Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-18-2010, 06:42 PM #11
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Default 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 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.
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Old 01-18-2010, 08:12 PM #12
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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 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.
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
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Old 01-18-2010, 08:45 PM #13
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Default 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!

You've made my day.....Now i'm gonna head off to la la land
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Old 01-18-2010, 10:34 PM #14
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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!

You've made my day.....Now i'm gonna head off to la la land
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
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Old 01-18-2010, 11:19 PM #15
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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
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Old 01-19-2010, 09:23 AM #16
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Rae...

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

KS

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!

Vanna
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Old 01-19-2010, 12:20 PM #17
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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
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Old 01-19-2010, 09:31 PM #18
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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!
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Old 01-19-2010, 10:54 PM #19
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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
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Old 01-20-2010, 01:32 PM #20
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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.
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