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  • new - looking for understanding

    Hello to all,

    joined this group for support - advice - to find people who understand/can relate to me. Sorry this post is so long just needed to put it out there - this stuff can drive a person insane.

    started going to Dr in Aug 08 for left leg feeling weak tingling pain, bowel issues and pain under left ribcage. Went thru testing colonoscopy - upper GI all normal finally sent for mri in Jan 09

    cervical mri 1-13-09

    there is signigicant central stenosis related prominent disc bulges and disc-osteophyte complex formation C5-C6 and C6-C7. Cord is compressed at both levels, more severely at C5-C6. At c5-C6 anterior to posterior cord dimension is reduced to less than 0.4 cm. There is appreciable left sided foraminal encroachment at c5-c6 and c6-c7, right sided mild foraminal stenosis at both levels as well.

    other levels unremarkable and free of significant central or foraminal
    stenosis.

    Impression: Severe cervical spine degenerative change prominent disc osteophyte complex formation c5-c6 and c6-c7 resulting in central
    stenosis, cord compression and foraminal encroachment.

    ************************************************** *******************

    lumbar mri (jan 13, 09)

    l2-3 - unremarkable

    L3-4 mild disc
    dessication and loss of height. mild broad based disc bulging and early facet hypertrophy. minimal inferir foraminal encroachment slightly grater on left.

    L4-5 - mild disc
    dessication posterior inferior disc fissuring right of midline. mild facet hyphertrophic changes. mild bilateral foraminal encroachment

    L5-s1 disc dessication with posterior fissuring and mild broad based disc bulging. mild facet hyphertrophic changes. minimal foraminal encroachment.

    impression: no significant
    spinal stenosis - early lumbosacral spine degenerative changes as detailed by level.



    I had a ACDF c5-7 with titanium cages - plate and screws due to spinal cord being compressed severely june 09. The first 2 weeks after surgery I felt fine then all the presurgery symptoms along with some others started up. it seems like every week or so after surgery something new would appear.

    As of today I have

    Hard times with recalling - pronouncing words
    say stuff that makes no sense to the topic at hand - basically sometimes I don't understand what I'm saying
    pain at the base of the neck-
    tingling in my arms - legs from the knees down into feet
    intense burning sensation arms - lower legs tingling and pain along the thoracic spine, pain behind right shoulder blade.
    sore ankles - feet (hurts to walk,
    sensations of being bitten by something (either 1 something or many somethings all at 1 time) or falling on a porcupine,
    full body intense itchyness eespecially after a hot shower.
    Pain behind my eyes.
    feeling of tightness of the skin (like I have a hat or headband on my head, or stockings on my legs) on my legs below the knee, arms, head, hands, face but not all at the same time.
    lower back pain mainly in the morning after sleeping in the bed

    Activity - excerise increases pain tingling burning

    Bowel issues to where the second I feel like I need to go it means I need to find a bathroom like now because once it starts coming out I can not control it to stop it. Sorry for TMI.. which results in accidents.

    My neurosurgeon says that everything looks fine surgery wise not sure why the symptoms -

    sent me to neurologist for emg test (normal) and then to see if I should have a LP to be checked for MS - he feels it isn't MS but that my spinal cord is damaged from being compressed so severely and what I am feeling is permanent. (myelopathy)

    2nd neurosurgeon (different medical group)- says surgery looks fine and believes it is also the spinal cord itself.

    Post surgery MRi Reports
    cervical mri:

    c2-3 = mild disc bulging - mild
    spinal canal narrowing - no foraminal narrowing

    c3-4 bony ventral ridging and disc bulging with mild to moderate spinal canal narrowing - mild narrowing of the right neural
    foramen.

    c4-5 disc bulging and bony ventral ridging with mild to moderate
    spinal canal narrowing

    c5-7 - metallic artifact limits evaluation mild to moderate
    spinal canal norrowing.

    impression:
    postoperative changes consistent with prior metallic
    spinal fusion - limits evaluation.
    spinal canal appears congenitally small


    Thoracic mri:

    There are
    ventral osteophytes throughout the thoracic spine.

    broad based disc herniation at t6-7 with mild
    spinal canal narrowing.

    mild multilevel degenerative disc dsease

    mild
    spinal canal narrowing t9-10 / t10-11.

    Thanks


    I've tried lyrica - chambalta - gabapentin - amitriptyline - trazadone all had nasty side effects.

    once again sorry so long and if i'm in the wrong forum.

    Lyz


    PrpleHarly08

    Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

  • #2
    welcome to care cure. you may not get answers to everything, or pain relief, but you will get support from folks who have been there. search the old posts. feel free to ask anything.

    Comment


    • #3
      Wow, your a mess.Sounds familiar, all my MRI's turned out like this. Good luck, I hope you find some releif from your pain. There's pretty knowledgeable people on here, they'll respond and hope you do ok on the pain, it can be hell, and we're here to help and listen.

      Comment


      • #4
        Hi Prpl, Welcome here. This is a great place to ask questions and get support. Many members have either SCI, or possible some type of degenerative process. Are you able to walk? Do you use a wheelchair?

        I am concerned when you said you have "Hard times with recalling - pronouncing words
        say stuff that makes no sense to the topic at hand - basically sometimes I don't understand what I'm saying.."

        Often trouble with speech and memory of loss of words is sign of someone who had some type of brain injury, mini-stroke or some other type of process such as this. Not being able to pronounce words often happens after a stroke. Not to diagnose as this is the internet and cannot do this, but have a link for information on aphasia http://www.nidcd.nih.gov/health/voice/aphasia.asp

        You said you had an EMG. This usually measures electrical impulses as they relate to your muscles. An EEG is a test used to measure brain activity. With either a spinal cord type of injury or stroke type of injury, you can have incontinence.


        I know many of us here with SCI can tell you it is a challenge.. I am so sorry you are going through so much right now. Do you have ability to use your hands or are they weak?
        Sorry about all your pain. Do you have a neurologist or rehab doctor in physical medicine you go to?
        Last edited by med100; 02-03-2010, 08:34 PM.

        Comment


        • #5
          Thank you for the welcome - Sorry it took awhile to reply back was looking at some of the old post especially on Stenosis - ddd.

          Are you able to walk? I am able to walk however the longer i do the legs feel weak (like walking on jello) and sometimes balance is off like i've had a couple drinks but without the enjoyment of tasting them and have problems with the stairs.
          The tingling is now also in the thigh area of the left leg and sometimes in the buttocks.

          Do you use a wheelchair? I don't use a wheelchair

          You said you had an EMG. This usually measures electrical impulses as they relate to your muscles. An EEG is a test used to measure brain activity. With either a spinal cord type of injury or stroke type of injury, you can have incontinence.
          They did do a brain mri in Jan 09 when checking for MS which was clear and Presurgery they also did some test where they placed somethings on my scalp while testing my nerves - which was also done during the surgery not sure if this is an eeg.

          Do you have ability to use your hands or are they weak? Hands are weak my husband has to open alot of things for me - I do drop stuff alot and it seems like I can't get the car door closed tight enough always have to reopen it to close it

          Do you have a neurologist or rehab doctor in physical medicine you go to? There is a neurologist that I can see hwever the neurosurgeon sent me to pain mngmnt and he is sending me to pt for the pain in my upper back.

          I do have a ? regarding mri's I know the front part of the spine which shows the disc that can go into the spinal canal but what boney type things in the back of the spine would be going into the spinal canal and is that part of the DDD.

          Once again Thank you for any help that is given in understanding this and Hope all have a good day.
          PrpleHarly08

          Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

          Comment


          • #6
            was it an evoked potential test? to see if nerve impulse is getting to your brain from lowere extremities.

            Comment


            • #7
              It could of been the EPT - I just know they put lil pad type things on my head and I believe both arms and legs.
              PrpleHarly08

              Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

              Comment


              • #8
                Thanks for giving us more information. Glad you are still ambulatory although having ataxia is very hard. Incoordination or looking drunk when walking is often called "ataxia." http://en.wikipedia.org/wiki/Ataxia. I had a TBI after my first injury, I also had ataxia, incoordination. This is often due to injury on the lower part of your brain (cerebellum). I am so sorry you are feeling so poorly and have so much going on. I am concerned about your cognitive issues and ataxia. You had cervical and lumbar MRI, I am wondering about your brain MRI? Sounds like they were questioning if you have a degenerative process or possibly a demylinating disease. MS is the most common demylinating disease we usually get tested for but could have other process going on.

                Our nerves, in a general explanation, have myelin sheaths around the axons. This myelin is needed for normal nerve conduction. So if there is a disease or process which interferes with myelin or destroys it, then it could cause you to have possibly these type of processes affecting your brain and spinal cord. Here is a link with more information which may be helpful to understand more... http://www.mult-sclerosis.org/myelin.html

                I am wondering if you could also get more information and support from the local brain injury association http://www.biaw.org/site/
                http://dhs.wisconsin.gov/Disabilities/Physical/SCI.htm

                Here is the link to the MS Society in your area http://www.nationalmssociety.org/cha...ces/index.aspx
                Degenerative disk disease link: http://www.webmd.com/back-pain/tc/de...topic-overview

                Thinking of you my friend. We are here for you. Please keep writing and asking questions.
                Possibly one of the nurses or Dr Young has more insight.
                Last edited by med100; 02-17-2010, 11:50 AM.

                Comment


                • #9
                  OK, so you have had a brain MRI which is clear. I believe to actually diagnose MS, they must see lesions on the brain and/or spine. Which at present, you do not seem to have.

                  I don't think that is 100%, but it sounds like they do NOT think that you have MS or a demyelinating disease, but rather that your symptoms are from problems with the spinal cord. I would suggest that you ask the neurologist to explain to you why he/she thinks this is the case.

                  I am curious about your cognitive symptoms. The first thing I wonder is - are you on any medications currently?

                  Balance issues can have various causes - nerves to spine to brain to even ears. It sounds like EMGs were done to look into the nerves, apparently they were normal. So it sounds like the symptoms are more likely from trouble with the spine, as the neuro is saying.

                  The pain doctor sounds like a good idea. Physical therapy might be an excellent idea also.

                  Comment


                  • #10
                    This post reads like my own medical records. My damage is the same. I had the same procedures done as far as decompression ad fusion of c5-c7.

                    My symptoms also left for approximately 2 weeks and then came back in full force PLUS some I never had before. My current symptoms(6 weeks out of surgery) are nearly identical to yours, except that I do not have the overall skin itching you describe and the tingling/burning sensation starts at my upper thighs and goes dow to my feet.

                    The physical therapist believes that I may have had a mini stroke early on in 2009 but the doctor can't find any evidence of it besides the inability of my mouth and brain to function as a team and my constant "foggy" brain. The physical therapist also says I shows signs of central nervous system damage which is non-repairable although she has taught me some coping strategies. Her highest long term goals for me are that I walk greater than 30 ft with my walker and that I am able to stand more than 15 minutes before my legs buckle and drop me.

                    My MRI shows no evidence of brain damage though it does show spinal cord damage. Cervical MRI shows I still have remainig "minor" disc herniation at c4 and c7-T1. Thoracic MRI shows one seriously bulging disc and one mildly bulging disc, neither of which the surgeon believes to be dangerous enough for more surgery at this time. Lumbar shows normal deterioration.

                    I had diabetes for years but finally lost 162 pounds and it disappeared in January 2004. I am still tested every 3 months to make sure it does not come back. I also have fibromyalgia, lupus, osteoarthritis, and rheumatoid arthritis, all of which have been making me steadlily weaker over the last 3-4 years, even with working out and physical therapy.

                    I honestly thought I was going nuts when all my symptoms came back and the doctor could not explain why. I'm not glad you are suffering nearly the exact same fate, but I am glad I'm not crazy!

                    Comment


                    • #11
                      I am sorry for both of you (Prpl and Bem) I am told that often a traumatic brain injury cannot be seen on MRI's.. unless they can see a bleed or some other type of abnormal structure, or catch it on time...

                      Comment


                      • #12
                        Med - Thanks for the links - and your concerns



                        Tam - the neuro basically din't feel it was ms because nothing was showing on the mri's to point towards ms. so they are saying cervical myelopathy with chronic neuropathic pain

                        medications are hydrocodone - lisinopril - vit d -which were all started after symptoms started
                        tried lyrica - chambalta - gabapentin - amitriptyline - trazadone and recently Imipramine which all caused nasty side effects

                        i have not started pt and am not sure when i can have been out of wrk jun 09 then was terminated from my job when fmla ran out in fall - short term disability ended in Dec. and right now $ is tight and are fighting to save our house.

                        Pain dr wants me to see a pain psychologist also for the neuro pain which this last week has been awful. so i have to decide which one would help more pt or pain psychologist need to figure something out cause i feel like this stuff is driving me crazy
                        PrpleHarly08

                        Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

                        Comment


                        • #13
                          all i can offer is welcome. i am paralyzed due to car accident yrs ago, so have no real info for you, other then you found a great site.

                          Comment


                          • #14
                            Bemeeaton,

                            I had a reply all typed out for you however it was lost. Just wanted to say sorry that you also have to deal with these issues and am glad to know that neither one of us is crazy - though at times it sure feels like i'm headed that way especially from the tingling and burning.

                            They checked me for diabetes fibromyalgia, lupus, rheumatoid arthritis, thyroid and hormones. all came back normal.

                            diabetes, thyroid issues and osteoarthritis runs in the family.
                            My oldest sister had lupus - she passed 6yrs ago complications from pneumonia. She was in a nursing home at age 56 due to mobility problems.
                            one sister has fibromyalgia. There are other things that run in the family however nothing that could be connected to this.

                            Just hoping Dr's figure something out

                            hope all is well and if dr's come up with anything i will let you know just incase it may be able to help you also

                            Take Care
                            Last edited by prpleharly08; 02-28-2010, 03:33 AM. Reason: sentence wording
                            PrpleHarly08

                            Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

                            Comment


                            • #15
                              When you have a complicated case, it can be really hard to sort out the cause (causes). When that happens to us, we try to think, for each symptom, of when it started. Then - could it be explained by a medication? Did it start after a procedure?

                              Just some thoughts I'm having - the timing of the symptoms could make some of these incorrect, of course.

                              The itchiness could possibly be from the hydrocodone - opioids make some people itch. Sometimes a different opioid causes less itching - it varies by person.

                              Lisinopril could cause dizziness/wobbliness somewhat.

                              However, I'm having a hard time possibly explaining much of your symptoms with meds side effects.

                              I am uncomfortable that no one seems to be able to find an explanation for your mental symptoms. If you've taken hydrocodone for a while, that would seem unlikely. The only other thing I can think of is if the lisinopril is dropping your BP too low, and you're getting confused - is that possible?

                              The reasons for physical therapy are obvious. Did your pain doc say why he/she wanted you to see a pain psychologist? I'm sure a pain psychologist can be helpful, with coping with your symptoms in general. I'd imagine both might be a good idea, but if you have to pick one, perhaps ask your pain doc to help you with that decision.

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