SICK of being a GUINEA PIG at TEACHING HOSPITAL's PAIN MGMT CNTR

Hey Gang,

I'm wondering if anyone else is having the same problem as I am.  The Pain Management Center that I go to is located in a "teaching" hospital, namely the Univerisity of Virginia Pain Management Clinic.  Due to its' continuously rotating line of students, I don't get a consistant manner of care.  The staff doctors that supervise the students also fluctuates, so I'm lucky if I see the same people two visits in a row. 

My main diagnosis that I am pursuing treatment for is chronic back pain, due to digenerative disc disease, scoliosis, and various other problems that combine to make me fairly miserable on a daily basis.  My lower back (S1, L4 & L5) is the worst, followed by my mid-back range.  The original treatment plan was to resolve my lower back situation, then work up towards my neck.  Good plan in theory, but because I'm going to a "teaching" clinic, I'm stuck in a cycle that's too slow to make any progress past my lower back. 

The procedure that gives me some measure of relief is called a lumbar facet joint denervation, which essentially means going into the joints of the lumbar spine with long needles and burning off the nerve-endings with an electric current.(YES...IT HURTS as bad as it sounds)  In order to verify that the procedure burning off the nerve-endings will be successful, I have to get a "test" procedure first, which goes into the same joint locations, with the same long needles, but instead of the electric current, I am injected with a combination of a temporary numbing medication and a mild steriod.  If my back pain is relieved, then that confirms that the denervation procedure will be successful.  Unfortunately, it takes six to eight weeks to get that appointment scheduled, or even longer if you try to schedule it with the same student and/or supervising doctor.  Moreover, typically, they will only do the right or left side at one time, and you can only schedule one procedure at a time.  By the time I finally get to the point I should be moving up to my mid-back area, I have to start over again.

So what I've finally figured out that is happening is this:  The students have to learn all the procedures in a series.  Therefore, even though I've had the denervation procedures done before successfully, I am subjected to having to go through the "test" procedures first.  It finally dawned on me that it's not for my benefit, but for the teaching purposes of the student doctors, who need to learn how to do the procedure on a "guinea pig"...and that's me!  I have to be stuck with needles for two additional procedures, literally extending my pain cycle by a good 4-6 months, for the benefit of someone else!!!  What's even worse...my insurance/disability is footing the bill for the wasted procedures.  AAARRGGGHHH!!!  IS ANYONE ELSE HAVING TO DEAL WITH THIS???  ANYONE know of a good Pain Mgmt Center near central VA?

Thanks for letting me vent.

 

Leigh Ann

THANKS for the response and support!  I wish I thought it would make a difference, but I'm pretty sure I can't put my foot down about who treats me if I continue to go to UVA.  I can understand that the student DRs need to learn, but I should only have to deal with so much.  Most of them are pretty good, but I do hit the occasional moron.  One guy actually had the nerve to tell me that my yelling out in pain was "not constructive" when he stuck me with a needle.  SORRY, but it's not like he asked me a question or anything...he just impaled me with something that felt like a burning ice pick.  JERK.

I AM going to throw a "hissy fit" though, if they think they are going to make me take another "test" prior to doing a denervation.  The procedure works, I know it works and they know it works, and I know they know, so they have another thought coming if they try to pull that redundant testing crap again.  I'm going to point out that I'm on SSDI, and that I don't think the MEDICARE folks would like having to pay for unnecessary retesting.  Maybe the fear of government ire might make some headway.

Again JCG, I really appreciate you taking the time to answer my post.

 

Leigh Ann

The best thing to do is to talk to your primary care doctor and tell them that you need a reliable pain management center (perferably one associated with a hospital center or larger medical group). They will likely refer you given knowledge of your history and they don't want to make a "bad" referrance because then it reflects on their practice. Just my grain of salt.

If you live in MD, the Spine Center for Maryland is an excellent choice with a caring staff.

Leigh Ann -

Happy venting day to you too.

It was interesting to read your experiences. I've only had epidurals, or maybe they was facet joint injections in the lumbar spine, with a limit of 3 a year. They worked well for sciatica and spine pain for a year and a half. The one I had Monday hasn't kicked in yet, so I'm wondering if it will.

I've had one session of 3 facet joint nerves injected with something to kill them, not burned, not the same as the lower back injections, for my slipping rib pain. That worked pretty well for a year, but as you've experienced, they grow back. At least it only took once, although I'm near the point of needing it done again. It's not supposed to be quite as permanent as the burning, but that isn't permanent either.

All these procedures do hurt a lot, even with local anesthesia. At least I can go to a private doc! Don't go to a teaching hospital in July when the new residents start!

I have the RFA done too, but they only did the series of "test" injections once. Now I just scheduled the RFA (but....and that's a big but), the insurance company just denied (and denied all appeals) the one I had done in December. These are the only procedures that give me ANY lasting relief. They last me about 6 months pretty well and then are completely "gone" after 12 months. I do scream my way through them too. They are so painful that I have to be in really bad shape to do it, but it's worth it in the end. I even made sure to tell my PM to please ignore my screaming and do all of them this last time no matter how bad I yelled. I really hate that I'm that out of control that I have to scream out in pain, but I can't help it. He did it this time, where the last time he stopped before he finished the last facet joint, and it was horrible in that one spot the whole time until I had it done.

I'm not sure if you have tried it this way, but could you ask them to note in your chart that "test" procedures will not be necessary again, as the procedure has been fully established as successful several times? Of course, each place is different and that may or may not work, but finding somebody who can do these well is pretty hard IMHO. I'm certainly not willing to go through that much pain for nothing.

Good luck!