Hi friends,

As some of you might know, I finally had an appt with a really good RSD doctor. My husband drove me from Rhode Island to southern Jersey (very near where I grew up!) to meet with Dr. Philip Getson. What an awesome man!!

After meeting with me and talking about my history for only about 10 minutes, he figured out the source of my RSD - Brachial Plexus nerve injury. And although the orthopedic surgeon I saw over 3 years ago when I hurt myself diagnosed an operable rotator cuff, in reality the tear was never big enough to have caused the pain that I had at the time or subsquent to the incident. (I hurt myself carrying a heavy workbag at work -one of those big boxy black ones- as a CPA, tossing up into the back my SUV at the end of a long, long day after carrying too far, too long, when it was too heavy, etc.... I should have been issued a bag with wheels by my employer. Amazingly enough, my employer did puchase some bags with wheels shortly before I was injured, but they were being given to new (young!!!) hires).

A simple arm test, if performed by my ortho surgeon, would have demonstrated that my right brachial plexus nerves were injured. A doc I saw in NYC a few months ago did the arm test and figured it out right away. Dr. Getson took the analysis even further, explaining how my muscles and the related nerve bundle were stretched and damaged the day I hurt myself. Even though I did tear my rotator cuff at the same time, it was a minor tear. Almost everyone has a tear in their shoulders by the time they are older and most people live with them just fine. The amount of pain I was experiencing was far in excess of what would have been justified by the rotator cuff problem. My problem, instead, has always been my brachial plexus nerve bundle. It resides in your chest and sends out tendrils like the rays of the sun to your arm, neck, face, trunk of your body, etc.

What happened next is a nightmare - horrible, aggressive PT by an Army reservist who hurt me way more than was reasonable, and which stretched and aggravated the brachial plexus nerves even worse, my liberal use of ICE to chill the pain, and then surgery because the surgeon said my pain levels were so high it was the only way to get better. And after that, the same thing happened all over again (aggressive PT and ICE) and I had a 2nd surgery a year later(same surgeon). Nerve testing performed between the 2 surgeries didn't pick up on the problem, but I was scared of the tests and was heavily medicated. Only one set of nerve tests have been ordered during the entire course of my illness.

I feel so, so stupid and so ripped off and so sad. The physical therapists who hurt me so badly all worked directly for my surgeon - he is the Director of PT for his group of orthopedic surgeons. He is also reputed to be the best shoulder guy in RI. So I trusted him and didn't seek a 2nd opinion. I was in so much pain I thought he must be right. I didn't hear the term "RSD" until a few months subsequent to the 2nd surgery.

Review of my PT notes reads like a definition of RSD for the 1.5 years I was under his care - burning, stabbing, throbbing, on fire. When you can't trust the best person in the State to take care of you (even if it is the smallest state in the country), what's left?? BTW, I wrote letters to the PT's, giving them links to the RSDSA.org, so that they would hopefully never do to another patient what they did to me.

So 3 years later I'm DESPERATELY waiting for WC court to PLEASE approve ketamine infusions so I can hopefully become well enough to go back to work.

I'd just like to know if there is anyone else out there that has a similar background like mine? Where have you have all turned under these circumstances? How do you ever mentally get over this stuff? As if that's not enough, I've been beat up by WC ever since the RSD diagnosis was made.

I am trying Mindfulness. Trying. My appts. with a shrink were cut off by WC, but in the 10 appts that they let me have I did learn about that.

Sorry this is so long. Another one of my rants.... as always, thanks for listening.

XOXOX Sandy

I've never dealt with WC but have a friend that did. He got his arm ripped off at work and his guts ripped out. He's had over 80 surgeries to keep his guts in and has a prostetic arm and WC still took pictures of him messing around in his garage. When Troy's case showed me how cold WC can be.

I have had TOS surgery and 2 rotator cuff surgeries. The first Orthopedic surgeon didn't do the surgery right. The second was great but I was able to tell him exactly where to go in at and he did. I really don't know if a small tear could cause major problems. I was worse off after the first surgery.

I also had an Osteopathic Dr. that popped my bones and made me so much worse. I talked to several lawyers and they said my case was too complicated for them to handle. They also said that it's harder to sue Drs these days. I believe that.

I do with RSD we do get some bad Drs. along the way due to them not diagnosing us right. I also wonder if they want to diagnose us because they know that the surgeries are not good for RSD patients. At the time I had some of my surgeries, Lidocaine wasn't used for RSD and a lot of Drs. didn't know about blocks. Now I believe the hospitals are hiring better Anesteologist who know how to do blocks.

When I got a hold of a bad surgeon, I started looking for one that was a better one. You learn as you go.

I do believe that some of the TOS Drs. in Denver knew I had RSD and didn't want to say so. They were going to do surgery on me knowing I had it and my PCP called them up and said no way.

It takes time to get over how they treat you. I was so angry at a lot of the Drs. I saw that I took the anger out on others. It took a lot of councelling to calm me down to where I could go at getting Drs. the right way.

I am sorry to hear that you have went through this. As I said though, we hear it over and over about those lousy Drs. out there. Way too many.

Ada

Sandy,

I think that quite a while ago, I mentioned to you that you should have TOS ruled out.
All that pain in your head, and neck. Well the brachial plexus is where TOS is centered, your new doctor may not have said TOS, but, that's what he diagnosed! (Not being an "I told you so", but glad you have a dx now!)
My TOS is centered around the Scelanis Anticus (sp) muscles.

And of course you now know, (I went through 7 years of it), that NO STRENGTHENING exercises with TOS! You don't do that to muscles that are already in Spasm! Gentle stretching is about all you can do, and use a good professional heating pad for your shoulders. Lidocaine patches help me, but I have neck discs too.
Since it is a "Syndrome" it's like rsd, not all the same. Did he send you to a good hand surgeon? I doubt ketamine will have any effect on the brachial plexus injury. Which, is what I've come to know as "TOS"...

Ortho's have No Clue about this stuff. I've seen more than 50 of them (literally), and none had a clue. It's NOT an ortho problem!
I had one tell me I was malingering!

Sandy, I hope you do some more reading in the Thoracic Outlet Syndrome section on this board!
I'm sorry that you have this, but, now that you know, you'll find ways to deal with it...

Oh, about your question. I don't know that there's much you can do, but look and move forward. Like I said, it took 7 years to finally get to Dr S, and a dx. Some have it worse. But, I'm happy to see that so many folks are getting dx'd in shorter periods of time. Still not short enough, but... These Ortho's should send their patients to Neuro's instead of Psychs.

BTW, was the hand/arm test the one I've been describing to many folks here? Hands up, shoulders back? Watch your hands turn white? (Over simplified).


Pete

Dear Sandy -

So very sorry this was the news. I suspect it's not all that uncommon, just not everyone finds out. I had a very similar thing happen, I was kept in optional casts (for the treatment of torn but not severed tendons on both feet weeks, courtesy of a "personal trainer" at the gym who put me on a machine that, I was told, people with flat feet have no business using) well after the pain became unbearable. In the doctor's defense, however, he sent me to someone who was (then) regarded as one of the top pain specialists in Los Angeles, who didn't say a word about RSD. In fact, the first I heard it mentioned was by a rheumatologist two days before the lasts of the casts was to come off.

So with the referral to the pain dr., my orthopedic surgeon honestly and legitimately covered his rear flank, so to speak: his was entitled to rely on the pain doctor's opinion regarding any questions related to RSD. This was true even as I learned 18 months later from a hot young orthopedic surgeon that the emerging standard before any immobilizing surgery, e.g. of the ankle, is to put the patient in a test casting in the anticipated immobilized position and if any pain cuts in, s/he is given a number to call 24/7 to have it removed.

The only lawsuit I filed was a products liability action against the manufacturer of the gym equipment, and that I dismissed at the close of discovery, when the defendant's representative provided a sworn statement that it had no knowledge of any prior claims of injury relating to this machine, and, indeed, none were on file with the Consumer Products Safety Commission. And I couldn't sue the gym or the trainer because, against my better judgement (but upon the cajoling of significant others, to the effect that the only way to get along in this world "is to play by their rules) I entered into a waiver and release agreement that is fully enforceable under California law.

And the pain doctor? He was a nice guy who had taken over my treatment in an agressive (in a good way) fashion as soon as he heard the suggestion of RSD, and continued treating me for serval months before accepting an out of state academic position. And as I learned in first year torts in law school, except for those victims of truly bad actors, the single most important variable in determining whther a patient files a medical malpractice action is "bedside manner." And my pain doctor had it in spades. So having just folded my tents on the product's liabilty action, I didn't have the stomach to go after him, especially where, at the end of the day, a significant portion of the recovery might be subject to the claims of my health insurance company, under a doctrine called "subrogation." That and my wife's employer, has significant (and delicate) business dealings with the hospital that hosted the pain management practice at issue.

Now, I have ZERO idea what Rhode Island law is on the point, but under CA law, whatver the applicable state of limitations is, it generally doesn't begin to run (it is "tolled") until the patient knows or should have known that malpractice occured. Which in your case will hopefully be found to be the time you met with Dr. Getson, although one or more defendat may argue that your were "on notice" as of a substantially earlier date.

To that end, were I in your position, I would start talking to as many good medical malpractice lawyers as soon as possible, where the time to act after obtaining actual knowledge may be relatively short, and a defendant may be pushing for an earlier "notice" date in any event. And remember, since these actions are almost always taken on a contigency basis, with the lawyer paying for "costs" along the way - primarily paying for the time of expert witnesses in one capacity or another - they tend to be highly selective, wanting only cases that are sure winners. So the first guy may not take you, but the sixth might. In other words, with a clock ticking (and the first thing you have to find out is how much time you have to file any lawsuit, which will be complicated if any defendant is a public entity, like a state/county owned hospital) you may very well need to get started beating the bushes in fairly short order.

I don't mean to come across as too pushy, but this does seems to be the next logical step, given the facts as you have laid them out. Please let me know if I'm missing anything here.

Mike

Sandy, I sure can relate. I injured myself at work with torn tendon(a common injury) After vigorous PT my elbow swelled again with new swelling. I had EMG's and ortho said pinched nerve even though negative. Did surg on both started therapy again-this time i made sure i didn't let them get too aggressive, but wasn't getting better. PM diagnosed with RSD immediately. Ortho still disagreed. Another EMG(4 now) and that Dr said its RSD & since its over a year-it's chronic. Now it has spread to my feet. I like you, felt angry, sad, mad at myself... My w/c won't pay for psych.(how did u manage that) so i am paying for it and i have really learned a lot of how to accept and acknowledge feelings. Now pm dr. wants water therapy and w/c won't pay for feet b/c i only injured my arm. This is going to be a long road, but having people here to talk with has really helped me too. momof4

Thanks Pete and Mike-

Pete - that particular test does not make my arms turn colors. Its was a very different strength test that the doctors used to determine my injury - it was pretty complicated and I can't really remember how I did it. And Getson does beleive that the ketamine will work for me, primary because lidocaine treated the RSD pain so well in my leg, and has reduced my symptoms in other areas. I am better after it than I was before it. All I can do is try. Thank you though for your input and for your friendship since I have joined the board. We are so similar with the head pain. Does loud noise hurt your head? And do bumpy car rides make you nuts?

Mike - Subrogation will go to my WC. After 2 surgeries, 8 SGB, 4 lidocaine infusions, and 3 years of meds I'm sure I'm up to $50,000. And I have 3 years from when I should have known. I think that's when I talked to Getson. My original ortho doc was the guy did my QME (or whatever they are called for WC purposes) and had guilt written all over his face. Talk about a painful meeting for me. My attorney, who is a very, very good one, wanted me to go this particular ortho surgeon because he is known as the best in RI and my WC insurance company uses him. All I could think of at during our meeting was that he could have said he was SORRY for wrecking my life. It would have gone a long way. His bedside manner is the pits and always has been - I've never met a patient who likes him. But I think my attorney hoped that his guilt would prod him into making a good decision on my behalf. He did determine that I have lost 7% of the use of my arm (3% due to pain). My RSD was recognized. In RI that is worth a whopping $1,965. Whoohoo! So to put it in perspective, the amount that RI law says is due to me because I have suffered an injury in my workplace and should be compensated for that loss is $1965. That approximates one quarter's property taxes on my home. RI law for WC victims is just awful.

WC court is next. Thanks for the advice on the malpractice. I sincerely appreciate it.

XOXOX Sandy

Oh Sandy.
I feel very badly for you.
Was the test painful? That's a generalization, but, it's your hands that would lose color, not your arms. (Not important now). I simply got so good at it, being hospitalized by Dr S., he trooped a dozen med students into my room twice a day, to show them. (Maybe they don't even use that test any more).

I'm sure glad that Dr Getson thinks the ketamine will work well for you! I simply thought it was more for rsd. I've had lidocaine, never had ketamine.

What's happened with my brachial plexus injury, is some muscles have atrophied, as Dr S told me they would, so some of the pain has reduced on it's own! Sudden loud noises, or sustained loud noises hurt my head, and yes, bumps do too! But, less so than 20 years ago.
It's another terrible kind of pain, and, in fact it's what caused my rsd as well.
The headaches are horrific! Using my arms overhead, or for any strength things, triggers headaches. I can carry heavy shopping bags, if I let them "hang", using only my fingers.

You're in my thoughts and prayers, Sandy!
I'm happy you've found some direction with Dr Getson!

Pete

Dear Sandy,

I hear share your anger and frustration and continue to try to deal with my issues over the treatment I received form my orthopedic surgeon too.

I'm a bit too tired tonight to go into the history of my failed bunion surgery and the legal mess that created but be assured Mike is right on many points.

Studies are showing that the bedside manner of a doctor does in fact make a difference between whether or not patients seek legal remedies following failed procedure. I recall reading in an article sometime last year in an AMA journal that a simple apology from the doctor would reduce the frequency of legal actions against a doctor. The discussion that took place in the article was whether or not one would be opening themselves up to liability if they were to do so. Clearly the laws of various States and Countries will affect the outcome of a doctors ability to make that admission or not.

Just reading that article brought terrible memories flooding back into my mind of my treatment from my orthopedic doctor. He actually said to me that I had "won the lotto" calling me a slow healer while telling the PT (in writing) that I had mild RSD without explaining what RSD was to me. Have you ever heard of mild RSD? Despite his knowledge that I had in his mind a case of "mild" RSD early on and not disclosing that to me he still insisted that I iced my foot and did not refer me to an appropriate pain management doctor until it was too late. When I think back on it I cringe with every thought of it and have to try to go to my happy place.

I learned a huge lesson from my situation. Malpractice attorneys urge patients to sue doctors - sometimes for legitimate reasons, sometimes for unavoidable bad outcomes. I should have been more careful in selecting my attorney. Just because he believed I had a case did not make him the right one to present it.

Ultimately had to drop my legal action, I lost my job and face each day with the knowledge that I am here on my own to fend for myself. No one wants to pay for the misfortune of a bad surgical outcome, regardless of the liability. They all wanted to wash thier hands clean and did not want to honor their commitment to me as an employee or to my payments made to a disability insurance plan that they funded through a 3rd party insurer.

Those of us with RSD are considered bad long term liabilities and companies that have to deal with us want us off their books. They will do everything within their power to remove us from the financial picture of their obligations and that includes WCB.

For the sake of my health I decided to simply try to move on and forward.

I wish it were that easy but it is not. There have been a couple of occasions that I have seen this surgeon in the Surgery Day Care where I have to go for my lidocaine infusions. Each time I've seen him my blood pressure rises very high. It's a good thing I'm not a violent person. When I see him I have to retreat to my happy place with lots of deep breaths and try to find major forgiveness in my heart. It is the forgiveness that is the hardest to find but I'm getting there.


MsL

Dear Sandy,
I've been away from the boards for a couple of months due to overload of *stuff* in my life...I was also staying up too late researching the 'net and the boards and not being able to fall asleep.....

I had followed your posts through the months from when you were still working and how more difficult it was becoming for you.. always heeding your words, 'don't give up..'

I, too, hold much anger toward my ortho foot surgeon who continually didn't take me seriously when I repeatedly told him the post-op pain, burning and redness were bad, bad, bad. His three-minute appointments were more obligatory than investigative. I won't go into the detailed history of my WC left foot injury/surgery (two severed ligaments which took with them two hunks of fibula..the surgery reattached the ligaments and the bone pieces were removed) but it's been a wild ride with many boulder-sized, and humiliating bumps in the road.

Despite my constant complaint of post surgical pain, swelling, couldn't bear weight, etc; I was told "oh, it'll get better." In june of 2008 I diagnosed MYSELF and asked the ortho doc if I had RSD? He replied , "No" and I continued to ice, ice, ice and wear a tight brace so that I could walk! Finally, in August he said, "You have RSD..'
I wanted to reply with a few explicatives..such as "Yes, $%*&^%*# I've been trying to tell you that for months..." (I had the surgery in Feb. 2008 - was injured in Aug. '06))
He transferred me to a pain management doc (not his regular one...Hmmmmm) and she wasn't an anesthesiologist. Then he took me off his books..no more appts.
Of course, as with all of us, there are so many details and frustrations to our stories.
I am still working full time ( gotta) and now must use a mobility scooter (I have an automatic lift in the car) for any walking beyond 50 - 100 yards, because of the pain and burning in both feet/legs.

Sandy, where do you/we put the anger, sadness, frustration..first, that all this happened to us in the first place, and second, that our treatment wasn't always optimal.....
i am glad to hear you were able to have some training and introduction to mindfulness..the powerful emotions are somewhat neutralized with relaxation technique, breathing and perspective.

Sometimes the anger wells up and I want to run, and I can't..
I fear the future, the pain, and whether I'll be able to continue working (I must work!) and whether spread will continue....and how I'll be able to care care of 97 year old mom.....and the WC battle...I am trying to get a referral to an anesthesiologist...I have still not been treated by one..
I want to explore lidocain infusions, bier blocks, and even ketamine infusions but have been told that WC would never approve these....
I try and not "catastrophise" ...it's so hard not to..
..one day at a time...
I know you want to get back to work and that you have two children to whom you want to give your guidance and your best...Sandy, i know your frustration is immense...

What 'maintains' my sanity is to try and keep a mindful/philosophical perspective..but I must be a warrior and be ready for battle....
All I really want to do is go for a long, long walk amongst the trees....

Dearest friend, I am thinking of you
hope4thebest xoxoxoxoxox

Point well made! Thanks.

Mike

ps For a forthcoming article by Lance M. McCracken and Sophie C. Velleman, Psychological flexibility in adults with chronic pain: A study of acceptance, mindfulness, and values-based action in primary care, Pain 2009, check out the atttached.

I'll put it and another article to be published in Pain, Robert Schütze et al, Low mindfulness predicts pain catastrophizing in a fear-avoidance model of chronic pain, which is too large to actually post, in a proper thread later in the day. But here's its abstract in any event:

The relationship between persistent pain and self-directed, non-reactive awareness of present-moment experience (i.e., mindfulness) was explored in one of the dominant psychological theories of chronic pain - the fear-avoidance model[53]. A heterogeneous sample of 104 chronic pain outpatients at a multidisciplinary pain clinic in Australia completed psychometrically sound self-report measures of major variables in this model: Pain intensity, negative affect, pain catastrophizing, pain-related fear, pain hypervigilance, and functional disability. Two measures of mindfulness were also used, the Mindful Attention Awareness Scale [4] and the Five-Factor Mindfulness Questionnaire [1]. Results showed that mindfulness significantly negatively predicts each of these variables, accounting for 17-41% of their variance. Hierarchical multiple regression analysis showed that mindfulness uniquely predicts pain catastrophizing when other variables are controlled, and moderates the relationship between pain intensity and pain catastrophizing. This is the first clear evidence substantiating the strong link between mindfulness and pain catastrophizing, and suggests mindfulness might be added to the fear-avoidance model. Implications for the clinical use of mindfulness in screening and intervention are discussed.

PMID: 19944534 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/sites/entrez

Attached Files

Psychological flexibility in adults with chronic pain - A study of acceptance mindfulness and va.pdf (153.2 KB, 1079 views)