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Old January 5th, 2013, 07:44 PM   #1 (permalink)
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Pain Clinic?

I'm going through a really tough cycle with my neuropathic pain in my legs. I was stricken with the Guillain-Barre Syndrome 6 years ago. The nerves in my legs didn't heal properly, so this is what's left for me. I do fairly well with opiates, but my doc is constrained about how much he can prescribe. I've done everything from meds that you wouldn't believe, an electric black box, acupuncture, and a pain psychologist. On good days, I can walk up the stairs to my studio and get around in the house. When I go out, which I do as infrequently as possible, getting in and out of the car is murder, and I have to use a cane. My productivity as an academic has really taken a hit, and this just kills me. This is by far the most depressing part of the whole deal. It is very hard to take the initiative on even simple things like changing cables or updating software with pain present all the time. I'm just squeaking by. On bad days, that's a whole other thing. I'm having more bad days.

When I was in the university hospital here, I had two relapses and they recommended the Mayo Clinic. They were very aggressive in their treatment (IVIG, a type of plasma). What I'm considering now, and really should have tried years ago, is finding the quote/unquote best pain clinic out there. Does anyone have any recommendations? Googling didn't help.

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Old January 5th, 2013, 08:27 PM   #2 (permalink)
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Larry sorry to hear that you are having a hard time of it. Perhaps someone from the Mayo could refer you to someone.
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Old January 5th, 2013, 09:10 PM   #3 (permalink)
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Yes, in fact I'll look into the pain clinic there.

I know this sounds terrible, but at this point I would rather have more opiates if it lets me work and take on the risk of longterm effects. I'm personally not worried about ODing, as I haven't had any experiences even close to that. The problem is that the whole opiate craze across the country has resulted in too many people ODing, not to mention using them for recreational purposes. It really cheeses me off that I have to suffer because of that. The approved dosage level used to be higher than it is now.
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Old January 5th, 2013, 09:23 PM   #4 (permalink)
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I feel for you bro.....unless one has dealt with (I should say deals with) pain on a daily basis, it is hard to understand how it consumes your life. I'm sure you have checked this out, but here is a list of pain mangement Drs in your area. http://www.ucomparehealthcare.com/dr...Iowa_City.html

I would definately try the anesthesiologist's first. One of the best Drs I had was an anesthesiologist who had a side practice in pain management.

I normally don't talk about this, but I'll share a bit of my story...First off, finding a Dr you can trust and who trusts you can be quite daunting. It may take some time to find the right Dr., but believe me...it is worth it.

I'm soon to be 58 years old. I've dealt with chronic back pain since I was 15...well over 40 years now. Since 1995, I've been through 5 pain Drs. For the past 6 years, I've been back with the first one I had! He left for a sabatical after I saw him for three years or so. I was transfered to another Dr in the same clinic and he turned out to be one of the worst Drs I've ever encountered. I get along with almost everyone, but not with this guy!

After him, I was lucky to find the anethesiologist I mentioned above. Awesome Dr and an awesome man. He moved out of state to start a new practice. He set me up with his associate. I only saw her twice before she decided she did not want to work in pain management.

The next Dr. I found was a Pulminary Dr who also did pain mangement. I had to interview with him before he decided to help. I did not like him at first...he seemed very cocky and cynical. After I got to know him however, he was one of the nicest, most passionate Drs. I've met. I had to drive over 40 miles one way, once a month to see him. After a year or so, he offered to set me up with a collegue of his that was much closer to where I live. He was worried about me driving so far each month.....so, I checked it out and it turned out to be my first Dr! He was working only with fibromyalgia patients at that time and said he was not taking other patients. Since I knew him and really liked him, I decided to go to his office and talk with him in person. As soon as he saw me, he recognized me and gave me a big hug. We talked for a half hour or so and I've been seeing him ever since.

It is an absolute blessing to have a Dr who will not only work with you, but who trusts and believes you. I guess they have to be somewhat cynical due to the people out there who just want the opiods. So, it may take some time to build that trust. Once you do though, it's well worth it.

I have a very high tolerance to opiods. My Dr understand that and prescribes me what I need to actually manage my pain. I do not abuse them and once we got the proper dosage worked out, I've been steady for years now. I have actually been able to cut my dosage down a bit.

I've done the whole gaumet of things over the years....physical therapy, bio feedback, hypnotherapy, psycotherapy, accupuncture, intermuscular stimulation, untrasound, tens unit, massage, hot/cold/.....I could go on and on. Due to my particular back issue and a failed fusion when i was 18, opiod's are the only thing I have found to get any type of relief.

Of course, there are side effects.....some can be serious and some are just annoying. I don't like the side effects, but I am not complaining. I know that without opiods providing daily relief, I probably would have left this world a long time ago. They don't get rid of all the pain, but they do make it tolerable to where the pain is not all consuming. Living with chronic pain affects every single aspect of your life. I admire people who can live with the pain, (what many Dr's over the years told me I would have to do) but I am not one of them. Pain is also (for me anyway) very hard to talk about. How do describe it to someone who has not known pain? Plus, people get tired of hearing someone constantly complain.....all I can say is pain sucks, sucks and sucks.....I am so grateful I have a Dr who has a heart and mission to help people in pain. God bless him!

I wish the best to you in this Larry. I hope you can find a Dr who will do everything in his power to help you. Take care!
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Old January 5th, 2013, 10:04 PM   #5 (permalink)
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Sorry to hear this Larry. When you find some things out, maybe you'll consider to write/blog about your experiences. There are likely others like you -- or who will be -- who could benefit from some practical knowledge.

Indeed, the latest 'craze' in the media has to do with the ODing on prescription pain meds. Dr. Sanjay Gupta on CNN did this special, all hyped going in about the people who took an opioid and then had a single drink, and then died in their sleep; JEEZ. Then 90% of the special is about people who are taking it recreationally, or due to addiction or stacking. So now, yes, those of us who have pain (I have episodic pain from stenosis-induced pinched nerves, bulging disks in my lower back, and a few other maladies) then have to either beg the docs to give a script, explaining the need sounding for all the world that "he doth protest too much" way, or go without.

Anyway, good hunting Larry. I wish you relief.
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Old January 5th, 2013, 10:30 PM   #6 (permalink)
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I saw that Dr. Sanjay Gupta report, too, and was absolutely disgusted at the focus of it. Yes, there are idiots. Does anyone in the country now not know that about opioids? I did read an article online last spring that took the view that due to the public's abuse and perceptions, people that have real pain are paying the price. Some doctors now won't even prescribe them under any circumstances. My own GP has told me several times that he can lose his license if he prescribes over the new limit.

On the other hand, when I was taking a higher amount 4 years ago, my insurance company decided to kept reimbursing me for them for 6 months, after which they would review my case again. By then, I was lower so that never happened.
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Old January 6th, 2013, 04:22 AM   #7 (permalink)
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I wish you relief too Larry. I'm surprised that someone at the med school there in Iowa City didn't take you on as a research project. Might be worth a call to the Neurology department.

My daughter is an emergency medicine physician doing her residency in Florida. She says her ER is jammed every day with people looking for drugs..particularly Opioids.. She estimated 40% of the walk ins are looking for drugs.
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Old January 6th, 2013, 04:34 AM   #8 (permalink)
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I have 2 herniated discs.. I literally cannot get up some days... I started using a particular "herb" to deal with the nausea (I can't keep anything down AT ALL)... The nausea went away and I was able to cut my opioid intake by 75%
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Old January 6th, 2013, 05:28 AM   #9 (permalink)
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I'm in this camp too... pensioned off (now)through herniated discs.. I get by..

. i've had all the tests the magnatrons and voomertrons, xrays, dyes in my blood ,etc..

spent money on visits to the best surgeon locally.... recommended by a doctor friend who had a back issue/OP...he wouldn't go in there... probably make it worse , mate.... we haven't got into that spinal area to fix things yet....

around that time some lady friends were opening up a small clinic to practice and learn "Bowen Therapy"....
they used me as a trial body for a year doing this thing... non invasive acu-pressure type science that gets nerves and lymph systems muscles, tendons back in their right places and working as they should...

well after their magic.. I spent the next few years working with a builder building houses as a labourer.... without hurting my back or inflaming the discs....

it was like having your life handed back to you..... I don't know the precise science of "Bowen therapy" is.... it had a big impact on my pain management and movement issues...

the years have taken their toll though and other skeletal issues are present now and they pensioned me off...

I don't go into the clinic near as much any more .. I guess I don't hurt myself doing stupid things I shouldn't try any more....;)
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Old January 6th, 2013, 09:55 AM   #10 (permalink)
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No idea but look at them carefully. I deal with them in the course of my employment and some are really bad.
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Old January 6th, 2013, 11:27 AM   #11 (permalink)
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Hey Larry, my girlfriend has had a very negative experience with a pain clinic. Hope yours is better.

On a side note, I will always have a place in my heart for your university's hospital. I had a major reconstructive facial surgery at the U of Iowa Hospital when I was 12. They did an amazing job and everyone was super nice.
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Old January 6th, 2013, 12:17 PM   #12 (permalink)
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Hey Trev, so glad the Bowen therapy worked for you....that's awesome! I am a firm believer in alternative therapies ala Rolfing, Myo-therapy, Alexander, reflexology, crainiosacral, Feldenkrais method, Trager, Tui Na, et al....

But each individual is unique and each pain situation different, so what works for one may not do a darn thing for another. at least there are some alternative ways to go....I sure wish one of them would have worked for me, but I'm grateful for what I do have.
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