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Need advice with what to do

I haven't been on here in years, not since this site first started up. But at this point I need some outside perspective and advice.
The run down is (and I will try not to be too long winded here)... I'm 37, have degenerative disc disease and I *think* failed back surgery syndrome. I've had 5 surgeries on my lower back, the first one when I was 19 and the last one in Oct 2013. I have been under pain management since 2007.
Everything was going fine with my pain management until the end of 2011 when I started having increased pain and new numbness. Turns out that L4,L5 had deteriorated and ruptured. I had my meds increased.
I also did a trial for the spinal stimulator implant and was in more misery for those 3 days than I had been in years!

I moved to Mississippi in 2012 and had to start over with new pain management. I have so far not found a doctor I either feel comfortable with or does not have a pill mill type practice. My current pain management doctor is Chinese and his English is very difficult to understand as well as he does not seem to understand me very well. Every appointment I have to remind him that No, I do not want to try the stimulator implant as I have already been down that road. Also that I have a unique situation because of having had gastric bypass where I can't take certain meds and I need a bit higher dosage because of my absorption.

The gastric bypass and not being able to fully absorb medications seems to be my biggest issue. I have tried the fentanyl patches and ended up with hives where ever on my skin I put the patch (some of these hives have left scars). I tried going back to a methadone/norco cocktail but the dose he had me at was so low (5mg every 16 hours) I felt I was going into withdrawal every 5 minutes (and if I took enough Norco to balance that out I would run out 2 weeks early and break my narcotics contract and be discharged). So now he has me at 4 10mg Norcos a day - with NO long acting meds to keep my pain level at a more even keel.

I've told him that I've been in pain management for 7 years - here is what has worked wonderfully with my altered digestive system and let have somewhat of a life and he wants to do the bare minimum dose and frequency. I have asked about the pain pump and he said he doesn't do those and I didn't want that because the catheter tube could malfunction and I would go into withdrawal or have other problems and would I be interested in the stim implant that he does? He has my records from my other pain doc in Florida that shows my history and what has worked and that I've tried the stim implant, yet never goes through my chart to verify what I've said. Grrrrrrr!!

What can I do? What options do I have? I'm so frustrated and can't think straight because of how much pain I'm in and the runaround hell I've been through with pain management in this state!!!

My primary care doctor said because of my narcotics contract he cannot refer me to another pain doctor.
I'm afraid if I tell the current pain doctor I would like to see someone else that I will be discharged before I am able to get an appointment with a new doc (it could take 3 months or more to get into someone new!)
I want to be evaluated for the pain pump, because of my gastric bypass issues (then the long acting drugs would not have to be going through my digestive tract and half of it get wasted becasue it wasn't absorbed) but this doctor is trying to push his stimulator deal on me instead.

Does anyone have any advice or experience (or encouragement?) they can share?

Thank you so much!
Biloxi, MS


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • sandisandi Posts: 6,343
    edited 06/02/2014 - 12:57 PM
    base for the fentanyl they once had. I don't know how long it has been since you tried fentanyl patches, but the adhesive used now contains the fentanyl and contact rashes have gone by the way side by and large. For those who have experienced an occassional reaction, use of over the counter anti histamine nasal sprays and allowing it to dry before placing the patches has eliminated that old rash reaction.

    It appears that you and this pm doctor don't communicate nor understand each other well, so it might be time to seek out another consultation with another pm doctor. As long as you don't accept medications from them, you can consult with as many pm doctors as you want . You just can't sign a contract or accept medications from one until you end the contract with another.
    Doing it this way, gives you plenty of time to locate a new pm doctor, and interview them about treatment ideas and suggestions, and not accepting any medications from them doesn't violate your current contract.

  • The fent patches were last used in March/April. I had no problems skin wise with the 25mcg ones, but got little pain relief. When he upped me to the 50mcg the patch was 3 times as big and that's where I started having problems (a bit better relief of pain, but still not optimal).
    This afternoon I called a few other PM docs in the area and all but one require a referral from my family doc or surgeon. So I'm going to line up an appt with the one not requiring a referral. He is also a migraine specialist, which I need so that may be a really positive experience, I hope!
    I just feel lost and alone and frustrated... and I hate it! I had such great pain control before I moved here! I even called my old doctor's office out of state and found he actually retired at the beginning of this year, so that option is off the table.
    Biloxi, MS
  • Perhaps you could check with your insurance company to find all the PM's in your area and then do a search on their credentials/reviews from reputable sources. There are some pretty good sources out there for doctor info.

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • sandisandi Posts: 6,343
    edited 06/03/2014 - 3:13 AM
    Check your insurance website, get the list of providers , and also check into physical medicine and rehabilitation doctors as well. They usually also use medical management as an option in treating patients, so it is another avenue to persue.
    Good luck,
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