Quote:
Originally Posted by nanaz
Thank you all for reaching out to me. You have no idea how much I appreciate your words, ideas and sharing your stories helps me along this journey.
There's a note for PamelaJune, Rrae, Eva, and Gerry at the end of this post.
After posting here, I had me a good cry. It was either that or end this pain permanently (which is not an option/but I certainly understand what makes it one for others). Gathered my notebook, made it up to date with everything I've been told about Stim, right thru to today. Then I went thru my 5options for Stim. I played with each one jotting notes on each then naming them. Think I have that part down. The leaning curve hahaha none of them are even close to aiding my back. The pain originates there. The more movement the more pain I experience. Even basic personal tasks like cooking, showering; then household stuff can crank this baby to point I'm angry with myself on why I don't ask my dr,. For a wheelchair. Such a confusing mess.
Sent my Rep a text (so I had it in writing) and told him I'm quite sure the lead has moved. It is doing so/so on my legs but its throwing both my calves into fits. I can hardly stand or walk that's how bad they are. Perhaps I'm having spasms during the Stim/perhaps its the stim in general and this is what others feel.
He asked if I could go to PM tomorrow for a "tweek" and see if he can get better coverage. The unit gets removed Tuesday. I agreed on tomorrow just so I know I can say I have tried everything.
Did you have any strange things going on with your body during stim? My hands and feet are swollen. I never ever deal with this. Got it Tuesday and I am unable to sleep. I don't even get sleepy. Tuesday I figured it was all the pain/emotions from procedure. But I'm still unable to!
I see him tomorrow at 9:30. Will let you know what happens. Thank you so very much for responding to me. I have more info to take tomorrow thanks to you!
Gerry: I too have been told I will probably still need pain meds. Right now I'm truly asking what the point of all this is! Do you get good pain control in that your still able to move about without the pain returning until around the next dose? What I'm on gives me relief for my basic tasks. Throw a short 30 minute shopping trip and I'm screwed til the next dose. Mine are 12 hours apart. I sure don't blame you for not wanting to do this again.
Eva - thank you for being with me in spirit! I am taking notes but you gave me even more to add, and so I've done just that. Thank you. Its hard to think when coping with intense pain.
Rrae - thank you for responding to me during my meltdown phase. I was going down fast. You and PamelaJune gave me enough to tighten my grip and keep holding on. I've been trying stem now and then. I guess I think magically its going to arrange itself where it needs to be I keep on trying. It has my calves hurting quite bad. You've given me hope to keep on with this. Those first two pain free days are still on my mind!
PamelaJune - thank you for responding to my post. You and Rrae gave me hope to cling to. I was at the end of my witts with this entire process. The things you said about pain and the body moving made so much sense! This has been the worst procedure I've ever gone through. People like you reaching out have made it much easier to bare.
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Nanaz,
During my failed trial I experience terrible groin pain as well as the pain going to my knees; nothing reached my spine nor my ankles/feet which are my most painful with peripheral neuropathy.
I am prescribed two 60mg's Oxycontins =120mgs every 12 hrs. totaling 240 per day. The insurance will only pay for twice a day so my prescription reads take two 60mg's every 12 hrs. But; I am actually taking one 60 mg's every 6 hrs., along with Oxycodone (Percocet) for break thru pain up to a max of 4 a day (7.5mgs./325) I take about 3 to 3 1/2 a day. Once in a while may take a fourth. I have been on this dose for a few years now. It is enough to keep help me get thru each day. I don't want to go higher.
My PM has offered to raise amount if needed; But I tell him I would rather stay on the dose I am currently on. He feels I am a success story because the dose appears to be at a level that covers my pain enough to make life manageable with same does for years. I had originally done the injections, etc. then eventually the trial; but all along this amount of meds were somewhere in the picture giving me relief. I still have 24/7 pain. I can often go from 4 to 8 on a real bad day. Of course, the more I try to do things and sometimes don't have the sense to stop; Then like most of us, we pay for it. That has been times I have had a higher # but not all that often.
I use a cane when I go out for balance; but also because if someone sees you with a cane they will be more careful around you. I fell once when someone moved a chair into me and could not get up on my own. Needed someone under each arm to lift me; Therefore; the cane is my comfort when going out.
Reading other posts thru the years seems to often reveal there are trade-offs with the SCS including spasms; but many feel it is worth it. But I have also read some encouragements; then hear the same person hopes to be able to have their SCS removed. (By the way, removal is quite unusual once the lead gets screed in it is difficult to remove this type of surgery. Many mixed stores; plus and minus. Many insurance companies require psychological testing because there is much to deal with; battery charging, along with certain limitations; also some have expectations that are very high and are open to disappointment. This just often a preliminary testing.
Once again, in my case, later I had some surgeries which had I had the implant done would not have worked out very well. Also it is a good idea to really have the best idea for your situation where you want you battery placed. I know I have quite a bit of lower spine pain so the thought of a battery pocket in my butt does not sound to good for someone like me. You are wise to get all the info you can get. Again, what the expectations are has a lot to do with whether you are satisfied or not.
Praying you will make the decision that is the right one for you.
Gerry