Pain Dr. Is now using the SCS word

[Wibley]

Hi Everyone,

My pain Dr. sent me home yesterday after my sympathetic nerve block, with a booklet and DVD coverng SCS. He said that since I have had great results with the nerve blocks we need to talk when I go back in 2 wks about the SCS. I have lower leg and foot damage. I have a few questions for those of you that have had this done.

1) Does the battery have to go in the back above buttocks ? I would prefer it in the front. While I plenty of padding in the front on the backside I am lean. Does anyone think this is a negotiable issue ?

2) How did any of you wash your hair if you can't raise your arms above your head for 6 weeks ?

3) How is pain control managed until the unit is programmed ?

4) Are you awake, asleep what while the unit is being put in. While I have a high pain tolerance ( like most CRPS people) this is a bit scarry for me ?

Any help would be appreciated by you experienced SCS users.

Thanks, Wibley

[Mark56]

Originally Posted by Wibley

Hi Everyone,

My pain Dr. sent me home yesterday after my sympathetic nerve block, with a booklet and DVD coverng SCS. He said that since I have had great results with the nerve blocks we need to talk when I go back in 2 wks about the SCS. I have lower leg and foot damage. I have a few questions for those of you that have had this done.

1) Does the battery have to go in the back above buttocks ? I would prefer it in the front. While I plenty of padding in the front on the backside I am lean. Does anyone think this is a negotiable issue ?

2) How did any of you wash your hair if you can't raise your arms above your head for 6 weeks ?

3) How is pain control managed until the unit is programmed ?

4) Are you awake, asleep what while the unit is being put in. While I have a high pain tolerance ( like most CRPS people) this is a bit scarry for me ?

Any help would be appreciated by you experienced SCS users.

Thanks, Wibley

Hello Wibley_

No time like the present to get information. I hope it will aid in your decision.

1) The generator, also known as the battery, goes where you and the surgeon decide mutually. Saffy had a tummy placement, and it did not go well for her. I do not know others with tummy placement. Mine is right butt just below the waist.

2) My hair was dirty, and if anyone complained, they would have received a thrashing, at least verbally. The most important thing was keeping the paddles in place without exacerbating conditions under which they might migrate. Time passes swiftly.

3) I was kept on the regimen of pain meds until thr programming could occur.

4) I was under general anesthesia and had not a clue until worried staff finally were able to coax me awake in recovery because I seemed to like it very well wherever I was during surgey...... a dreamworld.

Prayin all will go well with you,
Mark56

[Rrae]

Welcome to the SCS world!
You're sure to get great input and support here.

I'm so sorry you also are dealing with this VERY frustrating CRPS...I have my own explanation for what CRPS stands for, but it wouldn't pass the censor for beans

You and doc can negotiate where to do the battery placement. Each person is unique and some things work well for others. If there is a medical reason that might hinder the placement in front, then he'll discuss that with you, otherwise they try to cater to your preferences.

The washing of hair has always been a concern to most of us and you'll get good feedback with several ideas. It's always good to have someone help with this at first. It's amazing what the human mind can come up with in terms of personal hygiene

Surely your Dr will send you home with ample pain meds - for the surgical pain especially and hopefully he'll continue to supply you with your regular regime of meds to have on hand for the CRPS and breakthru pain.

While getting the implant, alot of times they'll put you into the 'twilight daze'....I did well with this and was able to communicate with the surgeon. If I would begin to feel any pain while he was working on the incision, I'd say 'ouuuuch' and he immediately shot more local in the area. It's amazing how the anesthesiologist 'knows' when to turn up the gas to put us out more and when to turn down so that we can be aware of what's happening. It's of paramount importance to be able to communicate to the Dr and the SCS Rep when they turn on the buzz and ask you if you are feeling it in the right place.
Now, this is only 'my' point of view and how it happened for me. Others will have different tales.
It all turns out ok and you'll do fine and get through it. They do a pretty good job of keeping you comfortable.

I have a dual diagnosis of Peripheral Neuropathy and CRPS in lower extremities. I LOVE what the SCS does for me. The soothing 'buzzzz' is absolutely wonderful compared to the horrible unrelenting burning pain.

It's great to have you here! Stick around and let us know how this unfolds for you. It's quite a process and I'm sure you'll have lots of questions. We'll be 'with' you all along!

Rae

[ger715]

Originally Posted by Wibley

Hi Everyone,

My pain Dr. sent me home yesterday after my sympathetic nerve block, with a booklet and DVD coverng SCS. He said that since I have had great results with the nerve blocks we need to talk when I go back in 2 wks about the SCS. I have lower leg and foot damage. I have a few questions for those of you that have had this done.

1) Does the battery have to go in the back above buttocks ? I would prefer it in the front. While I plenty of padding in the front on the backside I am lean. Does anyone think this is a negotiable issue ?

2) How did any of you wash your hair if you can't raise your arms above your head for 6 weeks ?

3) How is pain control managed until the unit is programmed ?

4) Are you awake, asleep what while the unit is being put in. While I have a high pain tolerance ( like most CRPS people) this is a bit scarry for me ?

Any help would be appreciated by you experienced SCS users.

Thanks, Wibley

I would assume you would have a trial SCS before deciding on permanent implant.

When I had my trial done, I was awake for pretty much of the time. The need to communciate where the sensations are being felt is important. I found it a bit uncomfortable and unfortunately was getting to a point, I just wanted it over with.

This probably did not do well in locating areas needed to be addressed. I ultimately had a failed trial since I was not getting much below the groin area and if I went real high; felt the knees vibrating. I had hoped to cover both legs and ankles . Rep tried reprograming without success.

Many here have had successful implants. I marvel at Mark sleeping thru it all.

Wishing you a successful trial and permanent implant.

Gerry

[Njbackpain]

Originally Posted by Wibley

Hi Everyone,

My pain Dr. sent me home yesterday after my sympathetic nerve block, with a booklet and DVD coverng SCS. He said that since I have had great results with the nerve blocks we need to talk when I go back in 2 wks about the SCS. I have lower leg and foot damage. I have a few questions for those of you that have had this done.

1) Does the battery have to go in the back above buttocks ? I would prefer it in the front. While I plenty of padding in the front on the backside I am lean. Does anyone think this is a negotiable issue ?

2) How did any of you wash your hair if you can't raise your arms above your head for 6 weeks ?

3) How is pain control managed until the unit is programmed ?

4) Are you awake, asleep what while the unit is being put in. While I have a high pain tolerance ( like most CRPS people) this is a bit scarry for me ?

Any help would be appreciated by you experienced SCS users.

Thanks, Wibley

Just had mine redone yesterday.

1. This time they upgraded to the mini eon, size of a silver dollar. Mine is slightly above my left butt.

2. My wife does my hair and sponge bath. Not fun but worth it.

3. Doctor raised my nucynta 200er by 50mg (paid cash insurance would not cover) and told to take 15mg roxy every 4 hours for a few days (my normal breakthrough that I cut in half normally).

4. I was completely out, way out. Yes, the trial is just topical as it is "just" 2 shots.

The scs worked great for me until it started overheating. Hope the above helps.

[Nanc]

Hi Wibley! You certainly came to the right place to get your SCS questions answered...this is a great, helpful group!

1) I have two SCS's (cervical and thoracic) and initially both batteries were placed in the hip/buttock area on each side. I had to go back in for a revision on the thoracic SCS and had them move the battery since it was very uncomfortable. They moved it to the front/right side, kinda near my ribs. So I now have one in the front and one in the back. I wish they were both in the front because they would both be easier to reach. One thing that you have to keep in mind is that the skin is looser in the front so it can move around a little bit. You also need to keep in mind how you sleep and if it will interfere/be uncomfortable there.
2) My husband washed my hair in the kitchen sink, everything was high enough for me not to bend very much.
3) Pain meds
4) Awake and asleep. Asleep when actually being cut and everything implanted. Awake when they were testing the stimulation.
Good Luck!!!
Nanc

[Mark56]

Originally Posted by Nanc

Hi Wibley! You certainly came to the right place to get your SCS questions answered...this is a great, helpful group!

1) I have two SCS's (cervical and thoracic) and initially both batteries were placed in the hip/buttock area on each side. I had to go back in for a revision on the thoracic SCS and had them move the battery since it was very uncomfortable. They moved it to the front/right side, kinda near my ribs. So I now have one in the front and one in the back. I wish they were both in the front because they would both be easier to reach. One thing that you have to keep in mind is that the skin is looser in the front so it can move around a little bit. You also need to keep in mind how you sleep and if it will interfere/be uncomfortable there.
2) My husband washed my hair in the kitchen sink, everything was high enough for me not to bend very much.
3) Pain meds
4) Awake and asleep. Asleep when actually being cut and everything implanted. Awake when they were testing the stimulation.
Good Luck!!!
Nanc

ARE FOR.....
uh huh,
I have washed the hair of my beloved many times.
My way of giving her special one on one attention as
life and injuries and surgeries and pain
took other shared moments
and rearranged them
ugh.....
even so,
I feel joy when I can minister to her in this way,
and by the by,
little known secret,
but then only a couple of you know
real name
real location
and all
so secret is safe
WELL..... I am her colorist as well,
and it is pretty neat
knowing she loves having her hair
the shade she wants
and I can give
simply
such
a
nice
embrace of love
so very easily
oh how I love her,
mark56

[pooh_ac]

Greetings! I am a SCS user for a long time. I am on my 3rd unit My pain doc is also my surgeon. He placed my 1st unit in my abdomen, since then when he has replaced my units he has attempted to talk me into moving the batery to the back. Saying that.. I now next time I will not have the choice or the statstics to move him to my side. The thing is when you have the battery in your tummy if they need to do ANYTHING with your leads they have to turn your body during surgery. When they do this the sterile field may be lost making the risk of infection quiet high.
That being said I have found in the past as I gained or lost weight the battery moves up or down. So you really want the pocket in muscle not fat.
As far as the hair washing I found putting a raised stool into the bathtub and wrapping a shower curtain around me and then someone else can use then shower head to wash my hair.
My unit has alwas been on when I came out of surgery.
Also I have been sedated, I have had more then 1 conversation with the surgery team.

Originally Posted by Wibley

Hi Everyone,

My pain Dr. sent me home yesterday after my sympathetic nerve block, with a booklet and DVD coverng SCS. He said that since I have had great results with the nerve blocks we need to talk when I go back in 2 wks about the SCS. I have lower leg and foot damage. I have a few questions for those of you that have had this done.

1) Does the battery have to go in the back above buttocks ? I would prefer it in the front. While I plenty of padding in the front on the backside I am lean. Does anyone think this is a negotiable issue ?

2) How did any of you wash your hair if you can't raise your arms above your head for 6 weeks ?

3) How is pain control managed until the unit is programmed ?

4) Are you awake, asleep what while the unit is being put in. While I have a high pain tolerance ( like most CRPS people) this is a bit scarry for me ?

Any help would be appreciated by you experienced SCS users.

Thanks, Wibley

[Wibley]

Thanks everyone for your replies. I know it sounds crazy to worry over dirty hair but for me having dirty hair makes me feel worse. I understand more about the wish to have the battery pack in the back, but my concern is would ypu feel it if you sit on or against a hard surface ?. I assume my doc will be dcheduling a trial period when I go back in ten days. I read the booklet and watched the dVd saw nothing unexpected. One more question, is the feeling you get from the scs similar to the feeling when I have my tens unit powered up ? Thanks for everyone's help.

[CoralToe]

Originally Posted by Wibley

Thanks everyone for your replies. I know it sounds crazy to worry over dirty hair but for me having dirty hair makes me feel worse. I understand more about the wish to have the battery pack in the back, but my concern is would ypu feel it if you sit on or against a hard surface ?. I assume my doc will be dcheduling a trial period when I go back in ten days. I read the booklet and watched the dVd saw nothing unexpected. One more question, is the feeling you get from the scs similar to the feeling when I have my tens unit powered up ? Thanks for everyone's help.

Hi there - thought I'd chime in with my own 2 cents I got my unit exactly 1 year ago last Tuesday, and was the best thing I ever did!! Like you, I was REALLY worried about battery placement, and like you I thought I wanted it in the front. My Doc does a 1 incision deal - placing the battery and leads through the same incision during surgery...so she only placed them there. I agreed, and have no regrets. Mine sits a bit higher than most on here - it is actually above the belt line. I can lay on my back, side, whatever with no issues. If you push against a hard surface directly over your stim - it is a little uncomfortable, but its never been an issue for me.

As for tens vs SCS....its hard to describe. To me the tens unit felt more "electric like" while my stim is a much deeper, rolling/pulsing sensation. Before I had my implant I heard people describing a "rolling massage" feeling - which adequately describes it, but you won't know it til you feel it The best way that I have found to describe it - is if you had a cat lay on your foot and purr really strongly. I say this because I was laying on the bed with my cat one day...and I was sure the cat was laying on my foot purring. But when I looked up the cat was on the other side of my bed - so at least to me thats the best description.