SCS Trial Scheduled!
 

So my SCS trial is scheduled for 3 weeks from today- Nov. 27th!

Anxious/Excited...

Can you guys share your experiences of what to expect for the actual trial procedure? I talked to my doc about it of course, but first-hand accounts are so much more telling about what to really expect.

Thanks!!!

~Colleen :grouphug:

Yay!!! That's awesome!!


My trial was really easy. They put me out to insert the lead and woke me up to make sure I could feel the stimulation, and then put me back under to finish up.

I woke up in recovery and they turned it on. It was instant, and I mean instant relief. I had 5 or 6 programs. They gave me a book to mark my pain level, activity level, and whether I could do more, take less meds, etc.

I had 60-75% relief during my trial. My back was sore the first day, but it wore off quickly. I was able to keep up with my kids for the first time in a year. I was sad to take it out.

I got mine for crps/rsd in my right foot following a peroneal tendon tear/surgery in January 2011. Unfortunately, it mirrored to the left leg (foot only) but went all the way to right hip. It also spread to my right hand due to a bad IV in March 2012. Luckily it's med controlled for now :D

Anyway, I have a St. Jude eon. My rep said crps patients are love or hate. There's not usually a middle ground.

I love mine, even through my complications, and I am doing things that I was unable to do before.

Hope this helps!!

TK

Nearly identical
 

My story is nearly identical to TK.
Went in, went to sleep, vaguely remember being woken as they did the placement, snoozed again, wake up in recovery, dude turns it on...programs it and I walk out PAIN FREE - first time in ..... wow, I have no idea how long.

That afternoon I took a L O N G walk (for me) down to the far end of our block (we're very close to one end) and back. It was 102 degrees and I DIDN'T CARE because I could walk, at a good clip, and not be in debilitating pain.

Tested it extensively over the next 7 days, was very sad to have it out (like TK) but exactly 2 weeks later, to the day, I got the implant.

Having had muscle stim many times over the years I am very familiar with the sensation this gives - I find it extremely soothing (especially since the alternative is NOT soothing! :D) although some folks do not like it.

I did have about 5 of the 7 days dealing with pretty bad back spasms in the low-back (entry site) and hoped/prayed this would NOT be the case with the implant. It isn't - not at all. I think it's because there's something there, protruding from the skin and thru the muscles and such. That part wasn't too fun but it wasn't intolerable, at all.

I used this time to start getting used to the restrictions AND to better anticipate what I'd need for post-implant I recommend you do the same.

Hope it goes as well for you as it has for TK and me! I'm enjoying near 100% relief most of the time, down to around 70% on real bad days - overall I call it about 80% - 85% success. "They" call anything over 60% success so - I'm good to go! Only need to charge the unit about 1x/week (it comes out to like 10 or 11 days but I just do it each weekend so I don't have to think about it during the week).

VERY happy with this implant!

*tips his hat*

Easy Peasy
 

Well Colleen.....I too didnt have any bad experience with the trial....

I was in overnight. Was awake for the procedure, well sedated, but enough to block out what was happening but yet to be 'awake' to let my Consultant know where I was feeling the stimulation.

Then when I was back in the ward the Rep came and went through all the programmes with me. I had 3 programmes. Found it of great benefit immediately. I only had the trial for about 3 days, if my memory serves me well, well it was over two and a half years ago now:eek:where does the time go!!! but I knew straight away that this was going to work... :)

I know everyone has a different experience and their level of pain management is different but as the others have said they too didnt have a bad experience. I trust and pray that yours will be the same AND that you will get great benefit from it too.......

Take care and look after yourself :hug:

Jackie :)

Congrats on the trial date being set!!

I'm excited for you! By now, I'm sure you've gathered that the support here is fantastic :D You won't be alone as you go thru this, that's fer sure.

How many days will you be on the trial? Seems everybody's have a little bit of variation, as each Dr likes to do these things a little bit different.
The jist of it is mainly the same tho, as you've seen thus far in your responses.

If you have utmost confidence in your Dr and have a good relationship with him/her, then you've pretty much got it made in the shade

Rae
:grouphug:

Here's a copy/paste from what I posted on Ashley's thread since she asked the same question.....:o....Call me lazy, which I'll certainly admit to! :D

Good communication is KEY to a successful trial. You will need to know what he will be doing to you while on the operating table, so that you can do your part in accurately describing where you are feeling the stimulation, or if you are 'not' feeling the stimulation where it should be. It's a 3-way teamwork when the moment comes for the Rep to turn on the unit, but it's you who will call the shot because only you can feel the stim.

Normally, when you get in the OR, the anesthesiologist will put you in what is called a 'twilight daze', meaning you are not all the way out of it. Rather, you'll be sedated just enough to be able to comfortably withstand the procedure, yet awake enough to be able to know what's happening and able to communicate to the OR team, and the Rep from the manufacterer of your SCS.

For me, during the procedure, there were a few times when it became uncomfortable as the local anesthesia seemed to wear down and I could feel the needle and/or the incision. All I had to do was mumble 'ouuuch' and he'd shoot me with more local to better numb the area. They are usually pretty good in keeping the patient comfortable. Again tho, this is why it's crucial to have good communication.


When you first go home from the procedure you may feel a bit overwhelmed because of the procedure itself and trying to decifer the surgical pain vs your original pain condition. Completely normal. Allow your body to be 'mad' at first, concentrate on laying on ice and rest the first day or so. In no time tho, you'll be up for tinkering with the controls and doing things around the house to get an idea of how you will fare with this. By day 3, I was completely in LOVE with the whole thing and thrilled once it became apparent that the stimulation was covering over my RSD/neuropathy pain.

Hope this helps somewhat :rolleyes:

Rae
:hug:
http://neurotalk.psychcentral.com/im..._invisible.gif http://neurotalk.psychcentral.com/im...ons/report.gif

Hi Rae...and all my other SCS friends!
 

Hi Rae!

First, thank you for your reply (and thanks to everyone else, as well :grouphug: , the more I hear from others who have been through this, the better I'm feeling about it- it's more helpful than I can express! :D )

As for my upcoming trial: it will last for 7 days (I already have an appt for a week after to have it removed- btw, no one has mentioned how that part goes... It sounds painful, but I don't believe I'm being sedated or anything for it... This scares me. Can you guys share how the temporary SCS removal process went for you?)

Anyway, I am very excited for the trial! I'm just concerned about taking care of myself, and my dog, afterwards, as bending is not allowed. Do you know is crouching is okay?

Also, I am definitely NOT 'lightweight' when it comes to anesthesia, so I'm going to have to address that w/them for my procedure... I know this from past blocks, and also my bunionectomy surgery that set off my RSD- I woke up multiple times, and truly believe that it had a hand in causing the RSD... but that's just my theory.

My doc has also rushed through blocks before, and started before my sedation was even given... I'm hoping that as this is a much more major procedure, that he'll be more careful with this. But I'll be discussing it with him before, that's for sure!

My big paranoia at this point, like I mentioned already, is the removal... I may call them tomorrow to ask what they plan to do for it... I'm very restless regarding all this, so I don't think I'll be able to wait till my procedure to ask about the removal! Patience is def. not a 'virtue' that I have much of, especially when I'm excited or anxious about something. :eek:

Also, when you talk about being partially put under, does this include more than just the minimal sedation used for LSB (blocks) used to minimize anxiety/etc.? Because that's what I keep picturing and it's def. minimal...sounds like not nearly enough to get through this SCS procedure! Have you had both (or similar 'light' sedation in the past)- i.e. are you able to compare the sedation for the two diff kinds of procedures?

That's my other hang-up at the moment, lol...

Thank you so much for your help!

~Colleen :hug:

Yay your trial is all set-up! I'm sure you are hopeful and ready for this step. I know I am for mine. This weekend ill post how mine went. I'm the type of person to "research" things and I youtube SCS and watched a few videos and the all "seemed" like there is nothing to it. But for now all you need to do is get yourself ready!


Ashley:grouphug:

Thanks Ashley!
 

Ashley-

Thanks for your support... It seems I keep seeing more and more similarities between us- I also am the type to research (almost to the point of obsession at times, but I try to keep myself in check). Anyway, I've also watched youtube videos about it, and you're right, it doesn't seem too bad.

I am very excited for you and your upcoming trial! I'm praying for you, and for great success/pain relief! And I must admit, I'm grateful to have someone to hear about so soon before it's 'my turn'. I'm very grateful to you for being willing to share your upcoming experience. Hopefully, we can lean on each other, and if you ever need it, that I can be of support to you throughout your journey, as you have already been of such help to me at the start of mine :)

Thanks again, and best of luck to you on your trial- I look forward to hearing how you're doing this weekend. I'll be praying for you! (as I'm sure many others will be also).

~Colleen :grouphug:

Hi Colleen
Good luck with your up coming trial.. Mine was a year ago last May. My trial started on Mon. and was out Friday. Removal was the easiest part. I was standing and leaning on the exam table. My Dr. came in to discuss the results. His nurse came in and said here goes, with a slight pull the temporary lead was pulled down and out. Absolutely no pain. Hardly new he had it out. It kind of reminded me of the Berlin of dental floss pulled through your teeth. You just feel it as the last bit comes out.

My trial implant was done as an out patient procedure. In about 6am and home for lunch.
The sedation is light. My pain is due to abdominal pain from sphincter of odi disfunction.(pancreas). My pain is very specific in my upper gastric area but it is intermittent. Both the Dr. and rep were challenged to get the stimulation to such a small specific area. Make sure you pay close attention to where you feel the stimulation so that it covers the entire area you need. Do be afraid to tell them its not right. My Dr. said to try and do as many things that you normally do so that you can feel the stim during different movements.

I too have 2 labs who require lots of attention. I got to be pretty good at doing squats to get down low. Make sure to have a grabber for reaching things above your shoulders and down on the ground after implant. Things will always be out of reach. Before your implant go through your house and bring things to counter level that you use frequently. Remember no reaching above your shoulders, no bending, no stretching, no lifting above 8#, no twisting.
Its so easy to forget when the pain eases after about three weeks to try and reach or twist or bend. Many have used a back binder that their dr. gave them for extra support.

My doctor was very cautious about infection and waited two months between trial and implant. He didn't allow ice for relief of pain because he didn't want any moisture near the incisions. I found sweat pants and yoga pants to be very comfortable while healing. Good Luck.

Sandy Kay

Having my trial lead taken out was no big deal at all Colleen.

Basically my Dr was chatting away taking off the bandages etc and next thing I knew he said 'ok all done'. I felt a slight tug but that was it!!! Honestly nothing to worry about.

The only downside for me was then waiting for the permanent implant to be done. That took 4 months. But that's cos my Dr was on holiday etc.

So don't be stressing out about it. Just try to relax and hopefully all will be well and we will be cheering you on for the permanent implant ;)

Jackie:hug:

Hesitate....
 

Andy...
 

Andy-

How awful! I'm so sorry this happened to you! I had a similar experience with my bunionectomy foot surgery in which I kept waking up and was in extreme pain (in my heart of hearts, I believe that this is what led to my RSD, but that's beside the point).

Anyway, I appreciate you sharing your story, as I will definitely be extra cautious w/my doc to make sure that my anesthesia is performed correctly. (I'm told that it will be general anesthesia for the implant, so that's def what I expect from them!).

Again, I'm sorry this happened to you, but I appreciate your sharing... as to save myself and others from the same fate. I am very grateful to you for doing so. :hug:

~Colleen

Bad but good
 

One thing that happened to me that was horrible at the time, but has been great since is an almost fatal anesthesia complication.

On February 3, 2012, I was implanted with a loop recorder due to syncopal spells. These were later attributed to RSD so it was a needless surgery, but it was a 15 minute under the skin monitor that they give you twilight anesthesia so you're awake but not. Well I had a laryngospasm and almost died. I was completely put under and entubated. For an under the skin monitor placement.

It was really scary, but it caused them to be super diligent with anesthesia from that point on. I'm sure when it's time for battery replacement they'll do general just because of the complications. Or at least be careful. So that helped. I'd rather be out completely than remember anything, but that's because the two times I haven't had general, I had a laryngospasm. I don't know what drug they use, but my body does not like it!

I'm sure everything will be fine!!

TK

Lead removal....
 

.....was very quick and I didn't feel a thing. Like Jackie said, my doc was chatting to me and I had no idea he had taken the leads out while yacking! :p

Like others mention, the REAL difficult part was waiting to get the permanent. It was so wonderful to get the temporary pain relief from the trial, but once the leads were taken out, pain may come back with a vengeance. Hopefully you won't have a very long interim before getting your permanent.

Sorry to hear about the bunionectomy causing the RSD.....I've got bunions developing and I actually wondered if that would happen if I eventually had surgery to correct my feet!

Rae...
 

If I could go back in time, I would NEVER have had the bunion surgery... obviously, had I known that RSD would be the result, I'd have stayed far away, so be very careful with that decision if you come to it!

As for waiting... I just found out that I may have to wait until Feb. (the month my ins runs out) to get my permanent- depending on "facility approval". If I go to one facility, I'll be able to get it as soon as it's ins approved; if the other, I'll have to wait till Feb and get it right before my insurance runs out... which means post op care will be, er, non existent? It will not be good, let's just put it that way.

Luckily, I'm under my dad's great ins. till then, and I'm hoping that means that I'll be able to go to the other facility (that I'll be able to get into right away), but I'm gonna have to wait till that time comes to find out for sure- although I'll be calling people tomorrow to find out if I can get some info before than... because it's gonna eat me alive w/worry if I can't at least get an educated guess as to what's going to happen... I'm already going a bit nuts not knowing. (the girl in the office who would know the best was gone by the time I was told this info today). I'm just hoping she'll be able to tell me based on my ins. which facility I'm likely to get 'approved' for, and thus what my time-frame will look like... Boy, I did not expect this! Fingers-crossed I can get in the "good" facility! :confused:

Colleen :grouphug:

I do hope you get the facility you want Colleen........

Im sure you are up the walls with worry and its not easy waiting to find out either. Im not a patient patient ;).....I want answers NOW!!!!

Ooooooh interesting what you say about your bunions....unfortunately Im one of those people who have bunions:mad:due to wearing orthopaedic shoes as a child as I was born with one leg shorter than the other:rolleyes:( I did ask my Consultant if that was why I had such a bad back...his reply 'well not all people who live on a mountain suffer with their backs'):p hmmmmmmm sarcasm eh!!!

Anyway I was comtemplating having my bunions done...but NOW oh Im not so sure if you say that this is the reason for your RSD....well wouldnt it be just my luck to have that on top of everything else! no thank you.......decision made I think. I will just have to put up with my ugly feet :D and boy are they U G L Y :wink:


Here's hoping you find out soon Colleen where you are going and I hope it really is the one you want:hug:

Hope you all have a fabulous weekend

Jackie :grouphug:

Going up the walls, indeed!!!
 

Jackie-

Right you are!

I am going nuts trying to figure out which facility I'll be (hopefully) eventually getting my perm implant at. I"ve been calling the one person at the office who apparently "may know" all day, to no avail, to try and find out what exactly determines which facility the perm procedure is done at. (because I was told that technically it isn't even necessarily insurance that determines it... It's very strange.). But I'm praying that I can get in at the surgery center, versus the hospital, because I really don't want to have the perm implant a week before my insurance runs out... I don't even know how that would work... (if at all). Otherwise, it's going to come down to begging my doc (at my temp placement) to squeeze me in early, because I really need those last few months that I have left of ins. for post op "stuff".... from check ups to any reprogramming that may need to be done, etc...

and I'm so not-patient, it's just driving me CRAZY not knowing! Waiting for the trial is bad enough, but waiting on the unknown is even worse!

But I'm rambling...

Anyway, thanks for your response, it helps to know I'm not alone! :hug:

Colleen

p.s. Jackie...bunions
 

Jackie, I almost forgot-

regarding the bunions...

I'm telling you, not only did it cause the RSD, but it was an INCREDIBLY painful surgery! I'm talking, couldn't get out of my dad's recliner for days (I stayed there for a good week afterwards, this was pre-puppy). He would have to bring me EVERYTHING, as getting up (and lowering that foot) was so painful. I would even avoid going to the bathroom all day until I thought my bladder was going to explode, because that was such a painful experience.

Now, of course that was all temporary, but it was the cause of my RSD, so my other foot is not getting done... and I'd strongly caution you before you decide to get the surgery... I'd never do it again, but that's just me. Ugly feet are great! Nothing wrong with ugly feet, this I promise you!!! :D

~Colleen :hug:

Confusing
 

Im a bit confused (it doesnt take much :D;)) when you say that you are not sure which facility you will be going to. I THINK what you mean is that your insurance will decide where they will pay to have it done....yes???

Here we elect our Doctor and then he tells us where he will do the procedure. Then we ask the insurance if they cover that particular hospital and Dr. Is that similiar? As regards your insurance running out, will you not renew it? Sorry dont want to pry:eek:....its just that way it would just run into the new one and you would have no worry about where you can have the implant done nor how long it would take.

Some of the procedures in the US are so different to here in Ireland so I can get quite confused :D DUHHHHHH!!!:rolleyes:

Ugly Feet....
 

Me too ugly feet :o
I've been wearing this contraption on my feet at night. It's supposed to help with bunions and hammer toes. You strap it on and it spreads the big toe out, which supposedly can help the bunion. Then, during the day I wear these gel toe spreaders between my big toes.
Not sure if it's helping, but we'll see.

Colleen, I sure hope you don't have to wait that long! Regarding switching insurances, I get concerned re: pre-existing condition clauses that alot of the companies carry. When my job fizzles out, I won't have my current insurance and i wonder what will happen when I need my battery changed out if I have a different insurance carrier.

BEG and PLEAD with your Dr if there is anything he can do to get you in faster. Heck, I sure ain't against begging :p

Thank you so much for explaining the bunion surgery. I had no idea it was that intense, but now I recall my step-mom having it done and she was NOT in a good way! Also, I heard you have to be on crutches for 5 weeks (?)

Well, anyway, I'll sure be praying about your upcoming surgery!
You can count on that!

Rae
:grouphug:

Jackie- I'll try to clarify...
 

Jackie- you have good questions, and I'll try to clear things up for you.

First, as far as facility, it's a bit different for me too. This is the first time this I've had to deal with an issue like this... But the procedure can be done either at their bigger health center (where they have a doc office on one half and a surgery center on the other- the surgery center often used for Lumbar Sympathetic Nerve Block, and other procedures). So it CAN be done there, but because it's a more serious procedure, I guess some insurances require it to be done at the actual hospital. I don't know which is more expensive, or if that even factors in (although I can't imagine it doesn't), but it sounds to me like it's just up to if insurance is willing to allow procedure to be done at surgical center vs at the hospital.

And Rae- you're absolutely right, and I appreciate your support, I will be "begging and pleading" when I see my doc (the day of my trial) to ensure I get in early, if I do indeed end up having to go to the hospital.

As for my insurance, the problem is that I'm 25 and will turn 26 in Feb, and thus my insurance will expire at the end of that month that I turn 26. (as it's my dad's ins.) And since I can't work, I can't get any other ins, at least until my Social Security comes through, if it does (I'm currently in the long process of applying), but even then, it will be like 2 years before ins goes into effect.

I'm hoping that the SCS will allow me to get back to school, finish up, and get a job in nursing, then I will be able to get ins again and according to new ins laws, they can't discriminate against ppl for pre-existing conditions (or they won't be able to, when the laws go into effect- thank goodness for the RSD and SCS community!)

I'm just still so nervous about all of this... feeling incredibly restless and not sleeping well. I don't do well with the unknown and am a huge 'worrywort' (even on anti-anxiety medication!). But we're just over two weeks away now... I can do it, I can make it... I think. lol... :o

Thanks for all your continuing support and prayers everyone! It means so much to me, and I couldn't get through this time without it!!! :grouphug:


~Colleen

out of pocket expense with no insurance
 

Hi Colleen,
I just wanted to say a few things about not having insurance because being a cash payer you may be paying the highest price for all follow ups needed and meds...the new laws on pre existing don't go into effect till 2014.
This is my experience and please keep in mind I live in S E Florida ---the pill mill capital of the USA.
My injury was from a motor vehicle accident and my medical care was under a letter of protection (LOP). After 3 years my case settled and all cost associated were negotiated down and paid off. I have not yet found an insurance that will take me...working on it....the ortho center that my surgeon was with will only see me if I pay $300. My surgeon is in a new office...I see him this Thursday..cost is $250 plus $50 per xray...I hope he will write me for my meds.

I see a doctor for my social security evaluations (up to 2 years away)...$125 first visit...$75. every visit after that...they do not write scripts..they did however refer me to a legit doctor who would register me as a "pain management patient"..evaluation is $125...if they decide to take me ..first visit is $200 and every visit after that is $180...they will only write a script for 30 days...so the perscription for the first 30 days of meds would cost me $325 and then another $50 at the drug store.$180 plus refill there after.
REALLY....I can get them cheaper on the street!!! (no I don't)

There was a debate for me also on hospital or surgery center tho it was based on the surgery center carrying the expense of the SCS & battery until the settlement of my case.
Just wanted to give you my perspective ...I sugest getting that surgery post haste so you have the advantage of insurance as long as possible.
Standing in the Light
Johanna^

Omigosh
 

I am off a week because I was Just Too Tired after work.....and all of this has been revealed? Andy..... TK...... Awful, horrible, things happening to you????? Anesthetist messing you over Big Time? I am still cringing from reading the words.......

Colleen, I so pray all goes well not only with your upcoming Trial and More... but that the Social Security situation will be worked out to your favor. I had to have a lawyer of all things to Push my SS through during those years I needed it because I was, and remain, physically disabled..... such a situation being PRECISELY why we pay into that misbegotten scandal ridden congressional piggy bank. Your case I hope will be brought to conclusion in your favor so you may be provided the care you deserve regardless of Dad's insurance.

Now, back to the original question..... removal of the leads after Trial was a snap, over before I wanted it. One moment there, the next NOT. Then we set about with the needful process of cleaning up that very messy infection I had developed..... thing was my insurance did not want to cover the antibiotics because they thought antibiotics surely were not related to an SCS Trial...... idiot insurance adjusters....

Once that was all cleared up, we got on to the process of implanting my permanent SCS. I am SO glad I received it.:D Oh yeah!:D

Prayin for ya,
Mark56:)

2 weeks!!!
 

oops
 

Correction: I can't *believe that one third of the time has gone by already (not "I can't wait) oops...

Awww
 

We know what you meant.....

Two weeks and counting,
and prayin all will be fantastic,
and well,
Mark56:hug::grouphug::)

Exciting times ahead
 

Colleen definitely exciting times ahead. Two weeks will just fly by :cool:

Oh and well done getting your shower chair assembled :D an achievement in itself. See you CAN do anything once you put your mind to it

Jackie :hug:

Heck,
 

There's alot that can be accomplished in a 2-week timeframe while you wait for your appt - between the bunch of us, we'll keep you occupied!
We're known to throw the best cyber-parties for one thing :D

Yes, the time WILL pass. It will, and you'll be buzzing right along, hopefully scheduling your permanent appt, which will usher in wondrous pain management for you, so you can enjoy the things you once did again.

Hoot! Hoot!

Rae
:grouphug:

Facility!
 

Hey everybody!

I put this info in it's own thread, but I just wanna say it here too, since we've talked about it and you've all been so supportive, I want to make sure you guys see it- I have an answer regarding which facility my permanent SCS will be implanted at: Hospital (w/wait till feb, when my ins runs out) vs surgery center (w/no wait)...

It's gonna be at the Surgery Center!! So the only wait will be based on how long my ins takes to approve the procedure. The insurance pre-auth lady at my doc's office whom I spoke with today said I could potentially get in by the end of the year! (assuming all goes well with the trial on the 27th, of course).

I'm so excited! And just want to thank you guys for all of your encouragement and support on this issue... I know I've been very dramatic about it, but it was eating me alive! Thank you all so much!

~Colleen :grouphug:

You've been no more dramatic about this than the rest of us, my dear! This IS a very dramatic decision that we've all come to make and much has been at stake, yes?

I have great feeling about this for you!
It's wonderful that this heavy weight has been lifted!
Now, you can start concentrating on what yer gonna do with the rest of your life with your new and wonderful pain management! :hug:

Rae

Also Having Trial Soon
 

I will also be having my SCS trial in a couple of weeks on Nob. 30. Unfortunately, I was supposed to already have had twice in the past month or so but it was first postponed because of insurance not clear on psych evaluation procedures. Then I was supposed to have it this past Thursday but the center had a surprise Medicare audit that day and they didn't feel they would be able to give me the appropriate time and attention. They could not have been more apologetic or sympathetic so although it was emotionally stressful because both times were cancelled at the last minute they have gone above and beyond to try and make it up to me. So, I will be having my 7-day Medtronic trial on Friday, November 30th (they reassured me it will definitely happen) for RSD pain in my right ankle. I have been told I will be sedated and the doctor has explained what he will do. Reading the comments I hadn't thought of getting a grabber to help with unexpected items but will definitely check that out. I've now how two trial runs for prepping and I come up with more things to do each time to help. Wishing you great success with your trial, Colleen!

LagunaErica-
 

Welcome LagunaErica!

Thank you for the well-wishes! Best of luck to you in your trial as well!

I'm also getting a Medtronic unit for my trial, and if that goes well, I will be getting a Medtronic Adaptive Stim RestoreSensor SCS implant. Once programmed correctly, I'm told it's great..."Set it, and forget it" is what I keep hearing, which sounds like a great lil concept. :)

I'm also getting it for RSD pain... in my L foot that has spread up my left leg and over to my right leg, and also back pain do to bulging disc L4-L5. So I understand the devil that is RSD, as do most people here (as you've probably found, this is a subforum from an RSD/CRPS forum).

Anyway, again, good luck to you in your upcoming trial. I (and I'm sure many others here in our loving community of fellow SCS'rs) will keep you in my prayers. :grouphug:

~Colleen :)

Hello LagunaErica!
 

Welcome Aboard! :hug:

So glad they finally landed you a date for your trial!
You'll get lots of caring feedback here and we'll be anxious to hear how this goes for you, so please keep us posted!

It's great to have you!

Rae
:grouphug:

Chronic Pancreatitis and decisions
 

Hi Everyone,

I just joined the forum and I have been reading the various posts by everyone.
I think that my case might be very similar to that of Sandy Kay.
I live in the greater Los Angeles area and have suffered from chronic pancreatitis since my gall bladder went bad and was removed in 2004,
I suffer from Chronic Pancreatitis, Sphincter of Oddi and Crohn's disease.

My digestive system is a train wreck.

Surgeries, and Procedures, only give me relief for so long. I have relied on pain medication to manage my pain.

Due to the aforementioned, I have been on a feeding tube since March 18, 2013 when they shut my pancreas and stomach down.

The docs were hoping that within 6 months I would be able to eat again with no pain; however, that was not the case. I have lost 60 pounds (which I did not need to lose - I could have lost 10 to 15 and been fine) and I have no energy or any quality of life since being on the feeding tube.

At this point, my doctor referred me to a colleague of his who is a pancreatic surgeon who is trying to think outside the box and he referred me to the pain management group.

The pancreatic surgeon told me about a pain pump, so I did a lot of research about them and found many articles that discussed it's use for the treatment of pain associated with chronic pancreatitis. However, when I visited the pain management center, the physician brought up the use of a spinal cord stimulator in addition to the use of a pain pump. He seemed to be in favor of the SCS hence I started doing research about their use in the treatment of pain assoiciated with CP.

I have not had much success finding many articles about this treatment of pain from CP.

Then I ran across the NEUROTALK site and the posts of Sandy Kay.

I would like to learn more from everyone and also speak or email with Sandy Kay about her experiences as they seem very similar to my own.

I am scheduled for the first epidural relating to CP in the next few weeks to see if I will recieve any relief.

Thanks for listening and I will be attentive to this site.

Regards,

Richard

Hi Richard!
 

Hi RRAE

Thank you for the great response.

I really appreciate the time you took to compose it and provide me with a list of links to search.

i wil do the research tomorrow and if I have any questions, I will ask them. I am sure there will be many questions.

Thanks again.

Richard