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If I explain the symptoms maybe you can relate...

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  • If I explain the symptoms maybe you can relate...

    Like I said in a prior post I havea C1/2 injury- incomplete, but I am walking, have a cane, and the right side is not great at all. Let alone my neck. OWW

    I am 3 months since I got hurt. If that helps - or if someone was curious. I forgot to mention that.

    I don't know what I'm 'classified' under besides incomplete obv. I look at my mris and can see it on there, theres blood and edema showing with and without contrast a good 1" or so I guess. My dr said that we have 'major problems' and that was it, I guess I will learn more as the time passes and another scan, good or bad. Mine was posterior white matter something or other. IDK. I can look at my mri if you're truly curious.

    The neck pain is tremendous at times, sometimes it just keeps building and building/doubling almost then I get sick. If the bad weather is coming, I'm in agony for 10hrs at times. Otherwise as long as I am not up for an extended time (over 2hrs a clip) I can semi manage it with what I am on. IfI am up for a little while my arm just hurts starting from by my upper and lower neck and down, and I cant use it let alone flip my hand palm and then the backside much like my drs ask. When I get pinpricked I dont feel it once it gets to the midline of my body (meeting of collar bone) and then all to the right on my collar bone and my arm and some of my leg.
    my son was helping me and he spattered oil and it went on my forearm, and I hardly felt a thing, yet, I had a WHOPPER purple and pink blister that took forever to heal. Personally I am sorta ok with not feeling THAT then...

    Lately, the weirdest thing besides the massaive body jolts, is, I usedto hate being cold, and always had my heat on 75 in the winter. Now, I dont even turn on my heat literally- as I can't stand an ounce of heat. BUT every once in awhile, I become horridly exhausted, cant keep my eyes open whatsoever and get shivering cold, wrap myself in blankets and sleep, or, within momentso fthat I am soooo hot the most uncontrollably severe hot- I'll actually sweat (thats new), and be like I just came out of the shower. I was like that for about 4days thru the weekend couldn't get out of bed I just slept or froze or sweat like crazy. Every LITTLE adjustment, hot or cold, and I was either miserable sweating and just aweful, or shivering literally and soo cold I couldn't stand it. Then today, it was alright and I only got severely hot at the drop of a hat 2xs and had to take my hoodie off. *ha what a feat that is....

    I took a shower but could not feel the heat nor much cold hitting my upper back/shoulder, no matter how far I turn the knobs. Other days, it seemed not AS severe. Its like I'm dipped in wax, or have alayer of cardboard all over my right side.

    THere was an article I was reading on here, about the body jolts and the signals not making their routes and thats why I get these electric looking jolts thru me, but I cant for the life of me find it now at all. So if anyone knows where that may be can you link me to it?? I've tried re-searching or re-doing what I did when I found it and nada- it was in a thread someone responded to someone else about them. SOmetimes its just my good arm, or both legs, other times its my whole entire body all at once. A split second. Sometimes when it happens my heart beats all weird and it freaks me out- or just beat beat beat beat- then it goes back to normal. ONe time it happened at physical therapy and I thought I was falling off the table but I really wasnt- some days I will get 5+ in a day, other days 1. or none. I DREAD them, resting, or sleeping because they scare me half to death when they happen.

    Thanks. I just cant find anything because as I said C1/2, I shouldn't even BE where and what I am dealing with, but, in the same breathe, I am dealing a fair amount of what people w SCIs have somehow. and it is very frustrating. also taxes your mind at times too. because everything is 'new' on how to do things, I cut my finger trying to cut a potato, and didn't even know it. (til my potato was red lol) needless to say, that went in the trash.

    and I've been sleeping ALOT I get tired so easy. I sleep like 18hrs a day I just get horridly exhausted and haveto lay down. If I don't my eyes are closing whether I try and fight it or not.

    OK I vented. I feel alittle better. maybe people can relate better if I say what is going on body wise...... I hope.
    Last edited by rosieC12; 02-22-2012, 08:09 PM.

  • #2
    I'm sorry to hear about your injury. Chances are still very good that will improve with time, although I sense that wont give you much comfort.

    Do you have a physiatrist helping you? Perhaps now is the time to find one of these doctors who specialize in rehabilitation after spinal cord injury. They will best be able to follow your symptoms and give advice. If there isn't one, then possibly at neurologist? Not sure who's helping you now ...

    What are you taking for pain? It sounds like you are having some nerve pains, and some of your sudden electric jolts sound a little bit like paroxysms that some of the folks with multiple sclerosis that affects their spine complain about. Nerve pain medicines can help with those. I'm not saying you have multiple sclerosis of course, but we share a lot of symptoms with those folks.


    • #3
      Hi, thanks for responding. IDK what a psyiatrist (sp?) is. I have a neurologist, and pain mgmt dr, and I goto physical therapy 3xs a week. All of this started w a needlestick in my c1/2 I am on dilaudid 4mg every 4hrs sometimes 6, and will most likely get increased or changed this month as its truly not working many a time for me. I'm also on a muscle relaxer-10mg flexirol, neurontin-2400, fentanyl patch-100mcg, I'm sure there's something else in there I am forgetting.

      Yes I do understand given the lesion/contusion would bring similar cord symptoms from different avenues. I actually worked in healthcare and drs offices prior to all this- now I just sit in the waiting rooms of them instead of put patients in n out of one LOL Ugh. It truly is so hard. The only answer I get is 'I dont know' "it takes time" or- the last one- we got MAJOR problems.....

      Thanks for responding I appreciate it. U know I haveto ice my neck ALOT from the pain and throbbing, does anyone use anything different and it works better???

      When I was in the hospital inpatient for 2wks + I had my heat OFF and turned onto the snow flurries for the thermostat- my drs and family had to wear winter coats bundled and buttoned while I was still complaining I cant get cool. THEN my mom knew something was REALLY up, because she knows I LOATHE the cold lol I wondered if the decadron I was on did that- but I am still sort of like that now- NOT nearly as bad but- I get my quirks.
      Last edited by rosieC12; 02-22-2012, 09:16 PM.


      • #4
        A physiatrist is a specialist in physical medicine and rehabilitation. Many specialize in spinal cord injury. They are experts in management of the recovery/rehabilitation phase of a spinal cord injury. Neurologists know little or nothing about this. I would recommend getting a referral from your neurologist or PCP to a physiatrist in your area who can work with you on your rehabilitation program. You may even need to be referred to an inpatient SCI rehabilitation center.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


        • #5
          Hmm interesting indeed! Thank you again for that. When I was in the hospital for 2wks, they were trying to get me in a subacute center, then didnt/couldn't- I dont even know. Just got swept out the door to be honest. Wasn't mobile much at all then too. I will make a few calls today and see if I can find one and have a consult. Thank you again so much


          • #6
            Follow-up MRI a few questions if anyone can help

            Hi, I had my follow up MRI a few wks ago. It says my lesion shrunk some which was great news its down 10mm? (think mm's I'm not sure)- my neuro was ecstatic to say the least. I do now have more bulges in my report, as well as one effacing the thecal sac. I assume due to all the edema and fluid collection that it created stress on the other discs to create this as they weren't present in the prior mris. Is that possible?

            If its effacing the thecal sac, I assume that warrants some of these pains or no? That luckily isnt at c1/2, its lowr like 4/5 or 5/6 something like that.

            Now that I have suffered a SCI, do I have a lifetime of having to worry about syrinx's and things of that nature that I read about?? Is that level always going to be a 'weak' spot? I am trying to understand more about the after effects of a SCI, and what other things can come up or create due to ever having one- is there things I need to keep an eye on for the rest of my life due to this?- I am hoping someone can answer these for me. Thanks.


            • #7
              Rosie. The fact that you are incomplete means room for improvement. I am 6 years post and still see little gains, You will too. This is a marathon dont get disappointed in lack of quick results,keep trying. I had the electric jolts also in the beginning they went away but cant remember just when. Do what you can to stay active and progressing,you will have to learn what is productive and counter productive for you. Please remain as positive as you can and talk to people that can help,your mind is very powerful in keeping you up or down Contact me any time Craig


              • #8
                Thanks Incoquad, I didn't realize people STILL see improvements after the 'window' I read alot about for reovery times. The jolts still happen, and at times on my good arm now as well only. My bad arm is just there- pain wise, if I am not on my pain meds every 4hrs during the day, at the 5th hour I can't even ATTEMPT to use it due the the pain and inability to. Skin/feeling wise its like its fake to me, even though I can feel deep pain within it otherwise touch there is just not much of anything. Weather changes/cold/rain/snow etc are horrible pain- for the night prior or day prior- of no sleep from a storm coming- and my neck is just as horrible. Even part of my leg/foot doesn't feel right either and is and gets weak like my arm the more I am up. I really had hoped to be much better now.

                My muscles on the right/my stomach I can't do any form of exercise as they are so weak I try but can't do anything too. Its just so strange. Now that I can try to attempt outside my 'comfort' zone of what I know I can do, do I see more of what I can't and what else is also affected. And the only 'feelings' besides the jolts- which moreso scare the heck out of me and then I tense up, not an electric jolt in itself feeling- but thats wht it looks like/ the reflex all at the same time ni my body. I feel deep bad pain/nerve pain, and like i was beaten with a bat, or I feel nothing-just hardly the pressure of something touching me, or I feel the dead numbness like when a limb goes to sleep.

                I tried w an apppt w a psyiatrist, but they never called to confirm and I MISSED the appt, LITERALLY- after 4wks of waiting for it- I was and am LIVID over that- they offered me another appt 5wks after the one I missed I told them forget it I'd find a responsible legitimate dr elsewhere. So I am back at square one. where I DONT want to be. ugh. Sickening. I get mad so easily because someone ELSE screws up and here I sit and rot and wait. Day after day and nothing gets better. I am better than where I first started. but the past month and a half - I am the same.


                • #9
                  The neck pain will get better, without a doubt, I'm guessing you are fused.

                  You are still so soon out of your injury! Amazing recovery - no doubt it will get better, and you'll see progress. I was in a neck brace for 4 months in the hospital, and had pain for close to 6 months, but don't need any pain meds anymore (1.5 years out).

                  The "jolts" are spasms, as I'm sure you know by now. We all get them, some more violent then others, I noticed them get better over time - at least for those of us lucky enough to be so incomplete.

                  Its a long road - but you seem to be on a fast track! It took me 4 months to stand, 8 to hobble, 11 to walk, and I didn't get back my right arm for 1 year. My left is still bad - but still improving.

                  Keep on truckin!


                  • #10
                    Hi Rosie,

                    Too bad you missed your is a little confusing what happened... but don't give up on getting help before you've even started! Call the clinic back and ask to be put on the cancellation list. And then call every week and ask if there are cancellations.

                    If you've waited this long, you can wait a few weeks.

                    You can do it!


                    • #11
                      HI thanks both of you. NO walkingquad, I wasn't fused, I have a cervical cord injury, I explained it in my first few posts. I am told at a year Ishould know where I'm at, but, how this is now. Just brings tears to my eyes.

                      HLH- ahh I tried, what happened is they didn't confirm my damn appt I waited 5 weeks for- THEN when I asked to resched cuz THEY screwed up- they let me know it'd be ANOTHER 5-6 weeks!! I told them to ;.. well I wont tell you what I told them- lol but alas I found REAL psyiatrist to see, and I go very soon. I only was referred last week and they got me an appt right away. I will never deal with Kessler again.


                      • #12
                        Originally posted by rosieC12 View Post
                        HI thanks both of you. NO walkingquad, I wasn't fused, I have a cervical cord injury, I explained it in my first few posts. I am told at a year Ishould know where I'm at, but, how this is now. Just brings tears to my eyes.

                        HLH- ahh I tried, what happened is they didn't confirm my damn appt I waited 5 weeks for- THEN when I asked to resched cuz THEY screwed up- they let me know it'd be ANOTHER 5-6 weeks!! I told them to ;.. well I wont tell you what I told them- lol but alas I found REAL psyiatrist to see, and I go very soon. I only was referred last week and they got me an appt right away. I will never deal with Kessler again.

                        What... you are near Kessler? That is the fantasy for most of us. I would see them no matter how long they made me wait. Your posts are a little confusing, as it sounds like you were expecting them to ?reconfirm and call you. That's not their responsibility really. You missed your appointment, you wait for the next one.

                        It's great you found a physiatrist, but honestly Kessler is one of the best places in the world for SCI. Wow...


                        • #13
                          All physiatrist are trained in SCI but Kessler has board certified SCI specialists. Is your physiatrist a specialist in SCI? And his facility?
                          Also while a referral is made, it is up to the patient to follow up for the specific date and communicate with the facility if you want everything to be done in a timely manner and fits in with your schedule.

                          Also a new pt evaluation takes more time and is scheduled differently because of that. Once you are in the system, it probably wouldn't take that long to get an appointment.
                          It depends on what your plans and issues are but Kessler is one of the best and has experienced SCI healthcare providers .
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                          • #14
                            Kesslers automated computerized system didn't work right and didn't confirm my drs appt- EVERY doctor I know of, and have worked for, confirms appointments 1-3 days in advance. I never got a confirmation call, PLUS, they were to schedule me in one town, so I drove- by myself- an HOUR, just to deliver my notes 2 weeks prior like they requested, but to the WRONG office- so then they inter-office'd it for me. Then, atop that- they didn't confirm my appointment- which I RELY on- I have about 5 drs appointments a month PLUS was in phy therapy 3x a week. They even figured out that it was their fault- yet did NOTHING to get a sooner appointment like EVERY office I've worked for, or been to and seen people have problems. It's common courtesy to try and make up for lost time- and their screwing up- which they did neither and offered me to wait another almost 3 months. Forget that. The secretary I dealt with was lacking severely, and after going through ALL of that- there's no way I would go to them. I was not impressed by their PT either.

                            I saw my neuro- who said I'm at a pleateau, (however u spell it) and that I will have a scar too where the injury is, and that I still have serious defacet (however uspell that one too). I've just had it. My PT discharged me cuz I havent improved in over 2 months. I am at 5 months since injury.

                            I did see the other psyiatrist, i dont know if shes board anything to be honest- I think she is- but I was not wow'ed by her either. I was switching to a psyiatrist to LESSEN how many drs I see a month- as I was under the impression they handle all the meds I am on, handle the PT and gear it to what I need, and know neurology. WRONG- well, at least that one.

                            She said- ohh well your pain mgmt dr is doing a good job- so- I'm not touching that part of it let him handle that- your neuro has been handling everything else, and here's a script for PT - had no where to refer me to- no - have them call me so I can tell them what to do- nothing. SO I wasted my time yet again.

                            I dont need ANOTHER doctor atop all the ones I already have. and my neuro PLUS my outpatient PT (which was kessler) both say I am not progressing anymore. So this is me I guess. I don't even know why I bother getting out of bed anymore. I am tired of having to hunt for a GOOD doctor, or someone ANYONE to know something to do, tell me what the hecks going on- ANYTHING. It's just a waste and an I dont know' waiting game. NOW I am told I will have a scar in there too??? Does that mean I will stay the same- or now that i'm getting a scar (or have one idk?) that I gotta worry about something growing in there, or pushing on something- all this stuff and getting worse or pushing on something that will put me on a vent- or more paralyzed than the severe weakness I have- Its at c1-2. I walk, I breathe. Not that I dont have ALOT going on- but nothing like a true c1-2 injury has that I've read and talk to people with.

                            I still get all those spasm/jumps, one sided bad weakness- ALOT, numbness, cant feel anything properly nor tempertures on that side. TONS MORE, I'm just sick of telling people or trying to remember what I DONT have that i usedto. idk.

                            I'm just fed up and sick of everything. Too sore, its cold and going to rain tonight and I'm dyin in bed w severe pains everywhere and my neck is absolutely killing me. Just miserable.


                            • #15
                              Take a deep breath.

                              Take another deep breath....

                              You need to get a calendar, and write down your appointments. I would never assume a doctor just randomly cancelled my appointment because they didn't call me to "confirm". That was your mistake. YOU call the doctor if you aren't sure. Our doctors never call us for appointment reminders. Now move on, and learn from this.

                              Kessler is the place to be. Make an appointment. Your records are there.

                              Make a list of what you want, your questions, and go in to the doctor asking for a plan.

                              Considering letting the physiatrist take the place of the pain doctor and the neurologist, for example.

                              You also need to start treating your anxiety and depression. This is normal and common for many after injury, and you are not alone with this. If your primary care doctor wont help you, bring it up with the physiatrist.

                              And no, this isn't the end. You are doing better already then 90% of the posters on this board. I know that's hard to believe.... but you will continue to make improvements. People continue to improve after spinal cord injury for YEARS afterwards. Just keep walking, keep doing your home exercises.

                              It is frustrating when your intense round of PT comes to an end, but your therapist was stating that you plateaued only based on INSURANCE COMPANY criteria. Insurance companies want to stop paying for rehab as soon as possible, so they require the therapists to document and require much faster rates of improvement then are sometimes realistic. It is unfortunate, and wrong. Physiatrists realize that really all of us should be doing "therapy"/exercise... indefinitely.

                              The doctors appointments will decrease over time. This is still very early, and honestly, you need the most input you can get at this point. It takes some time to find the best doctors, but invest the effort in looking for them, go prepared with questions and write everything down.

                              Chances are very good that it will get better.

                              Please treat your anxiety.
                              Last edited by hlh; 04-26-2012, 10:41 PM.