SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


advertisement
Reply
 
Thread Tools Display Modes
Old 01-03-2015, 10:51 AM #1
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
Default Please Help Me---Assistance - Advice - Anything

I am beyond miserable.

Tuesday started my SCS Trial. Dr.'s orders to take it easy Tuesday & Wednesday. The first 48 hours were fantastic! My pain level was reduced to a 4! Very rare does my pain go below a five.

Thursday morning it went downhill and it hasn't stopped. The hip, bumm and calf muscles feel as though they are ripping off the bones. Sleep is trying to find comfort or relief, so the remote is getting a workout! I am on restrictions so i haven't done anything to have jacked it up like this.

It brought me to tears on Thursday. Decided to call my Rep. from Boston Scientific. Hopefully, he would have a suggestion or better yet be able to program a tweek. No such luck.

He said since my pain level was a 4 the first two days proves the stim is helping. Numerous times I told him, yes the first two days were great. Being on restrictions, taking my medications and hardly doing anything played a major roll in keeping the pain tolerable.

He asked what my current pain level was. I said 7/8. He asked i turn off the stim, while we talked. A few minutes later, he asked for my pain level. My answer was 7. He responds, "see it is working. You were just a 7/8, now your just a 7.”

Wow....I didn't know we split numbers so closely! The 7 vs 7/8 certainly had no difference on the intense pain I was feeling.

Then he said, "even with a stim, you will have good days and bad ones."

Have I totally misjudged this unit and what its to do? I can't think straight. I'm overwhelmed. I hurt.

Any advice to set me straight? Have I totally lost it?
nanaz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-04-2015), ger715 (01-04-2015), Rrae (01-03-2015)

advertisement
Old 01-03-2015, 04:23 PM #2
PamelaJune's Avatar
PamelaJune PamelaJune is offline
Senior Member
 
Join Date: Dec 2013
Location: Where my heart is
Posts: 1,140
10 yr Member
PamelaJune PamelaJune is offline
Senior Member
PamelaJune's Avatar
 
Join Date: Dec 2013
Location: Where my heart is
Posts: 1,140
10 yr Member
Default

Nan you haven't lost it, truly! It is a common story amongst all us scs users even though we have different brands and models! Mine is a Nevro and while operating there is no buzzing sensation anywhere so the only indicator it's working is the "overall" reduction in pain, I say overall because there are days I go to check and see if it's actually on as my pain has gone like yours from a 4 to an 8 overnight!

Splitting hairs, yes we are familiar with reps enthusiasm and oblivion to our situation, my only answer is sadly they are ultimately sales people! Nevro have recently gone through a change in their approach to staffing and the new reps all now come from the medical field rather than pushy sales people!!

Anyway my rep with a background in muscular and skeletal explained when we are in pain we hold our whole body differently and walk and move differently, when our pain is lessened the body muscle mass relaxes and the muscles you have not been using while in pain begin to be used again, you are not aware of it because unless weight lifting and consciously selecting what muscle group to use your body chooses the muscle group. its possible this has happened to you, OR the lead connectivity you had has moved as mine did in trial, I was moving differently and my pain was lessened so less conscious of my movements and managed to catch the external pack on everything and it actually came loose (not the leads inside you the lead that connects to the unit outside your body).

I wish you well, call your rep back and ask him if it's possible the lead externally may have disconnected to the unit somehow. Don't let him positive talk and sales glib you into acceptance, challenge him, he is the one you will have if you go ahead with a permanent unit so it's really important you have a rapport and feel comfortable with him. Reps make a huge huge difference. Read Mark56 story he has a Boston


Quote:
Originally Posted by nanaz View Post
I am beyond miserable.

Tuesday started my SCS Trial. Dr.'s orders to take it easy Tuesday & Wednesday. The first 48 hours were fantastic! My pain level was reduced to a 4! Very rare does my pain go below a five.

Thursday morning it went downhill and it hasn't stopped. The hip, bumm and calf muscles feel as though they are ripping off the bones. Sleep is trying to find comfort or relief, so the remote is getting a workout! I am on restrictions so i haven't done anything to have jacked it up like this.

It brought me to tears on Thursday. Decided to call my Rep. from Boston Scientific. Hopefully, he would have a suggestion or better yet be able to program a tweek. No such luck.

He said since my pain level was a 4 the first two days proves the stim is helping. Numerous times I told him, yes the first two days were great. Being on restrictions, taking my medications and hardly doing anything played a major roll in keeping the pain tolerable.

He asked what my current pain level was. I said 7/8. He asked i turn off the stim, while we talked. A few minutes later, he asked for my pain level. My answer was 7. He responds, "see it is working. You were just a 7/8, now your just a 7.”

Wow....I didn't know we split numbers so closely! The 7 vs 7/8 certainly had no difference on the intense pain I was feeling.

Then he said, "even with a stim, you will have good days and bad ones."

Have I totally misjudged this unit and what its to do? I can't think straight. I'm overwhelmed. I hurt.

Any advice to set me straight? Have I totally lost it?
__________________
I can still remember what life was like before pain became my life long companion
PamelaJune is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EnglishDave (01-04-2015), eva5667faliure (01-04-2015), ger715 (01-04-2015), Rrae (01-03-2015), ShaggyChic_1201 (01-16-2015)
Old 01-03-2015, 07:28 PM #3
Rrae's Avatar
Rrae Rrae is offline
Grand Magnate
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Rrae Rrae is offline
Grand Magnate
Rrae's Avatar
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Heart

Nan
I'm so sorry things have taken such a drastic turn since you first started your trial. First off, take a deep breath Anxiety, confusion, panic, etc all play a roll in tensing our muscles and pain flares avail.

The fact that you did seem to respond favorably those first 2 days is a good thing. Your first couple of posts reflected how impressed and hopeful you were. The SCS is wonderful for leg pain and sometimes they can program the stim to your lower back, so try not to lose hope ok?

99 times out of a 100 your leads will move, even slightly, during a trial run. They aren't connected very well at all during the trial. This might be what has happened, like Pam mentioned.
I'm sorry your Rep didn't seem to comprehend you when you explained your concern over your level of pain. He seemed to kinda write off your concern and made it sound like a positive thing that your pain score went down a half a point wow.
No wonder you are left feeling like this.

So, are you not getting the stimulation at all at this point? Or, are you feeling it in a different area? Maybe the stim is actually causing more pain?
questions questions
Have you tried adjusting the pulse/width? The higher the pulse, the more 'buzz' you will get. Sometimes that high of a buzz actually works against me and I feel like I'm crawling out of my skin. So, I turn it way down so that it is more of a 'tap tap tap' rather than a constant bzzzzzzzzz. Other times when I get breakthru pain, I crank it up high.
You mentioned that your controller is getting a work out, so you probably have tried all that I've said.

When is trial going to be over? When you go for the appointment it would be good to have someone with you in case your medical team doesn't seem to be able to 'hear' you very well. If you have someone with you they will be able to help 're-direct' the issues that are most important to you.
Sometimes doctors do tend to make light of a situation in favor of what *they* want to hear, thus a more positive report goes into your file. why? because it makes them look good. Hopefully the contrary is true in your case and you have a very understanding/good listener doctor who will do their best to get to the bottom of this.

Again, don't lose hope just yet. Let's see what your doctor has to say.
I'm not too impressed with your rep from what you've shared.
It would have been great if he could've tweaked you back to where you were at the beginning.
Please keep us posted.
I am praying for your situation.....
Rae
Rrae is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EnglishDave (01-04-2015), eva5667faliure (01-04-2015), ger715 (01-04-2015)
Old 01-04-2015, 12:27 PM #4
eva5667faliure's Avatar
eva5667faliure eva5667faliure is offline
Grand Magnate
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,523
10 yr Member
eva5667faliure eva5667faliure is offline
Grand Magnate
eva5667faliure's Avatar
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,523
10 yr Member
Default

Quote:
Originally Posted by PamelaJune View Post
Nan you haven't lost it, truly! It is a common story amongst all us scs users even though we have different brands and models! Mine is a Nevro and while operating there is no buzzing sensation anywhere so the only indicator it's working is the "overall" reduction in pain, I say overall because there are days I go to check and see if it's actually on as my pain has gone like yours from a 4 to an 8 overnight!

Splitting hairs, yes we are familiar with reps enthusiasm and oblivion to our situation, my only answer is sadly they are ultimately sales people! Nevro have recently gone through a change in their approach to staffing and the new reps all now come from the medical field rather than pushy sales people!!

Anyway my rep with a background in muscular and skeletal explained when we are in pain we hold our whole body differently and walk and move differently, when our pain is lessened the body muscle mass relaxes and the muscles you have not been using while in pain begin to be used again, you are not aware of it because unless weight lifting and consciously selecting what muscle group to use your body chooses the muscle group. its possible this has happened to you, OR the lead connectivity you had has moved as mine did in trial, I was moving differently and my pain was lessened so less conscious of my movements and managed to catch the external pack on everything and it actually came loose (not the leads inside you the lead that connects to the unit outside your body).

I wish you well, call your rep back and ask him if it's possible the lead externally may have disconnected to the unit somehow. Don't let him positive talk and sales glib you into acceptance, challenge him, he is the one you will have if you go ahead with a permanent unit so it's really important you have a rapport and feel comfortable with him. Reps make a huge huge difference. Read Mark56 story he has a Boston
you my dear
hit the nail on the head
if i may
please keep a log
i implore you
any conversation interaction persons
reps doctors anyone in the medical
point
you must be your own advocate
use your inner strength
if you have an advocate who goes thought this with you
is of such importance
keeping a log
asking who it is you are speaking with
names very important
and use their name
may God give you inner strength to take on
persons of such rude inappropriate idiotic remarks
such as that rep. oh heck no
i'm with you in spirit all the way
kick butt
me
__________________
someone who cares
eva
eva5667faliure is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EnglishDave (01-04-2015), ger715 (01-04-2015), Rrae (01-11-2015)
Old 01-04-2015, 08:59 PM #5
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

Quote:
Originally Posted by nanaz View Post
I am beyond miserable.

Tuesday started my SCS Trial. Dr.'s orders to take it easy Tuesday & Wednesday. The first 48 hours were fantastic! My pain level was reduced to a 4! Very rare does my pain go below a five.

Thursday morning it went downhill and it hasn't stopped. The hip, bumm and calf muscles feel as though they are ripping off the bones. Sleep is trying to find comfort or relief, so the remote is getting a workout! I am on restrictions so i haven't done anything to have jacked it up like this.

It brought me to tears on Thursday. Decided to call my Rep. from Boston Scientific. Hopefully, he would have a suggestion or better yet be able to program a tweek. No such luck.

He said since my pain level was a 4 the first two days proves the stim is helping. Numerous times I told him, yes the first two days were great. Being on restrictions, taking my medications and hardly doing anything played a major roll in keeping the pain tolerable.

He asked what my current pain level was. I said 7/8. He asked i turn off the stim, while we talked. A few minutes later, he asked for my pain level. My answer was 7. He responds, "see it is working. You were just a 7/8, now your just a 7.”

Wow....I didn't know we split numbers so closely! The 7 vs 7/8 certainly had no difference on the intense pain I was feeling.

Then he said, "even with a stim, you will have good days and bad ones."

Have I totally misjudged this unit and what its to do? I can't think straight. I'm overwhelmed. I hurt.

Any advice to set me straight? Have I totally lost it?

Nanaz,

I had mentioned previously I had a failed trial.

My rep, immediately following the trial procedure while still in the hospital, did some reprograming. I was so worn out from laying on the table for the trial with the rep. and my PM doctor asking is this better; then that; etc., I could hardly deal with the pain. Was glad when we were through and was off the operating table. After several attempts, it appeared he had reprogramed something that seemed would be okay. I went home from the hospital. The next day I was really having some issues;

Like you, i called my rep. It was the weekend so he said he would meet me at the Pain Management doctor's office on Monday. We met there the upcoming Monday. He tried many different programs; nothing worked. He left the room; then my doctor comes in and says we are going to stop the trial and remove everything. My trial was over. My REP NEVER even came back to say "good bye". He was not getting a sale.

Prior to doing the trial, we were best buddies having a lot in common. We were two happy campers; then the "boom" was lowered. NO SALE!! No Good Bye.

Several weeks later my doctor suggested another trial; I declined. Not sure how much of a medical background the rep has to make decisions like being in an operating room; especially when the permanent implant is being done and making the final decision in some cases when there is a lot of scar tissue from other surgeries; and maybe only one possible lead to be put in.

There have been times noted when the rep makes the final decision with the Neurosurgeon telling the rep of the ability to only implant one lead; and the rep. says to go ahead and do the implant anyway. This is already starting out with some strikes agains success of the implant.

I can only tell you of my experience and decision not to go ahead with another trial since I already knew I didn't want to deal with the recovery of the implant; leads to spinal cord area, as well as a pocket incision to put battery in, but also the way the rep left that day in the doctor's office when he was unable to reprogram worried me a rep might not be there when I needed him/her. I'm sure there are some very reliable reps; but I wasn't going to take any chances. For me another trial was not an option. I had only done the original trial because my Pain Management Doctor mentioned a number of times about doing a trial so I decided to finally get it done.

Yes, I am on pain medication, most likely for life. My PM had warned me there was a good chance even with an SCS I would still require meds; just not as much.

I sincerely wish you the best whatever decision you make.


Gerry

Last edited by ger715; 01-04-2015 at 11:36 PM.
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EnglishDave (01-05-2015), eva5667faliure (01-05-2015), PamelaJune (01-07-2015), Rrae (01-11-2015)
Old 01-04-2015, 11:49 PM #6
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
Default

Thank you all for reaching out to me. You have no idea how much I appreciate your words, ideas and sharing your stories helps me along this journey.

There's a note for PamelaJune, Rrae, Eva, and Gerry at the end of this post.

After posting here, I had me a good cry. It was either that or end this pain permanently (which is not an option/but I certainly understand what makes it one for others). Gathered my notebook, made it up to date with everything I've been told about Stim, right thru to today. Then I went thru my 5options for Stim. I played with each one jotting notes on each then naming them. Think I have that part down. The leaning curve hahaha none of them are even close to aiding my back. The pain originates there. The more movement the more pain I experience. Even basic personal tasks like cooking, showering; then household stuff can crank this baby to point I'm angry with myself on why I don't ask my dr,. For a wheelchair. Such a confusing mess.

Sent my Rep a text (so I had it in writing) and told him I'm quite sure the lead has moved. It is doing so/so on my legs but its throwing both my calves into fits. I can hardly stand or walk that's how bad they are. Perhaps I'm having spasms during the Stim/perhaps its the stim in general and this is what others feel.

He asked if I could go to PM tomorrow for a "tweek" and see if he can get better coverage. The unit gets removed Tuesday. I agreed on tomorrow just so I know I can say I have tried everything.

Did you have any strange things going on with your body during stim? My hands and feet are swollen. I never ever deal with this. Got it Tuesday and I am unable to sleep. I don't even get sleepy. Tuesday I figured it was all the pain/emotions from procedure. But I'm still unable to!

I see him tomorrow at 9:30. Will let you know what happens. Thank you so very much for responding to me. I have more info to take tomorrow thanks to you!



Gerry: I too have been told I will probably still need pain meds. Right now I'm truly asking what the point of all this is! Do you get good pain control in that your still able to move about without the pain returning until around the next dose? What I'm on gives me relief for my basic tasks. Throw a short 30 minute shopping trip and I'm screwed til the next dose. Mine are 12 hours apart. I sure don't blame you for not wanting to do this again.

Eva - thank you for being with me in spirit! I am taking notes but you gave me even more to add, and so I've done just that. Thank you. Its hard to think when coping with intense pain.

Rrae - thank you for responding to me during my meltdown phase. I was going down fast. You and PamelaJune gave me enough to tighten my grip and keep holding on. I've been trying stem now and then. I guess I think magically its going to arrange itself where it needs to be I keep on trying. It has my calves hurting quite bad. You've given me hope to keep on with this. Those first two pain free days are still on my mind!

PamelaJune - thank you for responding to my post. You and Rrae gave me hope to cling to. I was at the end of my witts with this entire process. The things you said about pain and the body moving made so much sense! This has been the worst procedure I've ever gone through. People like you reaching out have made it much easier to bare.
nanaz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-05-2015), PamelaJune (01-07-2015), Rimbanda (01-12-2015), Rrae (01-11-2015)
Old 01-05-2015, 02:03 AM #7
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

Quote:
Originally Posted by nanaz View Post
Thank you all for reaching out to me. You have no idea how much I appreciate your words, ideas and sharing your stories helps me along this journey.

There's a note for PamelaJune, Rrae, Eva, and Gerry at the end of this post.

After posting here, I had me a good cry. It was either that or end this pain permanently (which is not an option/but I certainly understand what makes it one for others). Gathered my notebook, made it up to date with everything I've been told about Stim, right thru to today. Then I went thru my 5options for Stim. I played with each one jotting notes on each then naming them. Think I have that part down. The leaning curve hahaha none of them are even close to aiding my back. The pain originates there. The more movement the more pain I experience. Even basic personal tasks like cooking, showering; then household stuff can crank this baby to point I'm angry with myself on why I don't ask my dr,. For a wheelchair. Such a confusing mess.

Sent my Rep a text (so I had it in writing) and told him I'm quite sure the lead has moved. It is doing so/so on my legs but its throwing both my calves into fits. I can hardly stand or walk that's how bad they are. Perhaps I'm having spasms during the Stim/perhaps its the stim in general and this is what others feel.

He asked if I could go to PM tomorrow for a "tweek" and see if he can get better coverage. The unit gets removed Tuesday. I agreed on tomorrow just so I know I can say I have tried everything.

Did you have any strange things going on with your body during stim? My hands and feet are swollen. I never ever deal with this. Got it Tuesday and I am unable to sleep. I don't even get sleepy. Tuesday I figured it was all the pain/emotions from procedure. But I'm still unable to!

I see him tomorrow at 9:30. Will let you know what happens. Thank you so very much for responding to me. I have more info to take tomorrow thanks to you!



Gerry: I too have been told I will probably still need pain meds. Right now I'm truly asking what the point of all this is! Do you get good pain control in that your still able to move about without the pain returning until around the next dose? What I'm on gives me relief for my basic tasks. Throw a short 30 minute shopping trip and I'm screwed til the next dose. Mine are 12 hours apart. I sure don't blame you for not wanting to do this again.

Eva - thank you for being with me in spirit! I am taking notes but you gave me even more to add, and so I've done just that. Thank you. Its hard to think when coping with intense pain.

Rrae - thank you for responding to me during my meltdown phase. I was going down fast. You and PamelaJune gave me enough to tighten my grip and keep holding on. I've been trying stem now and then. I guess I think magically its going to arrange itself where it needs to be I keep on trying. It has my calves hurting quite bad. You've given me hope to keep on with this. Those first two pain free days are still on my mind!

PamelaJune - thank you for responding to my post. You and Rrae gave me hope to cling to. I was at the end of my witts with this entire process. The things you said about pain and the body moving made so much sense! This has been the worst procedure I've ever gone through. People like you reaching out have made it much easier to bare.

Nanaz,

During my failed trial I experience terrible groin pain as well as the pain going to my knees; nothing reached my spine nor my ankles/feet which are my most painful with peripheral neuropathy.

I am prescribed two 60mg's Oxycontins =120mgs every 12 hrs. totaling 240 per day. The insurance will only pay for twice a day so my prescription reads take two 60mg's every 12 hrs. But; I am actually taking one 60 mg's every 6 hrs., along with Oxycodone (Percocet) for break thru pain up to a max of 4 a day (7.5mgs./325) I take about 3 to 3 1/2 a day. Once in a while may take a fourth. I have been on this dose for a few years now. It is enough to keep help me get thru each day. I don't want to go higher.

My PM has offered to raise amount if needed; But I tell him I would rather stay on the dose I am currently on. He feels I am a success story because the dose appears to be at a level that covers my pain enough to make life manageable with same does for years. I had originally done the injections, etc. then eventually the trial; but all along this amount of meds were somewhere in the picture giving me relief. I still have 24/7 pain. I can often go from 4 to 8 on a real bad day. Of course, the more I try to do things and sometimes don't have the sense to stop; Then like most of us, we pay for it. That has been times I have had a higher # but not all that often.

I use a cane when I go out for balance; but also because if someone sees you with a cane they will be more careful around you. I fell once when someone moved a chair into me and could not get up on my own. Needed someone under each arm to lift me; Therefore; the cane is my comfort when going out.

Reading other posts thru the years seems to often reveal there are trade-offs with the SCS including spasms; but many feel it is worth it. But I have also read some encouragements; then hear the same person hopes to be able to have their SCS removed. (By the way, removal is quite unusual once the lead gets screed in it is difficult to remove this type of surgery. Many mixed stores; plus and minus. Many insurance companies require psychological testing because there is much to deal with; battery charging, along with certain limitations; also some have expectations that are very high and are open to disappointment. This just often a preliminary testing.

Once again, in my case, later I had some surgeries which had I had the implant done would not have worked out very well. Also it is a good idea to really have the best idea for your situation where you want you battery placed. I know I have quite a bit of lower spine pain so the thought of a battery pocket in my butt does not sound to good for someone like me. You are wise to get all the info you can get. Again, what the expectations are has a lot to do with whether you are satisfied or not.


Praying you will make the decision that is the right one for you.

Gerry

Last edited by ger715; 01-05-2015 at 11:10 AM.
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-05-2015), Rrae (01-11-2015)
Old 01-05-2015, 06:21 PM #8
EnglishDave's Avatar
EnglishDave EnglishDave is offline
Magnate
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
EnglishDave EnglishDave is offline
Magnate
EnglishDave's Avatar
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
8 yr Member
Cool Smirk

Gerry, NanaZ,
The beauty of this Forum - apart from the connection with people suffering similar problems - is learning of the treatments and drugs available elsewhere in the World which I do not have access to at present.
However, in this case, I am saddened by the trauma and pain caused by your failed SCS trials. It seems that their use is governed by a sales-driven market rather than a results/relief driven one.
Gerry's experience especially has opened my eyes as we have some similarity of areas of damage, and I know now that - should SCS become available over here - I would be an unsuitable candidate for many reasons.
I trust your Pain Consultants find a balanced regimen of meds that give you some quality of life back.

Dave.
EnglishDave is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-10-2015), ger715 (01-05-2015), Rrae (01-11-2015)
Old 01-05-2015, 11:47 PM #9
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
nanaz nanaz is offline
Junior Member
 
Join Date: Dec 2014
Location: Central PA
Posts: 14
8 yr Member
Default

Blessings to each of you for your wonderful words, your straight up truths of your experiences!

Today was a grand 're-progamming' with a different rep. I met him during the scs education meeting, months ago.

Hubby asked a lot of questions. His responses were NOT based on sales. Not once did he lean an answer in that direction. Rather, he was very informative, and it just felt like his heart was in it...if that makes sense. On the way home, I asked Richard (my hubby) what he thought. He said this rep had good eye contact when speaking with us and Richard got the feeling he didn't seem to have anything to 'hide' so to speak. There's just something off about the other one. But they all work as a team so I may or may not have either of them again. It all depends on their schedule and which hospital the other is at.

After tomorrow, I see the PM Dr to go over my results. If its a move forward decision, I will be scheduled a consult with a neurosurgeon then be given a date for the surgery. It will be 2-4 weeks til I see the neurosurgeon and another 2-4 weeks after this appt. when a date will be scheduled. So I have plenty of time to research. Which is something I need to do.

In honesty, I found this forum during a search. This forum name and part of Mark56's post was in that search. I read over half his story in one night and finished the next day. So that is how I found my way here!

Yes, they gave us an Educational class on the SCS. If it weren't for reading here before my trial, I would have been sunk in the mud for sure this past week!

So, I got reprogrammed today, plus one setting added just for my back. I found out the lead floats in this space and is only held in place by one stitch. Of course, its going to move in this space and it actually moves downward. So he reset the leads and I had a full afternoon of being pain free. I was active from 3 til 9 as my grandson is sleeping over. I managed until 8 before my pain increased enough that I knew I had to sit. So I listened to my body, turned up the stem and took my first dose of medication today. I can either stim my back or legs. So doing one the other was throbbing. Meds and stim shut them both down!

I also learned nerves to the leg (from the spine) are way bigger than nerves for the back; therefore, its easier to get stim on the legs. The back nerves take a bit more tweeking due to their smaller size.

Basically, out of 7 days I had 3 good and 4 miserable. My calf pain was gone by lunchtime. It was due to most all the stim being at the lower end of the lead. I don't ever want to go through another day of any of these 4 miserable ones with this stim. This pain is enough then add that on.....well, I was closest I've ever been to the edge.

I get this removed tomorrow at 10a.m., then home for a much needed shower!!!!

Have our grandson tomorrow night. By Wednesday I will be back to learn all I can. Please know, I appreciate your honesty. I'm not afraid of the good, bad and ugly! If there's anymore advice or thoughts, or other places i might learn, please share.

Thank you for allowing me to lean on you this past week and for holding me up. Some may say.....'its just words'......that's OK....to me your words were my everything.
nanaz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-10-2015), ger715 (01-06-2015), PamelaJune (01-09-2015), Rimbanda (01-12-2015), Rrae (01-11-2015)
Old 01-06-2015, 05:09 PM #10
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

Quote:
Originally Posted by nanaz View Post
Blessings to each of you for your wonderful words, your straight up truths of your experiences!

Today was a grand 're-progamming' with a different rep. I met him during the scs education meeting, months ago.

Hubby asked a lot of questions. His responses were NOT based on sales. Not once did he lean an answer in that direction. Rather, he was very informative, and it just felt like his heart was in it...if that makes sense. On the way home, I asked Richard (my hubby) what he thought. He said this rep had good eye contact when speaking with us and Richard got the feeling he didn't seem to have anything to 'hide' so to speak. There's just something off about the other one. But they all work as a team so I may or may not have either of them again. It all depends on their schedule and which hospital the other is at.

After tomorrow, I see the PM Dr to go over my results. If its a move forward decision, I will be scheduled a consult with a neurosurgeon then be given a date for the surgery. It will be 2-4 weeks til I see the neurosurgeon and another 2-4 weeks after this appt. when a date will be scheduled. So I have plenty of time to research. Which is something I need to do.

In honesty, I found this forum during a search. This forum name and part of Mark56's post was in that search. I read over half his story in one night and finished the next day. So that is how I found my way here!

Yes, they gave us an Educational class on the SCS. If it weren't for reading here before my trial, I would have been sunk in the mud for sure this past week!

So, I got reprogrammed today, plus one setting added just for my back. I found out the lead floats in this space and is only held in place by one stitch. Of course, its going to move in this space and it actually moves downward. So he reset the leads and I had a full afternoon of being pain free. I was active from 3 til 9 as my grandson is sleeping over. I managed until 8 before my pain increased enough that I knew I had to sit. So I listened to my body, turned up the stem and took my first dose of medication today. I can either stim my back or legs. So doing one the other was throbbing. Meds and stim shut them both down!

I also learned nerves to the leg (from the spine) are way bigger than nerves for the back; therefore, its easier to get stim on the legs. The back nerves take a bit more tweeking due to their smaller size.

Basically, out of 7 days I had 3 good and 4 miserable. My calf pain was gone by lunchtime. It was due to most all the stim being at the lower end of the lead. I don't ever want to go through another day of any of these 4 miserable ones with this stim. This pain is enough then add that on.....well, I was closest I've ever been to the edge.

I get this removed tomorrow at 10a.m., then home for a much needed shower!!!!

Have our grandson tomorrow night. By Wednesday I will be back to learn all I can. Please know, I appreciate your honesty. I'm not afraid of the good, bad and ugly! If there's anymore advice or thoughts, or other places i might learn, please share.

Thank you for allowing me to lean on you this past week and for holding me up. Some may say.....'its just words'......that's OK....to me your words were my everything.

Nanaz,

I think you are very wise to take the route you are on. You sincerely want to know good/bad/plus and minus', not just what you want to hear.

Also, your experience of the bad days was a good eye opener, knowing there might be possibly some days that the stim is not doing as good as it may have done the day before. You seem to be aware there might not be positive only days, but the chance of days with pain. Having meds as a stand-by/break thru is good just in case there may be those days when they may be needed.

I feel you accomplished the expectations test and are doing "great" accepting expectations realistically.

A good rep will not only want a sale; but care enough whether a patient has issues that would NOT make them a good candidate which instead would give them a life of added pain. That is cruel and heartless. I originally thought I had that kind of rep; but was wrong. The same is true with a surgeon being up front with a patient giving them the plus; as well as the minus' and what their chances are for successful surgery.

You have and are still doing your homework. Keep up the good work.

Please keep us informed as to how and what is being done, as well as outcome.

Wishing you all the best.


Gerry

Last edited by ger715; 01-06-2015 at 06:47 PM.
ger715 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eva5667faliure (01-10-2015), PamelaJune (01-07-2015), Rrae (01-11-2015)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Looking for Post Concussion Syndrome Health advice/Medication assistance PCS+MDD Traumatic Brain Injury and Post Concussion Syndrome 4 12-26-2014 04:23 AM
medical assistance kim1101 Social Security Disability 2 01-02-2013 02:14 PM
Hello, hoping for some advice/assistance MeInPain New Member Introductions 1 07-23-2012 05:07 PM
Assistance Encouraged Movement Disorders 0 01-26-2012 07:29 PM
Looking for home - assistance with TBI Joe M Social Chat 1 06-02-2009 11:37 PM


All times are GMT -5. The time now is 08:53 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.