[rsdbadfoot]

HI all I was just wondering if anyone has had pain in the scs site after it was put in. Mine started hurting the day after it was put in and the doc said just wait and it will stop hurting. It was put in for rsd in my L. foot I had had two previous surgeries on my lower back. I told the doctor before he put it in that i had been told that I have alot of scar tissue but he said that that wouldnt be a problem. When they put in the trial one it was very painful after about twenty minutes of more pain than i could stand I told him to stop I couldnt take any more and then he said he couldnt get it thru the scar tissue but he could put it thru the cottle I didnt know what he was talking about and was told that that meant the tail bone. So he put it in that way and it didnt hurt wish he would have done it that way in the first place. The trial never hurt until it was taken out then it hurt and it was a month before the final one was put in and my back was still hurting but he said he would worry about the pain later after the final one was put in.....Well it has never stopped hurting but has gotten alot worse i can barely walk now .. the doctor is a anasteologist boy mispelled bad. well anyway he told me to see another doc what he did didnt cause the any pain to me it is simple he did something wrong and he doesnt want anything to do with it. The scs doesnt seem to work i have it off more than on but it might be helping one percent something that i cant really tell. I have called a few other doctors and they want nothing to do with what another doc has done. One told me that if he takes it out I cant have another one medicare will only pay for one he said and taking it out doesnt guarantee the pain would go away cause it hurt after the trial was removed. I dont know what to do I even had to get a referal just to talk to a neuro surgeon he said the orginal doctor should find me a doctor to see if he could find out what was done wrong but they all stick together so I think I am screwed I will be on crutches shortly I would never have another one put in it was the most painful back surgery that I have had besides having the two previous back surgeries I had my neck fused and it was nothing either compared to getting a scs.... thanks for letting me vent i hope other people have better luck than i did....Alan

[Patti_Christmas]

Sorry to hear about the pain and problems you are having. Since my SCS, I believe I have gotten much, much worse.

If you don't mind me asking, what state are you in? Have you thought about contacting your Medicare office and speaking with your worker to explain what is going on and how things are worse? Have you thought about contacting an attorney to discuss the problems you are having? I hate to say this, as an emergency room visit is so expensive, but have you thought about going to the ER and having them look at things?

Has your doctors talked to you about RSD is how it can "spread"? Mine didn't, and I learned about it after my second SCS implant (first one was awful - batter rotated to where controller couldn't communicate and it was sticking out about 1/2", also my leads were moving), so now not only is it in my right leg from the knee down, but also in my back, arms, neck, shoulders, fingers, etc.

Also, how long ago did you have your surgery? The first thing I would definitely do is call your worker, explain to them what is going on and what the doctor told you. I understand where Medicare (or any other insurance company) would say they only pay for a surgery once, but maybe what they mean is they only pay for a device once. It seems like Medicare (or the doctor) would have no choice but to see what is going on with you now. Maybe the doctor is afraid that you will seek another opinion and it be found out that he "screwed up". Make the call yourself to your worker - questions are free. Good luck to you!

[Rrae]

And Welcome!

Mercy! I am so sorry to be reading that you are going thru this!
How long ago did you have your permanent implant? I'm not familiar with the procedure of going thru the tailbone....hmmmm

Have you been in contact with the Reps from the manufacturer of the SCS?
They are supposed to play a big role in helping to make the SCS a success, as far as programming the electrodes, etc.....

I have much I'd like to share, but I'm on my way out the door for work, but I couldn't leave without answering to your post!
Please stick around......there are many here who will chime in

Your case does sound rather alarming and I agree with Patty on the 'legal advocate' suggestion.....this might be something you might need to check in to...... it is patient NEGLECT to leave a patient incapacitated.

One of our members here (Mark56) has attorney experience and can perhaps walk you through a few initial suggestions....

We are caring crew here, so please stick around and if we all put our heads together, I'm sure we can give you some pretty good support.

I'll check back later today Alan
Hang in there, k

Truly Caring
Rae

[Mark56]

I understand if you are dealing with Medicare, first things first, resources are probably limited to you. So we have to be conscientious about that issue.

It seems extraordinary to me that an anesthesiologist would be implanting anything, I have had neurosurgeon and orthopedic surgeons in my back. Would not welcome an anesthesiologist to do anything other than keep me sedated.

If you are able, can you be seen by a spine specialist to have your matter reviewed to learn whether things went properly? Gee, if the implant is placed off the road map, it could be that the intended relief will not come your way.

If something is found dramatically awry, then speaking to a legal person might be the route to obtaining the means to correction of your situation.

Hoping the best for you,
Caring,
Mark56

[rsdbadfoot]

Hi All Boy do I have a hard time figureing out how this works. I am from n. Utah. I cant go to the E.R. cause they would tell me to go back to the doc that put it in. I was just wondering if anyone that has a scs has had previous back surgery because the old scar tissue is what gave him the bad time he kept trying to get the scs thru the scar tissue and couldnt get it thru this was on the trial i am wondering if for the perm one if he put it thru the scar tissue while I was asleep and couldnt complain as to how much it hurt like I did when he was trying to get it thru for the trial one if it is thru the scar tissue now maybe that is what is hurting so bad. I sure wish there was a way to find out without removing it then having a MRI to find out what he has done. Yes i know about RSD spreading I have had it for about 12 yrs. and have studied every thing that i can find about it on the internet. One thing that I did find out that the doctors didnt know or didnt mention was that the pain pills delete mens testerone so shots are necessary to keep it up so your bones dont lose their density. I got this RSD from a podiatrist that accidentally slipped and cut a artery and didnt know how to put a drain in properly or stop the bleeding and almost bled to death getting minor foot surgery. I say that just to say how hard it was to find a lawyer around here that does medical malpractice I just looked and there isnt one in the phone book I called them meaning every lawyer in the book and found one last time and it took ten yrs to settle is sure isnt as easy as people say Ill sue it sure wasnt easy for me i went thru about four of them before every thing was done. I had the perm one done the first of sept and the doc just kept saying just wait and it will stop hurting then finally he said I havent had one failure and your not going to be the first so go find another doctor well i guess that cleared up the hasnt had any failures he just sends them down the road to another doctor. Did anyone get the price of having there scs installed the whole price taxes and all lol......I have asked quite a few people on facebook about what kind of doctor put in there scs and they didnt know but when they checked and got back to me most were put in by antheologists i found it unbelivable like Mark before I always went to nerologist i think they do the best back surgeries but now they wont see me without a referal and then they say go back the the doc that put it in. I finally got one that said he would take it out but not look for anything causing the pain well geeese i want to know what he screwed up. I think they the hospitals have trained antheiogists to put in scs but he has no clue how to fix anything if ya remember they trained a monkey to drive a rocket ship into outer space but i think that was all of it........lol well thanks for listening Alan

[Rrae]

I am so SO sorry about what you've been dealing with!
And the foot thing!

How recently have you spoken with this Dr - (the one who wants to keep his slate 'clean')....... I sure hope he isn't of the impression that he's succeeded in 'sending you down the road'.......
If I were you.....I'd at least put in a call and say that you need ALL your medical records from this Dr......including all of his notes, especially regarding your procedure. This will let him know that you haven't been tossed to the side of the road and forgotten. Chances are they will say, 'Ok, but you have to pay such and such per page of notes....'
Even if you don't have an attorney hired yet/per se, I'd at least say something to the effect of 'my attorney will be getting in touch with you'......or SOMEthing to indicate that you are still HERE....and still needing medical attention. This might be a sobering thing for Doc to realize.

I didn't even have the more invasive approach (Laminectomy) of getting the SCS, and mine cost WELL over 100 THOUSAND dollars. Believe me, your doctor has filled his pockets.
Just get your medical records!

From what you are describing, it sounds like this guy is very arrogant and has no interest in the medical oath he has taken. He needs a wake up call.
My doctor also was pretty arrogant, until I had to get one of my leads removed because it had migrated. When he saw the xrays of my SCS (his 'masterpiece )....it humbled him a bit.

I hope you can get someone to advocate for you Alan.....please don't give up searching

Rae

[Mark56]

I just can't imagine your doc saying take a hike down the road to some other doc if you are back in front of them on review of your case to address issues that persist!! Oh Good Grief!! I don't know, seems that your doc would want to work with you to determine what causes the problem so it could be remedied...... even and well..... especially in a small community, the doc wants to maintain a favorable impression among the potential patient community. I hope you either gain all of your records from the doc if you must in order to approach another for their care, OR that your treating doc will re-evaluate that last communication with you as it's such a far reaching effort to get into hassles with the original treating physician from all perspectives, including those to which Rae alludes.

Hoping and praying for a solution for you Alan,
Mark56

[rsdbadfoot]

Hi well it has been quite a few months since i have been here am reading alot of the posts to catch up on what has been happening. Looks like alot of thing. Well here it is fall in n. utah leave have all turned beautiful color and gone snowed the other day in the mountains make the deer hunt better but i have quit doing with all the medical problem.
I had a nero surgeon take the scs out of my tail bone and she put in on the spine with screws i dont think it is working as well as it did funny it took months for mine to start helping and it even helps about the same when it is turned off i dont understand that except maybe just being hooked to the nerve has done something to it to help the pain sure doesnt make a lot of sense. my tailbone or cottle is still hurting real bad both butt cheeks are hurting bad i just fell down crossing the back yard felt like a knife stuck me right allmost in my butt sure smarted the wife didnt know what to do except throw her arms in the air and start yelling was kind of funny . they nero surgeon sent me to a pain clinic to get shots in my back but they wouldnt do anything for the tail bone said he didnt know where to put the needle without knowing he wouldnt do anything but he gave me some injections up higher i had it dont under seditives cause it hurts me so bad to get that needle stuck in. then when the doc was leaving he came over and said now keep good track if it helps the pain in the next six hrs if it helps then we can burn those nerves off. I didnt have a clue what the hell he was talking about i asked him well sometimes it takes a couple of days to start working doesnt it and he said no not this medicine it only works for a few hrs. I was just dumbfounded my mouth must have fell open to the floor he must have got me mixed off with some other patient we never talked about short term medicine or burning any nerves god it ****** me off all that for absolutely nothing god i have bad luck with doctors. i have never even read or heard anything about what he said. I dont have clue how they find out what is wrong with tail bones especially when they cant use a mri to find the problem i cant even find any other person that has had the scs wires put up there tail bone the nero surgeon the took the wires out puts them thru the tail bones sometimes but she didnt say why or when she does that she said the anstelogists do most scs now cause there is alot less cutting to put them in when they can do it with needles her surgery sure hurt alot less than when he put them in his painless way i hope i never have to go thru what he did again even the cut where he put in the generator or battery pack hurt real bad the tape he used wouldnt let the skin stretch and it was trying to swell but it couldnt she didnt use anytape i think she just put some glue on the incision and that was it well thats alot of typing for someone that sucks at it....so see ya all later.........Alan

[Rrae]

Thanks so much for the update! It's great to hear back from you.
I'm so sorry you are having these problems. Sure wish your new Dr would have done a 'trial' on you before getting everything implanted again.
You've been thru so much pain and it doesn't sound like they communicate very well with you.

Do you think you might get better relief after some time passes?
You've been poked and proded way too much it seems

Rae

[rsdbadfoot]

Hi Rrae Im not sure but i dont think they do a trial when they put the scs in surgically they remove all the meat to get down to the bone they grind a flat spot to put the screw to hold the wire or at least that is what i understood. I sure hurt alot less than the way the antheologist put it in I would do it this way if they give me a choice i asked for them to do it this way the first time i have alot more confidence in the nero surgeons but she told me the antheologists do it better and i think she was very good but i dont know much about it. How are u doing didnt i just read where u just got a scs put in. This doctor wouldnt even discuss the pain in my tail bone i even called her again the other day but couldnt find anything out except she passed me the word to just go to the pain clinic for a injection for the upper place when my back was hurting she thot that was arthritis must have come on quick it wasnt there the day before i got the scs. the pain doc wouldnt even attempt putting any medicine in or around the tail bone without knowing what the problem is . well i dont know how they can find out what the problem is without removing the scs and getting a mri boy i think i am stuck i got out my walker that my mom had yesterday i think that is the only way i am going to be able to get around and the pain doc said oh i think we can get ya back golfing by next year lol well thats what he said what a joke. Too bad there arent more attorneys that are in to medical malpractice around here there are only a few i called one the other day and they need a one hundred percent case or they wont take it. I been down that road before with my foot and boy do they turn into a gigantic mess was unbelivable the problems that come up.......well have a great week........Alan