New SCS recipient, want to stay active
 

I got my SCS implant two weeks ago today, it is working really well, and alleviating serious pain I've had in both knees for ten years. I'd like to remain active in mountain biking and weight training. After the proper healing time of course. I'd like to hear from those who are still active in sports.

Check KZLRogue
 

Welcome Wolf-

You will find folks active once truly healed according to the doc's restrictions, rehabilitation, direction. KZL, for instance, just rounded the sixth month anniv of her SCS and this past weekend writes of playing her first round of golf since before. Doc agreed with her. She is tough. Went for 9, I guess, then remained for 18.

Look around, you will find others who have been active. I am only 1 month out from surgery, have the appt with my surgeon tomorrow, am nearly weaned from the pre-existing pain management meds, and HOPE to be able to return to some of my pre-injury life of 5 1/2 years ago where I was an avid mountain biker, alpine skier, hunter, hiker, and DANCED with my wife. So, hope is in charge here.

Take it easy according to your doc's instructions. Failing in that can result in messing up the works.

Good luck,
Mark56:)

Thanks!
 

Thank you. It was your posts about your experiences that led me to join. I see you used to mountain bike. I hope to return to it after the eight week wait period my team recommends. However, I am a bit concerned about falling, which could pull the leads.

Hi Wolf!
 

Hi Wherewolf, I just wanted to say welcome to the group. I have an SCS but I am having a lot of problems so I am not active right now. And I am not a sports person so I probably should not be replying ;) I just wanted to say hello to you and that you will find a lot of support and encouragement in this forum! take care :hug:Tara

Congrats!!
 

Hi Wherewolf and welcome to this AWESOME site!! It is full of WONDERFUL people who pour their heart and soul into every post so others can hopefully learn from their experiences. It's a GREAT place to be for support and advice!

As far as being active, I'd recommend what feels comfortable for you but ONLY with your doctor's blessing!!!! As Mark said earlier, I just hit my 6 month anniversary (today actually) and golfed this past weekend. Since it sounds like you were very active before, I'm guessing that you had the paddle implanted to secure the leads better??? I had the paddle implanted since I am relatively young and wanted to regain some of my former life activities. I am former military, played college and then competitive volleyball (3 - 4 nights a week and on weekends) after that, worked out, ran, golfed (I think 45 holes was the most I played in a day).....my motto was "no pain...no gain". If I didn't come away from a work out drenched in sweat and feeling pushed to my farthest limits, it's wasn't a complete workout, and I'd continue until I got to that point. I can't express the high I got from a great work out like that....yes, I was crazy at times!!! So obviously, when my pain became so severe that I had problems walking and was bedridden at times, it was literally killing me....mostly mentally.

But now, I am gaining some of that old life back. I have realized that my life will never be the same. I can't play volleyball ever again. Maybe if I were NOT the type to go full speed....I tend to have this problem where I cannot let a ball drop without at least getting a touch on it which means hurling my body in any way possible on the ground, and I've accepted that. HOWEVER, I can work out, run, walk, and golf....maybe not to the extreme that I did before but I am still getting enjoyment out of it.....just a different kind.

I'm sure your doctor will let you know when you are ready to start with your activities. Hopefully, you have a great relationship with your Dr. Mine knew from day one that I wanted to golf again so that was my #1 goal. To my surprise, she actually told me that I could start golfing about 3 months after the surgery. She said that the paddle had the leads so secure that even if she were to go in and move them she would really have a hard time. I thought that was GREAT but had a lot of hesitation and realized that I was not ready emotionally to golf that soon. My mind was so conditioned to think that if I were to do something physically fun like golf, my body would pay me back for the next 2 - 3 weeks in ways that I was not prepared to go through again. So after telling myself that I can do this and walking more and more, I felt more physically and mentally fit. I had to hit some smaller milestones before reaching my #1 goal.

I can tell you that I am very sore but I truly believe it is complete muscle pain.....because I actually smile when I move and feel the pain. It reminds me that I am alive and starting to live again.

So, I'd like to think that I am getting back to an active lifestyle! It may not be the same exact one that I had before the pain but you know what.....I'm NOT the same person I was before the pain!! I'd like to think I've become a better and stronger person through my journey so far and that life would be way too boring if things remained the same.....besides, we wouldn't learn anything if it were always the same!

Good luck in your recovery!! Just don't push yourself too much too soon! Trust me on this one as I did and had to take an extra couple weeks off from work. It was not one of my brightest moments!!!

:Heart:

Run?
 

You can run? I thought we weren't supposed to bounce around? That is encouraging. Too much running many years ago is what started my knee problems. Mountain biking is certainly easier than running. So that is encouraging. What do you mean by "work out", weight training?

Yea KZL
 

I just KNEW KZL would chime in, and in a GREAT WAY! KZL :You-Rock:
Mark56 :)

Mountain biking?
 

You used to mountain bike. Have you discussed that possibility with your team? If I get back into it I hope to visit my sister in Colorado. Perhaps you'll be back into it by then. I've had knee problems since 1984 and started chronicling them about nine years ago:*edit*

I just started running a VERY little bit when I walk....maybe a block if that so nothing to the extreme. I felt like giving it a try so I did...not very scientific, I know. My thought process was if I can golf which has a lot of rotating why shouldn't I be able to run.

As far as working out, I am on the eliptical trainer but have not started any free weights yet but again....my thought process is if I can golf which is a lot of repetitive rotating (and I mean a LOT of repetitive rotating especially for me!!!) why couldn't I start out with some light weight training. Of course, I am no doctor so I would certainly check with yours in case I am way off base. My doctor has said from day one, "We are going to get you back in control of your life!!" So she's been very supportive of what I've wanted to do but always cautions me to start SLOWLY and work up to where I want to be....which is hard for me since I like to always jump in with both feet!!

Speaking of which, I've heard people who have had the SCS implants are jumping out of planes and you can't tell me that the landing isn't jarring! (which I so want to do!!! That's my next goal!! It's more of a life goal!!) So in my mind, anything is possible as long as you are smart about it and don't rush it!

Welcome Wherewolf!
 

Thank you for joining up with this magnificent crew! :grouphug:
We hope to learn from you as well!

Congrats on the successful implant!!
When I saw that you've had KNEE problems for all these years, I see that we've got this in common..... My knee pain (brought on by who knows what) began radiating outward to consume both legs in horrible constant burning neuropathic pain! Is this you??
Also wondered if you got the percutaneous leads or the more involved surgery of the laminectomy.....

It's SO good to have you!
It will be great getting to know more about your experience and many hopes, prayers, and well-wishes will be sent out your way for a speedy recovery so you can get back to your ambitions!


Rae
:hug:

Knee pain
 

To make a long story short my initial knee pain was due to destroying all the cartilage under both patellas from many years of running. Even after knee replacements the pain persisted. After ruling out tendinitis and noting the pain was identical in both knees, nerve problems seemed a logical explanation. The theory is the nerves were excited for so many years they won't turn off. It is still a bit of a mystery. The SCS has worked really well so far, but I have not done much more than walk around since the surgery. I have been told to take it easy for 8 weeks. It will be interesting to see what happens when I become more active.

I'm not sure what my surgery was called. Two parallel electrodes go along the spine and they are connected to a unit implanted in my lower back. I assume that involves percutaneous leads.

Congrats!
 

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

Instincts
 

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 :winky:

Knee Replacements!
 

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! :eek::eek:
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!! :p 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
:grouphug:

Working on my posts
 

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 see.....
 

......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!! :p
Actually, the BIONIC butt-buzzers.....
:rolleyes:

Butt-buzzer
 

Right upper butt cheek.

Cool.
 

.....soooooo :)

howz the weather up your way?

......movin them posts, movin them posts......

SO! This would make you 'right' ButtBuzzer.......as opposed to being a 'wrong' one..... :ROTFLMAO:

......btw, "Heckles" do count as posts........ so feel free to remind me that my humor really is a cover-up for lack of intelligence. :)

Ooooo Does this equate to red or blue?
 

A right butt buzzer as opposed to a left butt buzzer? Sounds almost political?!? I am a right buzzer. Properly aligned I reckon.......

Mark56:)

Muchos Gracias ~Senior
 

Thank you for feeding in to my stupidity :) http://dl7.glitter-graphics.net/pub/...cirbnoolem.gif

So, now it looks like I'M the odd one out! .....being a 'lefty'.......

Just depends on your bumper sticker
 

Har Har, just depends on your bumper sticker, if any..... on your car/truck that is! As for me, I am going to go look for a new mountain bike. Wanna see what is out there. I need one since our younger, wilder, ARMY son WRECKED my bike while I was laid up. Oh, I guess I am still laid up, but it doesn't prevent looking.:D

Anyway, I guess I will have to see if I can find a Ralph Nader or Pat Paulsen, or Mickey Mouse sticker I can use for my bike...... when I get one, since the current flavors all seem somewhat distasteful.

Later,
Mark56:)

Odd one out...
 

Actually Rae, I think I'm the odd one out. I have to confess that I am not a true member of the bionic butt buzzers. Mine is on the side.....so does that make me a side kick?

Side Kick!
 

Oh dear Lord does the fun just never end!! http://dl3.glitter-graphics.net/pub/...v9kx6xu2g5.gif

omg

Oh PLEASE tell me we haven't scared Wherewolf off! :confused:

We've hijacked his thread with our stupidity.....oh my.
I take complete responsibility..... :holysheep:

Wherewolf REALLY we aren't usually like this!! :o .......
Please come back!

mine is in my abdomen si i am a gut girl:D

:)
 

Better a side kick than a kick in the side!
Mark56:)

Hi

Im new to this forum but Ive just read with great joy that all of you are SCS implanted:):)

I too have an SCS implanted but only in the last two weeks. I have Failed Back Syndrome with persistent pain in my lower back and legs. Drives me crazy but I have to say my SCS is definitely helping. Gosh I hope it lasts.
You all sound so upbeat , its fantastic.....because life can be so down at times with pain.

At present Im in the early stages of recovering from Surgery, 2 weeks Thursday.....so Im quite immobile and feel 'redundant'!! My husband doesnt know what has hit him bowing to my every need:wink:

Ive read with great laughter that Im a lefty!!!!!! so RRAE you are not alone. Mine is in my upper left buttock!!! Ive to see my Doctor again on Monday and then I will be having my SCS tweaked in September. I do need to feel some more sensation in my buttocks and less in my feet....Im hoping that when I do get back to doing what I usually do most days (not a lot tbh) Im hoping that the SCS will give me the relief I need.

I look forward to hearing from you all and your experiences.

Im living in Dublin Ireland and as I see from the posts it appears that you are all up while Im in bed and vice versa but I hope we will catch up at some stage

Jackie

Welcome Jackie
 

Yep, a few righties here! Welcome! May recovery progress with great success. Oh how I look forward to a reunion of the Bionic Butt Club [oh No, the BBC!] in that hometown of yours!! Wait till we gat one planned for across the Pond!

Mark56 PJ:)

The laughter never ends!
 

Holy COW! :deadhorsebeat:

Thanks aLOT Mark, you made my SCS SURGE when you said 'BBC' because just 2 days ago when i got home from work, i turned my 'DishTV' on only to discover a channel straight from the BBC!!!!!
I LOVE BRITISH COMMEDY!!!
My son walked in and i looked at him as tho I'd seen God himself. He said, "wha's wrong mom".......I go "My life has changed forEVER! I have found a BBC channel!!"

Jackie!
It's SO good to have a fellow LEFTY ButtBuzzer!! By golly, we've got to show them 'righties' !!! :cool:
Your sense of humor will bring you far in this forum, not to mention life in general. Sometimes we just simply have to laugh at ourselves.
But the flip side of the coin is......(and I, personally, try to be careful of this) some folks are just in so much pain and frustration that 'humor' doesn't quite fit the bill....and that is completely understandable.

I hope you are finding your way around the forum ok.....you'll get the 'shoe to fit' in no time, and if you're like some of us, you'll begin to run to this place as a sanctitude of fulfillment.....sorta like a good 'drug' :) as in medication that is.....:p

If you have trouble keeping track of where you've posted.....you can just go to the original thread you made here in the SCS forum, because it has 'you' as the threadstarter and it can be kinda like your very own 'journal' and we'll all jump aboard your thread with much support.
Good Lord, look at Mark56! His thread has reached over 300 posts and nearing 9,000 views!!!
He's a great guy and you'll find that everyone here is just FULL of care and support, even in the midst of their own battles along the way.

You'll love this place!
Consider yourself officially 'bonded' :circlelove:

Rae
'Lefty' :)

Hi again

Thanks a million for the wonderful welcome from everyone. You all sound so upbeat which is terrific, love a bit of fun in the pm:wink:

Mark56 Im actually from Ireland, whereas BBC is an English Channel. We do often get mixed up....but Im Irish and proud of it:winky:


Feeling good today after a somewhat bad night, couldnt sleep as my leg was burning but hey...today is another day....

Must go as my first new Granddaughter is on her way, 6 weeks old today!!!!

Talk later

Jackie

Independence I know
 

Oh yes, I do know..... and well..... it is just that I am figuring you all receive Rae's favorite airwaves ever much more directly than we.:winky:back atcha!
Mark56:)

Hi again:Wave-Hello:

Hope you are all keeping well this lovely Friday!!! Sun is shining here, now thats a first, although it is officially our SUMMER, the weather often lags behind and forgets!!!! a MAJOR problem!!!! so it can be damp and dismal :rain: :hissyfit: so a bonus to have the sun shining :Excited:

Mark56 I hope that my previous post didnt come across as rude :hug: I apologise if it did:)

Went for a short walk today, which was soooo liberating having been stuck indoors for the past two weeks, except for my hospital visits:eek:

Im still trying to 'tweak' my stimulator. Can I ask is it right that sometimes if I move in a different direction the sensation moves to a different place. At times when Im lying down and I have it the way I want it its great, but then occasionally when I stand and walk it feels 'different' Im sure its fine.......
At the moment Ive 5 programmes but Ive been told that will be increased. Walking is 'weird' to say the least as Ive a lot of sensation in my feet which I would prefer if it wasnt. All teething problems Im sure ;)

Hope you all have a lovely evening

Jackie :grouphug:

Hi Rae :Wave-Hello:

Apologies I didnt get to answer your post yesterday I had to dash as my granddaughter arrived with her mum. She is just six weeks old and a joy to have in our family. Unfortunately, Ive to be careful when lifting her so you can imagine its HARD to keep away:winky:

This is such a great place. You know SCS is not that well known over here in Ireland and Ive researched a lot before I had it implanted and do you think I could find any forums in Ireland, nope. So its great to be part of such a wonderful bunch of people who have all gone through the same experiences as me. At least if I need to have a moan or just want to chat about how I feel I now know where to go:grouphug:

Now I know that when Im speaking bout my SCS that YOU all know what Im feeling and what Im talking about . Its hard to describe how that feels. My family look :confused: when I explain the sensations :winky:

Tell me where are you from and in terms of time how many hours 'behind' are you from Ireland..........

Look forward to lots of chatting with you all:hug:

Jackie:circleoflove:

No 'apologies' necessary here my friend!
 

Nooooo, not t'all. !
We just kinda 'wing it' along, you know?

And HEY! ConGRATS to you! The granddaughter how precious!!
This gives us yet ANOTHER thing in common! I will be a first-time "Nana" come late November! I am absolutely thrilled!
Only difference is he's a HE, not a SHE.......but I'm sure we'll still have much to chatter about having this in common! :)

Yes, the time difference..... hmmm.
I'm trying to figure this out. Right now as I post it is Friday August 20 at 7 o'clock pm........so what time does that make it for you? Are you technically a day ahead of us orrrr.....? gosh, how does that work?? :confused:
I KNEW I shoulda paid more attention in Geography! :o
I am (Literally!) smack DAB in the middle of the US of A ! Literally!

One of our dear friends here is from Australia! She is so precious! AND devoted to this forum! She actually makes herself available to anyone here who may have trouble sleeping and just 'needs to talk'. She is a gem! Her name is Koalla, she is one of the team moderators.

This place was made just for you Jackie! I can see this plain as day!
And YOU no doubt will be a complete blessing to us! :hug:

All the mystery is gone
 

Oh Rae- Cool about the forthcoming birth, and a grandson! The mystery is GONE!! I remember when our twins were born, that ultrasound gadget was still an EXPENSIVE and rarely used except, when they wanted to confirm we had twins and not a child and huge cancerous tumor running ragged in there. We learned gender when out they came a week after we knew they were twins. HaH!!!!

Now Jackie, sniff sniff.......... naw, I am not offended, just trying to communicate effectively with you. I know Rae likes that comedy from across the Irish Sea, only thought the comedic line of the Bionic Butt Club would hit home.

Oh, and Rae, I think, but don't hold me to it, that Jackie is somewhere around 7 hours ahead of us timewise [are you Mountain time zone in your part of that Kansan wilderness Rae?]

Rode my bike today....... huff, huff.

More later,
Mark56:)

Ohhhhh Noooooo!
 

He said the 'K' word!!!
you know.....SOME people equate people from 'K'...:) to be a wee bit on the "Toto ate the Map",......as in, 'out to lunch'.....as in 'toys in the attic'...

But NOT ME!! http://dl7.glitter-graphics.net/pub/...q4dj20d7by.gif

Noooope, I certainly have NEVER ate a map in all my life! :)

And yes, i read that you were on the bike today! Actually, i was typing you a 'mom-like' rant at the same time you were sharing with us the wonderful monumental day this has been by riding the maiden voyage bike! WOW!
Very inspiring!
I set my alarm to get my flabby AS$ to the therapy pool first thing in the morning!!

.......and i'm assuming u noticed the little hint i threw at you regarding that of horse maintenance ? ehemm. :cool:

Well yes I did
 

Not wanting to be too forward on that point [and your rant was well accepted and noted-did you see my response?] I do know caring for a horse is a major undertaking, not the least of which would be providing room to run, stables and the like. We would have much to do by way of preparation on this end. So now, did you see my pm to you?

Mark56:winky:

Well OH my!
 

I've been so caught up in typing up this SCS forum!
I did NOT notice the little jiggy up yonder in the corner of the screen notifying me of a message! :o hold on.....lemme put the phone down......

Update
 

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.