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Chronic pain patient dropped from pm can't get specialist or rehab help

Jess40JJess40 Posts: 1
edited 08/28/2015 - 11:18 PM in Chronic Pain
Hi I hav every diagnoses here under chronic pain. I hav suffered from back pain since I was 13 now 40. Mother of 2 grown girls. First sciatic dibiltating issues when 19. For first 17 years I did everything suggested...hot, cold compresses, ibuprofen, chiroprctors, massage therapy. Never been lazy just pushed thru awful pain and sciatic episodes. Had a couple mri's but to scared to find out results. When turned 32 I could no longer walk from excruciating pain in right back, hip and leg. Went to dr for help got norm work up...X-rays and Mir. X-rays revealed severe arthritis in hips and lumbar spine. Mir revealed 2 hern disks in lumbar and 2 bulging. Referred to neurosurgeon had first discectomy felt like a new person hadn't felt that good since was child. 12 days later couldn't walk on left leg pain was so unbearable was screaming like woman giving birth naturally. Found that the remaining disk from discectomy herniated completely. So back into surgery... He decided to really check my lumbar spine thoroughly and learned I had: severe degeneration, spondiolitis, stenosis and arthritis. So needed fusion for missing disk but needed 2 heal from 2nd surgery 1st so started norm recovery phys rehab and pain meds but had very slow recovery w awful pain never ending. 3months later had Mri and learned I had developed staph infect in disk space. So spent next 3 months on numerous pic lines w iv antibiotics b4 it finally healed. 4 months later finally had fusion at l5-s1. Developed another staph infection and had 4th surgery in 11 months 2 remove infection. Learned from specialists will always hav staph in spine due to ad hearing to metal. Soooo spent next 6 yrs on morphine and lyrica. Had my 5th back surgery 9 months ago on cervical spine for fusion due to herniated and bulging disks from degeneration and many other lovely diseases . I was released from neuro med scripts and pushed to pm dr that did a favor for my neuro for melds and chronic pain control due to new fed laws for narcotics last year. The favor was bcuz I went to 12 pm docs in bi state area and no one would touch me w 10 ft pole due liability of staph in spine. I cannot receive any pain pumps, epidurals or injections without long term antibiotics. Developed allergies to all plastics, tapes, latex, tegaderm, skin cleaners, etc. my pm switched me from morphine I was on for almost 7 yrs in same day to methadone, opana, and cymbalta 5 months ago and in that time lost control of pain and was off on pill count pm dropped me that day and spent last 3.5 was withdrawing and detoxing on my own. can't get any dr or specialists to acknowledge me. So for last3 wks made 50 calls internet help and cannot find rehab or pm dr accept me. Had 3 grand mall seizures in last week and half. Need Mri badly but been to 3 hospitals 4 times for grand mall seizures and can't get Mir though I know I hav herniated the bulging disks in lumbar and cervical and good chance had some cages come loose. Had eeG and brain is fine. Rehabs won't take me cuz hav Medicare w private insurance, my med conditions won't allow me 2 participate in programs and the staph infections lets just say NOONE WANTS TO TOUCH ME DUE TO SUCH LIABILITIES!! I cannot afford even close to what private rehabs cost. Lost my architecture career and was put on ss disability 5 yrs ago..... Help..


  • LizLiz Posts: 7,832
    edited 08/28/2015 - 11:18 PM
    Please take the time to read this post and refer to it when you have questions

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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • SavageSavage United StatesPosts: 5,427
    edited 08/29/2015 - 8:15 PM
    I'm a little confused. Could you please explain a little more re....."and in that time lost control of pain and was off on pill count" .... Does that mean you took additional medications, outside of orders of prescription? without notifying you PM doctor of your change in symptoms?
    Also, re....."And spent 3.5 (3.5 means what?) was withdrawing and detoxing on my own"

    Are your seizures new? Are they related to withdrawing and detoxing? Did a doctor tell you anything about the seizures?
    Within last three and half weeks with seizures, you went to "three hospitals, four times"...
    Why did you go to three different hospitals?
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • So sorry. Sounds like your poor body has had it with surgeries. I thought being on right antibiotics they could control staph infection. My heart aches for you since I know what pain can do to us. Sending prayers for you. I have never been released from PM so I know nothing about this.
  • Some medications can cause seizures if they are suddenly stopped.
    Unfortunately, you may find it very difficult to find another physician willing to give you opiates.
    There are other avenues of managing pain, and other medications to treat different types of pain other than opiates.
    I am not sure how many times you were short , or by how much, but doing that usually results in dismissal. Just for future reference, if there are any issues regarding medications, always contact your doctor for advice FIRST.

  • So sorry about your predicament..I really hope another doctor gives you a second chance. Mistakes can happen to any of us and I know you now understand how crucial it is to communicate with your doctor before taking matters into your own hands. I certainly understand your desperation to relieve the agonizing pain and you certainly have severe pain that needs to be treated. Unfortunately these are the times we're living in where we have to abide to all the rules imposed by the federal government regarding narcotics. Take care and please keep us posted
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
  • Not sure I saw clarification on this statement "and in that time lost control of pain and was off on pill count" ...all I can say is I'm on a extended realease medication twice a day and a rescue as needed every four hours - but I only get 25 of those rescues every 15 days ...so I know I basically have two a day EVEN though theoretically I could take 6 a day if you divided it by every four hours. So what I'm trying to say is make sure you know how many pills you are allowed until your next appointment. If you're pain is not controlled call your doc....but stay in the dosage amounts, going over and kicked out of PM is much worse than dealing with a little extra pain during the day / every day. I hope that makes sense.
  • fazshaffazsha Posts: 2
    edited 09/11/2015 - 6:47 AM
    Jess, I feel bad reading about all you've been through. I've had 3 operations in 5 yrs but feel like a piker compared to what you've been through. I have no advice, just sympathy and prayers.
  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

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