with my insurance and that makes it even worse. I can't tell you all how much I love him and I refer a lot of people to him because he is so kind and so involved in every step. He doesn't foist you off onto assistants after surgery like others do. I think I'm more upset about that than I am about having another surgery, if I'm honest.

I'm not even 50 yet. Dammit, I'm too young to be falling apart like this. The least they could do is make me bionic.

Thank you for the great suggestion, TushNurse. As I have to find another surgeon anyways, I will research and see what I can come up with. The worst part is that I live in a remote rural area so I will have to travel and I hate that, too. I don't travel well.

I still want to break something but my attitude is better. My husband is super supportive and that helps a lot. In the middle of my tirade, he just looked at me and said, "we will get through this and it will be ok."

Kind of took the wind out of my sails, but I'm blessed to have him.

tushnurse posted 12/5/2019 11:11 AM

I'm right there with you Adlham ... Us nurses we abuse our bodies so much, that it's no wonder the spine is F'd up.
I have L3-4-5 herniations, with some narrowing, but I am delaying doing anything surgical as long as possible. I do get injections every few months, and that and daily stretching and nightly use of a muscle relaxer, and bengay seems to be doing me well right now.
But do try to go to someone that is "known" for their neurosurgery, or spine surgeries. There are too many Orthopods out there doing spine surgery that didn't have a fellowship in it, and it makes me scared.

I hope you find some relief, if it were up to me us Nurse who provide care in the inpt setting for 10 or more years should have free healthcare for life, because half of what's wrong with us comes from the work we do.

Adlham posted 12/5/2019 12:43 PM

Definitely no orthopods for me! That was back surgeon number 2 and I had massive hardware failure.

While I did get some perverse pleasure out of telling people I had some screws loose, it has made me very leery of ever letting another ortho work on my back.

I tell people, too, that if they can avoid surgery, do it as long as possible. Unfortunately, I didn't have a choice. I have congenital defects in my spine, so that just makes it all fall apart faster.

Luckily, Oregon has quite a few top notch neurosurgeons. And I like going to Portland a lot and have lots of friends there, so at least there are some small positives.

I'm trying to look on the bright side. Knowing that the next level up will start to fail, I just wish they'd fuse the whole damn thing at this point so I don't have to go through this again! Not realistic but I can dream!

I did tell my primary that I would do anything to avoid another surgery. For her to tell me she's referring me on was a big blow. She knows that this isn't what I want but it's very clear that I don't have much of a choice. I'm still going to ask her if PT would help at all, but I can tell when it goes in and out of place so I don't hold out much hope.

ZenMumWalking posted 12/6/2019 04:57 AM

While I did get some perverse pleasure out of telling people I had some screws loose

tushnurse posted 12/6/2019 06:48 AM

Hang in there Adlham!!!

I agree with the PT referral to see if you can get some interim relief, and maybe be able to delay a while.

k8la posted 12/6/2019 11:46 AM

I dodged the surgical solution bullet at age 32. I've had disc compression problems since I was a teen - farm labor is not good for a growing body! My oldest brother is in constant pain and his started in his teens too. I have no cushion between the vertebrae in the lumbar area, especially L4-L5. So if the bones shift and hook that nerve I'm not walking for a bit.

I've been very blessed. My husband went through massage therapy school, and focused on rehabilitative work instead of the fluff and buff you get at a salon/spa. He learned a technique that did miracles for me, to the point where I might get some aches in that area once in a while, but I'm not immobilized or in pain.

My doc told me a few years ago to knock off the ibuprofen and NSAIDS because of deteriorating joint tissue - these types of drugs interfere with repairing. Plus I have autoimmune problems and ibuprofen is a major culprit.

I have been saving up for stem cell therapy in the event that my back starts giving me problems again. Insurance doesn't cover it but I like the research I've found on it so far. Your situation might not allow for that type of therapy, but I'd at least be asking some questions before I submitted to another surgery in your place.

Adlham posted 12/6/2019 23:28 PM

Well, apparently she doesn't think OF is appropriate right now, as I have "next level failure."

Her words, not mine.

I disagree, but I see a neurologist next month. Given how slow the wheels of insurance turn, as well as the winter and everything elze, I will see what he has to say. We set that up before the recent x-ray and I'm certainly not going to cancel. He's got a 3 month waiting list. Plus, he's local and given my back history, I'd end up seeing him sooner or later. It's really inconvenient to travel out of town for medical stuff. Might as well establish care with him now.

I'm just super bitter that it only took 3 years to fail. I really thought I would have more time. I HATE back surgery. I hate that I can't see what's going on because I'm a nurse with wound care certification and a control freak and have to rely on other people to help me out. I made my husband photo the incision several times to make sure it wasn't getting infected.

Yup. I have control issues.

Anyways, it will all be ok. Just one more thing to roll with, I guess.

BearlyBreathing posted 12/7/2019 12:37 PM

Sending healing and light. (((Adlham)))glad you are doing your research and taking care of yourself, and sorry you find yourself in pain again.

Shehawk posted 12/7/2019 21:19 PM

sending prayer and (((virtual hugs))

Adlham posted 12/12/2019 22:32 PM

Woo hoo! Let's hear it for prednisone, neurontin, and flexeril!

I'm somewhere between the anger stage and the bargaining stage, I think.

But at least I can get my Holiday baking done!

Also, I talked to my old PT today and so after the MRI, I'm going to talk to my PCP about "prehab."

And there IS a bright side! Because this involves L2, I'm almost to the thoracic spine and that doesn't deteriorate like messing about with the lumbar spine. So maybe, just maybe, this will be the last one.

God, I am trying not to be bitter. It's so hard. Especially because I know what's going to happen and how freaking painful bone grafts are and what to expect and when to expect it. And how much the first 3 months are super sucktacular.

I'm just dreading it all.

But for now, thank God for pharmaceuticals. I worked so hard to get off all of them and have been off for a good 2.5 years, so they're really nice and effective!

Dorothy123 posted 12/13/2019 12:17 PM

Good thoughts and prayers coming.

May hugs coming at you.

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