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5 days post injection, way worse, Dr blew me off, feelin real low., WHAT DO I DO NOW/NEXT???

Last Thursday I had my first ever epidural cortocosteroid injection at the L5-S1 level to deal with the ice pick pain at that disc level, and the nerve pain across bum and down legs: legs mostly side and front, some in back, stopping at knee.
There are a myriad of other spinal issues going on, fibromyalgia, 20 year old compression fractures, bulgie discs, etc, but this is my first injection.
It hurt like mad, she gave me a local and then the injection, no sedative or anything, and it felt like a white hot garden hose was being shoved down my right leg.
Immediately the pain was much worse.
In recovery I was on 'automatic dissociative lockdown' it hurt so bad and I could barely tell them my pain level because I'm so used to disconnecting from my body when the pain reaches a certian point.
They kept saying that's normal, but their faces didn't.
When trying to stand, I could not for quite a long time.
The second I was able to limp out I did, cuz I wanted to get the heck out of there.
PAIN the rest of the day.
The next day was much worse and I could not walk more than 2 or 3 steps holding on to things, and could not even crawl more than a few paces.
Saturday evening that eased up a bit, but still horrid pain.
I can't do much now, lay on my bed and writhe, or lay in my recliner and writhe. I'm on tramadol and skelaxin and they take the edge off but take a while to ramp up and end before my next dose so the spaces in between efficacy are torturous.
I have 3 little boys, I'm a SAHM, but I'm just laying here like a cross between a writhing eel and a veal in a pen.
The front of my quad spasm stuff I had before HAS gotten better, but the sciatica symptoms are not severe, compared to before, it's like I didn't even have sciatica before. Burning, pinching, stabing at high levels ALL the time.
There is no position that lessens the pain.
I've had relatively similar pain for the last 20 years, now that it's all different, it's very disconcerting to say the least, positions I used to assume that would relieve the pressure do nothing or increase it now.

For most of my life, I've gone the chiropractic/PT/MT/health and fittness route in the past to deal with the pain., with a fair degree of success. I've been somewhat mistrustful of the medical approach ever since my first x-ray (oops! we xrayed your lungs instead of your spine, but I'll bet it's fine), to the way they'd mock chiropractic which does slow the progression to bad for me, and proscribing meds that mess with my head- which I cannot stand, or make me vomit. But since my last pregnancy (DS #3 is almost 2 now), things got worse- they'd got incrementally worse with each successive pregnancy/birth. So in the last year I finally gave medicine a go.
I do love the meds, waking up isn't such a punishment now, and they take the edge off, which is nice.

I've been herniating discs this past year like it's the 4th of july and my spine's filled with fireworks.

My 12 years GP rec'd a pain specialist orthopedist who took me 5 weeks to actually get in to see.
She looked at my recent MRIs and said I'm not a good candidate for surgery/percutanious disc decompression since my bulges, while they do press on my nerves, aren't very big (2 and 3mm), so she set me up for the injections.

The bigest thing for me is that I let myself, for the first time in 20 years, really imagine what life would be like if I could sit down without the L5-S1 ice pick making me grind my teeth to powder, or play with my boys more, or wear sassy shoes... I imagined what my life would be like with less pain from the waist down, and thought after that we'd tackle the waist up: migrains, and the other nerve issues, etc, maybe we could fix me!

So when I came out in WAY worse shape than I went in... yeah.
I'm trying not to be devistated. Trying to not be exhausted by the whole process, and trying not to feel sorry for myself.
I have limited success in these endeavors.

I called my pain doc monday to let her know things are worse, the receptionist took the message, my doc's assistant called me back to get the same symptoms from me again, and a few more details (though she wasn't that interested in finding out where all it hurt more now and how it was different from before, just that I still hurt I guess). A few hours later she called me back to tell me the doc said I could rest and ice and if I wanted I could schedule a follow up.
Really? Cuz i'd been playing touch football and hanging out in the local hot springs all weekend, obviously.
I said yeah, I wanted a follow up, she xferred me to the apointment secretary who told me the next available apt. was in 2 weeks.

I'm just tired.
My not especially sympathetic mom came by today, a rare and wonderful gesture from her, to pick up my son from school and help around the house (!), she's recently suffered a fall and then got injections herself and was super pushy that I give them a go.
While she was carrying things I asked if she should be doing that with her back, and she said that since her injections she's been fine and though it was starting to wear off (about 9 mos after she got it), she'd just get another and be perfect again.
When she went into the garage I burst into tears.
I'm trying to not feel sorry for myself, and be jelous that the 'miracle' works for other people.
I had read the day before the injection that people with shorter term pain that starts sudden and sharp respond much better to the epidural injections than people with long standing pain.
Aparantly that's quite true.

Anywho, I'm feeling pretty low, I hurt really bad, and it kind of bites how my doc blew me off,and that I can't seem to focus through it all in order to find the doctor/treatment to try next because this is unendurable, and I want out.

My husband plans to call my dr tomorrow (if she's even in, since it's the day before a holiday) and ask some very pointed questions as to why I'm not given anything stronger at least so I can sleep at night or why she didn't fit me in when they were the ones who aparantly irritated another nerve group causing way more pain than they aleviated.

I so appreciate that. It's all I can do to not bite through the arm of my recliner.
Thanks all for letting me vent.

So, please, if you have any experience with all of this stuff, what do I do now? Where do I go? Who do I talk to?
Thank you in advance, I so appreciate your help!
"Where no rain falls, there no grass grows."
-Elizabeth Hollister Frost


  • FrancineSFFFrancineSF Posts: 318
    edited 11/21/2012 - 4:54 AM
    Hi there, NP:

    So sorry to hear that you have had such a horrendous experience with this. I am glad your husband is stepping up and plans to have that conversation with the doctor. When I read that they scheduled you for two weeks, I immediately wondered why you did not tell them that that was not acceptable, that you are in excruciating pain and that you want an appointment immediately.

    YOU (and your husband) need to push for more and more responsiveness. I don't know where you live, but it is not wrong to tell a doctor that you are concerned that you have been blown off and that with such intense pain, you expect more and better responses because even though your quality of life was already compromised by this, it is now even worse.

    It need not be said in a hostile, combative manner, but they need to know that the way they are responding to this is not acceptable. The doctor may come back and say to you that it takes time to work or whatever, but being blown off is just not acceptable in this day and age.

    And, if that persists, it may be time to find another doctor who you can work with much better. When I saw surgeons for my cervical issue, I immediately ruled out one of them because of the cold manner in which they approached everything, including a less than acceptable response to a simple question from his nurse.

    I found a wonderful surgeon whose office is comprised of not only well-qualified staff/nurses, but they responded to my questions. A week before my cervical surgery, I had a list of about 20 more questions I needed answered, so I left a message for his nurse and she told me to come in on Friday and she would go through them with me - and that I could come in anytime on that day because they were not seeing patients that day. We spent about 40 minutes and at the end I told her how appreciative I was of the time she took and she told me how impressed she was with the type of questions I had and that I was incredibly prepared.

    My point is - that there are great medical professionals out there who have not lost sight that this is scary and daunting and that we as patients have a right to understand what is happening and to NOT be blown off.

    I feel your frustration - and pain - and I hope that your husband makes some headway. I also hope that he tells them that you need to get in sooner than later or at least provide you some manner of relief from the pain - which is exhausting - physically, emotionally and spiritually.

    I wish you well!
    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
  • coco's momccoco's mom Posts: 11
    edited 12/14/2012 - 11:35 AM
    Hi Normal Pain. I've read your post and am actually a little shocked at how similar your experience with ESI is with what I've going through. I was wondering how things are for you now? Certainly hope you're feeling better, but I would like to hear how things progressed after your post. Thanks and again hope this msg finds you all better
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