Getting frustrated with my pain

[freebird63]

For the last 2 years my life has been hell, between the doctors that don't get a rip and the doctors that have screwed up and my pain and the pain meds I have been on.
The last pain management doctor I went to was a joke, he did facet injections, 3 other injections and RF Albalation and all the while having me on norco. lyrica and oxycontin, nothing he did worked.
Then I found the new pain doctor, he listened to me, he worked closely with a neuro surgeon who did the pain pump.  The trial pain pump worked great, then they finally put the perminent one in and the surgeon screwed up.  Anyways to make a long story short I finally insisted they take the pump out because it was not working and I was on my 2nd CFS spinal fluid leak.  
The meds I was on were 40mg oxycontin 2x a day, 15mg oxycodone 4x a day and 5mg valium 2x a day.  Since Christmas the meds really were not working.  I had been telling my pain doctors PA, she didn't care, then in March of this year I decided to ask her if she knew why the pump didn't work, she got very defensive and said I didn't give it enough time, my comeback was "how can that be, the trial pump was only in for 5 days and worked like a charm", she still insisted that it wasn't in long enough, I then ask her if the fact that the catheter was kinked mulitple times if that would have any effect on the pump not working, she said no.  
Anyways now I am on 20mg Opana 2x a day, and the same does of oxycodone and valium.  I have been on the opana for almost a month now and the pain is not any better.  I can't afford to go up in doesage with the opana, $400 for 60 20mg opana....ouch...and that comes out of my pocket.  Is there something else out there that might work better and not as expensive as opana????   I don't know how much more of this nonstop pain I can deal with, it has really put a damper on my family life, can't play with my granddaughters, am unemployed, my employer fired me because I could no longer do my job functions, my job was at the hospital where my surgery was done.  I am trying to get SSI, but my doctors won't cooperate with my attorneys.  Right now things for me that really suck.
There are so many things that I can no longer do and I do not do well with just laying around, I have to be active, generally if I don't do anything I am always at a 5-6 on the pain scale, but when I start doing to stuff it climbs real fast and stays there.  My doctor also has a bad habit of just pulling me off meds and not tappering me off them and the withdraws are terrible, wished he could feel or walk in my shoes for a month, then maybe he would be more considerate???  Thanks for listening
Chuck

[freebird63]

I had spoke with an attorney and they pretty much said the same thing, I didn't die, didn't lose a limb or was not paralysed so the chance of winning is too small.  Idaho is a right work state and employers can get away with anything short of murder.  My former employer was a hospital, the same hospital where my surgery was done and where the quack neuro surgeon works out of.  After having seen how they talk about some patients while the patient is asleep on the table, its really bad and some of the other things that went on.  It would cause me to think twice before ever having surgery again.  For me this has been one huge nightmare that does not seem to go away.  I made the mistake of picking up my granddaughter yesterday and have been paying dearly for it with all the pain I have been in since doing that.  My oldest daughter has a grandson on the way and I am hopeful that I can at least get this pain situation under control before he gets to the age where I can take him out fishing or take him to look at the animals up in the mountains.  

[mellie4]

Medical malpractice cases are very, very difficult to win.  And lawyers are often reluctant to take that type of case on due to the high costs of trying the case and the small chance of winning it.  Though if you really feel like you have a case, find a law firm that only handles med mal cases.  They'll interview you and send your records off to some experts to get a feel for what they think.  It won't cost you anything and it's worth looking into.

I didn't think it was legal for your former employer to bad mouth you.  I thought the most they could really do was verify your employment dates.

Best wishes on sorting it all out.

[freebird63]

Some of my reports I already have, thats how I found out about the multiple kinks in the catheter, as my pain doctor ordered the blood patch because of the CFS spinal fluid leak, I know he has a copy of the report and probably the neuro surgeon has a copy, but I called him first  2 days after the pump was put in, when I called the surgeon they just told me to call my pain doctor as it was not their responsiblity.  There is nothing wrong with getting my records from my pain doctor and then going to talk to one of the other pain doctors that I have heard some good things about.  When my doctor put me on opana i was really scared about if he ever just took me off it because from what I have heard from others here on the board that when they come down off opana they would rather be dead because the withdraws are so bad.   Thank you for all the info
Chuck

[freebird63]

The new neuro surgeon I am going to, I ask him the same question about switching pain doctors, his recomendation was to try and stay with my present pain doctor, he is worried that is might look like I am pill shopping, even though I have never called in for refills or been short.  So there is never been any problems with that.  There are not many pain doctors here in Boise, Idaho.  As far as why my pain doctor is not cooperating with providing records or info to my attorney's, well my attorney's seem to think its because may get in trouble for not doing his job.  Like for instance they "pain doctor" and maybe even the surgeon the put the pump in knew the catheter was kinked and is probably the real reason the pump did not work.  Knowing the catheter was kinked and the morphine was not making it too the spot it was intended to go and not suggesting doing a revision to go back in and straighten the catheter and see if that would solve the problem.  You figure my insurance company paid at least $10,000 for that pump and it was taken out 3 months later and thrown away.  I have heard that some of those medications I have been on could have very very bad effects on me if I just stop taking them, well I guess someone should tell my doctor that and I guess I have been lucky to not suffer any of the negative side effects.  I have spoke with attorneys about a malpractice case, but the attorneys told me because I did not die, did not lose a limb, was not paralysed that it would be hard to win.  Mean while my employer fired me, I cannot find another job and if I was to even get an interview what employer in their right mind would hire a person with my back problems and the kind of meds I am taking????   Plus I think my former employer is now bad mouthing me to any possible employer that calls to verify my employment there.  Everything I have went through I would never wish upon anyone.
Chuck

[namnam46]

Chuck, I'm so sorry to hear of the predicament that you are in. You are truly living in a nightmare.

I think that I'd be looking for a different PM Dr. also. It's terrible what you are having to deal with. I'm with Dame, you shoul definitely go to your different Dr's yourself and get ALL of your records and hand carry them to your attorney's office.

Also, if you have enough work credits (which I'm sure you probably do) you definitely need to try for SSDI  because I know 1st hand that you get A LOT MORE money than you do in SSI. The only thing that you might run into is  that you are not 50 years old yet and it is MUCH harder to get SSDI if your not 50 years old. However, it is DEFINITELY worth a try especially since you already have an attorney.

The numbers that Sarajmt reposted are hopefully will be of great help to you also.

Please let us know how you are doing. We will be anxiously awaiting word from you on your situation!!

Best of luck to you....Sherry

[Sarajmt]

Sandy1818 posted just today a list of phone numbers to get assistance for paying for pain meds;
  http://www.medhelp.org/user_journals/show/162076/Prescription-assistance-programs-and-phone-numbers?personal_page_id=863283

It does sound as if you at least need a second opinion.  You might consider at least talking to another pain doctor.

Good luck.  Your situation sounds like a nightmare and I really wish the best for you.

[dame_wilbur]

It sounds to me like it's time for you to find a new doc, one who will listen to you and not just take you off stuff and make you deal with withdrawal. That's not medically safe as far as I know.

As for SSI, do you know why your docs are cooperating? When I applied, I went and got all my records myself, and then brought them to the lawyer in a huge pile. And if you worked, you're probably eligible for SSDI which might well come with better benefits.

~Dame