It's been about a month since my facet injection. When I went in, the nurses told me to lay down on my stomach. I just looked at them and told them, "I can't do that." They said it was the only way to have the injection. So I did it, with them watching and acting like I was a big baby because it took me a long time to get in that position. When the doctor came in, he had a real hard time finding the right spot. I have so much hardware in whacky positions, he just couldn't get good access. The whole time he was moving the fluoroscope a little more this way, then back that way a little, then this way again, I was in agony. My head turned to one side to lay on my stomach was just wrenching my upper spine, since the whole rest of my spine is fused. By the time he finished, I was in a lot of pain, but the nurses were so gentle helping me back up, since they saw the fluoroscope and finally "got" that I wasn't being a baby, I am just that limited in how I can move. They had a completely different attitude towards me by the time I was able to get up, helping me with my shoes, being sweet and gentle.

The injection didn't do a thing. But ever since then, my upper spine is causing me so much pain. From right between my shoulder blades up into my neck, it crackles and cracks and pops all the time and hurts all the time. I saw the PM yesterday again. He agreed to no more injections. He gave me Lidoderm patches to try and Celebrex. I'm concerned that laying like that actually did me damage. It's been a whole month, and it's not better. But what could they do about it anyway? I certainly can't let anything else be fused. Injections aren't effective for me. I've upped my pain meds, so now I'm tired everyday. And I finally faced that I've been fighting depression over all this and talked to my family doctor. So now I'm also on Cymbalta.

This is not where I thought I would be at this point. The hardware removal was supposed to be some fine tuning, then healing and I would be better off. Instead, all this new stuff has happened. I'm just so frustrated and discouraged. And I'm tired of people looking at me and saying, "oh, you look so good. Are you all better now?" while I'm standing there in pain just wishing I could go home and lay down on my heating pad.

On top of it all, I got my first denial letter from disability. They said that I have no limitations in walking, standing, or getting around. It's like they didn't even read that long packet I filled out! With two doctors documenting that I'm not able to work, they just threw me into the reject pile without even reading everything.

I know things will look up eventually. I have many things to be thankful for, and I need to focus on them! Maybe by going through all this myself, I'll somehow be able to help someone else one day. In the meantime, I'll keep my eyes on the Lord, who gives me comfort and deep down joy, even when I'm not happy.

Hope everyone else is having a less-painful day today.

Emily

Oh Emily,
I'm so sorry! My heart aches for you. I understand that you look good so people think your ok, I get that all the time. I had injections this past july, they didn't do anything for me either, just caused major foot & leg cramps, they went away after a few months. My PM told me if the injections helped even if for only a few days that aai would be a good candidate for the nerve burning, but they didn'twork so I wouldn't be able to have that done with any success. He said the only thing left for would be the stimulator that shawley got. Thats the only thing left for them to do on me besides play around with my meds some more. I dont' know if that would be the case for you. I have opted to not have the stim at this point in time since I'm only 46 and will be like this for the rest of my life, I don't want to use up my only option now ans then when I get old I have nothing to help me then. I don't know if that the best decision or not but it's the one I chose for now anyway.

Don't be to upset with SSD, they hardly ever approve on the first round. Do you have a lawyer that specializes in SSD, if not get one, don't do anything else without one. You could mess up getting an approval without a lawyer at this point. I got approved but it took 4 yrs!!! and many forms to fill out, if I would have filled them out on my own, ugh! I couldn't understand half of what they were saying on them. Get a lawyer and relax, they get no more than 25% of your first payment and thats it. so you dont' have to worry about any up front cash.

I wish I had something more to offer, your right God is at your side and helping you thru all of this. Keep praying, I will be praying also as I'm sure everyone else on here is. You WILL get thru all of this and be stronger in the end.

God BLess

Carol

Hi Emily,
I am so sorry you are experiencing more pain. I just wanted you to know that you are in my prayers and there are good wishes being sent your way.

Linda

Don"t give up. I know it is hard and frustrating. Do you have a good pain doc? I know there are some very good ones out there. Mine has been wonderful to me. There are some pain docs who are advocates for their patients. As far as your disability, don't give up there either. Almost NOBODY is approved the first and many times the second time. It isn't right but that is the way the game is played. It has been on CBS and other places. I would advise you to get a lawyer now. I received my denial on the day I lost the use of both of my legs for about 20 minutes. The SSA is set up where your lawyer can only get a certain percentage. I have been denied 2 times and I found a good lawyer. He feels mine will be approved in a couple of weeks. Request a hearing, get a good lawyer, and Good Luck.

Don't Quit!

Emily,
I am so sorry you are in pain and about your diability letter. Double whammy!
Know what you mean about looking good. Sometimes I think I shouldn't do my hair or put on makeup so I'll look as bad as I feel!!:eek: and at my age with no makeup I look VERY bad!
Is your pain management Dr. Decker? I have heard good things about him. I really need to find another PM. Dr. M is just not working out for me and many others that I know who have gone to him.
Emily, I will keep you in my prayers and I'm sending a big hug across the river to you ((((((((((gentle hugs))))))))))))) . It doesn't have far to go so you should get it soon! Too bad we can't know one another....we could have had lunch and whined together on this very cold, dreary day.

Deb

Hi Deb,
Thanks. I needed that hug! Wouldn't that be nice, lunch together? Oh well...

I go to Dr. Barsanti. I think he's a good doctor; what happened was not really anything any of us could have anticipated. But his office is very inefficient. I have never waited any shorter than an hour in their office for an appt, even when I was the first one of the day or the first one after lunch. That's so hard when you're sitting there in pain, or in my case, sitting for 10 minutes, then walking back and forth for 10 minutes, then sitting for 10 minutes, then walking back and forth... you get the idea. It's especially infuriating when you can hear the doctors out there talking to the nurses about restaurants, kids, clothes, and you're just waiting and waiting. Once he comes in, he listens and explains everything very well, and he's very professional, knowledgeable and kind, but I hate those appts because of the long waits.

Linda and Randy, thanks for your encouragement. I won't give up! And I greatly appreciate your prayers!

Emily

I'm sorry you had a bad experience getting the injection. I've never had any hardware but before my surgery I could not lay flat at all due to my stenosis, all the severe pain & spasms, claudication etc. When i got my first injection, I was like how in the world am I going to lay on my stomach???!!!!!! It was very difficult to get on the table, but they did put pillows under my stomach so that I wouldnt be flat, thank god. I have no idea if that would have helped you at all, but its' over now anyway so I guess it doesnt really matter now, especially if the shot didnt help at all (then you probably wont be getting more). It just awful that you're in enough pain as is, then you end up coming out of there even worse. I'm sorry that happend : (

And again, as we all know, unless any of these docs or nurses or other staff have suffered these sorts of things, they just have no idea how horrible it is and how limited you are in doing things. I'm glad they realized that your pain was real and ended up being more helpful to you.

I think it's ridiculous how long it seems to take people with legitimate disabilities to get disability. But yet i've known of some people who were walking around, partying, enjoying life, doing all sorts of things - and they were on disability. And I think what the heck for? I know that just b/c someone "looks" fine, doesnt mean they dont have a disability. But if someone can do all those things no problem, then why cant they work? Sometimes it seems that people who are just taking advantage of the system get it no problem, while people who legitimatley need it dont - keep getting denied or like you said, they just say you have no problems doing things. It's really a shame. I dont know anytning about disability service, but it sounds like from others, you progbably should get a lawyer if possible. Whatever you do decide, dont' give up!!! Keep on fighting and try to keep positive & wish you lots of luck.

But yet i've known of some people who were walking around, partying, enjoying life, doing all sorts of things - and they were on disability. And I think what the heck for?

So true! I have a friend who's an in-person back buddy and is about to apply for disability. She knows a girl who is on disability for carpel tunnel and constantly laughs and brags that she bowls, uses the computer, and does anything else she wants while collecting for her "disability." I wish my friend would report her! That's what makes the system difficult for those of us who have legitimate problems!

So sorry about the diability. I was denied too and am appealing with no attorney.

Did you just have the injection today?? If so hopefully in a couple of days you will feel a little better. Personally, my injection with teh hardware last September was a disaster and I still have this ongoing cramping pain that has yet to go away. I pray that this pain is temporary. (((((HUGS)))))

Hi Emily! Sorry the injection didnt help. i was told that they can't really get to the spots they need because of the hardware interference. Don't you just love it when they tell you to lay down and they just look at you, like cant you do that faster, rather than to ask if you need assistance? I would tell them no thank you but I would like to be asked once in awhile.

I saw my spine surgeon today for my followup from my flare up. Since I got minor improvement from the steroids .. he wants me to try 6 weeks of PT and see how I do. I was all over that. I exercise what I can now, and if PT can help me more.. Im up for that. But I honestly know my body pretty well, and I am skeptical Im gonna get much more out of it.. but I will leave myself open for a surprise if it happens. But then if not.. doc may order an new MRI to make sure something new is not going on back there. Then we start injections again. Oh joy.. can't wait! Not. I have yet to get an injection that did me one ounce of good.

Dont get bummed at SSI. I do suggest you get counsel to relieve yourself of the LONG and arduous process it takes to make it all happen. It is really worth letting them get a certain percentage and they get the headaches instead of you. Then eventually poof.. a check will eventually arrive. (hey.. I like that idea.. "POOF" and a check arrives!) lol. Nuts.. I dont see any fairies flying around my house.. any there? hehehe.

I get the burning you are talking about in my upperback right between the blades a tad above the bra line, that has been on and off for many years. My last bout took 8 weeks to even begin to ease up. I throw a lidoderm patch on it. And you should see me trying to get that patch there. I do a dry run with the plastic on to kind get my body aligned beforehand. Then I kind of reach over my head and sling it until it sticks! lol. I get the right spot most of the time! lol. If you haven't tried it.. do. It does take some of edge off that burning.

Have you been on celebrex before? Celecoxibs were about the only anti-inflammer that brought me any margin of relief before surgery. But I did notice one thing about the celebrex.. the stuff made me tired and a little in lala land. I had no idea until I quit taking it (and mind you.. i was on the stuff for over 3 years). So my surgeon I saw today gave me a script for Naprosyn (which I usually get 0 benefit.. I will take and see if it helps).

The Cymbalta may be very helpful to you. Unless you have some serious adverse reactions to the stuff, give it a really full chance to do it's thing and see if it helps you any.

Has any of your docs ever considered a SCS for you?

Dearest Emily,
My heart and prayers go out to you! I had lumbar E.S.I.(s) on January 30th and am going in for my follow-up appointment on Monday. I had bad side effects from the injections...intense burning clear up my spine and into my shoulder blades and nose bleeds. The injections gave me no relief! I, too, am going to apply soon for my SSI. I had to unfortunately "medically withdraw" from my full-time spring semester in college and am going to either go back in the summer or fall as a part-time student (if I am better by then). I agree with the other members about getting a lawyer that specializes in Social Security Disability. I have often heard also that usually everyone gets turned down the first time, regardless of their disability, which is very discouraging. I know you are a very strong woman and that you will quickly pick yourself up and try again! Please continue to keep us all updated and tell us how your new medication(s) are doing!

Hi Tammy,
Nope, no fairies flying around over here, either. But I'll keep my eyes open. You never know. I have found a personal disability advocate through a friend who used her and got SSD on the first try. She doesn't usually help on the first application, but this friend was in very bad shape, traumatic brain injury and a host of other things. The advocate only takes 10-15 cases a year and is very picky about who she'll take. She's willing to take me, but wants me to do the second try on my own, as she feels she wouldn't do anything differently from how I would anyway. She's confident that she can win my case if I get turned down for the reconsideration. I won't give up.

More PT never hurts! Maybe by this time, since you've had a chance to continue to get stronger and move on to another phase of recovery, they'll be able to give you some routines that you weren't quite ready for before. I know you had an excellent therapist who really knew her stuff when it came to rehab. I hope you'll be pleasantly surprised and see a real difference. Do you feel like you're coming out of your flare-up? This one has really dragged on for you!

The Lidoderm patch did seem to help a little, but you're so right about the calisthenics to get the silly thing on there! It should be an Olympic sport! I don't think I'd win the gold, but I'm getting better at it! Anyplace other than that spot would be easy, but who can reach their own upper spine with that sticky pad?! Worth it for a little relief, though! I'll get better at it. :D

This is my first time on Celebrex. Hard to tell what makes me tired. The higher dose of pain meds makes me tired anyway. My family doc, who I really like -- he's excellent -- told me I was being too hard on myself and to go ahead and up the pain meds a little and not be so worried that I'd build up a tolerance. Then the PM told me we need to get that dosage back down. Go figure! I know myself better than they do, though, so I'll take the Celebrex, use the patch, and keep my dosage at what I need, whether it's higher or lower. My family doctor made sense. Between them both, maybe I'll get some better relief. And the Cymbalta, well, it's just weird. I don't know quite what it's doing, but it does seem to already be helping. I don't know how to describe the strange kind of numbness it gives me, and kind of a buzzy head. That went away after a week on the low dose, but I just started the higher dose and it's back, so maybe it will fade away as I get used to it. I'm ready to try anything at this point. I just want to feel normal again!

No one's mentioned the SCS yet. I don't want to go there except as a last resort. If I can get this under control with meds, I'm happy to take them. I'm a bit scalpel shy right now. I've had my fill for the foreseeable future!

Take care,
Emily

Emily, thank you so much for the kind and encouraging words! It sounds like you will soon be getting your disability, and that is great news...You really deserve it! How is your pain today? I hope you are having a pain-free day...Please continue to keep us all updated! Thanks, again.

amazing how one has to fight for SS.I lost twice finally got lawyer who won my case back in 2006.Now with WC Ss on my back I guess to repay the back money they sent,you can't win.

Emily,
It was physically hurting me to read your post. I know how strong you are and if you wrote this it must be not such a good time for you, sweet heart.
I know how devastating this is. As you know I had another fusion and old hardware removed 2 month ago.
More pain and more weakness, more problems with bowel and bladder than before my second surgery. I also thought removing hardware will help me to walk better and leave with less pain... instead my meds were changed to stronger once and more of them...
But i pray to God every day and count my blessings too. And i loved you said that you have to so much to leave for. I know what this means, it means you have people in your life who you love and who love you, you have something which makes your life happy and worth to leave.
This and PK :) will keep us smiling no matter what, right?

I also get upset (even though I understand people mean well) when people tell me how great I look and that I am doing much better... Well, if they consider me "graduating" from walker to the cane, than they are right, I guess :):)

I wish you all the best, take care!:angel:

Please review the Sticky Notes at the top of the forum. Questions regarding Social Security and or Workmans Compensation belong on the Disabilites board.

Thank you

Hi Emily.

You asked if I thought I was coming out of my flare. I would like to say yes, but you know it can change in a mil-a-second. So that last mil-a-second.. yes! hahaha.

I have been back at my own work-out routine this week and I've started something new I've added in and I dont know if that is making a positive difference or not. The doc put me on Naprosyn (hopped up Alieve), twice a day. Im only taking it once daily for now. It makes me very tired and cramps me up big time. So I have to take a Zantac first, then eat, then take it. As to whether it's helping or not.. not sure yet. I will take this for the next few weeks and then decide if it's helping or not. Meanwhile, I feel like a bloated fish! hahaha. I start PT this coming week, but I am considering holding it off one more week to see if this new exercise Im doing is having any positive effects, then share that with the PT folks.

The Celebrex made me a tad loopy and definitely tired to be honest. And the Tylenol-3 does the same thing. When I switched off both of these.. the cloud lifted big time. My boss at the time did not know I was on any medications and even made the crack of, "I dont know if you switched your meds or what, but man you are so sharp now!". I laughed and told him actually I was, and I think he felt bad for saying that. I thought it was a riot! He is still my boss now and we laugh over it now. hahaha.

If the Cymbalta is working.. that's great!! I hope it continues for you. You sure could use some much needed relief.

I dont blame you for not wanting any more surgery no matter how minute! Me too!

Well, im off to bed. Talk to you later. :cool:

Emily...I am so sorry that things are so hard for you right now. It is so disappointing when an "injection".."hardware removal" or whatever just doesn't work..and you are in a worse boat than you were in at the beginning. We look forward to the pain relief that is being offered...and are so down when it doesn't work. I just wanted to let you know I am thinking of you..and hoping that the SSD will come through for you without too much more aggrivation. You have been such an inspiration to so many with your knowledge and kind words...I do hope something can change for you - soon..and you have less pain..

Leslie

Thanks, Tammy and Leslie, for your encouragement. It sure seems like something is going on, but I'm trying not to think about it too much until I can see the doc. I have this weird popping/cracking from just above my fusion (T4) up into my neck, and also down at the very bottom of the fusion. But what really concerns me is that I think I've shifted. The top of the rod where my doctor took out the one hook that was protruding is now starting to just slightly protrude, enough that it hurts to sit in the car for very long, and I can feel that my left ribs are starting to connect with my hip bone again, something that the surgery corrected. I'm wondering if my osteoporosis has caused some microfractures. The popping and cracking started after the facet injection, when I was wrenched lying face down on that table. Not that I'm blaming the PM. I think with my weird back, no one really knows what to predict. None of us could have foreseen this happening. But it's certainly distressing!

Well, I'll get through this, too. I know there are a lot of people way worse off than me! I'm not in a wheelchair, and I still have one or two marbles left! Tammy, we'll see if I still have any once this Cymbalta fully kicks in! But maybe I won't care then! :D I'm glad you're feeling so much better. Have you been able to keep up your courses?

Thanks, everyone! :wave:
Emily

Hey Emily,
It makes me woozy to even read your post about how everything has shifted :eek: and being a nurse there's not much that makes me feel woozy;) I'm so sorry that you are having a hard time. When do you see your doc? Take care dear, you are in my prayers!

Waving across the James :wave::wave:

Deb

Not til the 19th. Thanks for your prayers! I really appreciate it!

Emily, waving back at ya :wave:

Discussions regarding Social Security belong in the Disabilities forum. If you have questions regarding Social Security please post them there.

Thank you