Newbie Introduction
 

Hello everyone. I'm Grey. I have had RSD/CRPS for 20 years now, in my right upper extremity. It happened from a fall at work. I had the burning pain that wouldn't stop, the ortho kept insisting that my rotator cuff was torn, even though it couldn't be seen on MRI. Eighteen months of cortisone injections and physical therapy, and it didn't help. He insisted on decompression surgery, he went in and didn't see anything, but ground down some of the bone to make room anyway. Needless to say, the pain was worse after surgery. He insisted that I ice 30 minutes on 15 minutes off. The pain became worse. I was diagnosed by another doctor shortly thereafter...RSD.

I have had stellate ganglion blocks, caudal epidural blocks, cervical blocks, radiofrequency ablation...none of them helped, they only made it worse. I saw a neurosurgeon at the Cleveland Clinic, and he told me I had RSD too long for injections to help, that they would only aggravate it, and cause flares. Dr. Stanton-Hicks also said that the injections would not help me. I tried Neurontin which literally made me drool and "lose time". My mind was foggy, I gained tons of weight. Lyrica gave me vision problems, and what I can best describe as hallucinations. I've never used LSD before, but I've seen how they show it in the movies. On Lyrica, I would turn my head, and the walls would move. It was very similar to what you see in the movies when people are tripping on acid. I tried several different anti-depressants, which just made me gain weight, and not feel anything. They didn't help with the pain.

What has worked best for me are anti-inflammatory medications, Magnesium tablets, opiates, Vitamin C, physical therapy, swimming every day, using a hot tub and sauna, and a proper balance of rest and activity.

I was found to be permantly disabled 7 years ago, and I am on Social Security, and I work part time. As much as I would like to work full time, between flares, spasms, migraines etc. there is no way that an employer could reasonably accomodate me, as I cannot guarantee being physically able to work on a set schedule the way a full time job requires.

My current problem, and frustration is that I am on my fourth doctor retiring in the last 20 years. He gave me notice, and referrals to pain management. I have been searching for a doctor for the last four months. It is extremely stressful. I have been to three separate "pain management clinics" and seen three different doctors, all of which say that they do not write prescriptions for opiates. Two have offered injections. The third offered to implant a SCS. I was told by the neurosurgeon and Stanton-Hicks that I was not a candidate for SCS. I know I tried a TENS unit years ago, and it irritated me, and made my RSD worse.

Today I spent some time reading about treatment protocols for RSD/CRPS, and the RSDhope site and RSDSA both say that SCS is an invasive treatment and "Because of the risks and high costs of spinal cord stimulation, the treatment is reserved for severely disabled patients." I know that I am disabled, but I don't know if I would meet the definition of "severely disabled." Yes I have pain, but it is well controlled with medication. I ride a recumbent indoor bike 5 days a week, 40 minutes a day. I swim and do aquatherapy, hot tub and sauna 5 days a week, year round. I do stretches every day. I am able to work part time tutoring students, and I also make jewelry. I am generally not depressed. I learned my physical limitations years ago, and I have accepted them. I have very little stress, with the exception of trying to find a doctor to continue my treatment. I have zero interest in having a doctor cut on me, implant devices in me, or give me injections that don't work, cause pain and cause huge amounts of weight gain (which happened with the last round of injections).

I have been in pain management for twenty years. I have NEVER: doctor shopped, taken medication in excess of prescribed dosage, asked for early refills, "lost" medication, had medication stolen, abused medication, or went to ER for medication. Not once. I haven't asked for a dosage increase in 7 years (since I was placed on a combination that works for me). I don't understand why I am having such a hard time finding a doctor to take over my care and let me continue on a course of treatment that is conservative, non-invasive and that works for me. I cannot begin to describe how frustrated I am, and how disgusted I am with the medical community at large. It seems that they want to push me into expensive and invasive medical procedures that I don't want or need.

I don't know what I am going to do if I don't find a new doctor to continue my current treatment. I can't go back to the kind of pain I was in before. I won't live like that. I've been so happy and fulfilled since bringing my pain to a level I can tolerate. I'm so angry right now, because there is actually something that works for me, but apparently the doctors are more concerned with their own pockets than with the well being of a patient.

I'm sorry if my post is too long, or if I'm ranting. I'm just so tired and frustrated. It shouldn't be this hard to obtain the medical treatment that works for me and is approved by the National Institute of Health. Am I the only one that this has happened to?

Hello,
In the past a few members did get some help/results by contacting their state reps , congresspersons etc.. It was medication or insurance approval related..

If you explain how you medication regimen is working for you and now you can’t locate a dr or pain clinic that will stay with the same thing, Just as you described here...and ask what is a person to do , can they help at all in this situation?

Or you can use the search - for older posts with representative, congressmen etc, the ones I know of were possibly back in 2008 or so...

Hello Grey and Welcome,

Your longevity with this disease and the amazing amount of function that you have are an inspiration. Most healthy people don't work out that much! You have clearly found things that work. I am sorry you are having so much trouble finding a new doctor. That is just terrible and is obviously is so imperative for continuation of living as you do. To refuse your current care that is working and recommend an SCS instead makes no sense to me.

Has your current doctor already retired? Do they have any colleagues that they recommend? you sound like a model patient! Doctors always know other doctors well enough to recommend someone and make some phone calls. Is a letter from your doctor an option, verifying your treatments and longtime compliance? something to put on your chart to aid documentation? The new regs on opiates are making things harder for prescribers and additional documentation may help. Is there an ombudsman in your state who can help? Sometimes there is one with the Dept. of Health.

Let us know what happens. The retiring provider scenario can be so hard. It is especially difficult with a disease that few really understand.

I am sending hugs and prayers for your continued care and health. :hug:

Welcome Grey :Tip-Hat: ,
Just gonna jump in here to welcome you to the family.
I need to say after reading your post that we can thank the EPA and CMS for making it so hard on doctors to prescribe some of the drugs that will help.
It frustrates me to no end how the system gets so screwed up at times.
I know we're not suppose to inject politics here but this had to be said. :Soapbox:

Welcome Greystreet. :Tip-Hat:

Thank you so much for the feedback :)

Thanks for the feedback and the welcome. My doc provided a reference letter with the referrals. I thought the SCS recommendation was ridiculous. Especially since this doctor was a fellow at the Cleveland Clinic under Stanton-Hicks when Stanton-Hicks said no SCS. The only thing that has changed in the years since then is that this doctor is now at an independent office. I actually told him that I thought he was putting his own financial interest before the needs of the patient. He scoffed and told me that wasn't true. I said that it was, especially since he apparently forgot that he saw me as a patient when he was a fellow, several times as a matter of fact, and wrote the same prescriptions for me then as I am currently taking now. I told him the only thing that changed besides his opinion on my course of treatment was his place of employment and the probability that he shared in the profits of his new place of employment. Needless to say, prior to my comment, he didn't remember me, which is not surprising since the Cleveland Clinic treats patients like cattle, you're just a billing number over there. (This statement probably doesn't apply if you need serious surgical procedures or have cancer though).

Another thing that was weird, they HD me sign an opiate contract and had me do a mouth swab for saliva test 30 seconds before the doctor even saw me, which I thought was odd. I know that drug testing is not only to check for compliance, it is also a money maker. It is my opinion that he had no legitimate purpose for that test, especially since he didn't write any prescriptions. I am going to wait and see if they bill medicare for that test. It was completely unnecessary, and quite frankly, an invasion of privacy.

Ugh. That's about all I can say on that. :(

On the drug screen. I just went through that when I started PM. The contract is pretty standard. I balked at paying for a UDS since I was very specific about not wanting opiates. The nurse told me it was so they could have a baseline and as long as they weren't prescribing pain meds for me they wouldn't need to do one again. This one statement, having a baseline, made sense to me as far as documentation and I suppose so they know if someone is using illegal drugs. It does feel invasive but if they prescribed narcotics to someone also using other drugs there could really be a dangerous outcome.

:grouphug:

Greystreet-- wow, what an ordeal you've been through! All to keep with the same regimen. Would your primary care doctor be able to pick up writing the scripts for you since you have a history of illness and have been taking these medications for so long now? I saw a rheumatologist some months back. Once she diagnosed me she said i could go to my primary care for follow ups for medication refills. But i know the fda reclassified some meds putting tighter controls on their availability, qty of refills, and how soon you can refill them. Its affected one that i've taken for years. But at least my primary care dr can still prescribe it. I would hate to start at ground zero w pain management because it seems like they all want to do injections which really run up my out of pocket expenses and do nothing for me.

welcome greystreet. soft hugs coming your way.

Hi!
 

Welcome! I am new here, too, and I think, based on your posts Grey, that we are similar in outlook. I hope you find a medical specialist who listens to you.

It took me a bit of time to respond, because I am dealing with my own despair resulting from conflicting medical advice.

Every PT I have seen states categorically that wearing overly supportive shoes is contraindicated and will interfere with bone building. I knew this intuitively, but followed the advice of two podiatrists who insisted on selling me thick soled sneakers and inserts that cost a fortune. I was told never to go barefoot. In a short period of time I quickly lost my sense of being grounded in space. Neither doctor would help me with pain. :( Managing pain helps with weight bearing.) One said he might give me a lidocaine gel. I did not go back.

The pain doctor I saw the other day was surprised that I put electrical devices in my "Not to do list." This was Pradeep Chopra's advice from his YouTube videos. The doctor stated that PC trained under him, implying, perhaps, his advice was superior. :(

He upped the neurontin, the rheumatologist gave me, which is making me sleepy and disconnected.

I was told, by several doctors, to use lots of ice and to avoid using heat. Worst advice ever. :mad:

I have begged to see a hypnotherapist, but I was told it would not help me. I know from previous unsolved medical problems, it can and does help, but my current insurance and HMO plan does not support this therapy. :eek:

My friend who is a prof at at a top medical university told me that HIV is treated one way on the east coast and another way on the west coast. :confused: Why this would be so, is a mystery. But, it demonstrates that there is a treatment divide in this country.

Ugh. Bluntly speaking: caveat emptor.

We aren't being provided health care. We're being forced to buy health care. Because what other option is there?

In more succinct terminology: We are being SOLD.

Not to say all doctors are bad. But the medical system is stacked heavily against the ability to provide effective treatment, the same way the political system is stacked heavily against the ability to provide effective leadership.

So all we can do is all we can do. Band together in places like this and support each other as best we can. I think there is more power in this then we give ourselves credit for.

OMG I am so ticked off right now, I can barely see straight.

I mentioned briefly, in my introduction that I was looking for a new doctor as mine is retiring. I mentioned that the third doctor said that he wanted to implant a SCS. I tried to keep it brief, as I'm new to this board.

Long story, my doctor who is retiring referred me to another doctor in that clinic, one that I read about online as having knowledge of, and being a kind doctor for RSD patients. I got to the office, and after a 2 hour wait (because office staff insisted I didn't have medicare, I had to call medicare and prove I did) I had to see a completely different doctor. It just so happened that I knew this doctor from Cleveland Clinic when he was a fellow. I didn't like his manner then, and it's only worsened now that he has no supervision whatsoever.

This doctor told me the only two things he could offer were SCS or Chronic Pain REhabilitation Program (which CCF said I'm not a candidate). I posted in my intro about the doc who said SCS. What I didn't mention was that this doctor who saw me at CCF when he was a fellow and Stanton-Hicks was my doctor, both stated I WASN'T A CANDIDATE FOR SCS. Nothing about me has changed since this doctor said SCS wasn't for me. Nothing, that is, except he's in private practice and could profit more from the procedure than he would by continuing my current regimen.

At the end of the appointment (which he didn't even do a physical exam) and after he recommended scs, I told him in no uncertain terms that I believed that he was advising SCS because he would profit from it. I told him that he had no problem with my treatment plan back then, and it happens to be exactly the same today as it was back then. The only thing that changed is that now he can profit from giving me this procedure. I told him everyone is entitled to their opinion, and walked out of his office.

I open my email today, and my doctor sent me a copy of the fax from this moron doctor. He wrote a malicious letter to my current doc, stating that he didn't think I have RSD. He made no mention of him recommending the SCS, and in the last paragraph actually said that he discussed weaning meds down, which he never said, and that I requested meds and when he said no, that I said I would find another doctor. That never even happened! I am so ticked off right now, I can't even stand it.

Like, really? All of the doctors in the last 20 years were all wrong? Workers comp doctors were wrong? Social security doctors were wrong? Stanton-Hicks was wrong? 10-15 other doctors...all wrong? I wish I didn't have RSD, but the fact is I do. And if I don't have RSD then WHY THE F%^K did he recommend a SCS? Oh, and he left out the fact that he said, and I quote, "The only two things I can offer you are the SCS and the Chronic Pain REhabilitation Program." So, if it's psychological, like he says, then why implant a SCS?

I was going to let it go, but after I saw his letter, I knew I couldn't. I called the office to complain, and the dingbat that I spoke with said I have the option of seeing another doctor. Really? I told her if he was the last doctor on earth, I would rather shoot myself in the head than have him treat me. Of course I know I can see another doctor. That's not the point, his malicious letter with two blatant lies and one clear omission are the issue.

Oh, and when I was talking to the snarky receptionist on the phone, she acted like she didn't believe me and was quite argumentative. I told her I want a retraction of that letter.

I stated that he neglected to put in the letter that he insisted that I needed an SCS. However, in the letter to my doc, he makes it out that I have psychological issues, not RSD. I told her that if the doctor that I was originally referred to didn't believe what I am saying, that it just so happened that I was so upset and frustrated by my appointment, that I actually wrote down my experience and posted it on the internet. Which, as you can see by my posts, I did right here on Neurotalk.

My comments were made BEFORE this doctor even faxed the malicious letter to my doctor. I told her, hey, I'm no psychic. I had no idea that this doctor was going to write a malicious letter to my doctor because he was upset that my opinion of him was that he was more interested in what he can bill my insurance than what actually works for me. I told her that I was looking for opinions of other patients regarding SCS, and looked at the National Institutes of Health to refresh my memory. This was all posted BEFORE that doctor faxed my doctor on July 2nd. There is no way I could have known. So, please explain how it is that this jackass tells me on 6/30 that he wants to give me a SCS, and I write about it ONLINE where I have zero control about time stamping and such, and then on 7/2 he faxes this letter with NO MENTION of SCS, and then adds two lies in there? OMG I can't even take it. I feel like my head is going to explode.

I'm sorry guys. I"ll stop now. /rant

Dear Grey,

I am sorry you are have so much trouble getting care right now. You can always request a copy of your record from the visit in question and see if it is accurate. It may be quite different than the letter. If it it's NOT accurate then within thirty days of the visit they can easily amend the record. You would need to send them a correction, Mark through inaccuracies etc. I have done this myself in the past when a visit record had mistakes. Then get that info in your current doctors record. This will trump the letter.

Exercise your power of choice and walk away from doctors whose care is not in agreement with what you feel is best for you. There will always be differences in approach and difference of opinion. I have had several doctors I have consulted that I just chose to never see again.

Also keep in mind that Recommendations change over time and many go to SCS much sooner and on more cases than ever before. For this reason I have avoided docs who specialize in mostly neuro modulation, feeling that their personal bias might be to steer me towards treatments I don't want. Keep up the search and don't settle. There is good care out there.

I hope you find relief soon! Sending Hugs, :hug:

Littlepaw, I called the office, and hope to hear back tomorrow. I am absolutely appalled at the letter he sent my doc. I bet he thought I'd never see it. Little does he know my doctor is on my facebook, and that my doctor has known me for years. I emailed my doctor, and explained bit by bit how his letter was completely false, and my doc agreed. He said most PM docs just want to do procedures and if you don't want it, they get angry.

I know he was angry, since I politely told him to his face he was only interested in money. I understand everyone is entitled to their opinion, and I'm fine with that. It is not ok to dislike my opinion of him, then send a malicious letter, with outright lies in it to my doctor. That crossed a line, in my opinion. I bet he thought I'd never know.

I have never called the medical board, and there are a few times I should have. At this point, I am beyond frustrated with all of them. I came on this site, frustrated, and vented to people who would understand. I could have easily spelled out in detail how he didn't even examine my physically before telling me he wacted to perform an unnecessary and invasive procedure on me. I could have given his name and warned the public. I could have given him negative reviews on every site possible. I didn't. Like I said, everyone has their own opinion. However, he crossed a line and outright lied in that letter. He omitted any mention of SCS. At this point, I am seriously considering publishing the latter, and letting everyone in every way possible, online and otherwise, know exactly what he said and did. I am still in shock, still angry at this blatant act.

Grey,

Sending a malicious, inaccurate letter is certainly inappropriate on multiple levels. I would encourage you to get the record, address any inaccuracies in writing (that request will go in your record) and THEN start process with your medical board if you decide to file a complaint. That is what they are there for and they do take investigations seriously. If record keeping is inaccurate, that alone is enough to get their attention even without the letter issue. My point is you have recourse for the issues at hand and I know you don't want to carry this stuff in your record (letter included) going forward.

:hug:

Littlepaw, thanks for the input. I am going to write it up today. I made a quick list yesterday, and there are 12 outright lies or inaccuracies. I just can't believe a medical professional would do something like this.

GreyStreet,

Your best course of action is what you are doing, writing an unemotional letter documenting all. Stress on unemotional. I mean flatline your emotions.

You have every right to be upset, but it won't help you if it comes across in your letter. In fact, it could cost you. Good luck.