SO! Wow! You've had both knee replacements done even! my oh my!

My 'knee pain' started suspiciously during the time when I was doing brisk walking (jogging if the coffee was good that day ) aLOT on a treadmil. I had just turned 40 and became very determined and (over)abmbitious and made it a goal to walk the treadmil 100 miles/month. And I was doing just that. Feelin great about it.
Like most people who are out of shape, I had a bit of burning pain in my legs and I was of the mind of the 'no-pain-no-gain' idea so just kept on going.
What i did NOT know was that I was ignoring the pain's message was trying to tell me something was wrong.!!
So! The part of your quote above that I put bold emphasis on is exactly what happened. Only at the time, nobody 'knew' that and I was going to ortho's who were giving me shots in the knees (cortisone and that 'synvisc' (rooster comb) stuff)......xrays, CT's, MRI's show NOTHING.
By then the burning pain was radiated outward and both legs were consumed with this horrible peripherial neuropathy, with the most piercing pain centered at the knees.

This is why I'm so intrigued with your case and asked if your pain was a constant 'burning'? And did it radiate outward?
Did you get the 'official' diagnosis of Peripheral Neuropathy?

We finally pinned down the PN diagnosis (and if you think this is what you've been battling I'd highly recommend jumping over to the Peripheral Neuropathy Forum and take a peek)

So, basically, after spending much $$$$$$ (yes that amount of digits) it was determined there is not a DANG thing wrong with my KNEES!
Rather, the 'over-excited nerves' - stemming from the sympathetic nerve plexus resulted in the nerve ending becomming severly destroyed if not killed permanently. Usually 'numbness' would lean more toward the small nerve fibers permanently died - no feeling. The fact that i still battle 'burning' pain indicates the nerves endings are still alive, just severely damaged and even when damaged nerves are HEALING, they burn as well which causes much confusion because it's hard to determine if you are on your way 'out' of your battle, or if the nerves are still just sitting there damaged.
Ok, if i haven't bored you to sleep....
Again, check out the peripheral neuropathy forum because it is packed with info. I'm constantly jumping between this forum and over there (it's in the main menu)

Anyway Wherewolf......much more to say, but better call it good for one post. I sent you a 'visitor message' on your profile (home) page.....
I am very interested in seeing your chronicles. I think you have to aquire 20 posts B4 you become full-member status and then you can send PM's (private messaging) and other features, such as posting blog sites.....so KEEP POSTING!! You're almost 1/2 way there!

And yes, from the sounds of it, we've had the exact same implant procedure (dual lead percutaneous(under the skin) lead placement) . If they cut in to a piece of your spine bone to place the lead (paddles), that's the laminectomy, which keeps the leads more secure than the way ours are, so we must be careful because our leads could potentially slip easier.

So glad you're here!
Rae

I'm working on my posts so I can post links. My pain feels like ordinary chondromalacia or tendinitis. Just plain old aching around the patella, which gets worse with activity. So over the years I've had about every treatment for those two possibilities. I probably had three dozen Synvisc injections and eventually developed an allergic reaction to it. I even had platelet rich plasma therapy. I have had peripheral neuropathy in my feet for the past five years and that has the typical pins and needles, and sensitivity symptoms. The SCS helps with that too.

......i'll help ya move these posts right along .....

I did forget to ask you where your battery pack was placed?
Mine is in my left upper butt cheek.....thus the fancy medical terminology that our little gang has deemed the BUTT-BUZZERS!!
Actually, the BIONIC butt-buzzers.....

Congratulations and best of luck to you with your new implant. So happy to hear it is providing relief for you As for being physically active, I will pass on the advice my PM doctor gave me regarding the same question....... he told me I will need to respect my limits. I asked "What are the limits?" He winked and replied "You will know." Of course, I didn't know what they were right off the bat, but with a little time I did. Follow your instincts and listen to what your body is telling you. The fact that you are interested in being active shows you have a great attitude and a zest to retrieve as much life back as possible. So the formula of Time + Instincts + Listening to Body = How "Active" You Can Be

Welcome to Our Forum!! Vanna

I've never been very good at following my instincts. If I had 25 years ago perhaps I might not be in this situation

LOL! Sorry to hear that.... but that just shows you how important listening to your instincts can be

It's been four weeks today since my implant. I have been wearing knee braces on both knees for the past ten years and, like a security blanket, I have had a difficult time giving them up. I finally went the entire day without wearing them and I walked quite a bit. I weaned myself off a pretty strong dose of Lyrica, and also Savella, and all pain medications. I am still a bit creeped out by the bulge above my butt, and I find it difficult to touch. But I am becoming less and less aware of it. The mini surges when I change positions have been decreasing day by day. So I assume that means scar tissue is forming. All of a sudden I have stopped feeling so fragile and I am feeling more positive about trying mountain bike riding in four weeks. The real test of the SCS will be after riding, when the knees hurt so much I had to give it up for up to two years at a time. My next checkup is in about three weeks.

This is so good to hear!

I hope your programs are giving you good coverage.
I am due for a tweek, so that'll be in a couple of weeks.
I too am enjoying that feeling of being 'me' again.....unencumbered by foggy pain meds and whatnot.

Your aspirations are what will keep you motivated!

Thanks for the update, it sure does wonders to hear the progress being made.
I've seen your pics, you indeed are born to BIKE!

Those mountain trails were made for you!
Caring
Rae

Hey so good to hear your encouraging words. Im nearly 3 weeks over my implant and feeling good too. You sound fantastic and losing those meds is also good news to hear.

Keep it up and look forward to more updates

Jackie

Hi you all, you know, the funny thing about returning to riding a bike since I can no longer feel my feet it this notion of getting my feet into the toe clips. So, I take the bike down to the street, lean it up against a jeep we have parked there, and force my feet into the clips, then I can peddle away.

It's just humorous. The feet won't guide independently, but the legs know what to do. All I need is a car, a tree, a fence post to get going!

Har Har,
Mark56 PJ