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Intractable pain, useless pain management doctors

From: wishnopain - on 04/20/2010 11:28am

Hi. I might be an unusual case.

I am female, 66, had surgery last July for severe scoliosis, spinal stenosis, deteriorated disks. I had
discectomies, spinal fusion.

Since the operation, the pain has steadily become more severe. I'm worse off than before the surgery. The surgeon wants nothing to do with me. I've been to 7 pain management doctors (and consulted two different back surgeons and neurologists, to no avail. They all say they don't know what is wrong with my back).

All the pain management doctors have either prescribed useless drugs (many types), or given shots that don't work. Some of them have done nothing but talk, and I moved on.

How do I get real help? I can't walk anywhere except around the house, and suffer all day.

Do you find this discussion helpful?
3

14 Responses

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on 04/20/2010 11:44pm

I don't know how unusual you are, Wish, but I feel for you. I'm going through a really hard time now myself. I am in pain all day, every day. The kind where you find yourself grinding your teeth and notice that your hair is falling out! Nerve pain -- the worst.

Anyway, i was wondering if you had looked into a spinal cord stimulator or an intrethacal pain pump. I, myself almost got the stimulator then i almost got the pump. This latest doctor has me on a regimen of drugs and I'm going to try to see if they will work. Yes they have side effects but when you're in this kind of pain you just don't care. You just want some relief.

Let us know what you end up doing. Again, the scs and pain pump are worth looking into.

Good luck,

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on 04/21/2010 2:08am

Your condition is not unusual, it is called "failed back sugery" and you need to find a back specialist thae will treat your back at the area it is hurting. I go to physical therapy for myofascial release.

You probably have root impingements in your spine and need a lumbar myelogram, please get this done as it will show what levels have something wrong and Good Luck.

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on 04/21/2010 3:33pm

Dear Pam6622:

Thanks for your reply. I'm sorry you are in pain too. I found that no drug or injections has helped. i am considering both those options you mentioned, but some doctors have tried to scare me away from them, saying they are not likely to help (a neurosurgeon I saw last week actually said that).

Still, I'm likely to try those soon.

I hope you have luck with your pain. Thanks again.

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on 04/22/2010 1:13pm

You may want to read my post titled hardware pain. It seems that we are living very similar lives. My conditions are identical and have also had two surgeries for scoliosis. The pain is horrific all the time and aside from constant doctoring my life is lived in a recliner as I need back, shoulders and head fully supported for any relief. I am lucky to have a very supportive husband. We got a mobility scooter to get me out of the house once in awhile. However, we do need a lift for the car so I can go out without my husband as I cant lift it. I am limited to a gallon of milk. The scooters come apart in three pieces with the heaviest piece weighing 32 pounds.

I wish I had advice on doctors but my experience is the same as yours. Going to Johns Hopkins in May in hopes that they have some ideas.

Please take care of yourself and know that you are not alone!

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on 04/23/2010 4:33pm

Hi There! I have had a total of 11 back surgery's from failed discectomy's, fusions, fix fusion, remove scar tissue... and the list goes on. I too have had a awful time finding a paim managment specialist that is well versed in treatment options and willing to take the time to treat you as a individual patient, not part of the "drug seeking" group. My last was great at first, as I recently found out he was new to the area a new practice at the time. He spent time with me instead of 10 mins. and on to another. He worked with me on my med cost and presciption coverage, as well as what meds work and don't due to the legth of chronic pain. All my surgery's and resulting promblems stem from a car wreck 8 years ago. Anyway, as the doc became popular and began seeing more patients, he redecorated, changed the staff uniforms, had all sorts of useless materials printed up. He became like the rest of the 10 or so clinic I have been to or consulted with, constantly drug testing, having you sign contracts over and over, not listening to side effects I experience, and so forth. I am sure all old news to many of you. Finally the end of my relationship with him is when I recieved papers from Medicare as he was re-billing most of my visits from the prior year to try and get more $$. Currently my family physican treats my pain, but is not to happy about it and it leaves me afraid to discuss other meds as a option as the fentyl patch and 5 mg of oxycodone do not help much at all. My pain is 90% low back, and I do realize I will always have some degree of pain. But when you become so limited you cannot shower as usual, dress, walk the dogs, cook what are you supposed to do?? I know "a bad apple..." has messed up the chances of many for decent pain managemnt. One doc I was going to consult with went as far as wanting to know the police whom covers the area I live in just in case he thinks I am abusing, selling, using illegal drugs. There was way more to it, but I just can't see where he would of had time to actually care about improving my quality of life.

Here is to a pain eased weekend. My thoughts are with you all!
dee

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on 04/25/2010 10:24am

First, I'd like to offer you my deepest compassion being a fellow sufferer with a similar history. I had a full fusion with instrumentation at one of the top hospitals in NY, by one of the most renowned surgeons. The surgery took over eight hours as I had many problems, severe stenosis, spondelithelosis, herniations etc.I had 12 screws put in and one month after the surgery, while I was still fairly immobile, it was discovered that 2 of the bottom screws were broken! No satisfactory explaination was given and I suffered ( I had a nervous breakdown shortly after the discovery) for 3 long years before the instrumentation was removed except for the broken pieces.I've had epidurals, tens units, acupuncture, a breast reduction, medications, PT all to no avail. I too live in agony and dispair. I agree that pain managers are difficult to deal with and some have been so dismissive of my suffering or think I'm a pill seeker it disgusts me. My surgeon too wants nothing to do with me. I am mounting a new charge with a new pain dr. who specializes in injections and pain meds. I will pass on anything I learn to you and pray we will have something positive to share.

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on 04/25/2010 11:21am

Dear Gail,
My goodness 12 screws? I have 2 seperate fusions 4 screws I believe. As with you the first fusion the screws came loose so when they did the second level fusion the repaired the first. Of course I woke up from surgery to have my right leg numb as the surgeon screwed down on a nerve. So the next morning back to the O.R. to fix that. I had my surgery at a very good ortho hospital in Baltimore. Like you after the surgery the chronic pain began and my surgeon was not interested in helping me anymore, no referals, nothing. It was almost like he was guilty of something. Shortly thereafter he moved to California I am sure on my tab. In the past 3 or so years I have tried to get a ortho doc to help me with not even an x-ray taken. I finally found a neurosurgen locally who has a very good reputation, he teaches.. he assessed my condition with several radiological studies. He sent me for a series of injections that were useless and then for a consult with the nerve stimulator. Since then every time I schedule an appointment and arrive the staff says he's running 1 or 2 hours late and I must re-schedule. Then the appointment was set for 2 months out ecause he was taking a month off to teach. A mutual friend has put me in contact with a neurosurgeon at Johns Hopkins Hospital in Baltimore. He is the head of the service and seems interested in my case. However the appointment was scheduled for 2 1/2 months out, now it is the last week of May.

I do not want to bore anyone with more of my story. Though I can really understand why you had a nervous breakdown and hope you are not still struggling with that. My heart and prayers go out to you and anyone else struggling with a bad outcome in major back surgery. Someone said it is called "failed back surgery syndrome". Yup, that labels my experiences.

Dee

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on 04/26/2010 10:35am

I am so very sorry for all of your pain, Wishnopain. It does seem to be even harder to deal with it as we age, especially after a lifetime of pain. I do want to let you know that the Cleveland Clinic (the Cleveland location) has just started offering consult and treatment for failed back surgeries. WOW! I think that is a Godsend. I hope that you are able to avail yourself of it.

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on 05/05/2010 3:19pm

To wish no pain, unfortunately you are not alone. I am sure there are many of us who can't even talk about this dreadful existence of pain, apathy, and cover you ass drs.

I have recently moved to a new area and sought a pain mgmt dr. nearer to me. What a mistake? I have severe spinal stenosis since 2002. Had disectomey full fusion at Hosp for Special Surgery, in NYC with one of the best surgeons in the country. S1 screws were broken after one month. I thought I'd lose my mind after the agony of 8 hrs surgery to know it ,would be a failed surgery. Drs.passed the buck on the broken screws and to cover it up "misreading" an MRI. that was 2005. in 2008 had the whole thing removed same place same guy. tried everyhting shots, pain meds, stim, breast, reduction, acupuncture, shrinks.

Well this new guy promised to take me on and presented a plan of action. One week later after dropping my current pain dr. I met with him and he misconstrued and misinterpreted everything I said. I started crying in his office at this startling turnabout; and I just received his notes in which in he stated I was manipulative, bipolar, because i vacillated between injections, morphine pump, and/or pain meds. I was completely stunned at the turnabout and therefore, to get red of me they made up stuff re my behavior and my records and refused to take my case. Stating an oh by the way I should seek psychiatric help. Which I have always had for depression and anxiety.

Please, has this kind of thing ever happened to anyone out there? I am so heartsick and shocked by the lies and judgements passed on me in the course of three 30 minute consults. And by the snap decision that I am to complicated to treat. I've had surgeries in 05 ( 5 level fusion), 2 in 08, and one in 09.

Please anyone, offer me guidance what can I do now. I feel kicked to the curb with a record full of slander and character assasinated that will prevent anyone from seeing me. I am so frightened I don't know what to do. My surgeon will not return my calls. They sent copies of these injurious remarks to PC and surgeon without my permission. I am desperate for advice too - can somebody please HELP ME! my e-mail is gbbern@live.com

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on 05/06/2010 11:21am

Dear Dee
In my zeal to tell my own story I neglected to thank you for your reply to me and your kindness.
I also want you to know I will be praying for good results when you go to Baltimore at end of this month. Please let me know how it goes.

gbbern@live.com

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on 06/06/2010 4:32pm

Don't give up. I was almost dead 2 1/2 years ago when I found a doctor in another state that was willing to spend more than 5 minutes with me.

Look for someone who is not only an M.D., but also does holistic. My doc does both and while I'm not cured and I still have to take some pain meds and muscle relaxers, I am in much better shape all over. I can actually function daily.

May the lowest levels of hell be reserved for most so-called pain management specialists. From what I have seen, they're useless and some of them are dangerous.

Good luck.

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on 07/15/2010 7:43pm

Reading all these comments make me feel not alone in my unsuccessful search for pain relief. A few observations about *chronic* pain..

1) There is no such thing as a pain management specialist. It is a marketing term. You cannot major in pain management in medical school. Most "pain managers" are anesthesiologists who are injection happy, despite its low success rate or pill dispensers who get partial results, if they are lucky.

2) Surgeons are not pain specialists in any way shape or form. After 2 failed surgeries from a top surgeon I finally learned that he is useless when it comes to pain. But then again, that is not his specialty.

3) Think of it this way. Pain cannot be measured. If it can't be measured, then Western science and medicine are severely limited in what they can do. Western science requires that something be measurable and that experiments are repeatable. But for pain that way of thinking just not not apply.

The degree of pain and your ability to deal with it is a psychological state.So it is up to you to reduce stress and learn how to relax. Meditate to help you learn to accept pain sensations as simply that-sensations. You have to learn to accept that the pain will be there.

4) I take pain meds since they help a little bit. But meditating and stress reduction of the most valuable approaches that I have found to help me cope with my pain.

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on 07/15/2010 7:50pm

Gail: Do not be concerned about the crap that the doctors wrote. This is not like the Steinfeld episode where you are blacklisted due to complaining. Most pain doctors are useless but that does not mean that you should not keep trying.

Look into holistic and/or complementary medicine where the focus is on your entire mind/body. I wish there was a simple answer but as you can see from the comments, pain management is still in the Dark Ages.

As one neurosurgeon told me, stay away from neurosurgeons unless you want more useless surgery. Look into acupuncture, meditation, stress reduction, and do not fear drug addiction due to taking pain meds. If they help, take them.

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on 07/16/2010 4:39am

Don't confuse accute pain treatments for chronic pain issues. Anthesiologists are masters at accute and breakthrough pain since they believe in stopping the pain first then finding a longer term solution if they know of one.
Usually long term is eithher get a shot every 3 months or couple the shots with exercise, dietary supplements, and meditation. Since I cannot relax long enough to meditate I listen to meditative music or play a Native American wood flute,.

If anyone here can share similar strategies, pls do. I am at wit's end.

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