Spinal cord Stimulator...Bobber look!!
 

First I must aplogize to Bobber..as my PM was deleted by mistake by MOI.... but since I have your attention here I must address my SCS unit and my results..I think that is what you were asking....Yes, I did have my unit, SCS put in 9/08. After much anticipation and waiting for the smaller size unit to be manufactured.. Unfortunately, I can not use it as my RSD gets really angry when it is on...Possible spread having it put in?? Possibly as I now have had alot of spread..My trial went well but I now wished I had a longer period of time between the post op. pain of putting the trial in and my permenant unit..I don't not regret having it in and that baby is staying..it lives in my left buttox area and leads up my spine , internally to between my shoulder blades.. no slippage to my knowledge..and it is wired for my other leg too..so I hope one day I can use it for my "good" leg as the RSD is there now too.... I sure I helped you but plz.. yourself or anyone..let me know how I can help you with your thoughts of a SCS....Keep in mind everyone is different so my story may not at all be what you may experience..as you may have good results..that I wish I had the answer to but as we know RSD is nasty....

Take care,...KS:):):):):):):):)

Thank you KS
One dr recently last week,wants to install A SCS unit on me,I mentioned the posssiblity of a spread,He was all Pro for it and no cons,,I also mentionedthe possibility of identifying whether I was in SIP,or SMP,,would mke a difference, and he stated that in medicine now days with RSD patients,they didnt no longer go by that,,Its everyone is in the same group idea,,which after listening to the people on this forum and their insight and others who had experince with a SCS,I didnt agree with him on that part of his input,,Plus, the success rate was low or nill . Im still open to the idea, but the % rate is low,when you actually talk to other patients who have one. I dont know if a TENS unit is a gage to whether a person is in SMP or SIP,,because that unit helps some,,but it inflamed me,,maybe its because im in RSDII causagia..that is the only corraltion that i can see,,,I really appreciate your insight and replies to you KS and evryone else,,I just dont want to make a vast mistake,,,,any other input on this matter is well appreciated,,,thank you ,,,,,,,Bobber P.S your concern about the installation may have caused the spread,,,,my take on it is any trauma to the body can and will induce spread,,but my opion is leaning more on the unit be turned on,thats causeing the spread....

Hello bobber..

My take as well is the use/vibration of the unit is when my RSD gets really anger at me..I can not wait ti turn it off and usually on days when I do give it the scouts try..I pay that night with aweful pain.... Seems as many things..the SCS were "pushed" or recommended by many physcians as way to go... but I have since heard, since mine was installed that the direction of poush is no longer the SCS but more the Ketamnie... maybe it's me but it seems to be more of the popular choice..almost a higher level in pain intervention....

Have a wonderful nite and again..Let me know if I can help answer more questions...:)

KS

Hi Bobber,
My personal opinion is: it's important before any procedure to be as relaxed as possible. I've seen questionairres on this board that have asked, before our surgery-injury-etc were we stressed about something? I know in my case I was. Some Drs. will not do a surgical procedure if we are in an emotional mess of some kind. Even at the dentist-my dentist did some research and gives me antibiocs the day of procedure. Also I take the nitrous oxide mask to relax me. It makes sense to me. Even before major surgery, my Dr. asked me if I would like valium or something to relax. I wasn't nervous so didn't take it. But now I do.
I got RSD right after breast biopsy and was going thru a terrible death of a friend and caring for them.
I know you don't take much meds, but my dr. gives me lorazepam twice a day. It calms my system down and is just as important as viodin for me.
Do you sleep? I was on ambien cr and it quit working, so my Dr. was doing a 200 person study and put me in the study. It was for fibromyalgia-has been around a long time for bipolar, but pharmaceutical company looking at it for broader use. It helped a lot and I slept 10 hours. I take 300mg. have been taking it 4-5 months. The restorative sleep has caused less pain, so I've gone down from 6 mg of vicodin a day to 4 mg. and from 6 mg of lorazepam to 4 mg. I'm on 2 blood pressure meds and when I loose weight, am sure I can reduce that. A couple of years ago, I asked about going off neuotin, and gradually went off, and have no bad symptoms like before.
He is a neurologist, pharmacologist, and psychiatrist. Wonderful, compassionate man. Just built two clinics and HBOT in each of them. I'm saving for going thru the HBOT-next spring-summer.
I hope any of this might be of help for you. I always enjoy your posts. Your Arizona bud,loretta with soft hugs:grouphug:

Thanks KS
I think your right,,The vibration from the TENS unit aggravated mine,,not right away but a few hrs later after i had turned it off,,,so i waited until the pain calmed down as well as the flare and fire engine reddness that it produced,the i tryed it the next day and had the same result,,I have found That RSD doesnt like vibration at all,,at least in my case,,your last post triggered a memorey,,When I first felt anything to suggest that I had a serious problem,was I was riding my wifes V-Twin and the vibration on my right heel,went nutsso,,,before that day,,only dorso flexing the ankle[which longated the trapped nerve] would aggarvated it along with a hot bath,makes it sting,,right where the nerve is trapped.......Thats another reason why im leary of the SCS,,but im intriggedwith any idea to manage this disease and to hopefully get a remmission....Bobber

Hi Loretta
If you look at the time lines,When you posted ,,I was posting at the same time answering KS,,,,I want to persoanl thank you for your concern for everyone on this forum, and your wisdom and empathy towards others,,you as well are a treaasure from the Lord,,,As for sleep,i do sleep pretty good, I really need to back off of caffeeine,I think it increases my pain levels,,But i noticed when my liver and gallbladder 2 months ago were inflammed,I was forced[if I wanted to live,,to go cold turkey off everything,[percocet,Xanax] and between being physically ill from the liver and gallbladder ,,I was withdrawing from the meds inwhich make you even sicker,i was bedridden for 4 weeks,,but I also [because of the gallbladder and liver issues] had to eat plain rice,frozen vegtables only,,,,,i was misable,,but i had 2 weeks of no pain at all,,,But now my diet isnt as good and im in pain again,,,Im also more mobile when i can,,what a vicious cycle,,,,,Thank you all for your support,and I do appreciate reading everyones posts,,,,may you have a pain free nite,,,,,bobber

Wez gotz a great family here!!!!... don't we???????? :grouphug:

Goodnite Johnboy

Hi Bobber
 

My name is Rae
I havn't been on here for several days and i feel a bit guilty of that, as i've wanted to be a better support to all the ones here who have given me so much support.
KS, Vanna, Mary, and so many others here - wonderful people!

I'm kinda in the same boat you are in Re: SCS. I did the trial, seemed to do what it's supposed to do and so now I'm in the
"in-between" time of getting the permanent.
I have many questions, doubts, etc same as you are facing. It does so much good to just hear other's testimonies, and take note of what they've been thru and all the good suggestions they pass on.
So, in that regard, it's kinda a 'good' thing that there is this
6 wk (or so) waiting period.
I'll need to read back thru some of your previous posts to see exactly what your battle is, but just know you are most certainly NOT alone.
Feel free to PM me with any Q's and we can compare notes or whatever. The more people we are in touch with, the better.
So, just wanted to make myself available to you and perhaps you will have input that will help me (and others!)

And for the rest of this wonderful 'Walton Family' :You-Rock:
I see the frustrations you are facing and my prayers are with you all......you've been there for me in my greatest times of need. We are in this together.
Truly Caring
Rae
:Heart:

Rae...

What are your reservations concerning moving forward with the permenant SCS unit??? Ask away...

KS

Thanks KS for asking
 

I dunno.....mainly i guess it has more to do with how the docs seem to end up treating the pts. once they get their paycheck for the SCS. I've heard it from other sources that they (pain docs) like to push these SCS's so that they can 'wash their' hands of us and turn us over to the 'Reps'. My nearest rep is 3 hrs away.
The doc who does my SCS is real good at what he does. But i also think he's a bit 'over-confident' and he isn't very good at sitting down with his pts. and really explaining on a level that we can understand and grasp on to. It just leaves us with all these :confused: loose ends.
I'm not stressin too much about it, but like Bobber, just want to hear from as many as possible because this is where the true heart and soul is. The medical professionals certainly are too busy (or whatever) to talk on this level.
:grouphug:

Okay.. okay... I am hearing ya Rae....Let me say first that I hear you and allow me to shed some light on your concerns so you can add some thoughts in your collect pile from ole' KS.... First..plz..plz..be comfortable and dot all the i's with your "neurosugeron" prior to saying yes...ask every question you can of them including how much and what % they think you will benefit from having the SCS implant.... it's a big step you need to be comfortable with it!!! Now my regular RSD/PM physcian referred me to the neurosurgeon, who's only responsibilty was to put the dang thin in..after it is implanted and that Dr. was happy with my post op. condition... I was referred back to my normal RSD/PM Dr. from there forward and my SCS rep's always came to my appt.s to meet with me at the same time as my Dr... I have never traveled to them..they always matched their schedule with mine and were present at my next Dr. appt. As far as the big push away......I believe the SCS push has taken a bit of a turn..as many are chosing alternative pain management routes ie..ketamine.. possibly due to the negative outcome, but some swear by the benefit they receive from their SCS.... possible spread from the SCS implantation surgery ??? yes.. it's possible... I have had spread AND my unit is not getting along with my RSD as the vibration really upsets my pain and it tells me so! So as far as the Dr.'s just saying osta-la-ves-ta after your unit is in..if you are happy with the results..I'd say heck if you are happy with your Dr. tell em so that you want them to continue your treatment..the same goes however..if YOU feel that you don't get straight answers from your Dr. prior to putting the SCS in.. and they don't offer answers you need...then it is time for you to walk, and find another Dr...... my friend! Respectfully said!

KS:hug:

Very well put !! :)
 

WELL SAID and Bobber - did you read that!!

Like I said, we're in this together!

Thank you !! Good Job! .....and to think.....the medical professionals are PAID very WELL to NOT say all that! :o

You've made my day.....Now i'm gonna head off to la la land :Zzzz:

Rrae... and Bobber..

I am very happy to have helped you... let me know if there is more I can do..and.. I wish you a very restful nights sleep!!

Ole' KS:grouphug:

Rrae
I appreciate the input that you and KS are exibitating. I havent had even a trial SCS put in yet, My concern is That it may cause a spread for 2 reasons forwhich may be no concerns at all to some,but they are to me,The 1st is that a TENS unit caused a major flare and spread both times that i used it at one increments,,and the 2nd reason is im in RSDII{causalgia], which im pretty sure that im in SIP and not in SMP , which from other testimonies here and from my own observation, any vibrations even from riding my motorcycle [the footpeg on the affected heel] causes a major flare and sends electical shocks and tingling and stinging in the heel into the foot and causeing a flare to occur anywhere from 2 hours to 10 days..So my concern and fear is that the SCS [may] spread the disease instead of masking the impulse to the brain to calm it down,,Ive always have been a weird duck when it comes to medical problems,,ussually when i break something,,I really break it,,,,,you all are the bomb,and my discernment does not fail me to see that you all are for real and sincere,,I wish you both a remmission along with the rest of this forum members,,we do need each other,,I can honestly concur to this,,my humility from this disease and from the Lord, has me to my knees,,the clock tic's on and RSd waits for no one,,some of the people here are blessed enough to have it somewhat under control,,mine is still spreading when no insurance and God as my advocate,,My ortho Dr is wanting to get rid of me,his staff is rude and callous,,exspecially knowing that my insurance bellied up,,makes it look like a deadbeat,,I wish that they would walk ten feet in my shoes to feel my pain,,my pain is so great at times in so many places at one time,most people or if his staff was plaqued with it would be trying to be admitted into a hospital,,and they love to point the finger,like,,I saw him at the gym doing theropy,which im in pain and limping on a cain,,that part and riding in a battery cart at the grocery store,,they forget to tell the dr that part,,when someone doesnt like you,,they make the innocent look bad and turn the good into the bad,,they see what they want to see and twist it into a lie,,,but i and God knows my pain and distress,,,,One day,,this will come to an end,,As I wait patiently on the Lord......When you have money,and good insurance to them you are a sick man in need of their assiatance,,but when that runs out,your a healed man,or { I hear them say to me] theres nothing more that I can do for you.......Bobber

Great question for Rae, KS!! Also, Rae, what worked for me in the decision-making process after I did the Trial was ........ did I miss not being able to use it?? For me, obviously, the answer was yes. I craved the sensation the stimulator gave me more than I did pain medication. LOL!

:hug:Vanna

vanna
How long was your trial,,some are 1 week , I hear of others being as long as 1 month,,and how long have you had RSD and is it stage 1 ? How long have you had tha SCS..and is your RSD in 1 limb,lower body,ect,,,how long did you have RSD before trying the SCS and is it still successfull ? and are there any meds that seem to help with the SCS,,Its alot of questions,but As others have said,what is good for one , may not be for another,,but I think by talking to other patients and looking for a corralation in symptoms,severity,ect,,helps to determine . do you know if your in SMP or SIP ? thanks fo the imput,,,,bobber

My ortho suggested it to me. My *ss PM said that it is ".. more trouble than it is worth". But he also says that "I can choose not to be depressed, or not". "... Nothing to do with RSD". Walk a mile each day, walk backwards on a treadmill for 30 minutes. Blah, blah, blah.....I cannot walk, dammit! Walk a mile in my shoes! Let me see your humiliaton when you are in p.t. and can't control your movements. Let me see you cry.

Darn, sorry to rant.... I would do anything to be out of pain for one hour!

No apology needed,,did you happen to read the book that I rantrd out ,its a couple of posts up,,,my dr had the gall to ask if i was bipolar,,,,he has that word mixed up with fed up with pain,and dignity,and tired of being brow beat,and not being heard,,A dr and patient relationship should be a two way street,,not a dictatorship,,,,and your right,,they dont see us crying in pain, trying to do theropy or walking on crutches trying to walk thru the store to get food,,,,,,,,,,,,,,,,your in my prayers 2nite,,,,,,,,,bobber

I think to answer alot of your doctor/patient questions... ask your doctor to speak to patients of his that currently have SCS. My dr is huge on support, and actually makes you talk to a few prior patients of HIS to answer any questions, feelings of fear, doubt, or concern before the surgery takes place so we are 110% 'there' for the implantation. He does not want us going into it doubting him as a surgeon/doctor or us as patients as it is a procedure that takes alot of strength and patience... Also, he had me talk to someone where the SCS did not help, just to prepare me.
After speaking to patients of his, it made the decision easier as I knew how he as a doctor dealt with problems or any issues that arose afterwards. I am thankful, my Dr. smashed those feelings before I even felt them!!! He see's so many patients and knows the change and difference the true understanding of one rsd patient to the next. :)

Hey Bobber!!
 

I had RSD and Brachial Plexopathy (in all 4 limbs) for 2 years prior to me receiving my 2 SCSs. It will be a year soon, and they still help me tremendously with the nerve pain. Initially, they helped more symptoms (muscle fatigue, tremors, burning, numbness) but all of those problems resurfaced after around the 6 month mark. Nonetheless, the stims still provide relief for the "nagging" nerve pain. The only problems I have with them (so far) is the implants cause more of a pressure-type pain in my lower back. Also, I'm hoping it's just my imagination, but both implants may have started t o migrate..... which I hope is not true because I'd love to keep them in. I don't know what SMP or SIP stands for, and I don't know what stage of RSD that I am technically in (I was never told). The only thing my Pain Management doctor told me was that I have Lumbar RSD (but the worse burning areas for me is top of feet and shins).

As far as how long I will get relief from the SCSs, only time will tell. But as you, and everyone else with this problem knows, even a mere MINUTE's worth of relief is gratefully welcomed ;)

:hug:Vanna

Vanna.. I chuckled to myself when you said even a minutes worth of relief is gratefully welcomed...well I gotz that moment just the other day...What a price to pay but I had a colonscopy and for the 3.5 minutes it took for me to take a nap and come back...that is the first 3.5 minutes I have had in 3 years of my RSD with out exsuciating pain...it was heaven.... give me more of that, mister!!!

KS:D

Vanna
Thank you for your responds.and as you and KS said,,i too value every minute that God gives us painfree,its encourageing and that means alot and im very appreciate,I too have it in both feet and my shins,,my shins look as if someone has polished them and their made of glass,,my vasamotors are in bad shape ,and my r-foot stays colder than the left,both top and bottom,the I in sip means that it is intependent now , and basicly has a mind of its own,and a stimulator will probually cause a spread dut to aggaravation of the nerve where smp is managed good with a stimulator,,I was just hopeing to find someone who is [diffenatly]in sip and got relief from a stimulator....I do hope and pray that your leads have not migrated,,what makes you suspect this? more pain? less effective/ or the anoyance of the unit in your back that you mentioned,,,,,I wish you the best,,,,,,,bobber

Or this one??

I searched for spinal cord stim to find these.