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Old 08-20-2012, 07:20 AM #11
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Originally Posted by Dr. Smith View Post
You slyboots!

Doc
I'm not particularly proud of what I did but it needed to be dealt with immediately, not wait for two weeks. I called my local pain doc before heading up there, told him what was happening and that I was concerned that I was getting the run around.

He was quiet for moment and finally said, "If you don't get any satisfaction at the office, go to the ER where you are scheduled for surgery. You know what to do to get admitted. Do it." Actually, I was just following doctor's orders.
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Vrae (08-21-2012)

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Old 08-20-2012, 09:19 PM #12
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Hello everyone, I typically hang out in the RSD/CRPS group, but I am having some MAJOR back issues today and thought I would reach out here.

So here’s what’s going on I have had a discectomy L5/S1 back in 2004 when it ruptured. I awoke from this surgery with a whole new problem called RSD/CRPS II. A couple of months ago I had an MRI and I have L3 & L4 bulging. I have had the flu and have been coughing for at least a week or so. I know this isn’t helping anything. But this morning I woke up and my back is in excruciating pain, I have been debating or waring with myself to go to the ER. I can’t take a deep breath and it not be horribly painful. And if I take too big of a step while trying to walk… same thing, very, very painful.

I’m trying to figure out what the heck has happened. I have amped up on pain meds and it takes the edge off but that is all it does. The hosp that I would have to go to stinks in that the wait will be very, very long. I’m scared to even try and get into the car for fear I won’t be able to get back out once at the ER. What to do, what to do. AND I am worried something major has happened. All while I was asleep… how strange to have woken up this way this morning. Any advice… suggestions? Thanks in advance!
Hi, I am sorry to hear of your problem and pain. Anytime you have new pain it can mean a new problem. Your coughing fit could definitely be just enough to have caused a further problem with your back and it sounds painful and perhaps serious. You can visit the ER or your orthopedist, who should follow through with testing like an MRI. If he doesn't, then insist. You need to know what is wrong so you can choose the right plan of action right away or as soon as is comfortable for you and possible. If you don't get adequate info or care with one doctor go to another until you are satisfied. There is always a reason for pain. Degeneration can cause problems, although some people with perhaps low vit d over time and various other problems can actually break bones doing virtually nothing.

The point is, get the info you need when the time is best for you. I would bring with you a trusted individual who might be able to speak for you or remember for you when you are in too much pain. Backup is sometimes important in medical situations and may press a doctor to spend adequate time with you since there is someone else watching.

Don't forget to get a copy OF EVERYTHING that you sign and all reports. Before leaving your appointment you should fill out a medical release and request that the doctor notes be sent to you. This way you can keep track of whether your concerns were heard, mistaken or ignored, and can correct and address this. If they think you are just a drug addict you went will get the idea from the notes, and know you need to seek further. Sometimes these notes are the only way you will ever know if to your care was adequate.

In addition, research all terms you don't understand, your diagnosis,and treatment options including medications and side effects. In this day and age there is much to loose with quick appointments. I have been misdiagnose for 7 years with a mass effect on my sciatic and torn piriformis muscle origionally misdiagnosed as a back strain. I didn't have anyone with me and the doctor refused to spend more than a few minutes with me. I have also multiple other serious surgical injuries that he missed.

Good luck.
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Old 08-21-2012, 05:48 PM #13
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Hi Vrae,

I do recognize you from the RSD list. First, any hospital that accepts state or federal money cannot turn you away. ER is always an option, at least for emergent issues. Depending on the state, if you have an ortho/PCP that can refer you into the neuro dept. of such a facility, your wait time might drop to a week or two (at least it is that way around here). Also, if you are clinically/neurologically a mess and unstable, ER can call for a neuro consult while you are there.

The CRPS issue is messy. And I would stay away from any doc who does not feel comfortable with CRPS as they could make you worse. Exhaust all state and federal aid programs that are available until hubby finds a job/insurance. Lumbar sympathetic blocks, if not already tried, may be instructive. If your recent MRI is blaringly positive for cord or root compression, don't bark up that tree!

Lastly, while even great and perfect surgeries can result in CRPS, I would get a full copy of your surgical records, hand over to an attorney versed in medmal and explore whether or not there was an error of ommision or commission that led to your demise. That part didn't work out for me (although all docs I worked with said the surgeon screwed up big time), but it might for you.
Thank you Dubious. I may give the ortho route a try. Disability is also something I will be exploring but I already know that work credits may be an issue (self-employed for many years). And yes, I did try the E&O with an atty but I was two months too late with current tort laws. Several atty’s said I had a case, but the time had passed to file a case. The tort law reads (for colo.) that I should have known before two years. I think wow… okay, so I was supposed to know hu? When I went in for the surgery they told me a year min to heal. I was diagnosed within 6 months or so, but I still had no idea what the RSD CRPSII Dx really meant, and I mean jeeeeeze show me any group of practicing physicians and I’ll show you how 98% of them have never even heard of, or know what RSD is, but yes… I should have known… right! I stayed in a state of denial for a long time just thinking “I’m going to get better, more time is all that is needed”.

And you bet, if I can’t get a handle on the back issues or the CRPS issues, I will go to the ER. It’s just a Gawd aweful process. The wait time is terrible and the having to prove everything CRPS (except the MRI the now have on record). I am going to be up against a wall very soon as I can only ration meds for so long.

The good news is the back has let up a bit. The muscle relaxants and pain meds, and babying it really proved helpful, thank God. It was bizarre, in that I just woke up that way (when I wrote my original post). Not sure what in the heck I did during my SLEEP for goodness sake.

Anywho, thank you both SO much!! I was losing my mind in pain.
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Old 08-21-2012, 05:58 PM #14
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If you must go to the ER (and it is appropriate at times) take all of your surgical and radiology records....discs and reports. Keep your focus on your need for some answers, an immediate referral and your greatly diminished level of function. The ER doc is far more likely to take you seriously and throw in something to give you temporary relief.

I DO understand the problems the ERs have with drug seekers. On the other hand, it seems like you must have a gunshot wound to the chest to get something for pain. Best wishes.
Thanks for this. I have shown up with a stack of med records and they NEVER look at them. Not one doc has even peeked at them. I mean I could have a ream of paper and they wouldn’t know the difference. I have had a couple of ER docs that were good and compassionate, but it’s rare. And yes, if push comes to shove I will go back to the ER, but wanted try anything I could just to stay away from the horrible experiences I’ve had there. They did the MRI, said you need surgery, and sent me on my way last time. If not life threatening… I guess we’ll see ya next time. And there will continue to be next times until I get some kind of help with this back of mine and the CRPSII that I deal with.
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Old 08-21-2012, 06:14 PM #15
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The time when you have to worry about paralyzation is when you lose control of your bladder and bowels. Now THAT is a REAL EMERGENCY!!! If that EVER happens, do NOT let anyone in the emergency room intimidate you. YOU INTIMIDATE THEM!!! Make THEM get busy on YOU. Cause that is a real emergency situation. If that ever happens, usually it's an issue of immediate surgery or else it could mean permanent damage.

I've had sciatica in the right leg for 26 YEARS -- yes you read that right. Now it is spreading to the left leg. It's been miserable because no doctor could find any meidcation that could help the horrible pain. Now, my "kind of new" doctor has finally found a combiination of meds that are working to ease the pain --- of course it hasn't taken away all the pain, but it has eased it somewhat. Instead of a 10 on the pain scale like it was, it's now about a 6. So I can live with that, although I'd rather not. LOL

Seems like someone could refer you to physical therapy. THAT is where you're gonna get your best relief -- even if you've tried if before, try it again and stick with it cause that really IS where you're gonna find relief if you stay with it. Especially pool therapy -- that is the best for your ailment. I wish you the very best. God bless and will you PLEASE keep me posted? Let me know how you do, will you? I'm really interested. Take care. Hugs, Lee
Okay now I’m concerned. I have lost control of both. Only once with bowel (recently) and many, many times with bladder. I told my husband, wow… okay this is sexy! LOL and he said ***** happens.

I agree that Phys. Therapy would be awesome, but again, no ins., no referral, and I can’t afford it out of pocket. I did get into a pool a few times / days in a row and my RSD / CRPS II started to get angry and let me know about it in degrees of pain. I think, if I had a regular PM doc and could get the meds I need to do anything therapeutic, then maybe I could build some strength and drop a few pounds. Lord knows I could stand to drop a few pounds. I take a Rx called Gabapentin and it helps a lot with the CRPS but the downside is weight gain. Then there’s the approach of menopause (joy!). None of these things are helping. To add insult to injury I had, had a baby just before getting CRPS, so it’s like an uphill battle for sure… ug!

Again, I will definitely go to the ER if things get too out of hand, I just couldn’t bring myself to go unless NOTHING helped. Thank goodness that it had calmed down a bit and I have not had any incontinence in at least a week or so. When I was coughing, oh good grief, I was wearing a pad just to keep from messing up my clothes from peeing every time I coughed. The bowel was once and it was about 4 weeks ago.

I know I need help, and my husband is trying hard to get me the ins I really need. Just the hope of seeing a doc soon is what keeps me going. He’s got a couple of lines on a new job, so we’ll see. Thanks again! I really do appreciate it!!
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Old 08-21-2012, 06:29 PM #16
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Originally Posted by seahorse02 View Post
Foot drop can be permanent as well. Take a sheet or blanket with you to any medical office if you have to wait, pick a spot where you won't get stepped on and and LAY DOWN if you need to. Forget what anybody thinks. Do what you need to in order to get as comfortable as possible.

If you have to go to the ER to get treated, tell them that your condition has reached the level where you cannot function, and emphasize that you cannot leave the hospital until your problem is properly treated. Dr. told me that. It is a way of forcing the hospital's hand. They are also required under state or federal - I forget which or if it's both - but hospitals are REQUIRED to treat a certain number of indigent patients per year....it's just that they have the option of picking and choosing which ones on the wait list they help. It helps if you have a highly respected doctor/neurosurgeon on staff who is pulling for you at the hospital ER you visit. Just my 2 cents.......best to you!!! AND please don't give up!
Thanks for this and I will keep pushing. Just seems like some days I have more fight in me than others. yeah, the Neuro dept said if my doc was willing to have a conf call w/ the Neuro Dept. and put more ergency on it then they would bump me up the list, but that's when he called me (had his RN call me) to say "if your legs give you any problems, then go to the ER". In other words, don't come here. He's a state aid doc and has only seen me once. He said at that visit that I was out of his scope of practice and he will only help with Rx for Gabapentin & referral. I had already had the MRI (in hand) and had all the Dx for the CRPS (in hand) and he has just turned his head at my situation.

The ER is where they told me you need a PC and to get the PC to refer me to the Neuro dept. Got all that, only to be put on a year wait list and no help from the PC to get me pushed up the list.... awesome! It has been SO much fun!
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Old 08-21-2012, 06:38 PM #17
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Originally Posted by mar777y View Post
Hi, I am sorry to hear of your problem and pain. Anytime you have new pain it can mean a new problem. Your coughing fit could definitely be just enough to have caused a further problem with your back and it sounds painful and perhaps serious. You can visit the ER or your orthopedist, who should follow through with testing like an MRI. If he doesn't, then insist. You need to know what is wrong so you can choose the right plan of action right away or as soon as is comfortable for you and possible. If you don't get adequate info or care with one doctor go to another until you are satisfied. There is always a reason for pain. Degeneration can cause problems, although some people with perhaps low vit d over time and various other problems can actually break bones doing virtually nothing.

The point is, get the info you need when the time is best for you. I would bring with you a trusted individual who might be able to speak for you or remember for you when you are in too much pain. Backup is sometimes important in medical situations and may press a doctor to spend adequate time with you since there is someone else watching.

Don't forget to get a copy OF EVERYTHING that you sign and all reports. Before leaving your appointment you should fill out a medical release and request that the doctor notes be sent to you. This way you can keep track of whether your concerns were heard, mistaken or ignored, and can correct and address this. If they think you are just a drug addict you went will get the idea from the notes, and know you need to seek further. Sometimes these notes are the only way you will ever know if to your care was adequate.

In addition, research all terms you don't understand, your diagnosis,and treatment options including medications and side effects. In this day and age there is much to loose with quick appointments. I have been misdiagnose for 7 years with a mass effect on my sciatic and torn piriformis muscle origionally misdiagnosed as a back strain. I didn't have anyone with me and the doctor refused to spend more than a few minutes with me. I have also multiple other serious surgical injuries that he missed.

Good luck.
I agree that an advocate with you is always a good idea. My husband goes with me, but he remains silent most of the time. He gets so frustrated that I think he’s afraid to open his mouth and say much of anything for fear he won't stop yelling at them. He’s never spent much time in hospitals before me and doesn’t really understand the environment.

And you’re right about records. It is on my list to get the latest records and notes (i have the older records & notes). I know I need to keep pushing for results/answers and I am going to. My husband is oh so close on a job offer. If that happens then my situation will be completely different. Funny how things work like that. When I had ins I could get care, but now with state aid no so much.
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Old 08-22-2012, 11:12 PM #18
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Sometimes a girl just has to do what a girl has to do.
I know it's not funny, but damn.. LMAO. oh <sigh> I guess whatever works, and maybe I will try that if needed. Thanks so much for sharing! I hope all went well with the surgery and that perhaps it has helped.
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