[Breezy55]

As you can see by my title,I am so mad! The Pain Clinic Dr's want to take me off of my Morphine,(which I take two type's of) and my Methadone which I was just put on! They want to implant a Neurostimulater either into back or my abdominal cavaity(sp?) This also involves two surgery's! The first one is a temporary external system,the next step is to schedule time to get an implantable system for long-term therapy.What I want to know is do any of you have this MEDTRONIC IMPLANTABLE NEUROSTIMULATION SYSTEM? They did not even ask me what I wanted to do! They just sent me home with a DVD and a RX for Clonidine. In case I have withdrawl's when I go off my other meds. I am seeing them next Thursday. Please if anyone has any suggestions,I need to hear from you! Breezy55

[hannah1234]

I have this... it if i am not mistaken it is the scs... pm me and we can talk more with questions and you can give me a call if you'd like

[SandyRI]

I think you want to see what Lost Mary has been writing in regards to the Pain Pump vs. the SCS.

Some people have good experiences with their SCS and some definitely don't it seems. I don't know if it's fair that your doc isn't giving you more of a chance to make an educated choice. Sounds like he is forcing it on you...do you have a personsal care physician that can write your pain meds for a while until you can find another doc?

Its reputed that docs can make big commissions off the sale of the SCS from the manufacturers, and therefore aren't independent when it comes to making a recommendation for whether or not they are really in the best interests of their patients. So be really really careful.

Sorry that you are going through this. Please take care and keep us posted.

XOXOX Sandy

[Wilbyfree]

Dear Breezy,

RUN....find another pain specialist. Sorry about your experience, I too seen an arrogant pain specialist, as I am sure most on this board have. I never went back, however, I got bills for several months from doctors that I never seen or heard of who supposedly had a board meeting as to whether or not I was a candidate for SCS. It was a terrible experience. Keep searching, in the meantime, go back to your regular doc, explain your experience, if he can't recommend someone else, find one on your own and make the suggestion. Don't feel alone or too frustrated, you will find someone who has your best interest at heart. I did. Best of luck

Jeanie

[AintSoBad]

I agree with wilbyfree,
SandyRI, is great, but In this instant case, I believe she is misquoting (Sorry Sandy).
Mary is on a "Pump" that infuses drugs into the spinal col., While Breezy is speaking of a stim.
I've been watching these discussions very carefully. And, it seems to me that the "Pumps" are FAR more successful than the "Stims"!

A patient, Any patient, should be given the right of Free Choice!
But, do you know what gets in the way?
Sales people!

This is no different than buying a Car, I'm SO SADDENED TO SAY!
If your doctor is "hooked up" with a company who will pay him a commission for selling a Pump, or a Stim, (and, there's no laws broken there), until, and unless you ASK HIM/HER specifically, and you Dam Sure Better Have the Gonads To Do Just That!!!!!!!

MIKE? Can You help us here?

Have them sign off, that they get no commission~!
Sadly, it's' gonna take Your 'Nads, to do that!

Medtronic, is a HUGE company!
They can pay who, and what they want!

So, due diligence!

ASK the tough questions, pick up the phone, call, and ask!

Demand the answer in writing!

The dam Stim, seems to be a "first Step",
I would never accept it, over a "pump"!
Never!

Read
LostMary's Posts!
You needn't bother her with questions!


Breezy,
this stuff ticks me off, and I certainly hope you dig deeper!

yer friend,

Pete
asb

[Rrae]

Hi Breezy. I hate to see yet another 'victim' of these arrogant pain 'specialists'. I too am basically going thru what you describe. I can certainly relate to your frustration! I am scheduled to get my permanent SCS on Feb 24th. I did the trial on Jan 7th. Yes, it 'covered' the area of pain (both legs), but the pain is always there. It doesn't 'get rid' of pain.
At this point I feel as tho I have no other choice. I've been dealing with this for over 5 yrs now and have spent thousands of $ on tests, meds, treatments, etc. My tolerance to pain meds will just continue to go up.

It seems as tho your doc is being WAY too pushy with this. Did he say WHY he is taking you off your meds so abruptly?
My doctor didn't actually 'force' this on me so to speak, but yet if I DON'T get this, they will perceive me as an 'addict'. At least that's the vibe I get. So, in a way we are being 'railroaded' and it is very upsetting. Not only is the actual PAIN ruining my life, but the humility is kILLING me! My doc is so cocky I can't stand it. Unfortunately I have no other choice, unless I want to travel a great distance. And this guy just 'happens' to be real good at what he does. So I'm screwed.
On one hand I have to be 'grateful' for getting 'quality' medical care, but I HATE being on the other end of these PUPPET STRINGS !!!!
I probably sound like I'm talking in circles and maybe I am, but this is absolutely THE most horrible crap I've ever dealt with! I certainly don't want to keep taking these meds. So, there really ISN'T any other choice that I know of.
Maybe in the long run we won't feel this way about our docs. But for now we have to try very hard to accept the position we've been put in. It wouldn't be near this bad if the doctor would have a better 'approach' about all this. We certainly didn't ask to be dealing with this.
Anyway, my heart goes out to you. I was gonna start a thread similar to yours because I had to get this off my chest.
Just know you are not alone.
Feel free to PM me and we can talk more details.
Hang in there.

Rae

[loretta]

Originally Posted by Breezy55

As you can see by my title,I am so mad! The Pain Clinic Dr's want to take me off of my Morphine,(which I take two type's of) and my Methadone which I was just put on! They want to implant a Neurostimulater either into back or my abdominal cavaity(sp?) This also involves two surgery's! The first one is a temporary external system,the next step is to schedule time to get an implantable system for long-term therapy.What I want to know is do any of you have this MEDTRONIC IMPLANTABLE NEUROSTIMULATION SYSTEM? They did not even ask me what I wanted to do! They just sent me home with a DVD and a RX for Clonidine. In case I have withdrawl's when I go off my other meds. I am seeing them next Thursday. Please if anyone has any suggestions,I need to hear from you! Breezy55

Hi Breezy, I haven't forgotten you. Please forgive me for not writing sooner. It's been crazy here. I had flare,, lesions,
Anyway, you have reason to be mad-he's not giving you a choice. I've heard it's riskyfor the neurostimulater for spread and increased pain. Lots of horror storries on that. A lot had to another surpery to take them out.
I did have the Ten's Unit and like it very much.
I'll get back with you soon on the assistance we talked about.]

I live in Arizona so it's always warm here, so i wear cotton top and cotton skirt to bed. cotton half slip. i'll write soon.. with love, loretta with soft hugs

[Dubious]

BS! Tell them you are happy with the relief you get (if that is true) and if you are forced into a SCS, then they will sign a waiver releasing informed consent and potential malpractice (arbitration agreement), in other words they are wholly responsible for any increase in your symptoms, and if they intend on withdrawing your meds and they are working for you, then you will consider filing a complaint with their state boards and seek legal action in consideration of pateint abandonment.

[fmichael]

Breezy -

Agree with what people are saying. This is so far over the top on so many levels, it just boggles my brain. Legal, ethical, medical, you name it.

For starters, on the medical/legal level, not only are they COMPELLING you to undergo surgeries but they are making you go cold turkey in exchange for technology which may or may not be appropriate. Check out the Research and Clinical Articles page of the RSDSA cite under the heading Spinal Cord Stimulation and Neuromodulation http://www.rsds.org/2/library/articl...index.html#SCS paying particular attention to van Eijs, Smits H, Geurts JW, et al, Brush-evoked allodynia predicts outcome of spinal cord stimulation in Complex Regional Pain Syndrome type 1, Eur J Pain 2010 Feb;14(2):164-9 Epub 2009 Nov 25 FREE FULL TEXT AT http://www.rsds.org/2/library/articl...t_Barendse.pdf

SCS has evolved as a clinical application of Melzack and Wall’s gate-control theory (Melzack and Wall, 1965). The general mechanism of pain relief by SCS is still understood in these gating terms. The pain alleviating effect is generally seen to be caused by activation of large-diameter afferents in the dorsal columns. The fact that chronic neuropathic pain patients, even those with severe hypoesthesia, can still show a successful response to SCS might be explained by the presence of remaining intact large fibers in the dorsal column which can be recruited for stimulation. Pain in an affected extremity provoked by the normally non-painful stimulus of a brush is regarded as a sign of central sensitization (Vaneker et al., 2005). Our results show that brush-evoked allodynia seems to be associated with a lower chance of achieving long-term pain reduction with SCS treatment. This phenomenon is probably due to central sensitization which makes it difficult to suppress the total experienced pain, both spontaneous and evoked, even when stimulating the spinal cord dorsal columns. Central sensitization on spinal level occurs in the dorsal horn and is probably caused by repetitive high frequency stimulation of peripheral C-fibres leading to an amplification and prolongation of the response of the dorsal horn neurons, a phenomenon called ‘wind up’. This process may be linked to increased release of substance P and the excitatory neurotransmitter glutamate, mediated through voltage gated N-calcium channels, leading to postsynaptic N-methyl-D-aspartate (NMDA) receptor interaction and hyperexcitability. Furthermore the amount of inhibitory neurotransmitter Gamma-aminobutyric acid (GABA) and GABAergic interneurones within the spinal cord may increase or decrease the output of the dorsal horn. These mechanisms cause increased sensitivity to pain (hyperalgesia) and input from non-nociceptive Aß-fibres to be perceived as pain (allodynia) (Baron, 2009; D’Mello and Dickenson, 2008). So far, neurochemical and electrophysiological evidence from experimental studies has suggested that the effects of SCS on the dorsal columns are mediated centrally in the dorsal horns of the spinal cord, by altering the release of neurotransmitters (e.g. increased release of GABA) and suppression of hyperexcitable Wide Dynamic Range neurons (WDR) (Cui et al., 1996). In experimental SCS the amount of pain relief is related to the severity of allodynia (Smits et al., 2006; Yakhnitsaet al., 1999). The non-response to SCS in animals with severe allodynia may well relate to a severe form of central neuropathic derangement and may imply a disability to produce appropriate amounts of GABA, either alone or accompanied by the increased loss of inhibitory interneurons. In this scenario modulation of dorsal horn neurons by SCS could have either little or no effect. Other animal studies showed that the combination of SCS with pharmacological therapy, in rats not responsive to SCS, can become effective when combined with intrathecal or intravenous medication like baclofen, adenosine, gabapentin and pregabalin (Wallin et al., 2002). [Emphasis added.]

So, by any chance is your skin sensitive to light touch? Then SCS may not be right for you.

But of course they disclosed this risk to you, right? Let's just take a look at Wisc. Annot. Statute 448.30 :

Information on alternate modes of treatment. Any physician who treats a patient shall inform the patient about the availability of all alternate, viable medical modes of treatment and about the benefits and risks of these treatments. The physician's duty to inform the patient under this section does not require disclosure of:

(1) Information beyond what a reasonably well-qualified physician in a similar medical classification would know.

(2) Detailed technical information that in all probability a patient would not understand.

(3) Risks apparent or known to the patient.

(4) Extremely remote possibilities that might falsely or detrimentally alarm the patient.

(5) Information in emergencies where failure to provide treatment would be more harmful to the patient than treatment.

(6) Information in cases where the patient is incapable of consenting.

And how is this interpreted? Well, we have this recent case from the Wisc. Supreme Court: Bubb v. Brusky, 2009 WI 91, ___ Wis. 2d ___, 768 N.W.2d 903, FREE FULL TEXT AT http://www.wicourts.gov/sc/opinions/07/pdf/07-0619.pdf

Summary
This section requires any physician who treats a patient to inform the patient about the availability of all alternate, viable medical modes of treatment, including diagnosis, as well as the benefits and risks of such treatments. Although the jury determined a physician was not negligent in his standard of care for failing to employ an alternative when treating the defendant, that did not relieve the physician of the duty to inform the patient about the availability of all alternate, viable medical modes of treatment.

Now, referring to an issue Dubious raised, what happens when a surgeon oerform an operation without full informed consent? Although here I didn't find any Wisconsin authority immediately available, we have the general rule expressed by the great Justice Benjamin Cardozo, when he sat on the New York Court of Appeals, in Schloendorff v the Society of the New York Hospital, 211 NY 125, 105 NE 92, (1914):

Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent commits an assault, for which he is liable in damages.

For a great article on point with all sorts of helpful stuff, check out, Timothy J. Paterick, Geoff V. Carson, Marjorie C. Allen, and Timothy E. Paterick, Medical Informed Consent: General Considerations for Physicians, Mayo Clinic Proceedings March 2008 vol. 83 no. 3 313-319, FREE FULL TEXT AT http://www.mayoclinicproceedings.com.../83/3/313.long

Abstract
Medical informed consent is essential to the physician's ability to diagnose and treat patients as well as the patient's right to accept or reject clinical evaluation, treatment, or both. Medical informed consent should be an exchange of ideas that buttresses the patient-physician relationship. The consent process should be the foundation of the fiduciary relationship between a patient and a physician. Physicians must recognize that informed medical choice is an educational process and has the potential to affect the patient-physician alliance to their mutual benefit. Physicians must give patients equality in the covenant by educating them to make informed choices. When physicians and patients take medical informed consent seriously, the patient-physician relationship becomes a true partnership with shared decision-making authority and responsibility for outcomes. Physicians need to understand informed medical consent from an ethical foundation, as codified by statutory law in many states, and from a generalized common-law perspective requiring medical practice consistent with the standard of care. It is fundamental to the patient-physician relationship that each partner understands and accepts the degree of autonomy the patient desires in the decision-making process.

All that said, while the abstracts I've seen in PubMed become aomewhat murkier on the questions of compelled treatment if someone is deemed "an addict," no where can I find authority for the proposition that a CPRs patient on Methadone, a strong NDMA-receptor antagonist, should be required to drop it overnight in favor of a SCS that may not work!

So, in addition to what Pete and Dubious have already suggested, I would offer two thoughts.

First, do you have a friendly doctor? Specialty or lack thereof is immaterial. If so, I would call her/him immediately, explain what's going down and have you go in and sign a request for the immediate turnover of all your patient records, including treatment notes to your favored physician. There's got to be good stuff in there. (While you probably have the right to get that all yourself, either under state law or HIPPA, you're more likely to get an "unexpurgated" copy, delivered faster, if the request comes from another doctor.) Hopefully you can at least use these records to find another pain doctor sooner rather than later if your GP is unable to prescribe the pain meds you need.

To that end, you can also use a remarkable little search engine, showing the names, addresses, etc. of those pain management specialists who have been board certified by the American Board of Pain Medicine (ABPM), a certification that is only given after the doctor completes a formal residency or fellowship in pain medicine and then sits for an 8 hour written exam. (This is in contrast to another "certifying" organization that requires no formal training in the field.) Here's a link that lays out who they are http://www.abpm.org/about/index.html and here's the search engine http://www.association-office.com/ab...dir/search.cfm

Finally, with your records in hand and with at least with some pain management services available to you, even if you have to go slightly out of your way to connect with another group, you might want to actively seek out the services of an agressive medical malpractice lawyer in your area (the kind that begins selective suits with a press conference for the benefit of the local television stations) and isn't afraid to shout CONFLICT OF INTEREST and BREACH OF FIDUCIARY DUTY from every rooftop in town. This one just smells rotten to the core.

Just some thoughts, but I hope you find something useful in them. Apologies for going on so.

Mike

[dealingwithtos]

Hello,

I wanted to comment on this thread.

I don't agree with the limited conversation that this doctor has done with the SCS. I don't agree that a decision was basically made for you without any explanation. The SCS vs. a pain pump is a very good argument for you to make with this specialist. Perhaps you can have a phone conversation with him (or another appt) and let him know that you would like to pursue information regarding the pain pump to allow yourself to analyze which one would be better for your situation.

With all this being said. I have a SCS which was implanted last november. So, it's been a little over a year. The first surgery that they are talking about really isn't a "surgery." It's where they temporarily put the SCS in your spine to see if it is something that will work for you. The permanent implant is really the main surgery.

My SCS has changed my life literally. I am glad to say that I am a success story. So, there are people out there that have had good luck with this. I am on no narcotics at all. I am able to work FT and keep my house, cars, etc. While the stimulator isn't a "cure all" it atleast takes the need for narcotics away. There are days where I am miserable. But, my choice is to turn the stimulator up vs. be drugged. I went 2 years being drugged and trying to work.

Ok, now, I do want to mention that it takes time after the surgery to feel better. I would say it took really 6 months to feel pretty good and about a year to have things really scar into place.

There are people who have had horrible luck with the SCS. I happen to be one that has had good luck. Everyone is different. If you are able to get the pain pump, more power to you. But, if your doctor thinks that one or the other will help your situation, it might be beneficial for you to take a step back and see if this thing will help you. Many people get the trial for the SCS and don't want to give it back...

Ultimately, the decision is up to you. Not your pain specialist. I'm sorry that you were treated like just another number.

Hopefully, I atleast gave you something to think about.

Good luck.