GRIPES ABOUT LUMBAR FACET JOINT DENERVATIONS AT TEACHING HOSPITALS

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CRANKY 1
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Date Joined Aug 2005
Total Posts : 617
   Posted 5/31/2012 3:54 AM (GMT -6)   
Hey Gang,
 
I'm a chronic pain sufferer, with among other problems, degenerative disc disease affecting my S1, L4 and L5 joints bilaterally. I've been through several rounds of the denervation procedure, which essentially burns off the nerve endings of the lumbar facet joints, so that the pain is diminished for the period of time it takes for the nerves to regenerate. The procedure consists of placing needles deep into the affected joints, positioned via flouroscope, then having electrical current passed through the joints to destroy the nerve endings. The amount of time that this procedure benefits me is about three to six months, during which my pain level is reduced from a 5-6 on a daily basis, down to about a 2-3, with a corresponding improvement in my ability to accomplish the most basic of daily tasks.
 
Unfortunately for me, the closest Pain Management Center that I can get this procedure done at is over an hour away from my home, and is at a "teaching hospital", which I have found to be the LAST PLACE any chronic pain sufferer should have to go for treatment. I have found that "teaching hospitals" treat the patients like guinea pigs, while catering to the needs of the "students" learning to be doctors. I've come to this conclusion over a period of time, based on my own experience, and by observing the same procedure being performed on several different medical television programs I've seen in the past few months.
 
Before the actual procedure can be done, patients must first be put through a testing procedure, which consists of using a temporary anesthetic and a steroid in place of the electrical current, to see if the patient experiences any relief from a brief numbing of the joints. Once it has been determined that relief can be achieved, the actual procedure can be done. From the research I've done, and via personal experience, I've realized that patients getting this procedure done in a "teaching" environment are treated in a positively barbaric manner.
 
Basically, compared to the other people I've seen that have this procedure done, I'm totally getting screwed in this process. First, the Pain Management Center I go to won't prescribe pain meds for me, insisting that my primary care physician handle that aspect of my care, but they do recommend that I receive the least level of medication possible. Thus, I am expected to function on #30 5/500 Lortab, 3 per day, and have to call my DR. for a refill EVERY TEN DAYS, because I am not given any refills. I also get #50 50mg Tramadol, no more than 4 per day, and have to do the manual refill thing every 30(!) days. The other patients I've seen on television that have need for the LFJ denervation procedure have their daily pain managed with everything from Methadone, Fentenyl patches, Oxycontin...nothing less than higher dosages of Oxycodone. Clearly, I'm being expected to handle my pain with a lot less pharmacutical help that people with my equivalent condition. If I was functioning at an acceptable level, and my pain was tolerable, I could understand, but that's not the case. If the PM Center isn't going to prescribe my meds, I don't think they should be dictating to my PCP what I should be receiving.
The second thing that disturbs me about my situation is that because of this "teaching environment", I don't receive a good continuity of care, as the student doctors are constantly cycling through the program. I see someone new practically every time I have an appointment. Even the "supervising" staff fluctuates from visit to visit. Additionally, because the protocol includes the testing step be completed prior to the procedure being done, each time I need to repeat the denervation, the Pain Management Center wants me to have the test redone so the student doctors can see the full process, step-by-step. I know the procedure works, so I shouldn't have to be retested every time, and my insurance company sure shouldn't have to pay again for unnecessary tests.
 
The biggest problem I have with getting this procedure done in a "teaching environment" is that I am expected to undergo this extremely painful procedure wide awake with no anesthesia...nothing to make the procedure less tramatic. In watching the procedure being done on various television shows, the patients are always knocked out, and have the portions of their anatomy being worked on numbed up so they don't feel any discomfort. With the student doctors, they want the patients wide awake so that they can receive immediate feedback when they do the needle placement in the joints and when they start to apply the electric current. This is really cruel and unusual punishment for the patient, since they doctors have instruments and machines that automatically provide this information, and will be what they rely on once they become practicing specialists. I am made to cry out in pain multiple times during every procedure, as the pain is often excruciating. During one procedure, I actually had a student doctor tell me that my screams were "not productive" since they didn't provide any "constructive" information! I about came up off the operating table from a combination of agony and anger, because not only was the comment insensitive, it's not like the jerk had been asking me for any specific feedback. He was just jabbing huge needles deep into the extremely painful joints of my spine! ARRRGGGH!!!
 
I guess the really telling thing about this painful process is that during one of my procedures, I was making so much noise from the pain in the procedure room, a very large, football player-sized man had to be pursuaded not to leave the premises, as he was scheduled to have a denervation immediately following me. Apparently, I had him scared half to death! I do have to say that the nursing staff is very sympathetic to my plight, and if it weren't for them, I know I never would be able to endure the process which does provide me with a measure of pain relief for a period of time. I really think I'm going to beat the bushes one more time to see if I can find a Pain Management Center that isn't a teaching institution. I don't think I can bring myself to go through this miserable procedure knowing that other people don't have to suffer in the same way.
Thanks for listening. Any feedback is appreciated.
 
cool  Leigh Ann

•On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems
•Divorced, 46, spawn-free

"THE WEATHER IS HERE, I WISH YOU WERE BEAUTIFUL." -Jimmy Buffett

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 5/31/2012 8:41 AM (GMT -6)   
Hi Cranky1,
 
I can literally feel your frustration and pain through your post.....it touched me because I do understand.
 
There are MANY people in this forum who have RFA (nerve ablation....same thing you have/different name) and many (including myself) receive very, very little sedation or pain medication during the procedure....so you are NOT alone there.  It is honestly agony!!!  I do NOT have to do the "test" each time though, since that is not a realistic procedure for me.  I had to have a series of three test procedures before they would give the first real RFA (and I think this is the most common practice).
 
I can certainly understand why you would want to find a more permanent pain management facility....one where you could develop a relationship with the Dr (or Dr's) in the practice and have reasonable expectations of what to expect at each appointment.
 
I can honestly say RFA is terribly painful for me and yet my very best friend has what she is told is RFA by another Dr and is totally knocked out.....she doesn't even have the pain after the procedure due to all of the punctures into the back.  Sometimes I think they are not telling her the truth and giving her some other injection and billing for the RFA.
 
I asked my PM about that and he says there is absolutely no way to do an RFA with the patient unable to tell you what they are experiencing.  They can (and do) give something to knock the edge off, but beleive me when I say it doensn't do anything for the pain in my book.  He further says it is necessary to check the nerve in three different ways (brief pulses, tingles or pulling, and throbbing) and to tell exactly where the effect of the check ends (like the buttocks, the knee, or the feet).  If it goes to the feet, it is WRONG and needs to be moved to keep complications from developing.  I can understand this, but it is exceptionally painful....especially in the facet joint where they broke it off during surgery to use the bone for crushing up to grow more bone (that didn't work too well, but that's another story).
 
I am afraid that you are in a very delicate postition about changing to a permanent PM practice, but I hightly recommend seeking out one that accepts patients with your needs....often they will tell you they don't give meds when in fact they do give them as needed (which you obviously do).  That was the case with me.  I can't say that mine is perfect, but they do give me some quality of life.
 
I hope you will consider seeking a new provider...perhaps calling your insurance company for the information on providers located within a reasonable driving distance.  I would rather go 20 more miles than to have to go through the mess you are having to endure here.  It should also be reasonable for the Dr to accept you as a permanent patient, as you have been seen for a long time at a training hospital and have been compliant in every area.

I wish you all the best in this....I scream too and believe me, I understand that it is not an option...if it were, I wouldn't embarass myself and have my nose run and my eyes swell shut from clinching them closed and then apologizing profusely each time.  I even ask my physician to ignore my pain and please finish the procedure no matter how much I scream because it is the best pain relief I can get.  The trigger points don't get screams, but they are quite painful too and there is NO medication before them to lessen the pain.  It's worth it in the end...
 
I think my obvious reaction to the pain of the procedures and willingness to endure them anyway is what really convinced my PM and his NP that pain meds were exceptionally important in my quality of life.  After the last RFA, he added long acting meds and another muscle relaxer with no reduction of short acting meds.  It's been a godsend!
 
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