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-   -   How do you deal with finding out the Ortho made a mistake? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/110028-deal-finding-ortho-mistake.html)

SandyRI 12-09-2009 04:42 PM

How do you deal with finding out the Ortho made a mistake?
 
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

dreambeliever128 12-09-2009 06:11 PM

Hi 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

AintSoBad 12-09-2009 08:42 PM

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

fmichael 12-09-2009 09:06 PM

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

RNcrps2 12-09-2009 10:09 PM

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

SandyRI 12-09-2009 10:13 PM

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

AintSoBad 12-09-2009 11:23 PM

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

Mslday 12-09-2009 11:43 PM

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

hope4thebest 12-10-2009 02:58 AM

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:hug:
hope4thebest xoxoxoxoxox

fmichael 12-10-2009 03:27 AM

1 Attachment(s)
Quote:

Originally Posted by Mslday (Post 598280)
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.

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

dshue 12-12-2009 09:16 PM

Sandy --

It just sucks when the doctors you desperately go to, seeking relief, are the vehicle to making your situation worse.

I imagine that many people reading your post have had similar experiences, and I know that in my case, I was incredibly aggressive in seeking out treatment (you tend to do that when your body is on fire), and along the way either testing or treatment by well regarded doctors has made my own situation worse. Indeed, I'd be better off today if I had simply done nothing.

So I commiserate.

The first week of January I'm scheduled to see the same Dr. Getson. I too am originally from that area (there's no escaping home it appears). He does seem to be spoken well of, at least here.

I'm curious to know what you're planning to do with him now. If you discussed getting any ketamine treatment, did he go into detail about where he does any infusions, his fees, or the like?

That is why I am going to see him. Any information you might be able to share would be helpful.

Thanks.

SandyRI 12-12-2009 10:31 PM

Dear DS Hue,

I'm happy to share whatever information I can. Alaska49 helped me out with info when I was planning to go, too - he's been going there for a while and loves Getson.

Where did you grow up? I'm from Haddonfield. One of my brothers lives 10 miles down RTE 73 from Getson's office in Erial, NJ. The whole area around his office is so different I didn't recognize much. The circles are now huge intersections instead the old wild free for alls...I can't remember if the one by his ofice was the old Marlton Circle or the old Ellisburg Circle. Probably Marlton... We came in from the shore off of the AC Espressway instead of the way I would have come if coming from my old house.

Anyway, I prepared my own package of medical documents to submit to his office in early October. It included all the records from my doctors since I was diagnosed with RSD, starting with the surgeon, the PM, the a new PM I switched to in Boston, my PT, a rheum consult I had, a neurology consult, my PCP papers, and lab and MRI results. I also took the time to summarize on a month by month basis the changes that had been occurring to my body over time and with changes in weather, meds, treatments, etc. I prepared a timeline, at his office's request. I sent him the $400 check required, I am hoping it might be reimbursed from my insurance company.

I met with him for one and a half hours. His observations regarding my posture, the slant that is starting to develop on one side of my face, and the areas of my pain and spasming were just so interesting. I feel like I have wasted a year of my life slepping around RI and Boston with amateurs because this guy REALLY cares about what he does and he's passionate about discovering exactly what's wrong with each patient, and everything he said just made so much sense! It's like somebody finally CARES and FIGURED it out!! It's so wonderful to finally find out what's really wrong, but devastating at the same time because the consequences of what went wrong are so tramatic for me.

Anyway, Getson's report for my WC lawyer was in my hands in a week. It's in extremely good shape, a few typos, nothing bad. It's hand's down the best report that I have gotten from any practictioner to date in regards to its completeness, the depth of it's analytic data, etc. He did a really good job.

Getson's ketamine infusions are performed in his office. His office is in an office building next to a full service hospital - I think its called Ventura. I know my grandmother was in that hopsital once a long time ago, it had a different name then. The room the infusions are performed in has lounge chairs all set up so the patients (maybe 4 or 5) are together, instead of all separated in rooms and by themselves alone. I'm a little concerned about the chairs since I can't lean back against my head, I can only lay on my side...anyway, he has infusions nurses to take care of you. It costs $1200-$1500 a day, in advance.

I need WC to pay for my ketamine. I arranged for his report to be faxed late Friday afternoon to my attorney's office. I am assuming there will be a court date. I understand that my WC carrier has denied all everything so far for me case, but I've gotten my meds, my docs, my treatments anyway because my lawyer has been able to succeed on my behalf for me in court. But this is new, and ketamine is still deemed experimental despite Dr. S.'s latest reports, so who knows what is going to happen. I am very very terrified of what may be decided.

I can start getting ketamine in Febr according to his schedule if the courts order the insurance company to pay.

Getson's report stated that I have an 80% of getting better on ketamine, and in his opinion, it is the only treatment option for my RSD, follow by occupational therapy, that he recommends at this time. He is also stated that without ketamine I will be completely incapacitated, disabled and unable to return to work for the rest of my life.

I've had a tough time with that one.... I have worked since I was 14 years old, often at 2 jobs. During busy season as a CPA I have worked 40 straight days, logging over 300 hours of OT. I am only 49 now, and I think I deserve a chance to get better. In the long run, despite the cost of ketamine, I think the numbers would still make sense. My meds are really expensive on a monthly basis.

If I think of anything else I will let you know.

XOXOXO Sandy

CZZ74 12-13-2009 11:36 AM

Sandy, hi
 
Quote:

Originally Posted by SandyRI (Post 598159)
Hi friends,




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.


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'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?



Sandy, what a horrible ordeal. I have read of many people here who have had nightmares with WC. Mine was an injury from negligence, however , not involved with work. However we have similaraties.

The ortho surgeon who eveentually ended up treating me for six weeks. and who I went on an on about the burning pain thinking I must have bone cancer or something, never diagnoside rsd. Only to find out a year and an half later, like you- after the wrong type of physical therapy has caused my rsd to spread and worsen, I found out that this ortho was very famililar with rsd and had referred many patients to the doctor who did finally diagnose me. Can you belieive it? Why didnt he send me.

Because he wanted to get max benifit from treating me for the fracture and milk my insurance company. I also want to mention that this doctor was, yes was, a close family friend so we really trusted him.
When he found out later I was diagnoside by the doctor that did- he said oh yeah , thats where we send all our patients who dont stop complaing. to this day i can not belieive he let me suffer and that his is a huge reason mine went full body so quickly.

I have to tell you I dont think Ill ever get over that he could have had me in treatment in the 6 month window.



Having shared that may I say I am so glad you have found dr. getson. I have read only wonderful things about him. I do hope you willl be able to start the ketamine infusions. I have posted previously about this but my alloydina was so severe mentally i really did not knw how much more i could take. What years of ketamine infusion did for me was greatly reduce my alloydina .
I highly recommend infusions for this.


My insurance paid for it all. I did have to prove that there was no physican within network to preform the treatments. that was it. I never spoke directly with my insurance company. Carol in Dr. S's office did it all. and good thing she did, I was in no condition to handle anything like that. since wc seems to stall and take so long for most people on here, Is there any possibliity your insurance will help. ?

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.



Also conincientally, dr. s diagnosided the rsd in my brachial plexus on my first vist, I was not even aware of it I was so intensely focused on my leg, my orginal injusry sitie.


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.




In hoping to go back to work.. well i did everthing i have done with that goal, the three years of infuslons, three 5 day sets i ICU and the coma. I have not been able to return, Yet i try eveything new if I can afford it.
Mentally it has been almost impossible for me to forgive some of those that played a role in what i went through.
My therapy had so many more important goals. Like how to mentally survive the pain, the loss of identity, being a burden on others after being so independent my whole life. I am still in therapy. i could nto have made it with out the therapy especially after almost dying in Germany.

I hope some of this information will help, especially trying directly with your insurance company.and I will have in my prayers that you are able to get the infusions Sandy, they really do help so much and maybe they will help you enough to go back to work. I hope so.

thank you for giving me the opportunity to share my story too. Let me know if you have any questions about the infusions, Id be happy to help. my very best to you, cz

Sandy, sorry I had a hard time getting quotes from your post in the right place. Hope my reply isnt too confusing!!:)

SandyRI 12-13-2009 12:39 PM

Dear CZ,

Thanks so much for sharing with me. Are there any other good sources of information that you have about the brachial plexus RSD? I am curious to learn more about it if I can.

Never give up. You are clearly an extremely strong woman, a survivor, and while 3 years is an incredibly long time during the days as we are living it, hopefully someday it will be an insignificant fraction of our total life. (think high school - 4 years - a significant experience, yes. But now equal to only 8% of my total life).

I pray that you are feeling relief from your lesions all the time. Your posting had a big impact on me and likely many others too, I am so sorry that your feelings were hurt that we didn't respond. I truly hope you are feeling better.

Peace and love, XOXOX Sandy

allentgamer 12-13-2009 03:55 PM

This is something I had wrestled with for a few years, and your right it is a hard one to get past. My whole ordeal started with a doctor making a mistake. Before this I was in the gym 4 days a week, and working in a career sent from heaven.

It took this guy one oops, and life was forever changed. I knew I had to forgive to get passed it, but it was the hardest thing in the world. But if you keep those feelings it will cause more damage than the damage already done. It doesnt mean you have to like the person, just means you forgive so you can move on with your life.

It took almost 4 years to find out what exactly was wrong with me, and once it was explained, I was devastated to find out that he knew the whole time. They could have started treatment right away but denied everything. This news was almost worse than the actual physical damage.

Hopefully you can find an attorney and do what I couldnt. They should never be able to avoid the penalty for hurting someone, then avoiding or side stepping the problems they caused. I will be praying for ya :winky: :hug:

fmichael 12-13-2009 06:26 PM

Quote:

Originally Posted by allentgamer (Post 599377)
It took almost 4 years to find out what exactly was wrong with me, and once it was explained, I was devastated to find out that he knew the whole time. They could have started treatment right away but denied everything. This news was almost worse than the actual physical damage.

Allen -

To call that outrageous would be an understatement. If it's not too late (and you would have to discuss that with a med mal attorney, if you haven't already filed suit) your old doc could be looking at some serious punitive damages: the sort of thing that his malpractice insurance doesn't cover, but could never be discharged in bankruptcy so long as you took appropriate and timely action upon being notified of the commencement of a case, etc., etc.

Mike

fmichael 12-13-2009 06:52 PM

Quote:

Originally Posted by CZZ74 (Post 599302)
The ortho surgeon who eveentually ended up treating me for six weeks. and who I went on an on about the burning pain thinking I must have bone cancer or something, never diagnoside rsd. Only to find out a year and an half later, like you- after the wrong type of physical therapy has caused my rsd to spread and worsen, I found out that this ortho was very famililar with rsd and had referred many patients to the doctor who did finally diagnose me. Can you belieive it? Why didnt he send me.

Because he wanted to get max benifit from treating me for the fracture and milk my insurance company. I also want to mention that this doctor was, yes was, a close family friend so we really trusted him.
When he found out later I was diagnoside by the doctor that did- he said oh yeah , thats where we send all our patients who dont stop complaing. to this day i can not belieive he let me suffer and that his is a huge reason mine went full body so quickly.

I have to tell you I dont think Ill ever get over that he could have had me in treatment in the 6 month window.

CZ -

Please see my comments to Allen, above. That you both share this hideous detail is mind blowing. I am so sorry.

You would have to check with a med mal attorney in your state regarding whether a claim is time barred, but if it isn't, I have some doubt in my mind as to whether an award of punitive damages could be subject to subrogation in the first place. You might want to have that checked out. That is, if you are in a position to accept the stress of litigation that could easily turn into a prolonged knife fight.

Mike

ps For the record, this is officially my 666th post on NeuroTalk. (I knew I could feel the horns trying to poke through.)

AintSoBad 12-13-2009 07:22 PM

1st Accident= T-Boned by a Tractor Trailer, (I was in a pickemup) and the frame of MY truck was BENT like well, bad!
A frame goes straight, mine went like sort of a little 'U'. Also the TTrailer could not be driven from the scene.
WE made the News!

I went 7 years with No DX! (Oh, I'm sorry, Severe Strain and Sprain).
I went to the Dr Who was on the Cover of the Phila/Inquierer, Sunday Paper, he did all the work for our wonderful, Phila. Sport Teams! Dam, did he do an exam on me! He picked and poked at my spine (where most of my pain centered @ the time), and told me. "I don't know what you have. But, it's not operable, It's All microscopic. I can see how your back, your nerves, your flesh all respond to my stimuli! You cannot be fixed! I'm so, so sorry. He was a great man. He did advise some PT, and a TENS unit. And followed up. But,
he was an Ortho!
It's just not within the realm of these folks training!
They need to learn, how to hand a situation like ours off, to a Neuro. But, I don't think they trust one another?
I don't know?


The first thing that my next doctor noticed, (Once I was smart enough to get the heck away from Ortho's (my fault, or theirs? ) I heard Thoracic Outlet Syndrome, "TOS".
Which, is exactly what you're all talking about. Barbaric tests! OMG, you wouldn't want to go through them!
"Brachial Plexus" IS a form of TOS = Thoracic Outlet Syndrome!" Right?? Do we all get that??
Or, does someone still think I may be wrong? (I'd much rather that you tell me!)

Saw over 100 doctors. LITERALLY! These were the days in PA where we had unlimited from our Auto! Didn't hafto OK anything , and the docs turned into (A Bad Word). Just Sign Here. coverage.

Got to the point, where I refused to sign!
NO, you're not gonna waste MY time, and Bill my Ins Co. for it!
(None of those jerks EVER chased me)~!
(Why, or how could they?)

Weird thing, Nationwide and to a lesser extant, State Farm lobbied this bill in. And, then just as quickly lobbied it out.
If, for an instant, you don't think BIG BUSINESS runs this country, Get a Bat, and Hit yourself in the Head! Lightly!
Because the other side is WORSE!
(Why did this Happen? ((Michael?))
It's my position, that, the ins. Co's thought they'd wrap it all in under the WComp laws! Nope! Didn't quite work out that way!
HIT REVERSE!




Great to have you great friend, to rant (speak) to!!!!


love,

pete

AintSoBad 12-13-2009 07:25 PM

Quote:

Originally Posted by fmichael (Post 599419)
CZ -

Please see my comments to Allen, above. That you both share this hideous detail is mind blowing. I am so sorry.

You would have to check with a med mal attorney in your state regarding whether a claim is time barred, but if it isn't, I have some doubt in my mind as to whether an award of punitive damages could be subject to subrogation in the first place. You might want to have that checked out. That is, if you are in a position to accept the stress of litigation that could easily turn into a prolonged knife fight.

Mike

ps For the record, this is officially my 666th post on NeuroTalk. (I knew I could feel the horns trying to poke through.)


OMG!
A Man of the Lord, (Or at least NOT of Satan)

And, an Attorney as Well!!

The World is Definitely getting Better!

Thank YOU, Mike!



Pete
asb

AintSoBad 12-13-2009 07:34 PM

BTW,

I'm going toward 27 years of this
TOS.
Herniated Discs. Upper
Herniated Discs Lower
TBI (Traumatic Brain Injury)
Migraine (Headache)
Carpel Tunnel
Ulnar Nerve
Sleep Dis, Trans, (Transomnia) "can't' sleep, can't stay awake."
Vertigo
Post Traumatic Concuss.Syn.
Epliepsy, Traumatic
RSD Upper
RSD Lower
RSD Other
and my favorite due to meds.....
Constipation....


There are several more, that he doesn't check off,
He knows they're there, as do I.

I suppose as he doesn't want to depress me any more...
He's got it all in his reports, and office notes....



Pete
asb

AintSoBad 12-13-2009 08:04 PM

Quote:

Originally Posted by AintSoBad (Post 599433)
BTW,

I'm going toward 27 years of this
TOS.
Herniated Discs. Upper
Herniated Discs Lower
TBI (Traumatic Brain Injury)
Migraine (Headache)
Carpel Tunnel
Ulnar Nerve
Sleep Dis, Trans, (Transomnia) "can't' sleep, can't stay awake."
Vertigo
Post Traumatic Concuss.Syn.
Epliepsy, Traumatic
RSD Upper
RSD Lower
RSD Other
and my favorite due to meds.....
Constipation....


There are several more, that he doesn't check off,
He knows they're there, as do I.

I suppose as he doesn't want to depress me any more...
He's got it all in his reports, and office notes....



Pete
asb


Now Folks,
You tell me, (this is not a test),
just off the top of yer head, which of these DX's would you expect an Ortho to be able to diagnose within that first month or so,, When he sends your for tests, XRays, MRI's, CTScans, and etc...
Which ones of those that I've listed, would expect an "Ortho" to Diagnose, from those "Tests"?

Another Question....

Which, would you expect him to order MORE test from?
Of those not so "Crisply Ordered?"
Or,
would yours, just put it in your file,
and "Let it sit" GRrrrrrr!!


My love for now.....

Pete

asb

dreambeliever128 12-14-2009 04:48 PM

Hi Pete,
 
It's good that you have a good Ortho. that has diagnosed all of these issues and helps you with them. My PCP does that but as far as the Ortho's around here, they do good to diagnose that you were in their office much less what is wrong with you. I do have a good Ortho that did my second rotator cuff surgery and did great but as far as diagnosing other things. I doubt it.

My smartest Drs. that I have had was a hand surgeon that seemed to know about everything, he's retired and my PCP that what he doesn't know, he'll learn. 2 out of over 50. Not bad, huh. LOL

I like my TOS surgeon, he's retired now but he was great with TOS. That was his speciality. I like my hand surgeon I have now. Again though he only has the speciality of knowing hands.

We are very lucky when we find a Dr. that is diversified and willing to learn and willing to help us with anything going on but they sure don't grow on trees.

Ada

Dubious 12-14-2009 10:55 PM

Having expressed my inciting CRPS event as being surigcally-related to several ortho's I know, the response back was "if the CRPS followed surgery, it more than likely (but not conclusively) was related to a screw-up."

I tend to agree...

CZZ74 12-16-2009 10:42 AM

Quote:

Originally Posted by SandyRI (Post 599321)
Dear CZ,

Thanks so much for sharing with me. Are there any other good sources of information that you have about the brachial plexus RSD? I am curious to learn more about it if I can.

Never give up. You are clearly an extremely strong woman, a survivor, and while 3 years is an incredibly long time during the days as we are living it, hopefully someday it will be an insignificant fraction of our total life. (think high school - 4 years - a significant experience, yes. But now equal to only 8% of my total life).

I pray that you are feeling relief from your lesions all the time. Your posting had a big impact on me and likely many others too, I am so sorry that your feelings were hurt that we didn't respond. I truly hope you are feeling better.

Peace and love, XOXOX Sandy

Sandy you are so special, thank you.
I am looking for good information on brachial plexus for you, orginally i found the most helpful information from people on the TOS site here, It is so similar.
I will get back to you will other helpful site, and again thank you so mcuh. Sincerely,cz

Sandel 01-11-2010 04:42 PM

Quote:

Originally Posted by SandyRI (Post 599321)
Dear CZ,

Thanks so much for sharing with me. Are there any other good sources of information that you have about the brachial plexus RSD? I am curious to learn more about it if I can.

Never give up. You are clearly an extremely strong woman, a survivor, and while 3 years is an incredibly long time during the days as we are living it, hopefully someday it will be an insignificant fraction of our total life. (think high school - 4 years - a significant experience, yes. But now equal to only 8% of my total life).

I pray that you are feeling relief from your lesions all the time. Your posting had a big impact on me and likely many others too, I am so sorry that your feelings were hurt that we didn't respond. I truly hope you are feeling better.

Peace and love, XOXOX Sandy

Hi Sandy..
Quote:

Originally Posted by SandyRI (Post 599321)
Are there any other good sources of information that you have about the brachial plexus RSD?

..ask and you shall recieve.

Atypical Chest Pain: Evidence of
Intercostobrachial Nerve Sensitization in
Complex Regional Pain Syndrome

http://www.facebook.com/pages/RSDCRP...9be31b281a6e48

be well,
Sandra


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