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I am new to this site and I have read quite a few posts and feel like instead of "standing out" with my issues that instead, I am just one of many who now deals with constant pain. I am at the end of my rope and I have no idea where to turn. But something inside of me keeps telling me to keep pushing and keep trying to find out what is wrong with me. Because there is something wrong with me.

I will try and be as accurate as possible to try and explain my circumstance. To be honest, I am losing hope each day so maybe this post will just be another post that will go unnoticed. It's one thing I have not tried yet. With that being said, let me introduce you to my life of pain.

In April of 2012 I finished work on a normal Friday. Went and got a haircut and then went home. Woke up on Saturday morning and I could not move my head. It hurt to lift it or turn it. But the real problem was from this sharp stabbing pain coming from my upper middle back. This pain was hot, sharp, stabbing and deep. I had never felt pain like this before. I could not go to work for the next 2 weeks. It was unbearable to shower, use the bathroom, put my shoes on, etc. My job is administrative assistant. I do sit, but not continually all day. I get up and move around. I do sit at a desk and work on a computer BUT....My company believes in the importance of ergonomics. I have an ergonomic workstation. Basically, I am saying this to let you know the problem does not stem from the type of work I do. That's ruled out.

In the 2 weeks I was out of work I went and saw my general (internist) doctor who gave me some pain pills and referred me to a spine doctor. I returned to work on the pain pills and waited for over a month to get in to the spine specialist. During that month the pain started to radiate down my left arm.

The spine doctored examined me in his office. Basically he told me to lose some weight, stop wearing high heels, get in to a physical therapy program that was conveniently offered through his office and then he ordered my first MRI of my cervical spine. He also wanted me to "get off" the pain meds (from my general doctor) so he lowered my dose. Only after I begged him that this was the only way I could even make it through work. I could not lose my job. So he begrudgingly gave me another prescription at a lower dose.

I began physical therapy religiously 3x a week with the physical therapist on site. I would do simple exercises with him and then go on a machine that would stretch my neck mechanically. I hated that machine and it never really seemed to do anything. I also began to eat healthier and cut out all sodas and sugar.

So after a few weeks of therapy I had my appointment for my MRI. I have to be "put out" because I am very claustrophobic. I was still working during all of this but still missing days because regardless of all the changes I was making, there were days where I was laying in bed and crying because the pain in my upper middle back hurt so much and the pain radiating down my arm was unbearable.

The results came back from my 1st MRI in July. I met with the spine specialist that had originally evaluated me. I had lost 20 lbs, changed all my shoes to "sensible" flats, bought new pillows, watching my posture, and had been continuing my PT religiously. On the day of my appointment I felt awful. I couldn't understand how nothing was working. It hurt to drive to my appointment. The sharp stabbing pain coming from the upper middle of my back would not stop. And in addition to the radiating pain down my left arm, my thumb and first finger began to go numb. The appointment did not go as expected. The results of my Cervical MRI were:

FINDINGS: There is loss of normal cervical lordosis, with mild generalized kyphosis present. This may be the result of degenerative pain but could be positional. Vertebral alignment otherwise appears intact. Degenerative changes are diffuse, disc space narrowing and endplate change most pronounced at C5-C6. The vertabral bodies are preserved in height, and no acute marrow signal abnormalities are seen. The cervical cord is normal in signal intensity thickness, and the craniocervical junction appears unremarkable. At C3-C4, there is broad based spurring which is more pronounced to the left of the midline. There is mild left foraminal stenosis. There is no canal or right foraminal stenosis. At C4-C5, spurring is similar in degree but predominantly right-sided. There is mild right formaminal stenosis. There is no canal or left foraminal stenosis. At C5-C6, degenerative disc and facet changes result in mild to moderate canal and mild bilateral foraminal stenosis.

The spine specialist explained to me he saw nothing significant to warrant surgery of any kind. In fact he wanted me to stop taking pills altogether. I started crying in his office explaining to him all I had done to try and follow everything he instructed me to do but the pain was getting worse and it was expanding down to my left hand and thumb and first finger. With that pain was now coming tingling sensations along with pins and needles and not being able to feel my thumb and first finger. He begrudgingly gave me another prescription for pain and a "round" of oral steroids called a medrol pack. Then referred me to another spine specialist in his office who could talk to me about injections. But his professional opinion was that there was nothing he could see to warrant the amount of pain I describe.

I met with the 2nd specialist who decided we should do injections since upon meeting him my pain was still so severe it was all I could do just to get through a day of work. I would drive home in tears and as soon as I walked in the door would start to ice my back. I could find some relief by sitting back on my bed with 2 pillows (one laying horizontal and one standing vertically) behind my back and I would kind of lean back in to the pillows with an icepack on the spot in the middle of my back and then I would take 2 more pillows and lay them on top of each other. I would stretch out my left arm and put another ice pack on the area around my elbow.

The first round of epidural injections did nothing at all. By the next day my pain was back on top of the pain from the injection site. I could tell the difference between my own back pain and the injection site pain. In 2 weeks he repeated the injections. These did not last either. Maybe for a day or 2 longer but the pain always came back with a vengeance. By the 3rd and last round of injections I could tell by that same evening that those injections were a complete waste of time and money. At the 3rd and last appointment the injection doctor said that the original specialist wanted me to know that after 3 rounds of injections I should be completely off pain pills. Once again I started crying in the doctors office trying to explain to them that the pain is increasing and I am missing work, I cannot do anything...grocery shop, clean, laundry, etc. The normal day to day activites were nightmares to me. He told me to make another appointment with the original specialist and to continue my PT. He begrudgingly wrote me a prescription for pain pills until I could get in to see his colleague. At that point I had, had it with these doctors. They were not listening and it was taking me weeks to get in to see one of them. So after that appointment, I never went back.

After talking to friends and people at work I was told by a manager in my office that he had talked to his doctor about me and thought maybe I should try a neurologist. Maybe the pain was coming from a nerve rather than my spine. So I was home from work again due to pain and found a neurologist who could see me. She was very sympathetic of my pain and gave me the EMG and NCV test in the same appointment. She also gave me a prescription for gabapentin starting me out on 100mg 3x a day and lidoderm patches and a prescription for Tylenol with codeine for the pain. She wanted to see me back in 1 week, at which time we would go over the results of the tests and see how I felt. Her professional opinion was that it was not my back that was causing me my issues and pain, but the nerves within my back. A week later I returned but still in pain. My tests came back normal the neurologist said. She said that's a good thing because I have no nerve damage. The lidoderm patches helped some though. They were the first thing that even dulled my pain at all. The neurologist tripled my gabapentin prescription and told me that this was going to be a process in overcoming my pain. She also gave me a prescription for cyclobenzaprine 10mg which she said was a muscle relaxer that would help me sleep because now my pain was keeping me up through the night. She wanted to see me back in 3 months.

3 months? She must be joking. All these pills and doctors and changes I have made and for what? Pain that just seems to be getting worse and expanding. After telling a coworker about my problem she advised that maybe I should get a 2nd opinion. So I scoured the internet for someone in the city (I live in a suburb of a large city) who was affiliated with a university. I thought they would have more to offer. So I made an appointment with a neurologist at one of the university's that seemed creditable in dealing with nerve issues. By this time with all I had read about I did believe that my problem was nerve-related and not spine-related. My appointment was 6 weeks out. I revisited my general doctor to bring him up to speed on all that I had been going through and to get a prescription for more patches and pain pills so I could try and work and make it through the next 6 weeks.

The next six weeks were just a continuation of more pain. My routine came down to just making it to work as much as I could. My attitude was grouchy. I was still tired only sleeping some nights. I would wake up at 5am because I needed 2 1/2 hours just to get ready for work. By the time I was off work it was all I could do just to try and rest and be able to get to work the next day. One day a girl friend at work asked me to go out for a few drinks and some appetizers. I didn't drink and was out, sitting in a restaurant for 2 hours after work. I missed the next 2 days of work because of the strain 2 hours out put on my back. I could not move out of bed again due to massive sharp pain like a knife was being stabbed in my back. It hurt so much that my head felt too heavy to hold up. The radiating pain down my arm was getting worse. Now my whole hand went numb. Each finger numb and or tingling in addition to the pain. It was starting to hurt more down my upper left arm as well. At times I felt a tearing sensation almost like inside my arm felt like a rubber band being stretched too tight. Somehow I don't know how but I made it to the appointment with the university doctor downtown. I brought my test results and had filled out his questionnaire as accurately as I could. His 2nd option as a neurosurgeon was that he saw nothing to warrant cutting. His words. He explained as a surgeon it was easy for him. He saw the problem and he would know what to cut. He saw nothing that warranted him cutting. Again I began crying explaining how one day I just woke up with this horrible debilitating pain and yet no one can find anything wrong with me months later. He referred me to a doctor who was also downtown that specialized in "hard to diagnose patients".

I got to my car and called the doctor I was referred to right away. She was part of a pain management center and I was able to get an appointment with her within a few weeks. When she saw me, she brought in another doctor and the 2 of them examined me, had me do certain movements and I explained every detail of my story. She was certain that it was in my thoracic region and could not believe no other doctor had looked at my neck. I had a nerve that was pinched and she believed that it was originating in neck because there was nothing showing a pinched nerve in my spine. She ordered another MRI, this one of my thoracic area. She loaded me up on pain pills and patches. She also gave me trigger point injections. The holidays were coming soon so she wanted me to try and get in for the MRI as soon as possible. I got my 2nd MRI on December 26th , 2012. The doctor downtown who ordered that MRI was coming back on January 7th. On the 8th she called me and said the MRI results for my thoracic region was normal. There were no findings at all. In could not believe it. I wanted to cry, scream, run, pound my fists, do something because I felt like I was losing my mind. I ended up leaving work after only half a day because it was physical torture for me. The longer I was upright, either standing or sitting, the pain in my back just kept stabbing me in the back. My left arm felt like it was being ripped off. Under my left arm near my lymph nodes was hurting too. The pain near my elbow and my fingers was getting worse if that's possible. I could barely drive home and had to contort my body in different ways just to get home. One home I immediately got in to bed and in to my "position". The only one that would give me a tiny sliver of relief. By that night the pain was at a 10 on the pain scale. I called the pain specialist downtown and she suggested if I am in that much pain I should go to the ER because she does not know what else I could do at that point. So, I was driven to the ER. I could not stop crying because of the pain. I showed the intake nurse the spot in the middle of my back where the pain originated and the radiating path of my pain down my arm, under my arm pit and then in to hand and fingers. I was admitted and the doctor had to give me 2 injections of diuladed before my pain began to subside. It never goes away no matter what pain meds I have been given. The ER doctor also gave me 10mg of Valium because the muscles around my nerves are now spasming and twitching like crazy in addition to feeling like they're being ripped off my body. I told the ER doctor my long story of my pain and he said that my symptoms coincide with a pinched nerve. He also said that MRI's don't show everything. Sometimes an MRI with contrast is needed. He also suggested following back up with my general care doctor and my pain doctor downtown. He wrote me a small prescription for dilaudid for the pain and the Valium for my nerves for how bad they spasm, contract and twitch. I have been off work again for the past 2 days since I was in the ER. The pain keeps getting worse and increasing in size. Now by my rib cage is beginning to twitch and spasm. I cannot lift my head up and the only way I have been able to write my story is by balancing my tablet on a pillow and typing this all out one-handed. I am a 42 year old woman who feels like she has no life left. My quality of life is for shit. Pardon my language. I have been in constant pain for months now. Pain that is not manageable. I truly felt like I had a pinched nerve. But 2 MRI and 2 nerve test later...and nothing. I do not know where to turn to next. I'm sad, I'm depressed. I am losing faith and hope that anyone is ever going to find out what is wrong with me. I have no family and I am the mother of a 19 year old boy who is trying to go to college but is also worried because there is nothing he can do for his mom. I am not making this pain up, it is real and it is growing to other parts of my body. It started in the middle of my back and now the entire upper left side of my body is in pain and goes numb. Mass amounts of pain killers still do not make the pain go away. It just makes the pain bearable and me feel all doped up. That's no way to live. I just feel as if I have exhausted everything I can think of, I am holding on by a thread at work. I need to keep my job to keep my insurance. But still I lay here and cry with pain. If anyone reads my post, has any suggestion, idea or wild notion, please let me know. I am open minded to any advice because I have nothing left to lose. I am at a loss and don't know how much longer I can endure this kind of pain. I feel like now I need validation that something is wrong because at times I question myself. This is the worst pain I have ever had in my life.

So that is my story. I hope someone reaches out with something I have not thought of that could give me a little bit of hope. Because as things are now I feel like I am going to spend the rest of my life in bed with a pain that no one can find the cause of. Thank you.


  • alexhurtingaalexhurting Posts: 1,991
    edited 01/10/2013 - 2:45 PM
    If mri dont show anything is there a reason they did not do a mylogram ? Often mylogram shows them more then an mri so suprised specialist never sent you for 1'.

    Just hang in there often many of us have gone through the same thing before doctors realise something is causing it,
    Spine is very complicated even for doctors sometimes as we suffer and all we can do is stay calm as we can, and demand correct findings from a specialist,

    Many of us even after surgery end up with life long issues of pain as not all cases of spine injury is the same,
    You will find the problem i am sure just stay on the doctors ass, Ok that came out wrong , You know what i ment ,

    Welcome to spine health , Many members will help and give you suport here ! Best wishes,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • alexhurtingaalexhurting Posts: 1,991
    edited 01/10/2013 - 2:49 PM
    Ps windycityLady. Chicago ? Sorry just noticed the name so i have to assume you are also from chicago area ?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • alexhurting said:
    If mri dont show anything is there a reason they did not do a mylogram ? Often mylogram shows them more then an mri so suprised specialist never sent you for 1'.

    Just hang in there often many of us have gone through the same thing before doctors realise something is causing it,
    Spine is very complicated even for doctors sometimes as we suffer and all we can do is stay calm as we can, and demand correct findings from a specialist,

    Many of us even after surgery end up with life long issues of pain as not all cases of spine injury is the same,
    You will find the problem i am sure just stay on the doctors ass, Ok that came out wrong , You know what i ment ,

    Welcome to spine health , Many members will help and give you suport here ! Best wishes,
    Thank you for your kind words. I have never heard of a mylogram. And no doctor or specialist has ever mentioned it. I am going to bring that up at my next appointment. This is exactly what I was looking for. Something new I had not thought of. Thank you so much!
  • The paragraph below is from my posting on another topic that I think is relevant here.

    Two MRIs did not support my pain patterns, only said things like "mild & minimal" in the areas a problem should be in. Second surgeon ordered a myelogram with contrast CT. These images showed moderate to severe neural foraminal stenosis on left side at two levels that perfectly matched up with the shoulder and arm pain patterns that I had been reporting. At least now the doctors are not pushing me to try things that were aggravating my problems or just useless. This surgeon's practice is associated with a med school hospital. PM doc supported my traveling to this surgeon because he believed me and suspected the problem as now diagnosed. Both PM and Surgeon said basic X-rays and MRIs can miss a lot.

    I'll add
    EMG and NCV tests can spot permanent nerve damage reliably, but can miss intermittent impingement. And their reliability is dependent upon the competence of the tester. My first tests totally missed it. Later repeated tests confirmed problem.

    Best wishes and good luck.
    Severe DDD, Severe neural foraminal stenosis at 2 levels, moderate canal stenosis at 2 levels, significantly impaired left shoulder & arm function. Chronic moderate compression fracture at C6.
  • windycityladywwindycitylady Posts: 6
    edited 01/10/2013 - 4:13 PM
    Daffydolphin: Thank you for your post. I think now more than ever I am going to push to have this test done. Thank you for echoing the other post on this. I feel like I have to push these doctors to do any tests. They just want to give me pills. I want to find and fix the problem. Thank you!
  • windycityladywwindycitylady Posts: 6
    edited 01/10/2013 - 4:13 PM
    Daffydolphin: Thank you for your post. I think now more than ever I am going to push to have this test done. Thank you for echoing the other post on this. I feel like I have to push these doctors to do any tests. They just want to give me pills. I want to find and fix the problem. Thank you!
  • dilaurodilauro ConnecticutPosts: 9,862
    edited 01/10/2013 - 6:38 PM
    is never easy. Many of us here understand how you are feeling. I think that the unknown is much more difficult to deal with than what is known. You know you have pain, you know you are hurting, but to date, the diagnostic test results dont match up.

    So, I would think the first thing for peace of mind is to identify what is actually your problem. Easier said then done, but that is where you need to do some research, start right on this site digging into the various conditions, the various diagnostic tests. But that does not mean when you met with you doctors you TELL them what you want. That would probably backfire in your face. Instead work with your doctors to figure out the best action plan.

    As far as coping with the pain. There are scores of members here with multiple herniation, multi-level surgical fusions and much more. Pain is something we learn to live with. Many of us have been dealing with chronic pain for 20+ years.
    One major weapon you have is to stay positive and stay positive and stay positive.

    Managing pain is so much more than just pain medications. I call it the blend, you can check that out in our FAQ.

    Your are not alone. Here you will find many people who known what you are talking about and what you are feeling.
    Some folks here may sugar coat their posts, others may be more direct and you might even get some tough love...
    Its all ways to help.

    Take care.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • davrunnerddavrunner Posts: 478
    edited 01/11/2013 - 11:03 AM
    I had the MRI's multiple of several years and went to 3 different surgeons had all the nerve blocks and trigger point injections to no avail... Finally I saw a NS who took the time to correlate symptoms and kept looking when he would hit a dead end. He ordered the myelogram and found the pinched nerve. I had a laminectomy in 2008 was supposed to take 2 hors and took 4 as the nerve was entraped by scar tissue. I have permanent nerve damage and still have pain. I have more surgeries in my future but I'm still working and can do some of the things I want so not ready for the fusions that lay ahead.
    Attitude is a huge part of pain management like dilauro said. There are members here who are better at explaining the multi-prong attack that you must wage to stay even or get ahead of the pain. Good luck to you.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • eadubyeeaduby Posts: 100
    edited 01/11/2013 - 11:52 AM
    I understand your frustrations as I have been fighting this war with doctors as well. I am only 24 and am becoming more and more disabled by pain as the months go by and no one will find the problem. My MRIs were also normal, and my spine surgeon (orthopedic) also said there was nothing to be worked on. Pain management belittled me and told me to stop being dramatic, they pushed me to try a second round of PT that ended up doing more harm than good, they refused to work on my medication cocktail to find something more effective. All because of a piece of paper from the radiologist saying "Normal Cervical MRI". They said it had to be just a muscle problem.

    It has been over half a year since this has started and I am struggling to keep some level of normalcy to my life while I continue to search for an answer and fight with the doctors. Luckily my PCP seems to be on my side and willing to help and with the addition of my own research and persistence it is looking like we may be nearing a diagnosis of the pain source (possibly a compression of the C7 nerve root in the neuroforamen on the right side). I pushed the pain management team to do a diagnostic injection that has made it look likely that the C7 nerve root is the pain generator, and my PCP was willing to change my meds and refer me to a neurosurgeon who I am now waiting to see. I realized that if I just trusted the doctors to do their jobs I was never going to get any help, so I did my own research and got rather obsessed with it for quite some time, but it really did pay off in my opinion.

    When it comes to daily coping you have to use trial and error to find whatever you can do to make things work. I have a heat blanket, an arm sling, a soft neck collar, and a heated vibrating back massaging pad as my arsenal to help me survive.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • DaveFusionDDaveFusion Posts: 476
    edited 01/11/2013 - 8:44 PM
    Windycitylady: hi.

    The members have given you lots to think about. He's some more.

    Job: important to stay positive like Ron said. Even when your feeling bad, especially at work. Become an actor, your job is important, if you possibly can, do what's really hard and be as normal as possible there. Many here have lost there's. and lost there insurance and and... Try and have a long term perspective. It's hard, that's why pain relief is important so you can get control of this situation.

    Neurography: it's a specialised modified MRI for seeing and finding nerves being impinged. There's one in Chicago.

    Bone scan: sometimes there can be cysts in the spine that impinge on nerves. These do not show up on MRI. But do on bone scans.

    Dynamic MRI: is a vertical MRI machine that can scan you whilst vertical rather than lying down. It quite often picks up issues not shown on normal MRIs.

    Flex X-ray: X-ray when the neck is flexed forward and backwards. Sometimes finds Spondylolisthesis that is not there when lying down and body supported.

    How to get a doctor to do what you want: well that's one that comes up often. Ron (our System Moderator) seems to be a master at it. He's explained how he's done it often. He essentially directs the consultation with questions and comments that leave a bread crumb trail for the doc to follow that produces the doc to make the decision he wants. Takes knowledge, skill and subtlety.

    Suggest like the others have said that you become your own advocate. But requires you to learn what's here. Also if possible recruit someone trustworthy to go with you to docs. My wife was wonderful with this. She was reasonably up with the technical too. I think the docs sometimes treat you differently with a witness present. And they have to make it simple and logical for her to understand.

    More about the above procedures can be found by using the search function at top of page and putting in those terms.

    Take care.
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