[vanityfaire]

I went in on Friday and had an Epidural for back pain. I have RSD in my Left leg. I have narrowing of the disk space in the L-5/ degeneration. There are 5 pinched nerves, both sides of the L-5 and Sacrum. I was so hoping that the pain would be relieved but I am finding the opposite. I really can only sit after taking meds and finding the sweet spot. I don't move from that once I get there. UGH. I have been icing...which scares me knowing that is not what to do for the RSD. I am afraid the RSD is spreading..but the pain dr. said it is not. That it doesn't spread only when in the beginning stages. I have read here and that does not seem the case as we get injured and don't even know.
I am supposed to go to a surgeon next if these steps don't work. I am afraid of getting an operation knowing our friend will jump right in. I can't take the pain and I have to work. I work with Special Education Preschool children as a certified teacher. I am trying to just get through the school year without too much attention being drawn to myself. I am trying for other positions that will be less stressful on me. I have had one interview and waiting on some others to come.
Please help with some advice on surgery. I am thinking its inevitable. Love you guys and thanks for always being there.
jo

[loretta]

Originally Posted by vanityfaire

I went in on Friday and had an Epidural for back pain. I have RSD in my Left leg. I have narrowing of the disk space in the L-5/ degeneration. There are 5 pinched nerves, both sides of the L-5 and Sacrum. I was so hoping that the pain would be relieved but I am finding the opposite. I really can only sit after taking meds and finding the sweet spot. I don't move from that once I get there. UGH. I have been icing...which scares me knowing that is not what to do for the RSD. I am afraid the RSD is spreading..but the pain dr. said it is not. That it doesn't spread only when in the beginning stages. I have read here and that does not seem the case as we get injured and don't even know.
I am supposed to go to a surgeon next if these steps don't work. I am afraid of getting an operation knowing our friend will jump right in. I can't take the pain and I have to work. I work with Special Education Preschool children as a certified teacher. I am trying to just get through the school year without too much attention being drawn to myself. I am trying for other positions that will be less stressful on me. I have had one interview and waiting on some others to come.
Please help with some advice on surgery. I am thinking its inevitable. Love you guys and thanks for always being there.
jo

Hi Jo, I am sure this is a very scary time for you. You will find wonderful support and compassion here. It seems you are getting information inconsistant with what a lot of us know about RSD. Do you think it would be good for 2nd opinion? That's always seems to be a good idea when there are differences. I've had RSD 15 years and certainly got spread in the past 6 years. Also, why are you using ice? Is it helping? Please get a good RSD Dr. for 2nd opinion.RSDSA is the national organization where you can get information. Surgery is something we really try to avoid if at all possible, and if necessary-take precautions to prevent spread.
What state do you live in. The friends here know many different Drs.
I can no longer work and just applied for SSDI. I wish I would have made a journal of Drs. Dates, meds, etc over the past 15 years. It's a good thing to do. It's theraputic, regardless if you get to that point or not. I now have full body and internal RSD along with several other disorders.
Please know we care, and keep coming back and ask anything you would like to ask. One of your new friends, loretta

[Lisa in Ohio]

Hi Jo, Sorry about the terrible weekend you are having. I would be upset and apprehensive about surgery too if i were in your position, but sometimes it seems like we just have to take what is offered. I live in a very rural area with only two practices that deal with RSD that are within my driving distance. My pain doc also says mine is not spreading even though the fierce pain and burning are moving through my shoulder, neck and head. I also have confirmed heart involvement now, and am waiting on an echo to assess the amount of damage. You may want to start the lengthy disability process now as it can take several years to even have your case cracked open and looked at. I hope you find some relief from your pain soon and this will allow you to make wise and informed decisions regarding your health. Peace to you, Lisa

[daniella]

Hi Iam sorry for the pain and situation you are in. I am big on extra opinions and I know it is not possible for everyone but can you? What does your pain doc feel about the surgery and does the surgeon know about RSD? For me if I was facing this I would get another opinion and if I did have to do the surgery I would have a plan for after of pain control. When I was thinking of doing a treatment I even asked in case I got wose what was the plan after to keep me comfortable. I am sorry I wish I had more answers. I know others hav had surgery and can give you better feedback. Hang in there

[bernclay2]

Hi Vanityfaire.

I am sorry you are having such a painful time, my heart goes out to you. It sounds like your treatment is not working, and that you are considering some big decisions regarding surgery. I would agree with the previous posts that it sounds like now is a good time to get a second opinion. Surgery is always supposed to be the last option, and I would definitely recommend at least one second opinion if not more. In 10+ years, I can think of at least 4 times when I got second opinions when my treatment was not going well, or if I was considering something serious like surgery. Try to find the best CRPS specialist in your area (this forum may be able to help with that if you are having trouble) and make an appointment as soon as possible. Please let me know if I can help you in any way. I hope your pain is lowered soon, God Bless You.

Bernclay-

[bobinjeffmo]

Have you spoken with more than one doctor about your diagnosis or is it only one doctor who's advising for surgery? If we're only dealing with one doctor here, then I'd make sure I went ahead and got the second opinion before proceeding any further. Your insurance will not only love you for it, but will probably require it.

As far as the RSD equation, don't think the worst. Read more about how many people (the percentages) actually proceed further along with RSD, and you'll see that most only have it in phase I for a couple years and then it burns out. You are not dealing with a disease that always gets worse in fact the odds are the opposite so why buy some problems you don't have?

I too have a severe bulging disk that just happens to be at L5 and instead of operating on it, I have been going to a chiropractor who's done amazing things. Is there still pain back there, of course, but it's eased considerably and since I'm against surgery except when there's no other option, I'd make sure you've exhausted every other avenue first including of course extensive therapy.

Do you trust your doctor 100%? The answer must be yes because if it isn't, than you'll be never confident of either yourself or whatever course of treatment or surgery your doctor is advising to proceed with. Since it had to have been a specialist who's advising you need back surgery, I'd go back and talk with your primary physician about your concerns and see what she/he has to say first. And make sure you bring up all of your concerns including the fact that you believe the RSD is getting worse but that the orthopedic doctor doesn't. It's all about communications and the steps you take today that will determine how you're going to be living the rest of your life.

If the RSD is progressing, I can't urge highly enough for you to have the correct course of treatment now while you're still in the earlier stages of RSD so it won't progress any further. I've seen time and time again where a patient lost the window of opportunity during the early days that caused more problems down the road.

I know you'll do the right thing, but please try and not let the pain your suffering with control your good common sense to do the right thing now even though the process might take a bit longer or not give you the immediate pain relief you're needing so terribly bad right this very moment. Best of luck, Bob.

Originally Posted by vanityfaire

I went in on Friday and had an Epidural for back pain. I have RSD in my Left leg. I have narrowing of the disk space in the L-5/ degeneration. There are 5 pinched nerves, both sides of the L-5 and Sacrum. I was so hoping that the pain would be relieved but I am finding the opposite. I really can only sit after taking meds and finding the sweet spot. I don't move from that once I get there. UGH. I have been icing...which scares me knowing that is not what to do for the RSD. I am afraid the RSD is spreading..but the pain dr. said it is not. That it doesn't spread only when in the beginning stages. I have read here and that does not seem the case as we get injured and don't even know.
I am supposed to go to a surgeon next if these steps don't work. I am afraid of getting an operation knowing our friend will jump right in. I can't take the pain and I have to work. I work with Special Education Preschool children as a certified teacher. I am trying to just get through the school year without too much attention being drawn to myself. I am trying for other positions that will be less stressful on me. I have had one interview and waiting on some others to come.
Please help with some advice on surgery. I am thinking its inevitable. Love you guys and thanks for always being there.
jo

[hope4thebest]

Hi Vanityfaire,
My first thought at reading your post was what the others here are recommending as well! Get second and third opinions from both medical/surgical docs AS WELL AS two opinions from very repudable and expertised chiropractors or osteopaths. There may be other avenues for relief. Your insurance may not cover the different types of doctors, but it would be worthwhile to pay, out of pocket, if you can, for additional consultations. I am so sorry your pain is increasing, and expecially having to go to work with pain. Please protect yourself from being rushed into a decision before you explore all possiblilies and educate yourself as much as possible.
I have RSD in my left foot/leg as well with a lot of back/hip pain..my chiro is requesting an MRI to see what's happening..the pain is soooo bad. I hope it's not the RSD travelling north. I also still work and I understand how hard it is to bear the pain while trying to focus.
Let us know how it goes!
hope4thebest

[loretta]

Originally Posted by bobinjeffmo

Have you spoken with more than one doctor about your diagnosis or is it only one doctor who's advising for surgery? If we're only dealing with one doctor here, then I'd make sure I went ahead and got the second opinion before proceeding any further. Your insurance will not only love you for it, but will probably require it.

As far as the RSD equation, don't think the worst. Read more about how many people (the percentages) actually proceed further along with RSD, and you'll see that most only have it in phase I for a couple years and then it burns out. You are not dealing with a disease that always gets worse in fact the odds are the opposite so why buy some problems you don't have?

I too have a severe bulging disk that just happens to be at L5 and instead of operating on it, I have been going to a chiropractor who's done amazing things. Is there still pain back there, of course, but it's eased considerably and since I'm against surgery except when there's no other option, I'd make sure you've exhausted every other avenue first including of course extensive therapy.

Do you trust your doctor 100%? The answer must be yes because if it isn't, than you'll be never confident of either yourself or whatever course of treatment or surgery your doctor is advising to proceed with. Since it had to have been a specialist who's advising you need back surgery, I'd go back and talk with your primary physician about your concerns and see what she/he has to say first. And make sure you bring up all of your concerns including the fact that you believe the RSD is getting worse but that the orthopedic doctor doesn't. It's all about communications and the steps you take today that will determine how you're going to be living the rest of your life.

If the RSD is progressing, I can't urge highly enough for you to have the correct course of treatment now while you're still in the earlier stages of RSD so it won't progress any further. I've seen time and time again where a patient lost the window of opportunity during the early days that caused more problems down the road.

I know you'll do the right thing, but please try and not let the pain your suffering with control your good common sense to do the right thing now even though the process might take a bit longer or not give you the immediate pain relief you're needing so terribly bad right this very moment. Best of luck, Bob.

Hi Bobinjeffmo, Could you share where you got your information that "most in Phase 1 stay there a couple years and then burn out." and the thought," We are NOT dealing with a disease that always gets worse, but in fact the odds are the opposite." I have never read this information in any of the medical journals. If you could kindly share the source of this information, would greatly appreciate it.
Sincerely, loretta

[Dubious]

Originally Posted by loretta

Hi Bobinjeffmo, Could you share where you got your information that "most in Phase 1 stay there a couple years and then burn out." and the thought," We are NOT dealing with a disease that always gets worse, but in fact the odds are the opposite." I have never read this information in any of the medical journals. If you could kindly share the source of this information, would greatly appreciate it.
Sincerely, loretta

If this attachment helps anybody....

[vanityfaire]

thank you to everyone for your heartfelt help. I have been on this board for several years but mostly lurking or giving some support to those in need. I just could not bear the pain this week-end.
I do have a great Pain dr that is very good. I recently have been seeing her new Phsicians Asst. He mentioned talking to a surgeon to get options. Knowing what I know on this forum surgery is a last resort I do agree. I will get an opinion if it goes in that direction. Tonight the pain is very uncomfortable and it is bothersome to even sit which is usually my best position right now. It is hard to sleep and when i do I get sharp pains that run through my hip down my leg if I turn to the wrong side or area.
I went to work today it was a training day so no kids lucky for me. I got painful when my meds wore off. I fear i am going to run out of meds this month. It seems I just can't make it past 3-4 hours without some help. I go back into my pain dr on thursday.
As for the RSD for me its been about 10 years now I believe. This treatment now is making it flare up with the additional back issues.
I question disability and applying but how do people make it through without money or insurance during that time? I am afraid to give things up. I plan to get short term disablity with my work I already have long term. But it won't pay the bills I am afraid How do you make it?