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Living with degenerative spine problems

rjkrrjk Posts: 4
edited 06/11/2012 - 8:56 AM in New Member Introductions
Hi everyone. My name is Bob. I just wanted to stop by and introduce myself.


This is my chronicle... so far... male - age 32 - tall and skinny - underweight entire life - not active - desk job - smoker

My symptoms began ~10 years ago - started as intermittent jabbing "pain in the butt" on both sides (several inches deep). There was no obvious trauma or prior injury.

I had several images (ct, xray, etc) of pelvis - was never diagnosed with anything specific - and assumed minor SI arthritis and I just dealt with the pain.

8 years passed and the pain slowly got worse and began moving up my back. I had a few more tests (many xrays, a few mri's) and 2 years ago I was diagnosed with DDD/OA and told to stay on NSAIDs. I then attended PT for 2 months but got very little result from it.

Symptoms that slowly got worse over those first 8 years:
- pain slowly spread across much of back, but still primarily along the lower back
- some pain in shoulder blades
- occasional "cramping" kink in neck rarely causing headaches
- tightness when coughing
- unable to "complete" a sneeze; even forceful unexpected sneezes
- occasional night sweats

Doctor told me to see a pulmonologist because some of the symptoms pointed to possible lung problems. I completed PFTs (including being put in a pressure sensitive box) but nothing was found to be wrong in the lungs except slightly low volume capacity. All other blood tests came back negative except for elevated sed rate (not uncommon for
arthritis patients?). All images looked ok except for arthritic degeneration of several areas of the spine.

Additional symptoms
- constant pain and spikes to moderate pain
- pulling pain in lower ribs (both sides) and thus difficulty sleeping/relaxing
- coughing, sneezing, bumping into things, and being generally startled for any reason, would cause back/body to tense up almost to the point of paralysis, pain level 8 albeit only a split second - severe pain remained for upwards of a 30 seconds afterward these unwanted surprises
- hunched forward appearance - as if spine curving forward
- pain in and around sternum

By this time I was taking ~800mg Ibuprofen a day to keep the
inflamation under control - on bad days it would not work great. I also started taking prilosec to help with upset stomache. I've tried Celebrex but it worked less than ibuprofen.

Symptoms that have started in the last 2 years:
- noticeable weight loss (already underweight to begin with)
- rarely would have difficulty holding up head when looking up (really) high
- overall loss of interest in hobbies/activities due to pain
- increased sternum pain and popping/cracking sternum after waking up - stiff and sore
- rare episodes of being unable to take a breath

Most recent symptoms (can't say for sure if any of these are related or "just one of those life pains from aging"):
- pain level hovering about 4 most of the time with common spikes to level 6
- uncommon spikes of pain to level 7-8 - crippling pain but generally very very short lived - usually when twisting or bending
- severe pulling pain under left bottom rib - extremely painful when sleeping on back/sides
- tip of right shoulder blades sensitive to touch - very painful coiciding with loss of strength in right arm for a few days
- occasional tingling in right-hand pinky (and less so in left pinky)
- I used keyboard mouse 12+ hours a day so...
- stabbing burning pain along spine just below and left of the right shoulder blade - very intermittent and shortlived but feels extremely hot


Earlier this year, I decided to visit pain clinic. I went for the spine injections, as a diagnostic procedure, to see if we could hunt down the root of the problem. Stated with facet joint injection (somewhere in L2-L5) which appeared to work but only for a week or so - next came the nerve block injection at the same location which lasted even less time. We had planned to have the nerves burnt off if the injections had worked... but...

The doctor performing the 2nd injection noticed something very strange on flouroscope... her words were "boney mass" but from her reactions it was something they had never seen and could not identify exactly what it could be - they could only suggest that perhaps it was a large spur. I was told that I need to get additional MRIs and then visit a spinal surgeon to determine what it was, if it was severe, and if
there were any surgical options.

I was given a film and told this should be given to the surgeon. Here are some picture of it:

So I visited a spinal surgeon, who was concerned enough from the xray and prior MRI's, that he ordered a full body nuclear bone scan, additional MRIs, and flex/ext xrays.

He was also concerned about my my weight loss. Had my CBC blood results and also got checked for thyroid problems which runs in my family. So far all blood work looks good.

I was given a printout of the bonescan. Here are some pics:

Anyway, I had the followup with the surgeon this week and he, once again, expressed his concern of not knowing what is causing this. He told me that almost every section of the spine was abnormal based on the bone scan results. But he also said that the MRI's and xray's didn't show anything of importance other than the apparent arthritic effects were noticeable.

He ordered CT scans of several more areas as well as additional blood results to rule out tumor and infections. The blood test results that are already in all look good (cbc,bun/creat) but I haven't seen the sed rate results yet. He said surgery is not an option since there isn't anything to focus on but he wants to help me figure out what
this is.

I'm getting the CT scans next week. Fingers crossed.

(at this point I'm surprised I'm not glowing from all these
xrays/scans, hehehehe)



  • hi and welcome to the forum! we are here to offer you support and answer what questions we can. good luck on your upcoming CT reports.. i hope they offer information that will help you! i am sorry you are suffering from pain and still don't know why! getting a diagnosis can be very difficult at times..be sure and have a good look around the forums and make yourself at home. stop by anytime! and let us know what the doctor says!! Jenny :)
  • have you had a chest CT scan ? that would be my next move .are you coughing any blood have you lost weight .? i am thinking more not a back problem but as i am not a doctor i am not allowed an opinion just WHAT I WOULD DO .are you a smoker ? {not having a go ..i smoke too} somethings not right my friend and i would get that CT scan done ASAP
    tony {UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Hi Bob :wave: and welcome :)

    You are a good writer/talker, as in you explain things very well.

    I do have DDD (degenerative disk disease) and spinal spurs as well as spurs on my hips(along with my other issues of the spine) and I have none of the symptoms you have.

    I know each of us are different so don't put too much weight in that statement of mine ;)

    Please do keep all your appts and please keep us updated.

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • SavageSavage United StatesPosts: 5,427
    Not all the spinal issues show up on MRI or scans.
    The EMG was most telling for me..as I didn't need to even respond..doc could see which nerves were any good and which were..misbehaving.

    I had a lot of pain and regular docs couldn't figure it out. Then I started noticing spinal issues and it explains so much. That was half the battle for me. Other half to get more pain control.

    I live about 7 most days, It's not easy, but you're not alone.
    Glad to have met you!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Just wanted to say WELCOME and that I am glad you have found a good doctor to help you find out some answers to your questions.
    Let us know what you find out.

  • After getting all your scans you may want to go for another opinion or two but sounds like this Surgeon is thorough but how about the nerve test/EMG for the numbness tingling? and maybe a Neurologist can help also. Many people here are seeing a Physiatrist(Sports Med Dr.) to help with daily activities and any further testing. You may want to make sure your Dr. is testing for any auto-immune diseases with more blood work and hope you were checked for RA and other arthritis tests markers.

    Also if you sit all day try to get up every hour and take a stretching, walking break and try not to bend any more but crouch instead and turn your whole body instead of twisting. Drink more water daily. I used to drink diet colas not realizing the caffeine can dehydrate you.

    I take Cymbalta along with pain meds for the nerve pain and Lyrica and find Cymbalta helps with the feeling down. I hope you can get some pain relief and get a diagnosis. We're here to support you through this. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thank you everyone for the warm welcome!

    There are a few things that are on my todo list:

    - stop smoking - will be tough since wife smokes as well

    - stop drinking sugar-free redbull (not sure what the effects of all those B vits are on arthritis but I normally drink 8-24 Oz a day for past 6 months) - could be responsible for some of the weight loss as well - will be difficult habit to break because it seems it's the only thing that gets me going in the morning.

    - attempt to correct posture (being a software engineer with poor posture and being very inactive at home has likely made the situation worse over the years)

    - more standing/walking breaks during the day - will be difficult since that is main trigger in my smoking habit while at work.

    Upcoming CT scans requested by the spinal surgeon:
    - chest
    - pelvis
    - thor. spine

    Just waiting (or should I say 'fighting') with the Ins. company to have the scans pre-authorized... sigh... it upsets me when a Dr says they want to see me in a week yet the tests they ask for can't be done immediately due to the insurance red-tape.

    I also want to ask about the EMG - it's something I have not looked into yet (nor has it even been suggested by any of the Drs I've seen). The tingling in my pinky fingers is a very recent symptom (last few weeks or so) and it has almost completely subsided since my initial post. I will bring it up and see what they say.

    The surgeon did mention the possiblity of this being auto-immune condition of some sort. He also wanted to rule out tumors and infections. I've completed the blood work that he requested for those, I just haven't seen the results myself yet.

    He wanted to get these last few CT scans and the blood work out of the way before sending me to a Rheumy or Physiatrist. If these tests don't show anything then that is likely my next move.

    Fingers still crossed.

    Thanks again all - I'll be sure to keep you updated.

  • Good goals especially the red bull even recommends not to drink more then 2 cans a day. Good to hear about becoming more active and walking. Try and drink more water and eat smaller meals or bring healthy veggie snacks to work with you. Glad your Dr. is doing all the blood tests and more testing. Best wishes on getting more tests and find out what's going on. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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