hi all, I've been off of this site for a while. Needed to get away for a bit. I've been having excruciating pain in my legs which I had mentioned. I went to a neurologist this week and she suspects not RSD as I had thought I might have but Lumbar radiculopathy. I'm scheduled for an EMG and then possibly surgery. Ive had six lumbar surgeries. There is only one disk left out of them all so I suspect that is the one they will go after. I know that my neck is in desperate shape. And I'm scared to have neck surgery. My mom had a terrible experience with hers. Part of me wants to say, "Forget the surgeries and let come what may." I know the surgeries are very high risk for me. If we lived in a house that was wheelchair accessible , I would not hesitate to take my chances.
The neuro also said I have peripheral neuropathy, most likely caused also by lumbar and cervical spine.
I'm just tired.
I went out two of the last four days...nothing big...just to a store and out for dinner. I was in such incredible pain and fatigue I went straight to bed when I got home (5:30) but the problem was i was in so much pain I didn't sleep. This morning i did sleep some from 5-9:00 off and on.
I'm sorry for going on and on. I don't want to complain. I just don't know what to do should I need surgery as the neuro indicated I would. And to make matters worse my left shoulder which I know needs repaced but which had been behaving itself, well, it just rejoined the choir. So what surgery comes first out of the three?
Dear Quadosh, I’m sorry for your pain & fear. Which is worse for us, the known or unknown? Nuropain with Sjogren’s not only hurts but often limits our mobility considerable. I wish I could hug in persona. And I know the days are very very long & lonely, & the nights longer still, & for me often scary because of the unknown. Where is Sjogren’s taking us? Hugs
Dear Qudosh: I reread my “encouraging” response. I ment to lift you up. please consider looking into alternative pain relief that also addresses the Nero pain. This is my quality of life saver! Hugs
Dear Q
My heart goes out to you. Living in constant pain goes beyond the physical but drains us emotionally as well. You have so much on your plate and it looks like a hard decision trying to figure out the right approach.
I can only offer my support and not suggestions because I have not yet gotten to that point with my back. I hope you are able to make the right decision and find the physical support you need. I am a bit of a mess lately but if I were physically closer I would offer to help.
Keep us updated.
I'm sorry that you're going through such a rough patch. You've probably already gone this route, but have you tried any physical therapy for the back and neck? I know that your shoulder is quite ready to be replaced, so therapy would likely not be helpful. Are there alternatives to spinal surgery at this point? Would pain control be sufficient, such as an implanted TENS? Sorry, just throwing ideas around.
Do you need to up your disease control as well? I don't remember what medications you are taking for all of this.
You'll make the right decisions for yourself, I'm sure. Whatever choices you wind up making will be the right choice for you.
Such a bummer. You will make whatever decision is right for you. I can't imagine the pain you feel. For now I hope that you will be able to sleep and get some rest. Sleep always makes us think straighter and to be able to make the most informed decision.
So sorry for all you are going through. You are not alone, all of us SS suffers feel your pain and anxiety from not knowing what to do or where to turn. Will pray for you for comfort, direction, and peace.
hi Stoney ...thanks for your response. I just wrote a long note answering your questions and then it disappeared into cyber space. I'm too tired now to repeat. Maybe tomorrow I will write it over again. Stoney said:
I'm sorry that you're going through such a rough patch. You've probably already gone this route, but have you tried any physical therapy for the back and neck? I know that your shoulder is quite ready to be replaced, so therapy would likely not be helpful. Are there alternatives to spinal surgery at this point? Would pain control be sufficient, such as an implanted TENS? Sorry, just throwing ideas around.
Do you need to up your disease control as well? I don't remember what medications you are taking for all of this.
You'll make the right decisions for yourself, I'm sure. Whatever choices you wind up making will be the right choice for you.
it's okay....just the fact that you responded was encouraging.
I had a long day today. Tried to stay home and rest because last night was a night from hell. I hope I can sleep tonight.
thank you ladies for all your concern and help. Blessings
Cynthia
Sally Medina said:
Dear Qudosh: I reread my "encouraging" response. I ment to lift you up. please consider looking into alternative pain relief that also addresses the Nero pain. This is my quality of life saver! Hugs
I have had 2 lumbar surgeries and one cervical. My neck is about 95% better and I am pleased. I knew I couldn't live with the pain and was willing to take my chances. I always had a neurosurgeon rather than an orthopedic surgeon, because I figured that the one that knew the most about the nerves, which were causing the pain, would be the best bet. So far it has been. I pray you get relief. Feel free to express yourself here. We all understand and know that we often need to vent, but even loving family and friends don't completely get it. Take care my new friend.
I am so sorry you have had such a rough time lately! I had a day like yours yesterday so I think I can relate very well. I know you are very tired and in a great deal of pain. You also know that probably you need to fix the bad discs. There might be no other way. Without surgery, they will probably cause more neuro damage. I understand your extreme fatigue. Pain is very wearing on our bodies. Don't beat yourself up about it! You are a fighter and I'm proud of you for going out and not hiding under the covers.
I have and continue to use holistic medicine whenever I can, but some things require surgerical intervention, and this is one of them. I have to do it too. I'm having an MVD (micro vasculare decompression) on Oct. 8th. It is brain surgery, complete with shaven head (yay).This surgery is to fix a very painful facial condition; Trigeminal Neuralgia. Because of my previous 2 cervical spinal fusions, they wanted me to have a bunch of preop x-rays. Yesterday, I found out that my recent neck pain has been coming from the two pins that are coming loose from the hardware in my spine. So..more surgery! Thank God the bone fusion is solid! I found out this not a rare, some people just start rejecting the metal in the screws.
We just have to have a good cry and pity party for a couple of days, then put on our big girl panties (like we always do) and have them fixed. Even though we REALLY don't want to. So, I kind of know, first hand, what you're going through.
Have they told you, specifically what they want to do? Please let me know. I really care about what you. I would like to be here for you as much as I can. And of course, have the least amount to surgery as possible.
Oh, I just reread your posting. Neck surgery is not bad. I've had 2 already. I have 4 fused vertebrae in my neck. Just make sure you have a good surgeon who spealizes in the cervical spine. If you have any questions, let me know. I'll check back several times per day until the 8th. My surgery is at 7 am. And don't know how much I'll be on the site for awhile.
Please take care, and remember that many people care about you!
I’m so sorry. ((Qadosh))I’ve had a lot of pain lately and one little positive is that on days that I have less pain, I’m so happy and grateful but, I also wanted to say that I had a neighbor that had lumbar surgery and it was very helpful and very successful. Perhaps the next one will provide a big improvement. Carefully make the best decision for your needs. Wishing you the best!!! I wish I had more knowledge in this area…but I do know my neighbor did do very very well. Blessings.
I will be praying for you Bels to get through your coming ordeals. I know what you mean about the pity party. I always joke that if I had a good pity party and invited a lot of people, just who would actually show up. My husband told me he would, with a covered dish in hand. Gotta love that man.
Don't worry about it. Just hoping that you have an easier day, and that you are able to reach some decisions soon.
Sharon
Qadosh2him said:
hi Stoney ...thanks for your response. I just wrote a long note answering your questions and then it disappeared into cyber space. I'm too tired now to repeat. Maybe tomorrow I will write it over again.
its ok to look for support; that's why we're here. But, I do know I've been so much in pain and so negative, that suicide seemed the only answer. However, I didn't know how I would do it, and of course, there's the spiritual and family issues.
So guess what! the next day was better, and thats me,rock and roll thru this stuff.
You have had surgery, as someone suggested, are there other options? Frankly, I think some doctors don't give us the right answersl and yet they are out there. For now I send you all the support this site will allow for. Big Hugs.
Oh, Qadosh, I wish I could take your pain from you. It sounds like a couple people here had a positive experience with their neck surgery, so I hope you have the same experience if you go that root.
I know you must be in terrible pain, I'm so sorry this continues to plague you. I know that you are strong, but I fully realize that this can wear you down, wear you out.
I have 3 good Drs I rely on, but I usually get 3 different answers, my GP says surgery, my Rheum says not yet, and my DC says he understands the point of view of both! So it comes down to what you feel inside, what that little voice says, and also what the x-rays say! Those MRI reports are irrefutable!
I know that surgery is recommended when there are no other good alternatives, when there is need to restructure, reinforce, and as you know, there are no pills that will do the trick, so it may be time to start getting used to this idea. Just get yourself mentally and emotionally ready! It may make all the difference in how you feel. I agree that it should be a neurosurgeon, not an ortho.
I know very well where you are right now, and realize that this is not what you wish for when you blow out the birthday candles or something that you put at the top of your Christmas list, but it may do you nothing but good! The relief may be the best gift you could ever hope for!
Gather your strength and resources and get yourself ready!