[SandyRI]

Hi all,

As some of you already know, my husband and I had a disastrous experience at the BI, a large, well known, highly respected hospital in Boston last month, where I had been referred for their ketamine program. My referral was from a doc that had been treating me for over six months who's with a smaller Boston hospital (St. E's. ) that is really good, but has limited resources. He's seen me at my worst when I go in for my SGB - in terrible pain, all rashy, extermely high BP, etc. (I always flare when I go there because I'm a wimp, for me the stellate ganglion blocks are a very painful and scary procedure). Obviously, my referring doc knows I have RSD, he's seen the evidence of it many times, and wouldn't have referred me for ketamine if he didn't think it was appropriate. And, I had been diagnosed by 2 other docs prior to seeing him.

I was informed after my appt. by the manager of the Pain Clinic at the BI (when I called to complain to someone about my treatment by the doctor I saw), that when they contacted WC for authorization for my appt, WC had told them they would only pay for me to see a certain doctor in RI for my RSD and no-one else. So the BI sought authorization for my appt. from United Healthcare.

WC insurance companies have a history (on a limited basis), of paying for ketamine treatment for RSD. United Health specifically disallows it. My attorney's assistant had spoken to my WC adjuster, prior to the BI's attempt to gain approval for my initial evaluation, about the ketamine program at the BI, and my adjuster had told her that it would be OK. But when it came time to authorize it, they not only denied it, they went into greater detail regarding what and who they would authorize in the future.

And when it came time for me to see a doctor, the evil witch gave me less than 10 minutes of her time, verbally abused myself and my husband the entire time we were there, and then completely bagged me in her evaluation -by diagnosing me with myofascial pain syndrome. (My foot, she claimed, was sprained!! It was HUGE and purple and was so painful that nobody could touch it.) The following day I was told that the ketamine program had JUST BEEN CLOSED at the BI to new patients by the office manager.

My doctor at St. E.'s is pretty familiar with the director of the ketamine program, and he knows of another patient that just started over there. It appears that the program is NOT closed to new patients, they lied to me.

I am almost certain that the people at the BI screwed me because the WC people told them that they weren't going to pay for me to go there. The paralegal at my lawyer's office probably thought she was doing a good thing by discussing the situation with WC in advance. After all, they can sound so nice on the phone. Instead, they used it against me.

You expect to be screwed by WC. But NOT by doctors and their staff. The doctor was abusive. She deliberately misdiagnosed me (ignoring my grossly swollen foot, a new symptom for me, by calling it sprained). Her evaluation report left out every symptom or disclaimed every symptom that could be associated with RSD. And they appeared to have lied about the availability of their ketamine program. But now, based on the doc's diagnosis, I don't qualify for it anyway.

How do we go after these people? Has this ever happened to anyone else? It all about $$, isn't it? The hippocratic oath means nothing anymore to most doctors and medical centers. How do these people live with themselves? Instead of helping me, they caused me great harm.

I am flaring badly, and so, so sad that there is a treatment that might have worked, that I may have been able to at least try, that is now out of reach. And I going back to my old doc this Tues. at St. E.'s, perhaps for an 8th SGB, and my 1st lumbar block. Joy, joy...

Sorry this is so long, and thanks to everyone that listens to my rants.

BTW - Happy Fathers Day to all the dads out there.

XOXOXO Sandy

[GalenaFaolan]

Unfortunately when you're dealing with wc, it's all about money! I know cause I've been there. Each doc I saw dx'd me with rsd and at the next visit I was treated like crap and worse than crap, called a liar, a junkie, and a faker by the doc who had dx'd me just days before. It's because wc had called them after receiving the first report with the dx and reamed the docs out for it and ordered them to take it back. They then did exactly what wc asked them to.

The bad news is there is nothing we can do. WC is holding all the cards and they know it. In Florida there are no lifetime medical benefits or anything. I say I won in the end because they didn't beat me, I took what I knew I could get and got on with my life. I have a fantastic doc who cares and is very knowledgable about rsd. I am taken seriously.

I hope one day you will be free to do what you want and have a good doc too. Until then, know that you are not alone! Many are and have gone through WC hell too.

Big, Huge, Gentle Hugs,

Karen

[Dew58]

I posted a "like- situation" today, concerning my PM doc's receptionist and nurse, in ref. to my medications. Lies..yes they do lie. Ethical..to the highest bidder. I am involved in a WC case, and it has been a horrible experience.

I am sorry that you have had to endure this situation. Please, keep your chin up..vent away as we are here for each other..
last, but not least, Do NOT Give Up!!


Dew

[fmichael]

Dear Sandy -

What happened to you was outrageous. I will PM you privately.

Mike

[loretta]

Dear Sandy,
Inexcusable! I'm so sorry you are going thru this. Please know I'm thinking of you, and hope your attorney can get this reversed and catch them in their dishonestly. Your friend, loretta

[daniella]

I am so sorry that you have to deal with this added stress. I really don't know how some who are supposed to be helping us but actually add more stress/hurt can do that. I wish I had answers and direction for you. Just take care and I hope you feel better all around

[gabbycakes]

SandyRi,

I can imagine how disappointed you are in regards to the Ketamine Procedure. I have had the 3 - 5 day inpatient procedures done. I think they are starting to discover that it does not work as once thought, so maybe this is a blessing is disguise for you. It is a difficult and long procedure, at least it was for me.

I have had RSD for 6 years and take very few meds. and just try and keep myself healthy.fit and non-stressed.

I wish you the best.

Gabbycakes

Oh, what does BI stand for?

Originally Posted by SandyRI

Hi all,

As some of you already know, my husband and I had a disastrous experience at the BI, a large, well known, highly respected hospital in Boston last month, where I had been referred for their ketamine program. My referral was from a doc that had been treating me for over six months who's with a smaller Boston hospital (St. E's. ) that is really good, but has limited resources. He's seen me at my worst when I go in for my SGB - in terrible pain, all rashy, extermely high BP, etc. (I always flare when I go there because I'm a wimp, for me the stellate ganglion blocks are a very painful and scary procedure). Obviously, my referring doc knows I have RSD, he's seen the evidence of it many times, and wouldn't have referred me for ketamine if he didn't think it was appropriate. And, I had been diagnosed by 2 other docs prior to seeing him.

I was informed after my appt. by the manager of the Pain Clinic at the BI (when I called to complain to someone about my treatment by the doctor I saw), that when they contacted WC for authorization for my appt, WC had told them they would only pay for me to see a certain doctor in RI for my RSD and no-one else. So the BI sought authorization for my appt. from United Healthcare.

WC insurance companies have a history (on a limited basis), of paying for ketamine treatment for RSD. United Health specifically disallows it. My attorney's assistant had spoken to my WC adjuster, prior to the BI's attempt to gain approval for my initial evaluation, about the ketamine program at the BI, and my adjuster had told her that it would be OK. But when it came time to authorize it, they not only denied it, they went into greater detail regarding what and who they would authorize in the future.

And when it came time for me to see a doctor, the evil witch gave me less than 10 minutes of her time, verbally abused myself and my husband the entire time we were there, and then completely bagged me in her evaluation -by diagnosing me with myofascial pain syndrome. (My foot, she claimed, was sprained!! It was HUGE and purple and was so painful that nobody could touch it.) The following day I was told that the ketamine program had JUST BEEN CLOSED at the BI to new patients by the office manager.

My doctor at St. E.'s is pretty familiar with the director of the ketamine program, and he knows of another patient that just started over there. It appears that the program is NOT closed to new patients, they lied to me.

I am almost certain that the people at the BI screwed me because the WC people told them that they weren't going to pay for me to go there. The paralegal at my lawyer's office probably thought she was doing a good thing by discussing the situation with WC in advance. After all, they can sound so nice on the phone. Instead, they used it against me.

You expect to be screwed by WC. But NOT by doctors and their staff. The doctor was abusive. She deliberately misdiagnosed me (ignoring my grossly swollen foot, a new symptom for me, by calling it sprained). Her evaluation report left out every symptom or disclaimed every symptom that could be associated with RSD. And they appeared to have lied about the availability of their ketamine program. But now, based on the doc's diagnosis, I don't qualify for it anyway.

How do we go after these people? Has this ever happened to anyone else? It all about $$, isn't it? The hippocratic oath means nothing anymore to most doctors and medical centers. How do these people live with themselves? Instead of helping me, they caused me great harm.

I am flaring badly, and so, so sad that there is a treatment that might have worked, that I may have been able to at least try, that is now out of reach. And I going back to my old doc this Tues. at St. E.'s, perhaps for an 8th SGB, and my 1st lumbar block. Joy, joy...

Sorry this is so long, and thanks to everyone that listens to my rants.

BTW - Happy Fathers Day to all the dads out there.

XOXOXO Sandy

[SandyRI]

Hi guys,

Thanks for all your support. I appreciate it, and it helps so much to know that I am not alone.

I saw my team of docs from St. E's in Boston today. They are awesome! They have limited options, but they are willing to bend over backwards to help me.

They were really bummed to hear what happened to me at the BI. Given the facts that exist regarding my case, they were disgusted that any doctor would diagnose me with myofascial pain syndrome. My medical files from prior docs in RI and from St. E.'s (7 SGB) had been forwarded to the BI prior to my appt. The BI had clear evidence in those files supporting an RSD diagnosis. But the doctors there falsified their reports in order to disqualify me for their program because they thought my insurance company wouldn't pay for it. It's all about $$. And the BI is NOT that broke. And that is why - they are MEAN and their docs are MEAN. It's what keeps them from going in the red.

(The BI's ketamine program is in jeopardy at the moment because apparently they are taking up too much space, per the manager of pain clinic. BUT - if you cruise around FB - "Ketamine Klub", you will read that they have told their current patients that the program needs $$. Leaves us to assume that the patients they have served in the past have not paid enough for it, or they have a large trial population, or they gave it away free for a while. Hard to know what is the truth since they have doctors that are willing to risk their licenses by lying on a patient's evaluation report)

What they don't know is that the WC insurance company has already denied all of my bills at St. E.'s, most of meds, a lot of my PT, etc, and my attorney has had 100% of those bills paid to date.

My St. E.'s docs are willing to try setting me up with 4 hour lidocaine infusions. They don't have the room for it in their pain clinic at the moment, but they are expanding and will be able to do them in August. In the meantime, they offered their surgi-center. I didn't have any blocks done today, as I thought I would. (WHEW!) But I will have one for my leg as a diagnostic tool soon.

So I feel a bit better emotionally. I have docs that care. They can't offer ketamine. But I'll try lidocaine infusions, they have worked well for some people, even if only short term. And I know I can go back to St. E.'s anytime and I'll find people that really care that my head hurts and that I don't feel good. And hopefully I'll stop flaring soon (and it will stop raining in the NE soon and summer will arrive, too!).

Take care, and thanks again so much for your support. Sandy

[Mslday]

Dear Sandy,

I am so disgusted to hear what you have to go through. I wish there was some way I could help!

Just a thought, have you considered contacting RSDSA.org to see if they can put you in touch with a pain advocate in your area?

I know it is really hard but please try to breath and focus on some positive emotions. If you can do that it may help you get through this very difficult time.

Wishing you peace and pain free days.

MsL

[Jimking]

SandyRI, you are not alone. What you've gone thru appears to be very common to those with chronic pain. It's downright disgusting and should be outlawed and made criminal ASAP! I've seen this exact thing with my own eyes trying to help my wife who has RSD. Workman's comp isn't the only agency that acts this way, many insurance companies do, especially HMOs. Also, make no mistake that private industry plays a role in this too. An employer can and will collude with a insurance companies to deprive a person of treatment, giving the employer room to boot the sick in order to get them off their insurance roles one way or the other and they are many ways to do this. I've seen this happen also, but very difficult to prove. The only thing I seem to have a passion for these days is this issue because I'm so angry about this to no end! I'd like to know if there is some sort of class action suit to nail these animals.

SandyRI, keep fighting hard to get what you are entitled to, because you are. Get friends and family behind you and all of you go to these doctors at the same time and corner them if you can, if and when you are not treated properly. Good luck

jim