Think long and hard pior to this implant!
 

I have my second implant in me as I write. I am seeing a sugean today about removal. First surgean does not return phone calls. Not to me or my other doctors that have questions. First time I was shown one device that would be implanted and during surgery they implanted one much larger. Within two weeks I had a MRSA staff infection. Had to have first removed and the area cleaned of infection, was given meds and sent home. After this I had a ping pong ball sized hard lump in my tummy where the implant had been. they decided they had to reopen and clean all of the scar tissue to try and flatten this area. Doing this taught me what pain really is! Next it is time to place the stimulator that I was originally shown in. This time, even though I talked to my surgeon twice about placement he implanted it two inches away from from my area of pain which is rib area in front of my heart. The implanted area he chose also is one inch from my hip bone. With this placement you cannot sit in a chair because my ribs touch the top of the implant and my hip bone hits the sharp corner of the bottom of the stimulator. I have to sleep only on my back in a lay back chair. If I roll to my left the pain of the implant goes off and I am forever getting back to sleep. I get about four hours of sleep each night.
I am not a fat person being 6'1", 204 pounds. unless you are fat and have three or four inches of blubber to surround your implant you are in going to face a life of hell. If you are fat you are a candidate for diabetes.

A nurse from the hospital was calling and checking on me until their legal department found out and put a stop to any calls. I have given a year for my body to accept this implant. two weeks ago, out of the blue a nurse from the hospital called to see where I had gone to have my stimulator removed. I told her it was still in me. She could not believe that I could handle the pain that long. She wanted me to know that all of the regular sugical nurses that were in the OR for my first implant knew that big mistakes were made and all of the surgical nurses that were in the OR when the second was implanted knew that I was rolled out of the OR with major errors in my implant. She wanted me to know that not all of the people involved were bad, but those that were recieving the big bucks were in this game for money and could not care less about the patient. It was so nice to here from this nurse who knew that there were orders not to talk to me! She explained that if formal complaints are made by them they end up without a job and are black balled.
Do not expect to get one bit of help from the manufacturer of this product. the best answer I could get when I or a doctor of mine would call them is "I thing so". The reps you meet have no authority or valid knowledge according to the manufacturer of my implant.
I was taking oxy and morphine for over six years for my rib pain. Since all of these proceedures I have been taking oxy and morphine for the pain of the stimulator. I prefer to get back to just taking it all for my original pain.

Those involved with selling and implanting can see if going to church for an hour on Sundays cleans the filth they cover themselves in all of the other hours of the week. SHAME ON THEM

What a nice nurse to call after all of this time and to be so truthful to me! Her boss was great until she got caught and told to stop contact!

Think long and hard before you get involved with these people that take no responsibility for their own actions. Once in and they are paid you are on your own.

Hi! Im sorry you had so many problems with the SCS implant. I just had my third surgery to reposition and repair my SCS generator. It took me almost two weeks this last time to get in touch with my rep to schedule this surgery. Being fat with some blubber is no more sure that you will becomfortable than being skinny. Im 5'4" and 230. When putting the generator in they had put it mid back and it was so painful. The last two times they put it in they put it about a inch above my waistline in my fattyest part. I am only 8 days out of surgery 3 and it does seem to finally be flat and not protruding. I am hoping this is what I have been praying for. It gives great relief for my foot, but for about a year I too had to take as many or more pain pills for my implant pain as I did with my foot RSD pain. I have been able to start cutting my pain meds back the last two days a little more and it seems to be working well. I would too advice any body who is considering this implant do not take it likely. It is not always a sure fit for everyone. Please remeber it might take multiple surgerys to ever get it comfortable. If your not in it for the long hall, you may not want it. It is a very aggressive aproach and requires lots of followup care andmostly the finacial side of it can get very expensive. But as for me I am finding it was worth it to try and regain my life back. Every thing is not always foolproof and it might not work for everyone. But for the few or many it helps it is our lifesaver. Thanks and hope your feeling better.

Thank you Goforth Pennysaver
 

Thank you for sharing your testimony! I am SO sorry you went thru such a horrible ordeal! :(
It appears you were the victim of Dr "Mudforbrains" and I am sorry to know that there are such irresponsible medical professionals.....
Reading your experience is a true eye-opener!

May I ask WHY you did not pursue a medical liability malpractice issue?
It appears you have plenty of legal ground to stand on and had several nurse witnesses willing to testify on your behalf?

Medical mis-management is an unfortunate reality in some cases.
I'm sincerely sorry you fell victim to this.....

Again, thank you for taking the time to share this......hopefully it will help people realise that this IS a serious decision to weigh and much homework must be done and finding a well-credentialed surgeon is key....

Best of luck to you with your upcoming meeting with your current surgeon.

Caring
Rae
:hug:

I feel bad that you had such trouble with your implant..but please remember that not all medical procedures are the same in every patient and that not every hospital is the same either. I absolutely adore my pain management doctor. He was my anesthesiologist for my last cancer surgery and when he found out that I was in pain all the time, he scheduled me to see him in the interventional pain clinic...that was in 2005 and he's been my pain management doctor ever since. He tried every procedure possible (including some experimental) ones before we finally decided to give the SCS implant a try. This was our last ditch effort to control pain.

I think that the care that you received was very poor and that things most definitely should have been handled differently. My surgical team is the same team that has done over 25 pain procedures on me so I've trusted them with my life over and over again and was confident that they would care for me during my implant surgery. You need to be sure to report the physician and the hospital to the health department (especially since you had a case of MRSA) and speak to an attorney. At the very least, the hospital should be held liable to cover the cost of removing the stimulator that you have in you now.

Please be sure to find a surgeon that you can trust for your next surgery. I always research EVERY physician (yes, even my GP was investigated) because I too had a bad experience with a physician (10 days stuck in a hospital with a massive lower abdominal infection and having a wound vac stuck to me 24 hours a day sucked) so I do not just accept their word that everything will be just peachy. You can go to your state health department website to find out information on any physicians (where they trained, how long they've been in practice, specialties, and if they've had complaints filed).

I wish you the best in getting the care that you need and hope things in the future work out better for you.

[QUOTE=Goforth Pennysaver;641606]I have my second implant in me as I write. I am seeing a sugean today about removal. First surgean does not return phone calls. Not to me or my other doctors that have questions. First time I was shown one device that would be implanted and during surgery they implanted one much larger. Within two weeks I had a MRSA staff infection. Had to have first removed and the area cleaned of infection, was given meds and sent home. After this I had a ping pong ball sized hard lump in my tummy where the implant had been. they decided they had to reopen and clean all of the scar tissue to try and flatten this area. Doing this taught me what pain really is! Next it is time to place the stimulator that I was originally shown in. This time, even though I talked to my surgeon twice about placement he implanted it two inches away from from my area of pain which is rib area in front of my heart. The implanted area he chose also is one inch from my hip bone. With this placement you cannot sit in a chair because my ribs touch the top of the implant and my hip bone hits the sharp corner of the bottom of the stimulator. I have to sleep only on my back in a lay back chair. If I roll to my left the pain of the implant goes off and I am forever getting back to sleep. I get about four hours of sleep each night.
I am not a fat person being 6'1", 204 pounds. unless you are fat and have three or four inches of blubber to surround your implant you are in going to face a life of hell. If you are fat you are a candidate for diabetes.

A nurse from the hospital was calling and checking on me until their legal department found out and put a stop to any calls. I have given a year for my body to accept this implant. two weeks ago, out of the blue a nurse from the hospital called to see where I had gone to have my stimulator removed. I told her it was still in me. She could not believe that I could handle the pain that long. She wanted me to know that all of the regular sugical nurses that were in the OR for my first implant knew that big mistakes were made and all of the surgical nurses that were in the OR when the second was implanted knew that I was rolled out of the OR with major errors in my implant. She wanted me to know that not all of the people involved were bad, but those that were recieving the big bucks were in this game for money and could not care less about the patient. It was so nice to here from this nurse who knew that there were orders not to talk to me! She explained that if formal complaints are made by them they end up without a job and are black balled.
Do not expect to get one bit of help from the manufacturer of this product. the best answer I could get when I or a doctor of mine would call them is "I thing so". The reps you meet have no authority or valid knowledge according to the manufacturer of my implant.
I was taking oxy and morphine for over six years for my rib pain. Since all of these proceedures I have been taking oxy and morphine for the pain of the stimulator. I prefer to get back to just taking it all for my original pain.

Those involved with selling and implanting can see if going to church for an hour on Sundays cleans the filth they cover themselves in all of the other hours of the week. SHAME ON THEM

What a nice nurse to call after all of this time and to be so truthful to me! Her boss was great until she got caught and told to stop contact!

Think long and hard before you get involved with these people that take no responsibility for their own actions. Once in and they are paid you are on your own.[/QUOTE


holy moly!! You poor thing, I'm on my second stimulator. This one they did the laminectomy and inserted the "much larger one" unbenounced to me inside my spine. I've recently been sweating at the onset of any activity. I'm about 2 1/2 months out of surgery. When you got your staff infection, is this by any chance one of your symptoms? I'm most desperate to find out what is creating this all of a sudden..its horrible. I've been through hell, but you make my journey seem like a piece of cake compared to you.
Best of luck to you...this is an experience that once you hear it, we don't easily forget it.
Deidre

[QUOTE=Deidre Duron;642997]Deidre,

If you are having pain in an area that was not part of your original problem or discoloring or swelling or anything that you are not comfotable with get to your doctor or a different doctor now!
If something has gone wrong you are going to be treated as if you did not exist by those involved so far. Remember that according to my manufacturer, their reps have no authority or have no knowlegeable to even talk to a patient about the stimulator. They could not explain what the reps position is in all of this but made sure I knwe that they were zeros when it comes to communicating with them for anything.
If you have infection in your spine you have major problems, RUN DO NOT WALK TO A DOCTOR NOW!
It has been 2 1/2 months so they have been paid and could care less about you! NOW RUN

Pardon my confusion, but I'd like you to please give more detailed reference of where you are getting this information regarding your manufacturer saying that their Reps have 'no authority or knowledge to even talk to a patient about the stimulator........ ??? :confused: The Representatives are TRAINED specifically to be involved 100% of the procedure beginning with the Operating Room, to the Reprogramming Sessions. Your post is very misleading, and for the sake of newcomers reading this, I am asking you to give us the courtesy of being more specific as to WHOM exactly has made these statements to you......
It is obvious that you've had a horrible experience with your implant and are not getting very good communication from the parties involved...and for that I am truly sorry....
But your post is implying false accusations regarding 'being treated as if we didn't exist'.....and that the Representatives are instructed to be evasive and not speak with the patients......

The majority of these implants are performed in a respectable, industry-standard facility.
The physicians and Representatives can be hard to reach at times, which can certainly be frustrating, but what you've stated in your recent post goes over the top IMO.
You are catagorizing ALL SCS procedures into your bad experience and making claims that simply are not true. If they were true, there would be lawsuits all over the place......and you never did address my curiosity as to WHY you did not pursue a medical mismanagement lawsuit, if indeed your medical professionals treated you with this amount of neglect, even to the degree of instructing all parties involved NOT to be in touch with you.
You aren't obligated to answer my inquiry on that issue.....but
Very few people fall victim to that degree of malpractice, and if you are stating ALL the facts of your testimony, then, again, I am truly sorry you had such a bad experience.......but please don't imply that this is what will happen to the person you were posting.

The issue of a possible infection can and MAY be what is going on, but, unless you can provide us with WHERE you are getting the info regarding how these companies will completely neglect their clients, then it would be appreciated if you'd refrain from using fear tactics as an effort to show your 'support'.

Many here have indeed had bad experiences and Many here are VERY satisfied with the care and support they are receiving from the Meds and Reps.

I dont know if I want to jump on this post but I have to agree that it dose go both ways good and bad.I have talked with a few face pain contacts that also have SCS and other have it for O.N. none of those people have mentioned bad treatment with the reps ,reprograming or getting calls answered or returned. it may take them a few days to return a call but that isnt to bad in my book. I speak of both biotronic and medtronics companies that make SCS. As I am in contact with folks who have one or the other of those types.

Infection is a risk that should and most always IS talked about BEFORE the surgery.Most time there is a Psyche evaluation and many other things BEFORE it is done.. DO NOT TAKE ANY OF THESE STEPS LIGHTLY!!! Know the risks and make YOUR decision for YOU.

Pennysaver and anyone else...If what they said was going to be put in and another different unit or parts is used.... get a lawyer get nurses to write what went on during opperation... I am sorry that things went so wrong for you Pennysaver.. I would be suing!!!!!!

I do however have to say from my own personal experience once I had mine put in it has been very very HARD to find a neuro that wants anything to do with me since mine has moved out of state. and I will add that as far as face pain contacts..I am not alone neuro docs dont want to touch /work on us if the need to comes up BUT IT IS NOT THAT WAY FOR EVERYONE who has SCS for face pain.. I find Pain doctors much more helpful and I am very happy and think of my SCS as a god send since 2002.
PEACE
BMW

I recieved this information directly from the head offices of the company that manufactured my units. Believe me their acted as if they were fully authorized to act as a full agent with me the patient. I believe their headquarters made theses and many more statements about how little input their reps have after things started going poorly. Their rep made first contact with me and asked me to meet at a Starbucks where she spent one to two hours going over everything with me to the point of actually opening a case and showing me the unit that would be implanted. (As it turned out they first implanted a larger unit assisting in the cause for my MRSA, as explained by my surgeon) The company reps acted as if they were totally in charge until things went sour because of their actions.
I did not sue. The people directly responsible are not standing up and taking responsiblity for their actions. For me to sue these people is not going to change who they are and what they are showing their children to be. Any monies gained would be given to charity as that is me. There is gratification in knowing that the people that work side by side with they in the OR know what kind of people they truly are and one hour on Sundays does not clean off the filth of the past week. One of these days when the shoe is on their foot let us see how they chose to handle matters.
I hope this allows you to better understand:

Pennysaver,
I am re-reading your very first post in this thread to try and get this to come into a perspective that can be more easily understood.....
I see that you had a recent visit with a new surgeon.....I'm hoping it went well. I'm hoping he will be willing to step in and look out for your best interests and welfare.
Do you feel this visit went well? Have you and your surgeon agreed to get the SCS removed? My prayer is that you get put in the hands of someone who can help to get you back on your feet.
I see that you've been through a very bad experience and I want you to know that my heart truly does go out to you...... :hug:

I have seen it happen in other cases as well, that the patient was led to believe that they were getting a certain unit implanted, when in fact a different unit was actually used instead. If memory serves me correctly, this patient also developed an MRSA infection.
So, it is clear that this certainly DOES happen and it is very VERY unfortunate.
I agree as well, even in my case, there wasn't very good communication regarding WHICH model I would receive, and I really wasn't even given a choice.....couple that with the fact that, here we are people in dire pain and desperate to get pain relief and we are vulnerable and want to trust our medical caregivers. This is certainly an issue that needs to be heard/seen by other potential SCS candidates (or ANY implantable units for that matter).
So, I appreciate you taking the time to share your story, for the benefit of those who come to these forums seeking information.

Also, in re-reading your first post, you bring up another good point and I've seen this happen as well.......regarding the placement of the unit.
There have been several times when the patient and surgeon 'agree' on exactly where the incision will be, but when all is said and done, the patient finds out that their unit is placed in an area that was NOT agreed upon.
This also is a very unfortunate reality. It seems as though in many cases, the medical personnel don't truly 'comprehend' that this is OUR bodies and OUR lives and we are making drastic life-long decisions. To the medical personnel, however, more times than not, they are very busy and have many procedures to get thru in a day and it seems to us in hindsight that we didn't get the 'one-on-one' care that we were led to believe we were receiving.

After taking the time to re-read your posts, I realise what you are trying to get across....and you obviously have every right to be very angry with your situation.
Thank you for taking yet more time to clarify my questions....

I am still left scratching my head in confusion regarding some of your experience. I'm not sure where you are from, so things may be handled differently in certain regions and countries. These companies are HUGE.
Mine is "Medtronics" . They are worldwide.
So, perhaps it is standard protocol in other areas to 'meet with a Rep at a 'Starbucks' to discuss this highly invasive procedure, in which only a specially credentialed medical physician is licensed to perform..... ?
Forgive me for not being clear on the logic in that :o

Most of us here openly share the company we receive our implants from, so if you're inclined, please let us know WHO this company is that handles their business in this manner. I would be very curious to get on-line and find out more about them.

Again, thank you for sharing. Your input is very valuable. I hope you continue to stick around and let us know how this unfolds for you.
I hope your recent appointment with this new surgeon has you feeling good about what the future has for you.
Don't lose hope.......

Truly Caring
Rae

Hi Rae,

You know this company!
I was told by their headquarters that contact from a rep to me to begin the process is totally against every rule they have. I am to meet only with my surgeon and it is ok for one of their reps to be present. I am to direct all questions to the sugeon not their rep as their rep is not to have any direct one on one with me. Everything is to go through my surgeon, period! I did not call this rep and request a cup of coffee (I do not drink coffee). Before the rep contacting me I did not know she existed. I did not ask her to show me which unit would be implanted. The company rep got out a case and showed me the unit that would be implanted at the coffee house without the surgeon being invited to this meeting. As the the head of the OR stated to me- you did not walk into our hosital with this infection but you walked out of our hospital with a very serious type of infection. That concerned professional was read the riot act by the hospitals legal department and told to cut off all contact with me. Another truth to be looked at here is that on several occasions other physicians that needed to do unrelated procedures to me called my surgeon to ask questions so they could proceed safely with me. Those calls were never returned. Those physicians knowing I required theses proceedures went forward using all of the the precautions that they would use on a patient with a severe heart condition.
My getting involved in this forum is only an effort to show those of us that are in pain, sick of the morphine and oxy that are willing to try anything:
What did happen when mistakes were made instead of doing the correct and expected thing of taking responsibility for their errors they close you out and those involved that truly have humanity and try to let the patient know what went wrong take a chance of being fired. Fired-they should be praised for trying to improve patient outcomes. Money in this case is truly the root of all that is evil. Does the Rep that made all of these errors not step forward with honesty because she is afraid to lose her job? Does the rep that is responsible for all of these errors not step forward because she feels that others might see her as not the perfect person she is trying to portray? The nurses that work side by side with this rep at the facility where my implant worry about her behind her back as they know it is only a matter of time before she causes way more than the unnecessary pain and suffering she has directly imposed on me. My personal feeling is that there exists a problem that starts at the very top with the manufacturer and has bled down to the lowest person employed. Medicine is one of those jobs where mistakes are not allowed and if one is going to go in the field of medicine it reqiures them to start everyday with the thought that what they do that day has drastic effects on all of society. There are way too many other fields of endever that perfection is not a requirement, medicine is not one of them.
The surgeon I saw the other day called yesterday and talked to me. After researching what is required to remove my implant he does not feel he has what it takes. He has made arrangements with a neurosurgeon that is familar with a SCS and I meet with him in two weeks.
Regarding sueing: I am not a person without. Several years ago I recieved a huge amount of money. I decided that it would best to help different charities and that is what it does. I have what I need in this world except health. When doctor and attorney friends were wanting to sue over this situation I decided differently. I went to each of the people that control where the monies I was given goes to and told them to make some changes. Now, not one penny goes towards any research or other program that in anyway might happen to end up helping the manfacturer of my stimulator. They manufacture many other implants also. This hurt some programs that had got accustomed to the funds awarded them each year but after talking to me understood that to me this is the best way to slow down the misery the manufacturer is causing through lack of training and lack of integrity.

Rae, people need to know both sides of this thing they are getting into because as you stated when you hurt as we do we are willing to try anything. There are some truly bad people out there, very bad.
I hope this helps you understand that I am in no way a physician hater, but someone trying to warn others that it is possible that the bridge has washed out around the next curve.
I could have done a bad job all by myself.
Goforth

I have been reading this thread. It always horrifies me how some patients get "treated".

I will say suing in this situation, is more than just receiving damages. It is basically the only way to get attention paid toward
poor care that resulted. This doctor will reach a point where his insurance drops him. The hospital may suspend his surgical permission.

I would at least report him to the Board of Licensing in your state. Not cooperating with other doctors and mismanaging your case is enough to get him investigated by the board of licensing.

You may not want the money, but the other consequences for him just might help out some other unlucky patient in the future. So please consider this too.

I hope things turn out for you better in the long run. I am so sorry to read about your strife.Consider turning it over to a lawyer, so you can have some reduced stress.

Medtronic Reps
 

I saw the subject of this post and was curious so checked it out. I don't want to comment on anything other than to say that I've had 2 implanted, both Medtronics, and altho I had difficulty with the first neurosurgeon, all of the Medtronic reps were great. Because the leads were not placed high enough (altho the trial leads were higher), I didn't get pain relief at all for 2 years. Medtronics even sent in their "big gun" from this area to try to program my SCS to reach higher. 5 or 6 reps tried and devoted several hours total to help. Reps called me after both surgeries in follow up, and they all provided their cell phone numbers as well as office numbers. If I didn't reach them and left a voice message, they always returned my calls. I am sure there are bad reps, but I'd hate for someone not to try a SCS for fear that they might never be able to receive help or follow-up.

Hi Janet,

My resume shows well over twenty proceedures that were serious enough to call for anesthesia. I have never been afraid of surgery. For the first time in over sixty years I am scared to death of not my surgeon but the manufacturer as they seem to run the show even though they take no responsibility. I will never be the same trusting person again because of their actions and I think others should know what to expect after one of their well trained experts makes an error. If the rep cannot handle the responsibilities that go along with a job where perfection has to be the top priority they need to find other employment as most jobs have easy fixes. Medicine does not have easy fixes! I am happy that your experience has been completely the opposite of mine. She took trust in my neighbor away from me.

Goforth

This is the KEY point ! .....IMO
 

Hi Goforth....
MrsD took the words right out of my mouth :)
For the sake of future patients becoming 'victim' to your experience, this is why I was wondering why a fullblown legal suit didn't take place.....to get this 'Crackpot' Dr out of the medical field....
But, putting myself in your shoes, I'm sure that is much easier said than done. Legal Fee hassles, and I don't doubt one bit you were up against a bureaucratic power-struggle. However, like MrsD stated, at the least, have him investigated by the board of licensing and the AMA.......that would be the heroic thing to do!

Also, in reading your most recent post regarding the company instructing you to not be in contact with the Reps regarding the Medical Care and subsequent surgical decisions....yes, NOW that clears the 'fog' in understanding how you first presented your experience! I can see that the Company would not want to be held liable for any part of the medical decision-making process. Indeed, that is strictly between the surgeon and the patient.

You came to this forum with good intension, and I tip my hat to you for that. Making people aware of other's experiences is what this is all about.
Forgive me for jumping on you in wanting clarity of what you were claiming.
Communication is key. If this thread would not have got any further than your first post, I believe it would have left many people very confused....to be honest, i had this 'picture' in my head as though this whole ordeal was being carried out on the black market or something :o


What counts the most here, is YOUR welfare. PLEASE keep us updated!
We all need to vent from time to time......in all honesty I believe I mistook your 'venting' and assumed you were advocating that all people involved are crooked, when in fact there are many quidelines that must be met before a procedure such as this can be carried out.....

Group hug?
:grouphug:

Thank you for contributing to this forum..... :Tip-Hat:

Hi Rae,

legal cost are not an issue. i have many lawyer buddies that were all over me to go after them at no cost what so ever to me. I handled things the way I wished because i did not want to see the good ones hurt. I was told that they would get fired and would get black balled. Their largest regret is that they are forced to work for people that are on the big end of the money and have to go along with what they know is wrong or they are the big loser. As for me i am going to be fine. I have never been able to reduce my intake of hard narcotics because the pain from the implant and the original pain has made things worse. I know that my use of such high doses of opiates is taking years away and that is why i was willing to try the last resort. I help where i can involved in fund raising events. I ran into this blog and saw that it appeared that manufactures were involved only showing the good. I had to tell of the terrible. It happens, it has happened to me.
You be good and take care of yourself

See ya, Goforth

Appreciate Seeing Through the Glass
 

Goforth, if you are still around, I am appreciative of your situation and your report of the horror of difficulties you have suffered. Your testimony speaks well for the notion that one should research, study, think, pray, interview, and Look Real Hard at the prospect of undergoing yet another surgery, and this for the purpose of implanting foreign material within the body. So much is at risk any time an OR is entered, and I am glad to have learned of your history as I approach SCS hoping to gain better control over the pain I have endured since a car wreck many years ago. Realizing the full spectrum of results is mandatory to my decision to proceed, and your informational addition has become an important part of my contemplation.

So many have weighed in on the personal and societal impacts of your results and decisions that I need write no more than to share with you my hope and prayer you ultimately find a place of peace from your pain. My heart goes out to you.

:hug: Mark56