I don't have first hand experience with it thankfully but I think the simulator is less nasty than the catheter that puts meds in the epidural space all the time. It's worth a try if nothing else works.
I have been trying to get my pain Dr to inject my SI joint for a year now but everyone was convinced my pain was coming from the disc. He finally injected it yesterday so I am hopeful that the problem is solved temporarily at least.
After reading more about the stimulator, I've decided I need to avoid it at all costs. I will not be able to ride again with that implant. I'm going to see another spine specialist in January for a second opinion about my back. I have a thickened L5 nerve root, and I want to know if it's causing some of my leg pain. One guy looked at my MRN and spent 5 minutes looking at me and said it was nothing - but he asked no questions about my leg pain as if it were entirely separate. My physical therapist thinks it may be a big deal and got me the name of someone else. It would be great if it was my back so I wouldn't have to get the nerve in my leg cut out.
Laurie, sounds like you have the opposite problem - everyone thinks it's your back and not your SI. Everyone thinks it's my femoral nerve and not my back. Those blocks feel good after they kick in.
Where is he? The spine surgeon I'm going to next was recommended by my PT, and best of all he's close. I am so tired of going all over Maryland several times a month. The car rides are very hard on me.
Sort of in a holding pattern. My leg still shocks me frequently, but I can walk better. Some days I can push through the pain, but I am on more meds than ever. I had another surgery 4 days before Christmas where they removed the nerve that runs down the back of my leg. I can't feel anything down to the back of my knee now, yet the broken nerve is still acting nasty. I've had 4 nerves cut now and 9 surgeries since this started 3 years ago.
Thanks for thinking of me. I haven't been keeping up with this thread since I haven't much felt like talking about the lack of progress.
Laurie, my horse is so short someone could probably throw me up on top of her. My left leg is too weak for me to mount, but I can climb a mounting block. But then I can't get off!
I spent all day at Mercy Hospital in Baltimore talking to yet another pain specialist. I am a good candidate for a spinal stimulator and am going to do a trial in July. If it works, I could get off all of my drugs and have a fairly normal life again. Whenever I ask about horseback riding though, my doctors ALL cringe - literally. I have a Paso Fino! No bouncy! I will get one of those fancy x-country air vests in case I come off.
The spinal stimulator is the end of the line. They don't think cutting anymore nerves will fix the problem. I have not had good luck with the nerve resections so it's hope this works or live with it forever.
They are talking about doing a trial with a stimulator for me as well but thankfully it won't be anytime soon as I am doing relatively well at the moment. Let them cringe! I love my pain specialist, he is doing everything he can to keep me on a horse. Plus he looks like Johnny Depp!
GotGait, I just read your thread and I am so sorry you have to go through all of this. I started having shocks down my back and legs in mid-October 2012 and by the end of October was walking wobbly. Endless rounds of doctors/tests/may have MS that scared the bejezzus out of me. They ruled out MS and it is spinal stenosis of the thoracic which is rare. By that time I am walking with a cane and have a handicap card for my vehicle. Still riding SLOW at a walk but have to have someone hold my horse to get on and off but grateful for the ride. I had surgery on April 15 and OMG woke up in more pain than I care to remember. On gabapentin and a bazillion other drugs.
I can walk better now but my balance is still off. Can't ride - don't know when I will be able to ride. My legs and feet are still numb. Sick of having issues - glad that I didn't have MS or ALS or any number of scary stuff they told me it could possibly be.
I hope you improve each and every day. I am going to join the wellness center so I can swim. I have a bum knee and it bothers me now and keeps me from walking to strengthen my back. Dang...it is always something and bless my hubby's heart...he is not a nurse of any sort. I want to drop kick him for a field goal on a regular basis. I miss my horses. I can go see them now but it isn't the same as tacking them up for a ride.
My husband and a barn friend helped me tack up and get on and away I went on my Paso who has not been ridden in a year. And... she would not go above a walk. She is a pistol who loves going fast! She finally shuffled a little faster for me. She has always taken care of me and is worth her weight in gold. She somehow knows I am messed up.
My husband has to pick me up off of her at the end, and she stood like a statue. I love this horse so much.