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Posted By : ride_04 - 9/14/2007 1:10 AM
I sort of asked this in another thread, but I didn't really get any responses so I thought I'd ask again. I have my first appointment scheduled with a chronic pain specialist/clinic on the 28th of this month. As of now, I do not have a diagnosis, but I suffer from chronic back/neck pain and headaches 24/7. I feel like I need medication (at least for now) but I do not want to be labeled as someone with "drug seeking behavior". Does anyone have any advice/info on what I should be expecting at this first visit? I feel like this has been such a long time coming and I just want to be prepared. Thanks.


P.S. I have Kaiser so if anyone is familiar with their policies and what not, any info would be much appreciated.

Post Edited (ride_04) : 9/14/2007 1:29:10 AM (GMT-6)

Posted By : razzle51 - 9/14/2007 4:38 AM

sounds like you need to be checked for Chiari . Look at the site below and see how many symptoms you have .

And all I know about Kaiser is its not good insurance.

Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999


Posted By : ride_04 - 9/14/2007 4:13 PM
I checked out that sight, and I do have quite a few of those symptoms, but I've already had an MRI on my neck. Wouldn't they have found something?

Posted By : BigLucy - 9/14/2007 6:34 PM
I have Kaiser and went to the pain clinic for about three years.  Was referred back to my primary care provider and discharge from pain clinic b/c my condition is "chronic" doesn't respond to "alternative" treatments and "any doctor" can prescribe pain pills--which, thank god, my primary does.  Anyway, they are going to want you to do alternative things (all which I did, just so they would continue to give me what works for me, pain meds)--I did two years of acupuncture (didn't work, but it did for a pulled back muscle some years ago, differemt situation all together), I tried biofeedback (didn't work for me b/c I was already applying the same principles, sort of like positive thinking--which is challenging when your in chronic pain--meditation, distraction, mind body connection, etc.), group support for chronic pain, and saw their psychologist.  For me, I was open to suggestion, honest about what didn't and did work and participated w/recommendations.  The trick w/Kaiser is to be very knowledgeable about your condition (which is a challenge for you right now) and if you don't feel your getting what you want, ask for another opinion.  Kaiser has a patient's rights office called "Patient Relations" and I've had to contact them several times throughout the years to get my point across--very good response.  I think if your reasonable and your medical history shows that there is a problem, people will not "label" you.  Drug seeking behavior is very obvious to professionals and you will know you are doing it if you start to do it.  BUT, I do have to say, that I have had a couple of doctors who were unsympathetic w/my condition, even though I have a vast medical history to back me up, I just changed doctors--but, I went about it a certain way, I asked other patients, nurses, even my chronic pain doctor gave me a list of understanding doctors that don't mind treating chronic pain.  Your going to have to do some work.  Good luck.

Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).

Posted By : ride_04 - 9/14/2007 7:26 PM
Hey thanks Lucy. Yeah, my GP is not going to give me any more meds, I know this for sure. The big problem I think I'll be facing is that I have not yet received a proper diagnosis. The spine specialist basically told me, "sometimes people are just in pain all the time and we don't know why." My GP isn't totally unsympathetic, but she definitely is against giving me meds, and would prefer to let me suffer, or as she puts it, "just deal with it". I've never had good luck with Kaiser so I'm not expecting much, but who knows. I appreciate your advice though. I guess I just gotta stay persistent. Oh, also I just noticed that the pain clinic I'm going to is part of the "chronic conditions" department. So I don't know if that's any different than than where you were going.

Post Edited (ride_04) : 9/14/2007 7:44:12 PM (GMT-6)

Posted By : Circa1988 - 9/15/2007 7:34 PM
Your GP told you to 'just deal with it,' that is not ok. You definately need to find a doctor who can help you more. I dont know much about neck problems or anything, but I know alot about headaches, as I suffer from chronic 24hr very severe headache/headaches. I would suggest going to see a nuerologist and see what he can do to help you. They might be able to treat your pain while finding the cause of it and eventually maybe even getting rid of it, hopefully. Or they may just document your case and refer you to a pain clinic or something like that. But even if that was all that happened, it would be more evidence to help you get treatment at the pain clinic since you dont have definitive diagnosis. I would definately ask your GP to refer you to a nuero if she thinks that will help.

Good luck finding relief and I hope that all goes well for you. I hope everyone is having a pain-free day.

Posted By : Chartreux - 9/15/2007 8:53 PM
Awe ride, so sorry your GP was like that to you hun. I hope the pain management doctor will be able to help you out better. You have my prayers and soft hugz. Keep us posted as to how it goes for you......

Posted By : straydog - 9/16/2007 1:52 AM
Hey Ride, try to put together a list of things, like what really kicks the pain level up, what you can & cannot do, what changes you have made because of pain, how it affects you on a functoning level. If you work, has there been any accomodations made at the work place because of your pain. I urge you to make a list of pain meds you have taken in the past, including what worked and when it quit working. This will let the dr know you are very serious about your pain.

Secondly, if this pain clinic works out, please look into finding another PCP. Being told "to live with it" is not acceptable. I don't think we are talking about you having a little pain once in awhile, and thats exactly what this drs approach is leaning to, which is wrong. There are far too many drs out there that are good w/o having to put up with that crap. Susie

Posted By : BigLucy - 9/16/2007 12:35 PM
Ride--In the 3-4 years I was at the pain clinic at Kaiser, they changed the name of the department, oh, something like 3 times???? First, it was Integrative Medicine, then Rehabilitation and something and I can't remember what the current name is. I work in the health field and I am familiar w/this tactic--my take on it is that administrators think if you change the name of something it will be "different" or people will react differently or the stigma associated to it w/go away? In pyschiatry people used to be "patients, " then they were changed to "clients" now they are called "consumers"--consumers, can you believe it, where are they going for treatment, Costco? Anyway, your probably going to the same department I went to, just a new name. The first pain MD I had for three years was fantastic, very empathetic (she disclosed to me she had a chronic condition herself), but unfortunately she left Kaiser to start her own practice (private pay). The second MD I got assigned to was o.k., but from day one, she wanted to discharge me from the pain clinic b/c "there's not much we are doing for you here." What? How about empathy, easy access to the medication I need, etc. I landed in the hospital with a major UC flare after she suggested I "move on" so, politically, I guess she kept me at the clinic for another eight months. When she really started to pressure me to go back to my primary provider, I demanded a list of MD's that are sympathetic to chronic pain sufferers--she gave me a list of ten doctor's, none at the time were accepting new patients. So, I contacted the supervisor of the pain clinic and Patient Relations to make sure that I could stay until an appropriate MD was found on my behalf. The supervisor of the pain clinic also confirmed that discharging from the clinic was protocol, b/c if people staid forever they would never be able to accept new patients--doesn't make sense b/c my condition is chronic, permanenet until someone finds a cure! I am now seeing a primary care and so far so good, the first time I met with him he actually said I was undermedicated, so added Oxycontin SR to my regime on top of the Endocet for breakthrough pain, which has worked out really well for me. And this is the short version, throughout the years, I've seen multiple MD's to assist me with my ailments--you have to be persistant and "demand" the treatment that will help you live your life as best as you can. I hope this helps.

Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).

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