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Hello from a nw member

addictionconsultaaddictionconsult Posts: 23
edited 06/11/2012 - 8:49 AM in New Member Introductions
I have been diagnosed as having some spinal cord compression at C-5-6 and they "fast-tracked" towards acdf w fusion and had almost everything set-up just needed medical clearance and now almost a year has passed.
I am a bit fearful and after reading the posts rightfully so, I am not certain If they felt that I would be paralyzed without the surgery, ( I guess it would be helpful to know. )
But in the past year I have been going through some horrible pain and mysterious symptoms. I now have a burning sensation In my forearms and over the past weeks it has gone into feet and forehead and eyes... almost like an allergy.
I had epidural injections ( first one brought immediate and 2 months of relief second was painful and absolutely no relief in fact these new pains have started.
I think I have a systemic inflammation and the disc problem and spinal cord are affected whenever the inflammation starts.
I have excellent strength in both arms and the pain is the primary factor as well as the weird sensations, That have driven me to the board.
I have also went to ER and told doc there: I was concerned my spine had possibly worsened. He scheduled Cat w contrast and said there were no marked changes and gave steroid ( immediate relief) and valium ( some transient relief (I do not take it because of the addiction and tolerance factors.
The burning is so bad I often fear " I cant take it any longer, I feel like im dying and undiagnosed.
I am quite frightened and often fear
I hope to find some others on here that understand and maybe help some, Better to suffer with others than alone.
My best wishes to all of you for coping and relief.


  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745
    And welcome to spine health. I have lumbar issues and don't know to much about cervicle. But there are pleanty of ppl on here who do. So this is the right place for youu to be. I don't understand if you were on a fast track for surgery, why the surgeon dropped the ball and didn't persue the case w/ your insurance co. Maybe you need to push a little. Or go see a new spinal speacialist.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I agree - push and/or see a new Dr. I feel really bad for you :hug:

    I hope you let us know how your doing :)
    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.
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  • Welcome to Spine-Health. You'll find a wealth of information here in the form of articles and videos and the members of the forum are helpful, knowledgeable and supportive. You're right - it's better to suffer through this with those that understand than alone, and most of us don't have people around us that understand.

    I do understand your cervical issues as that's how my spine problems started. You say you were on the fast track to surgery - what happened? I was also put on the fast track for a 3-lvl that was impinging my spinal cord and causing major problems with my arms and back. From onset to surgery was only five months. What happened to you that it's been so long?

    Have you had an MRI in addition to a CT scan? Please tell us more about you and what's happening - the more we know the more we can help and even just relate to your situation.

    I'm thinking of you, being a fellow neckie (although I also have lumbar issues), but understand the cervical issues more as that's my major problem area and going through more issues above my fusion.

    Again, welcome to SH and I hope that you hang around to tell your story and share with us what you're going through.

    Take care,

    PS It's really early right now, I haven't had enough sleep or coffee, and with my niece back in from Ireland I simply don't get enough sleep and rest, so pardon the typos and if I don't make sense.
  • Thank you for the welcome. Seems like a great place to be ( although I guess most of us would prefer to be in the problematic hangnail group :()
    Well my story: Here goes:
    I had a furniture delivery business: one day en route to the store to make pick-up. I stopped at gas station to use restroom. When exiting: the stall the door came unhinged, at the perfect height; it struck me right below my eye and knocked me backwards into wall with back of my head. I was unconscious, but later able to leave the store and go to work.
    I went to the ER they checked for broken facial bone and they found none.. sent me home.
    I was forced to return to the ER, when I lost vision and vomiting started the following day. (interesting side note- My wife took me since i could not drive, The ER Doc asked accusingly: Why I was back ?" and got in an argument,with my wife, threatening to throw her out....After their fight The doc came back in and became super Doc: all apologetic. He ordered several tests. Then the result showed: I had a concussion. Then they discharged me.
    IN the following weeks I developed constant neck and shoulder pain, Went to every Doc I could find, always undiagnosed. Finally found ad for Doc ( pain specialist- Went to him, he thought; soft tissue & DJD and scheduled me for IDD therapy. I went to 25 of these ( torture rack sessions) they did actually help with horrible headache I was getting then. I begged my Primary to look deeper something was wrong, she assured me it was nothing.
    MOre trips to the ER about 60 in a year always the same complaint Neck pain, weird pulsations, and arm numbness. I think they thought I was a drug seeker.. so they usually just blew me off. Shot of toradnol, some phenegran, and out the door. They kept me a few times for cardiac work up. But never had neuro consult.
    Folks: I lose track of the visits and the time.
    We were moving towards the lawsuit date, filed for my injury; and all my docs said there was nothing serious or lasting; wrong with me. We settled the 300K lawsuit for 20K , given there would be no lasting defects.
    I progressively got worse and worse. Now my stomach and lower intestines were starting to have serious problems. I again was at the ER and my docs most of my time. I found a Doc and she noticed my carotid was blocked they scheduled endartectomy for Feb 2009, It was a horrible surgery but made it through. I never fully recovered from that down time. I got weaker and weaker. I needed help at the nightclub we owned, and had to pay for 2 helpers to keep the delivery business running, It was futile in the end we lost them both last July.
    I went from a firm 210 lbs with mostly muscle; down to 166 lbs and very weak. I urged my Doc to send me to PT, she agreed, and during my first few visits, they said I needed to get clearance from a Neuro.
    THe neuro was a neurosurgeon at the school medical center, He took one look at the Old MRI ( the one from when the door hit me. ) He stated( You have some spinal cord involvement and this is the doc who put me on the "fast track" to surgery. He scheduled another MRI and confirmed his suspicion.
    Now I needed medical clearance for surgery.
    My stomach problem kicked in , and They discovered a heart blockage on rear of heart. By the time I was cleared. My wifes BC/BS insurance was canceled.
    In the time that has passed, I have been to ER countless times: Thinking that death is near. I have new and stranger sensations: numb; arms, hands, feet, eyes burning, .....
    I again pressured my PCP to send me somewhere I could not endure any longer, with what was happening.
    I did finally start taking the medicine they prescribed, It would occasionally provide relief.
    I researched conditions on the web and brought them to my doc. No ideas worked or fit my condition.
    I developed a torturing " burning" in both my forearms, constant and unyielding...Not only was it new; It was scary because I do have some heart problems, I am thinking stroke. I also have tremors and fasticulations around my eyes and lips, and the pain in my neck well...pure hell.
    Again the Docs are stumped. On one visit to ER, the doc was sympathetic and did a CT w Contrast to check for cord changes, He said the spine Looked OK.
    He gave me Valium and steroid, and I felt perfect. No pain Lots of energy and it lasted for about three days. Then the hell returned.
    Finally, ( I became so desperate) I asked to be sent to Pain clinic specialist. They scheduled me for cervical epidural injections. The first shot brought so much relief, and then again: the strange and painful symptoms return. ( if you want to torture something: Do not just kill it; Let it know it's dying, but get it little pieces of hope and then rip them away.- Nazi's in concentration camps)
    I would commit suicide, But have a great wife and and lots of love around me. I could not and would not do that to them. Im sure others on here have felt the same hopelessness, I have gotten around this idea, Though many times, I do wish for death to just come, and be out of this nightmare. ( Hey folks... Just a quick note here, There is No way I would commit suicide, I am describing a time where it did dominate my thoughts.)
    I apologize for this novella, But wanted to let you know my situation.
    Here is the current.
    In my area, they are all going crazy about prescription drug abuse. My one doc told me thy could not prescribe any pain meds whatsoever. So, if you go to ER doubled over in agony they are still hesitant to give any pain meds. That is just plain crazy, But wanted to mention it, Because they are so focused on this they often ignore other conditions when treating me or others.
    My pain seems to happen in this cycle:
    I get cold/flu symptoms and then inflammation sets in and I am in agony.
    Steroids seem to work for awhile, though the other night They gave an injection of morphine and it worked, The arms stopped burning for about 2 days...then returned.
    They canceled my medicaid also, so I had to go without some meds and the pain doc for now. ( The second injection seemed to miss anyways and caused nothing but pain, my neck has been killing me since)
    I went to the ER again in nearby town, They looked only at bowels and did not even check arm complaint or neck pain. ( said constipated..take colace)
    As I write this, The burning sensation has moved all over my body...both sides, Forearms, forehead, eyes, tongue and feet.
    My neck feels like someone jammed an ice pick in the section; middle, right in line with shoulders.
    I cant sleep at all, It seems to get worse at night. I am scared I am having a stroke or Vertebrae Basillar Artery blockage and ready to have a stroke. I really do not know what to do.
    Go back to ER....Only if it gets so bad I cannot take it any longer.
    Trying to get some medical coverage and get checked again by the pain Doc, MY family doc will see me this week, Im going to tell her I cant really take it much longer. I doubt it will help but at least she will know.
    Reading your stories helped, in knowing, I am not alone. I wish you all well. I hope to find some relief soon.
  • Sorry to hear about your history and what's going on now. I'm sorry to hear they cancelled your Medicaid. I know that some drug companies can help with your medications if you check out their websites and apply. I hope your Dr. can order some inexpensive medications for pain. I'm on extended relief meds as my Dr. didn't want me to get addicted to short release medications and it helps control the pain a lot and maybe your wife could lock up your meds for you then maybe your Dr. would agree to that. Cymbalta has helped with nerve pain for me also and they have a patient assistance program at their website.

    I hope you can get some pain relief soon and never give up there may be an answer around the corner. 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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  • I am going to try to get some assistance with the meds. They said they might get the insurance back in effect. I am hoping so, Thanks for the info we are contacting the drug companies and when I see my doc, I am going to ask about the less expensive ones.
    I am trying to stay optimistic I just don't expect any answers any more.
    We used to beg the docs to find or do something, and there was nothing. No choice now but to keep on!
    Thanks for writing
    Rob ( just realized I didnt even have my name on here.)
  • wow, sounds painful. on any had, welcome to spine health. i hope you will find this site a great place to be
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. hope you feel better soon! good luck! Jenny :)
  • Thanks for posting all your info and history. You sure have been through the ringer and man, that was a freak accident, wasn't it?

    Don't stop looking for the doctor/surgeon that will help you. Many of us here have had to get multiple opinions and luckily most find that elusive doctor that actually cares and takes the time to find what the problem is.

    If you do have cervical issues and they're impinging on your spinal cord, you need to know that and start treatment right away. I say this because of the symptoms in your arms and back.

    Maybe starting from square one is the way to go. Search here for a spine doctor, specialist or center that only works on spines to see if that is indeed your problem. If you can rule out spine problems, then it's time to move on to other tests and doctors.

    Don't give up. There really is someone out there that will care enough to do all the work needed to find the root of the problem and that's the key to a solution, of course.

    Take care of yourself and please keep us posted.
  • Welcome to SH. Wow, you have really been through a lot. Wrong place wrong time for sure. I am sorry that you have been not getting the help you are looking for. Please don't give up, keep looking for answers. You are in my thoughts.
    gentle >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
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