Pain Dr. Is now using the SCS word

[Rrae]

Indeed, the SCS is like a cat purring. Course, if you ramp up the amplitude, you're gonna get more of a jack hammer feel!

As far as feeling the IPG unit while sitting, not really. You get used to it after awhile. At first you'll be tender wherever your unit is placed, but after awhile you'll pretty much forget about it being there.

The doctors 'generally' know not to place it too 'low'. It's not like you'll be sitting 'on' it. You might take into consideration regarding your wallet. I'd probably put it on the opposite side.

Rae

[Wibley]

Hi Everyone,

Thanks for all the info concerning your experiences with the SCS. This is a big help to me. This week was my 1st time back in PT since 10/12. I have the same therapist and updated her on my Dr. appointments with the pain specialist. I spoke about the possibility of having a SCS implanted and my PT was NOT impressed with that idea. Did not say much other than I had better review all the data carefully. I was kind of surprised by that reaction.

Then I had my first PT session, worked on balance, a little strength work and then the majority of time on de-sensitation. Yesterday afternoon I was trying to rest awhile and noticed that my leg was burning all the way up to my hip, I had never had this before, my burning and pain was confined to my lower leg mid calf. If you touched my thigh it was actually warmer that the other leg. This morning it is still burning high up but does not appear as stong. Is this from stressing the nerves at PT ? This is defintely causing a bit og anxiety to me, of course concerned did I overdo it at PT ? Has any one else ever had this kind of a reaction ?

Yikes, I hope I am just being paranoid about the CRPS issue and need not be concerned over every twinge.

Thanks for your input,
Kim

[yellow]

Kim, that sounds similar to my legs.

My CRPS is in my left wrist, both knees, and left ankle because that's where I get all of the symptoms. However, the burning I get all throughout my legs. It didn't start out that way, but one day, back when I was first receiving nerve blocks, the burning started in my legs too and I often get it in my thighs and up by my hips. They do get hot and red during this time too. But I don't have the allodynia, swelling, or any of the other symptoms there, just in my knees and ankle.

It's not a good thing to deal with more burning, but at least it's not a complete spread.

[Rrae]

You're not being paranoid, Kim. CRPS is a very scary and unpredictable monster. Mine set in while I was overdoing at the gym on a treadmill. Thought I was doing my body 'good' with my goal of walking 100 miles a month.......I had NO IDEA what I was doing to myself . Been paying the price for almost 7 years now

I hope this new burning pain goes away.

Rae

[Wibley]

Originally Posted by Rrae

You're not being paranoid, Kim. CRPS is a very scary and unpredictable monster. Mine set in while I was overdoing at the gym on a treadmill. Thought I was doing my body 'good' with my goal of walking 100 miles a month.......I had NO IDEA what I was doing to myself . Been paying the price for almost 7 years now

I hope this new burning pain goes away.

Rae

Thanks Rae,

You now have gotten this incredible scarry diagnosis from your doctor so now it is almost a thought am I imagining these things happening ? and why all these changes so fast ? Grrrrrrr I HATE not being in control, guess I really am an OCD girl at heart But thanks for asking, the burning is finally quieting down after 3 days, just a few spots in the legs and a little near the hip so it is better.
Wednesday I see my pain Dr, so I will update him and guess we are having a discussion over the DVD and booklet he gave me on SCS. I still do not know what my decision will be, when I am on the meds and the spinal shots things are not horrendous, but he said last week he can't do the spinal every week and eventually wants to wean me down on the high dose of meds Oh what do I do ?????
Bye, Kim

[anne523]

Originally Posted by Wibley

Hi Everyone,

Thanks for all the info concerning your experiences with the SCS. This is a big help to me. This week was my 1st time back in PT since 10/12. I have the same therapist and updated her on my Dr. appointments with the pain specialist. I spoke about the possibility of having a SCS implanted and my PT was NOT impressed with that idea. Did not say much other than I had better review all the data carefully. I was kind of surprised by that reaction.

Then I had my first PT session, worked on balance, a little strength work and then the majority of time on de-sensitation. Yesterday afternoon I was trying to rest awhile and noticed that my leg was burning all the way up to my hip, I had never had this before, my burning and pain was confined to my lower leg mid calf. If you touched my thigh it was actually warmer that the other leg. This morning it is still burning high up but does not appear as stong. Is this from stressing the nerves at PT ? This is defintely causing a bit og anxiety to me, of course concerned did I overdo it at PT ? Has any one else ever had this kind of a reaction ?

Yikes, I hope I am just being paranoid about the CRPS issue and need not be concerned over every twinge.

Thanks for your input,
Kim

I too have been given the booklet and DVD re SCS and I truely understand your concerns and feeling paranoid over every new twinge. What caught my eye in this current post was the reaction of your PT. I have RSD of the left hand/wrist/arm and my OT also didn't seem too impressed with the procedure. He was very careful in what was said and told me to think carefully about it. I don't know if all PT/OT have this reaction, or just a coincidence.

[Wibley]

Originally Posted by Rrae

You're not being paranoid, Kim. CRPS is a very scary and unpredictable monster. Mine set in while I was overdoing at the gym on a treadmill. Thought I was doing my body 'good' with my goal of walking 100 miles a month.......I had NO IDEA what I was doing to myself . Been paying the price for almost 7 years now

I hope this new burning pain goes away.

Rae

Had to give a little chuckle when I saw treadmill. After breaking my ankle one time I finally got out of the cast and my ortho said I can resume normal activities. It was not my fault that he did not tell me not to run on the treadmill, yep, refractured the ankle, unfortunately this was only 1 week later. If I recall this led to urgery #4. Bad treadmill !

Bye kim

[Mark56]

My doc was explicitly restrictive regarding my treadmill. When we had to seel everything back before I was able to press hard in my profession one of the nice things we retained was our treadmill with the onboard TV and such. It has seen many miles of use.

BUT I was forbidden for the longest time to use the dear device. Now, I hold on while using since with peripheral neuropathy [the DX of gout was evidently in error, and the burning I have is PN.... and the instability since my legs have no feeling below the knees] I have standing stability issues.... uh huh, so using a cane is my lot.

Makes me look old I gues, as if the grey hair did not do that already.

Mark56

[Rrae]

Originally Posted by Wibley

Had to give a little chuckle when I saw treadmill. After breaking my ankle one time I finally got out of the cast and my ortho said I can resume normal activities. It was not my fault that he did not tell me not to run on the treadmill, yep, refractured the ankle, unfortunately this was only 1 week later. If I recall this led to urgery #4. Bad treadmill !

Bye kim

OH MY, Kim! now THAT truly sucketh!
I must admit to the fact that my treadmill experience was probably to do with the fact that I wasn't wearing good enuf shoes to be doing such an over-the-top venture. Good thing I don't live anywhere near Mt. Everest......I'd probably start trotting up the mountain with the goal of attaining the top wearing nothing but one layer of clothing and sandals.

btw, your doctor sounds JUST like mine! First, the pamphlet, then the shot, then the threat of stripping away the pain meds........I call that being cornered! I put it off for 2 yrs before I finally succumbed. By then tho, it was a MUST DO, because I was going out of my mind with the pain. I mean reeeeaaallly losing it.
In my case it was a good decision.
If the SNB injection gave good results, which mine definitely did, that's a good indication the sympathetic nerve bundle would respond favorably to the SCS. Just stating in 'my' case tho.
Whichever way you go with this, make sure *you* are ok with it. Don't let anyone pressure you otherwise.

Rae

[Wibley]

Originally Posted by Rrae

OH MY, Kim! now THAT truly sucketh!
I must admit to the fact that my treadmill experience was probably to do with the fact that I wasn't wearing good enuf shoes to be doing such an over-the-top venture. Good thing I don't live anywhere near Mt. Everest......I'd probably start trotting up the mountain with the goal of attaining the top wearing nothing but one layer of clothing and sandals.

btw, your doctor sounds JUST like mine! First, the pamphlet, then the shot, then the threat of stripping away the pain meds........I call that being cornered! I put it off for 2 yrs before I finally succumbed. By then tho, it was a MUST DO, because I was going out of my mind with the pain. I mean reeeeaaallly losing it.
In my case it was a good decision.
If the SNB injection gave good results, which mine definitely did, that's a good indication the sympathetic nerve bundle would respond favorably to the SCS. Just stating in 'my' case tho.
Whichever way you go with this, make sure *you* are ok with it. Don't let anyone pressure you otherwise.

Rae

Hi Rae,

I am good with my decision. I talked at length Wed with pain Dr and we feel that this is a good choice based on my condition. Actually my pain Dr. wants to increae my meds, I am being stubborn and want to try ad wait the pain out. I know it is stupid, last night was the worst I have had, pain 8+ did not sleep until after 3am and had to be up at 7 am for Psych eval. Time for a nap, right now wish I had some "heavy" pain killers, the throbbing pain is not so bad but this past 2 weeks I have now started with the burning painand it has climbed up my leg to the hip, it is like the worst sunburn ever. My TENS taked care of all the other break thru pain but not the burning. today just sucks.

Bye, Kim