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syorkmtssyorkmt Posts: 6
edited 06/11/2012 - 8:53 AM in Chronic Pain
My 30 year old daughter was in a car accident 10 years ago. She had a traumatic brain injury and exploded on of the lower vertebrae in her back. At that time, the nuero-surgeon stated she may need corrective surgery in the future. She recovered but not fully. She has fought severe,crippling headaches over the last ten years. She is working at a professional job and did have a child two years ago.

Things changed with the birth of the child. It was a complicated pregnancy and was completed by C-section. Since this time she has had more back pain. Last year she fell and hurt her back. She did this again two weeks ago. One problem is she has been on so many pain meds over the years that it clouds the situation. Dependency has existed, but it is related to her pain.

A surgeon felt she needed to have surgery to repair her back. The pain center he is linked to felt she was showing signs of addiction and would not manage the pain for the surgeon saying she was not in a good mental state to have the surgery. The pain center finally stopped working with her for many bogus reasons.

They did refer her to another center and they utilized a special drug to break her dependency on opiads. They clearly stated she was not addicted, but needed the meds to manage pain.

Things went well for awhile, but in the end, the head of the pain clinic discouraged her from surgery. They feel her mind is misreading the pain signals. In other words, the pain is real, but it is in her head, not her back.

Since her fall two weeks ago, her pain is more severe. She can't get anybody to do anything about it.

We feel that her treatment teams have just turned their back on her whether or not the pain is in her head or in her back. We feel we are losing her as this is consuming her life and she has nowhere to turn.

She has not been on pain medication for 3 or so months and not on opiads in over a year. That dependency is broken yet she still suffers from severe pain. We know her pain wasn't a mask to get the meds. She is in pain.

Her wish is to get it fixed. She is tired of the meds route.

Any suggestions you may have would be appreciated. We are concerned and feel we are losing a beautiful daughter. The TBI also complicates matters a bit.


  • I am sorry to read about your daughter. Have you sought out another surgical opinion? I know you must be tired of fighting for this but please don't give up. See if you can get at least 2 more surgeons (Neuro or Ortho)and maybe even a Neurologist to look at your daughter. You may need to drive to a diffferent town. Try to get their opinions on treatment. Maybe she is a candidate for a pain pump or stimulator if she is not a candidate for a surgical repair.

    Good luck,

  • Thank you. It feels good to have some support. We are going to another surgeon. I just read about the stimulator, but it seems that it is usually used after surgery is attempted. What do you know about it?
  • First let me say welcome to spine-health. What exactly is your daughters spinal diagnoses? If you don't have copies of the MRI reports you should get them and keep them in a file to keep track of what is going on with her. I like to get all medical records so i know myself what is contained in them. The surgeon whom was considering doing surgery, till the pain management wouldn't address her pain post op, what surgery was he/she considering doing? If your films are older than a year, it might be a good idea to get new ones. Be sure when she see's the next doctor that she has a accurate description of her pain, like stabbing burning pins and needles throbbing, also the location. She would do good to keep a journal of the pain and how it impacts her and her pain on the pain scale from 1-10. Be sure she is realistic with the scale. For instance if she says a 10 that sets off all kinds of red flags as in a 10 you would be in the ER and more than likely near death. Also when she goes to the doctor don't ever ask for any particular med even if she knows it has worked for her. Let the doctor come up with the diagnoses and the treatment plan. Has she had any injections to help alleviate the pain? In her journal she should also write down all the meds she has tried and used and how she did on them and the specific reason they were prescribed.

    At the top of the page in the FAQ section is a link to 38 question preparing to meet with a spine surgeon. This appointment she needs to be fully prepared, just as if she was going on a interview. Be sure to bring old films and records you might have. Hopefully the doctor will have some ideas to help her, be it surgery or conservative treatments. Many times a new doctor will start with conservative therapies unless paralysis is at risk before moving into surgery. Surgery should be the last option.

    Just thought I would stop by and welcome you to spine-health. Keep us posted on how she gets along.
  • Burst Compression Fracture of the L1 which has caused the space between the L1/L2 and L1/T12 to be compressed on the inside. Trauma induced scolesis above and below fracture to the point now of one hip being 2" lower than the other. Scoliosis in upper part of body so that breasts/shoulders are tilted. Compromised ligaments in her neck, arthristis in neck caused by fracture injury. Bruised spinal cord.

    Pain: feet are numb in the morning, back/legs have tingles, shooting pain down legs; pain in feet; Pain in lower half of body; head turned in certain position, her hands go numb; after severe headache, back throbs to the point of level 10 intensity (can't get out of bed and vomiting;pain in legs a 7-10 level depending on what is going on (yesterday she collapsed when her legs gave out); can't feel left toe and three toes on her right foot are blue; No sensation on inside arch of feet; constant flu ache in legs; spine on fire at a 2-3 all the time

    Treatments tried: radio frequency on neck; electric stimulation on back; physical therapy; cranial sacrial; acupucture; massage;steriod(bad reaction); numerous non-painmeds; nerve blocks without steriods
    fetanyol/demerol/hydrocodon/oxycoton/morphine/dilatid/subuxone/stadol; etc as well as antidepressants to help manage the pain. She doesn't want to be on pain meds especially the opiates because they mask the pain and are a bandaid to what is really going on. She has stopped taking everything because she felt each time the amount of pain med kept increasing to manage her pain to the point of becoming dependent and then she starts getting negative responses from the doctors who are prescribing. :>(

    Surgery recommended: Fuse vertabrae; clean out discs and put spacers in; rods in to try to straighten the scoliosis. However, the pain center the doctor is connected to won't manage her pain meds so surgery can't be done.
  • If she has surgery they have to treat her for pain after surgery especialy if the dr doing surgery is affiliated with that pain clinic. What kind of monkey operation are they runing there? I can understand they might have got frustrated from the pain clinic if they already treated her with everything they had and ran out of things to do for her. But if she has surgery its a new ball game. I have ran out of options with 3 diferent pain dr,s but after having surgery they still had to treat me for new condition after surgery.

    But in my case i fired the last pain dr again and found 1 that i like beter anyways. If she already tried everything and surgery is the only option then it might be time for surgery and worry about the follow up treatment after the surgery. Maybe she gets lucky and pain wont be as bad and can even follow up with regular dr for pain meds. Good luck, Alex
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Yes thats what we thought....they give her the meds....then on a whim...stop and say she is not their patient anymore...even tho the surgeon wants to do the surgery and feels it will lessen her pain and need for meds. go figure :>(
  • We have gathered almost all of the records, however, getting the MRIs and scans on disc is a great idea. Also we are documenting every thing and trying to find a different surgeon out of town that might give it a clinical look (one that deals with facia pain as well as spine pain). It feels like this is draining the finances of this young couple especially when there is no progress. Thanks for caring.
  • This question is to try to find a way to pay for all of the doctor's appointments and meds. They have insurance, but it is really minimal. Has anyone gone on SSI or found other ways to manage? How about work? We documented she has a diability, however, no reasonable accommodations were made at work. How have you all navigated the medical bills. medical appointments, and work/school?
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