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Years of fighting and suffering with no conclusive answers

lelu.1819llelu.1819 Posts: 2
edited 06/09/2015 - 11:10 AM in Chronic Pain
Hello. I am currently 24 years old and have been suffering from chronic pain for almost 3 years now, and had suffered from back pain on and off through my years. But in November 2013, just on an ordinary, non spectacular day I started feeling sciatic pain. I toughed it out for a while then went to the emergency room and they chopped it up to an ovarian cyst (Which just showed up on my MRI by the way. It was the only notable thing in the sacrum/coccyx, other than moderate fluid in the "cul-de-sac," which I still don't know what that means. The only notable thing I have found up to date in in my thoracic, which my Doctor has been dismissing this entire time. So back In 2013, it started with the sciatic pain. Which of course quickly made its way down my leg. Very early on I lost feeling in my big toe on the left side. most of all of this is located on the LEFT side by the way. But eventually, things kind of started moving their way upwards. I regained feeling in my toe. But the pain started creeping upwards into my back. Towards my left shoulderblade. The Muscles from the sacroiliac to the shoulderblade would form a solid mass of knots almost like a column and I would be so stiff. Again mostly the severity was always on the left side but nowhere was sacred. I"ve literally had the muscle cramps follow straight from the tip of my big toe, under my foot, up the back of my leg and the back of me, then through my arm, and no joke, up my neck and on to my face to finally creep up on to my head to top it all off with a debilitating headache that blurs vision my on one side. Oh yes. My legs and constantly tingling and on fire/burning sensation in the muscles. Like I said earlier I can't feel my big toes, before, and now. On both sides I can't feel the big ones and on the left one the ones closest to the big one fade in and out. My feet constantly throb with a sharp stabbing pain that makes you wince every time. Especially when i try to walk on them. They shoot up pain that feels like a sword stabbing straight from my heel to your groin or sciatica or hip (take the pick of the day, I swear, it's ridiculous). And I cannot forget my left arm. During flare ups, it feels like an electric knife drenched in icy hot is being wedged up underneath my left shoulderblade. The muscles around that area severely spasm. My chest tightens. Ribs tighten, and even the delicate muscles that lay over and pull the ribs spasm and my ribs start to feel like they're stabbing me. That happened very badly once after I fell in the hospital. Recently my left arm started becoming weak and I slowly started losing felling in my left fingers starting from the thumb. Opposite the thumb, from the pinkie, following all the way up my arm on the outside and through the elbow, then up the outside of the upper arm and into my shoulder, was a pinching sensation. Slightly shocking and cramping. When I moved my shoulder or elbow or wrist joint my arm just intensely throbbed. I generally just kept my arm in sling position. All the while, the sciatic pain in my left leg has been a constant issue. Ok, so here's the important part. The MRI results. Here they are for the Thoracic (axial t2-weighted). There is a smooth physiologic thoracic kyphotic curve. Vertibral heights appear generally maintained. Disc Degeneration is mild at t4-t5 and t9-t10 with dehydration and narrowing. no worrisome narrowing replacing lesions are seen. the remaining extra spinal soft tissues appear normal.
t3-t4 demonstrates a 1mm right paramedian broad disc protrusion. There is mild to moderate spinal cord flattening to the right without stenosis. no hyphertrophic facet djd. no foraminal stenosis.
t4-t5 demonstrates a 2mm right paramedian broad disc protrusion. There is mild to moderate spinal cord flattening to the right without stenosis. no hyphertrophic facet djd. no foraminal stenosis.
t5-t6 demonstrates a 2mm left paramedian broad disc protrusion. There is mild to moderate spinal cord flattening to the right without stenosis. no hyphertrophic facet djd. no foraminal stenosis.
t7-t8 demonstrates a 2mm left paramedian broad disc protrusion. There is mild to moderate spinal cord flattening to the right without stenosis. no hyphertrophic facet djd. no foraminal stenosis.
t8-t9 demonstrates a 1mm bilobed disc bulge. There is mild to moderate spinal cord flattening to the right without stenosis. no hyphertrophic facet djd. no foraminal stenosis.
t9-t10 demonstrates a 1mm left paramedian broad disc protrusion. No significant spinal cord flattening or central stenosis. no hyphertrophic facet djd. no foraminal stenosis.
the remaining thoracic discs do not show evidence of significant bulge, protrusion, or extrusion.
the thoracic cord has a smooth contour and is without focal atrophy, edema, or myelomalacia, No mass. the paraspinous musculature is normal and symmetric without localized edema. no focal bone marrow or ligamentous edema to suggest either bruise or sprain.
This is my newest MRI. I had one almost a year ago, of the lumbar and sacrum, and nothing notable was found. And nothing notable was found this time around in those sections either. I have been complaining about pain in the thoracic area for months, but my doctor told me it was pain radiating up from my sciatica. But that never made sense to me. I have been asking for a thoracic MRI for months, and only now have I gotten one, which makes me wonder how long this has been like this. Originally the doctor Diagnosed the issue in l4/l5-s1/s2 and started steroidal injections there. I had a series of three. The injections did not help the pain at all, if anything it made it worse. After that round of injections failed, the doctor suggested that the issue might be sacroiliac joint dysfunction. Upon further research, that seemed to fit the bill. Yet my initial MRI still didn't show issues with the sacrum. Despite that, My doctor decided to start a series on sij1 injections. I got through the first 2 injections and finally cancelled the third because the injections were making the pain worse and not helping at all. After that, my doctor said that he really wanted to perform a radiofrequency ablation on me in my left sacroiliac, and that would be the best solution for me. I initially refused. And after months of refusing, I broke down from the pain and agreed because my doctor told me I had no other options. My only condition to agree to the radiofrequency ablation was the have an updated full MRI ordered before to make sure he wasn't missing anything. Thank god I did, cause he missed it by a mile. MRI shows nothing in sacrum or lumbar and everything in thoracic. So effectively i feel like for a year and i half now I've been mistreating the totally wrong area, and subjecting myself to unnecessary medical procedures. So far, medication wise, I have consistently been on topamax (currently 200mg/day). I've been through a slew of muscle relaxers. Started with flexeril 10mg 3x daily, worked great until it didn't and the dry mouth became too much, so i was switched to tizanidine (cant remember dosage) but was quickly pulled off because my liver enzymes skyrocketed. Now I am on methocarbanol 750mg 3x/day. For pain I had been on oxycodone 5 mg as needed, but i quickly built up a tolerance and before I stopped taking them was having to take 10mg every hour just to manage the pain. As a personal choice, I didn't want to be on narcotics anymore, so i detoxed from the oxy and switched to tramadol 100mg every 4-6 hours as needed (although it honestly doesn't work). So there's the bulk of my story. If anyone has experienced anything like this, please say something, cause no one can seem to explain any of this (doctors included). I've been in pain for years, and I thought that my procedure on Monday (06-08-15) was going to be the end, but with the new MRI results, its looking like we are back at square 1 and that we have wasted over a year treating nonexistent issues. I just want my life back. I'm only 24. This can't be what my whole life is going to be like...........
There is nobody on the forum qualified or permitted to interpret or advice on an MRI

Liz...........spine-health moderator


  • LizLiz Posts: 7,832
    edited 06/05/2015 - 9:17 PM
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • The best option is to take the MRI and report and consult with a board certified spine surgeon for evaluation and treatment recommendations. If you are unhappy with your current doctor, you do have the option of finding /consulting with another.
    That being said ,measurements are in millimeters and if you look at a ruler ,you will see that the size is very tiny. Not all things reported on an MRI or CT report are considered significant, but only your doctor can tell you if anything on the report may be related to your symptoms.

  • SavageSavage United StatesPosts: 5,427
    Are you seeing a spine specialist?

    There are other tests that can help with discovering source or cause of problem.
    When I began with my pain management/ neurologist, he did other testing and treatments. Some treatments effective, some not, but for me it's trial and try again. He also helped treating symptoms, so I had pain , but he able to take the edge off.

    For me, the EMG most revealing. It showed areas of my spine effected that I had not even given voice to.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Because I started having MRIs in the early 90's finding now are significant. Nothing in an initial MRI can be conclusive of much. No one is born with a perfect spine with all the disks lined up and all angles at 90 degrees.

    There are so many possible causes for "back pain" that I doubt I can ever list them all because new ones are being found daily. I found studying "pain" to be most informative. Pain is a condition experienced and interpreted in the brain. When doctors say, "It's all in your head" they are being 100% accurate.

    I've had several back surgeries, injections, meds, procedures..... I used to have a chiropractor I loved. I have a TENS unit. I sleep with ice. I go in and out of physical therapy. This week's best investment is a good pair of walking shoes which get my knees, hips, and pelvis in alignment which helps me back. As much as we may hope, there is seldom an easy resolution to any kind of pain. Mine started when I was 8 with a horrible dive into a shallow pool and I'm now 48. I keep trying everything not just to alleviate pain but to make my entire body feel healthier.

    I go to a pain clinic monthly now and have been diagnosed with chronic intractable pain. They treat pain as a condition and not as a symptom of something else. You just have to look at every angle to find what helps.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • lelu.1819llelu.1819 Posts: 2
    edited 06/09/2015 - 11:08 AM
    On monday june 8, i had a radiofrequency ablation scheduled, and i got to go over the mri results with my doctor. he said that sacroiliac joint dysfunction will NEVER show up on a mri, which is why the sacrum mri was insignificant. he also said that the disc protrusions are not severe. but they do point to possible issues in the cervical spine. especially coupled with the issues ive been having in my left shouldblade and arm. he ordered an emg of the cervical and upper thoracic. and he also is sending me to a rheumologist. he highly suspects that i might have underlying fibromyalgia along with other specific issues, but he doesnt want to put fibromyalgia on my charts because he feels that is a stigma for people like me, it it will make future doctors give up/skimp on my care. he started me on effexor 37.5 mg (we talked about lyrica, but my insurance won't approve it), for treatment of the fibromyalgia. with all of this new information, i wasnt sure if i wanted to still go through with the nerve burn, but he told me it was necessary to rule out the sacroiliac joint, so i finally agreed. i had the procedure done with sedation, for my own comfort. to my knowledge and understanding and consent and wishes, the procedure was supposed to be performed on my left side. when i woke up from sedation it had been performed on my right side......... so im currently dealing with that. my doctor left the office early that day and wont be returning for a week, so i am unable to talk to him. the office says the procedure is generally performed on both sides, one side then 3 weeks later the other. but i was never told this, by anyone, let alone my doctor, and like i said, i went in to the procedure with the understanding that it was being performed on my left side. i needed it on my left side, which is the side with the most severe pain. so now i either have to skip on the procedure out of frustration and anger, or wait and suffer in pain even longer until i can possibly get the time off work again (approx 1-2 months)......
  • ZenbikerZZenbiker Posts: 13
    edited 06/14/2015 - 2:27 AM
    Here are a couple of ideas for you, First, research for any physiatrists in your area. These are physicians who also embrace proven, less invasive alternative therapies.. The one I was referred to is the most compassionate and concerned doctor I have had in my struggles with my injuries. Discuss with your GP about a referral and see where that takes you. Second, request copies of your MRIs and seek a second opinion from another orthopedist. Last , the dry mouth issue at night . Many of us here experience this; there are lozenges and gums available to be used at night just for this purpose, so a quick call to your dentist and you should have an answer for that problem as well..
    To get the best results from a spinal injury, a patient should listen to their doctor, and the doctor should listen 10 times as hard to the patient.
  • dilaurodilauro ConnecticutPosts: 9,833
    edited 06/14/2015 - 10:46 AM
    while many of your test results do not point to anything significant, you should continue with various treatments and tests until the final result is that a) You have problem ABC or b) You really do not have a problem.

    Fibromyalgia over the years has been come a catch all phrase when you have a condition that no one can find the root cause, but they understand you are in pain

    I think what is very important is getting the results from the rheumatologist. Having an auto-immune problem can present itself in many ways similar to someone with spinal problems. If rheumatoid arthritis does become part of your picture, feel comfortable in the fact that while it can be painful, there are medications to manage it.
    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
  • I was a mystery patient to many drs therapists, radiologists, however pain just kept getting worse. I'm sitting here afer 11 months of seeing surgeons 2nd opinions top drs in NYC and no one could see anything wrong ... on (1) bone scan , (9 MRI's) , and xrays and activitity increased my pain to the point of being in debilitating pain...all my pain was in my sacrum and down my leg you name it I was diagnosed with it and even did all the systemic testing (rheumatologist) also had a nerve test come back negative!!!! PM me if you ant to discuss further.... 4 weeks post op bone fusion l4-l5)..may 11 2015....Don't give up fight! I had a posterior annular tear which can only be detected by this test... I had a failed micro in july 2014, never returned to work because pain continued to get worse. Be your own advocate...
    This can't be happening
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