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    Old 12-09-2007, 11:43 AM   #31
    monarog
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi HM,

    I'm sorry to hear about your re-surfacing ALS fears...I TOTALLY understand, but agree with Marcia. I'm, of course, no doc either, but have done a TON of reading due to my crazy symtpoms. With the whole ALS thing, there is, from what I learned, the VERY rare person who has a bit more widespread weakness....but seems the typical person has it focused in one particular muscle area and then it moves its way through the body; this does NOT seem to fit your profile - and most likely, the EMG would be somewhat revealing if this was the problem. As far as me, my diagnosis is still in the air. I had ACDF C-6/7 March 2007, diagnosed with cord compression. But, most all of my symptoms remain and am looking at seeing docs once again, after a 7-8 month break as I was just sick and tired of docs wanting to prescribe whatever Rx since they couldn't figure me out and send me on my way.
    My EMG/NVC, I was told was "perfectly normal." At the time, my entire right arm was numb, I had internal nerve vibrations I could hardly tolerate and had a bit of tremoring as well. Again, most all of this remains. Sorry to those who've had to read this before, so just skip this, okay? But, for HM I just want him to understand he's not alone and also to see what symptoms we share. I have had these symptoms since April 2006; Here it goes: internal-type tremoring (like my nerves everywhere are almost vibrating), visual hand and/or leg tremors (waxes and wanes), numbness in bottoms of feet - sometimes up to ankles, muscle twitching - fairly body wide, my right hand today is tingling, my tongue- sometimes numb, sometimes feels too big for my mouth, sometimes burns - always something with my tongue along with too much saliva - only sometimes, I can swallow fine, don't slur words or any of that, my whole face has gone numb a couple of times, my nose is numb pretty much constantly, have had very bad dizzyness, balance feels off, when this all started I had and still have this sudden onset of high blood pressure - I've been an avid runner for years, always, always had a "runner's low blood pressure" - once this all started the high blood pressure hit - it's consistently high. I have had, a few times, weird eye symptoms - light sensitivity, almost a pressure feeling behind my eyes, a bit blurry at times etc. I've had perceived weakness a few times with a hand, leg or foot, but then seems better. ALL of these symptoms wax and wane; but it's ALWAYS something....the hyped up nervous system feeling is my biggest complaint by far. As you can see, I do question this myriad of symptoms and thinking it just can't be my C6-7 only, it's so far reaching and I've really not had much improvement with this stuff since my surgery almost 9 months ago. Some docs have questioned some auto-immune type problem, but all blood work and the Rheumotologist says I seem okay in that dept.
    Lyme disease is really rare where I live. However, I have a friend that lives here, and had many of these same symptoms. He found a doc who was willing to spend time, test and test and test....he is now being treated for Lyme. How closely has this been looked at for you as well? Testing is very unreliable. I tested negative once, but I want to make sure I don't have some weird infection wreaking havoc with my nervous system. My stuff is very body-wide, has been going on for so long, not persistent weakness....I have oh-so-slowly been letting go of the ALS fear - mind you, when I have a particularly bad day, I start my freak out again. Which, my guess is, you will too. I don't think ALS usually hides from docs for long. Yes, there is the very RARE person who it takes forever to diagnose. But, it's a rare disease in the first place, to add to that, to be the RARE person that it sort of "hides," pretty doubtful, don't you think? The few people I've known to suffer that terrible fate, diagnosis was made in a matter of a few months as it progressed pretty darn quickly. Please, please, try to stay positive - so many things can cause the symptoms with rare, bad diseases being the LEAST likely. Please keep me posted - I'll be checking back. Take care Doug. Mona

     
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    Old 12-09-2007, 01:34 PM   #32
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    Re: I have been diagnosed with a Cervical Myelopathy

    HM...

    One other question...what's the status on your reflexes? Mine, at first (April 2006), all were pathologically hyperactive, I'm sure due to cord compression. Now, may be described as brisk to normal depending on the day and doc. As one doc said, my reflexes would NOT have calmed down if it were a serious neuro disease, they wouldn't improve. Finally, I've also had several instances of Raynaud's Phenomenon...a few fingers get a little cold and then turn like frost-bite white, lasting for 30 minutes or so. My NS said due to cord/nerve compression. I had another doc say it was a cirulation issue; maybe it can be caused by either/or/both. I just had this happen again yesterday. So...if my cord/nerves were decompressed in surgery over 9 months ago, why is this still ocurring? I don't get it....just a little more input about the symptoms I've had and don't remember you commenting on your reflexes in the past - just curious. One piece of advice....stay off reading this ALS board or any other ALS reading; you'll make yourself crazy. I finally quit that a number of months ago. Just not a productive way to spend time/energy - I think you'll only cause yourself un-needed worry. Been there done that. If it's any help to you at all, I've been dealing with this for almost 2 years now and am still okay, feel like crap most days, but, so far, it's no death sentence. Crazy how we always want to jump to the worst case scenario, huh? You'll get figured out and helped soon; I believe that. I am going to go one more round with docs again; someone is going to pinpoint this for me sooner than later; I beleive that as well. Keep in touch on that MRI. Take good care. Mona

     
    Old 12-10-2007, 06:21 AM   #33
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    Re: I have been diagnosed with a Cervical Myelopathy

    HM,i don't ahve a whole lot of time right now but i just wanted to throw something out there for you.what i have been wondering about is what you are,how can you have so many left sided symptoms with right sided crap and also having the cord compression going on?
    let me tell you something.i really don;t know why i didn;t think of this before.but despite all the very real damage i have inside of my actual cord(hit three spinal tracts,lost fine motor function to my left hand,have the loss of nerve to my right leg,and a damaged SNS) you simply CANNOT tell even one little bit by looking at my MRI even one year out that i actually even have any types of damage,i mean there is nothing there within my cord what so ever that actually shows up now on my MRIs that indicated i even had any type of real surgery there or the very real dmage that stemmed from it.if you look at my two month post op MRI tho,you can see the myelomalacia going on in there at that time.the thing is,our cords do not actually scar like other tissue in our bodies.the myelomalacia occurs when there is some level of insult to the cord,like with my cut into it by the scalpel and the removal of a glob of vessels that was about 2x4x6mms that creates something that you would usually have a scar from if it was in another area of your body?the myelo is a granualizing of dead tissue that takes place when it gets damaged too severely,then what are called 'macrophages"(our bodies little clean up crews?)swoop on in and kind of 'eat up" the left over crap from the cord areas.boom,everything is gone.while you can actually see all this stuff in the two month post op pics,at the next year check when i had my one year MRI done,it was just all gone,everything that indicated anything had actually happened in that spot was just totally gone.so you cannot see a damn thing there at this point that actually shows why i am having all my symptoms here.are you seeing where i am going here yet?

    what i am really wondering,considering that you are having symptoms that quite frankly all sound like very cord related symptoms,everything you described in that first post,i pretty much have just from MY actual cord damage down to the startle reflex issue.what i was thinking here,and this is only a theory that really could actually explain your situation,is that at some point in time,you actually DID suffer some level of real damage or insult to your cord in a specific area and it just is not actually going to realistically even show itself upon MRI.your symptoms just really DO sound very much like CORD related symptoms much more so than anything else,ya know?even the balance issue which i also have becasue of the tract called the spinocerebellar and the cortico tract were both damaged(the spinothalamic was too).they help with gait and balance and prioperception.realistically this could have actually happened to you at some point considering that you DO have real cord compromise.even something like a sudden stop at some point when you were driving(a sort of whiplash type of movement?) could have created enough force on that already compressed area and pushed it in further,you know what i mean?your situation has just been on my mind alot in trying to possibly imagine why you would have so many unexplainable symptoms,then it hit me,duh,look at your OWN MRI stupid!honestly doug,there just is NOTHING showing upon my very real damaged severely spinal cord MRI pic,nothing.

    at the very least,at this point,i really do think you should at least speak with your NS about how cords show actual injury(how it gets taken away?) and if it could be a real possibility for what you are experiencing right now,your symptoms just really DO sound cord related with possible tract damage too.this is of course just a little theory here but honestly,i still cannot believe that all the real dmage i have in my cord just does not actually show up on any MRI even at the one year MRI.it sounds impossible but honestly,this is completely true for me.i would ask your NS just what would be the most 'likely' cause of the left sided types of symptoms you are having.these do just sound cord and not actual nerve involvement.i really DO think you have actual damage in that cord somewhere but it just is not actually showing anymore(or if it ever actually did?).it would all depend on just how it got injured or whether the actual cord was a 'breakthru' type of injury.even just that sudden compression factor could have casued real damage in there under the right circumstances ya know?do you recall any sort of a neck sudden movement situation before your symptoms actually presented themselves?

    hopefully they can pinpoint an area just based on the symptoms.something just HAS TO be causing this.this could be just one resonable explanation for them.i hope i didn;t confuse you more,lol.just wanted to mention this freaky damage/cord thing to you.let me know if you talk to your doc,K?just curious.hang in there doug,Marcia
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    Old 12-10-2007, 01:26 PM   #34
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    Re: I have been diagnosed with a Cervical Myelopathy

    MONA--HI...thanks for responding....Just got back from the Neuro. to go over the MRI, and EMG.....minor changes on the EMG, and nothing on the MRI to explain anything further..(more of the same )..you asked about my reflexes...they are still hyperreflexive, and the startle reflex is strong as ever (I swear my dog barks on purpose as he walks behind me !!)......I know to stay off the ALS boards, Thanks for suggesting that though.....so for now, it's another blood test to check my CPK numbers..(I believe he said this checks a muscle enzyme present in the blood).......I'm trying not to think about the "worst case scenario".....but they're not giving me any other indications.....yet.......I read your post with my mouth hanging open---I had no idea that you had such wide ranging issues. HOLY COW !! You are dealing with so much, and you still find time to help others...That shows alot of heart and I thank you for that...I don't know much about other responders to my posts, I'm sure there are others with many symptoms as well----So, THANK-YOU to everyone !!.......... THANKS AGAIN, MONA................Take Care, I hope you are feeling better.....Doug



    Marcia--
    WOW for someone that didn't have alot of time....LOL !!!(you must be a really fast typer !!) Seriously, I can't believe that you are devoting so much of your time to my case...you are certainly very knowledgeable (I have to look up alot of words you use)....You asked about a "whiplash" type accident, or sudden trauma to my neck----I've had a few minor car accidents in my time, but nothing for a few years, and even then---they were minor---I did have a motorcycle accident, where I was hit head-on, and thrown off my bike, flipped over a few times, and landed face down, with my head (helmet came off) landing on my folded hands in front of me (Like I was sleeping on the couch !!) But that was 20 years ago !! .......What they (4 NS's, and 3 neuro's)say is that the cord is causing some issues, but it doesn't explain all of them......The Neuro today was concerned about the increased fasiculations he saw on my right arm....I told him these come and go, and vary in intensity...maybe the last time I saw him they were more quiet...the symptoms are definitely progressive, he ordered a blood test (CPK levels), and wants to see me in 3 weeks....I saw Dr. Hiroshi Mitsumoto at Columbia University Medical Center. He's a world renowned expert in ALS....and he was "puzzled". I've never heard some of the terms you've mentioned,but rest assured I will look them up and research them and ask about them next visit. It's definitely very interesting to say the least. You mentioned all of your issues not showing up on MRI's---This is very true, I have to keep that in mind. Who knows, you, Mona,Bits and Neckpatient may have this stuff figured out !! I hope you guys take BlueCross !!! Seriously, Thank-you so much for all your time and energy, I really do appreciate it so much. You guys are the best. I hope you, and all the others who have responed are feeling better...
    Take Care Doug

    Last edited by Braveheart07; 12-10-2007 at 01:36 PM. Reason: correction

     
    Old 12-17-2007, 04:03 PM   #35
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi Doug,
    You've been on my mind and just checking in to see how you're feeling. I'm sure, at this point, you have no definitive answers, all the appts etc. take time, I know. Please keep us posted on how things are going for you. Hoping you're feeling better and getting closer to diagnosis and a strategy to help you to get well soon. Mona

     
    Old 12-17-2007, 04:52 PM   #36
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hey Mona,
    Thanks for posting....You're right---still no definitive diagnosis...While I do have several disc issues, they all agree "something else is going on.."---so on Thurs. I have a spinal tap scheduled, and possibly a myleogram sometime in the near future......One thing that has caught my attention is "Statin- Myopathy"---I was on statins for 5 years---4 years of tricor, and 1 year of Lipitor. Lipitor really sucked, made me tired, sore, and when I started losing my short term memory (my wife had the same reaction), and felt like I was in a fog--I stopped taking it. This was in March of this year. My memory came back very quickly, but these symptoms(muscle weakness) started slowly, until I finally noticed them around Aug. I've been doing my research on Statin related muscle issues, and it's astounding how many people have these issues with this drug. The question is how to reverse the effects...I've been checking many sites and boards (I've seen your name in a few other areas...,,you must really help alot of people)...Of course I still have the c-spine issues, but I'm told they aren't bad enough to cause a problem...yet. So, basically nothing is resolved, but I feel that I'm moving in the right direction.
    Thank-you again for your concern. I hope you are feeling better, and(if I don't "talk" to you soon), have a fantastic, Christmas !!! Doug

     
    Old 12-17-2007, 09:44 PM   #37
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    Re: I have been diagnosed with a Cervical Myelopathy

    hittman - my brother in law's mom had statin myopathy. It took almost 6 months for them to figure it out. After lots of tests, they finally did a muscle biopsy and put all the pieces together. She is 75 and this disease kind of took a more general course. She had diffuse weakness and muscle and nerve pain. Got to where she couldn't stand. Once they stopped the med that causes this, they also were giving her infusion of steroids and some other stuff, she started immediately improving. By about 5 months she was much better.

     
    Old 12-18-2007, 01:30 AM   #38
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    Re: I have been diagnosed with a Cervical Myelopathy

    Neckpatient--
    Good to hear from you...That's interesting about your in-laws Mom.--I hope she is doing well. Is it possible to list her symptoms ?? I have listed my issues that we originally believed to be C-spine related, but upon consultation with NS's and Neuro's..it seems that there is more to it...I have muscle weakness, especially on the left side of my body,stiff- heavy-feeling legs, (which makes walking a chore at times), loss of dexterity in my left hand (which also seems to be atrophying), and also fasciculations that started in my left arm, and are now all over. And, no pain, just some stiffness.... I'm fearing the worst, hoping for something other than that....any insight would be appreciated. That said, I've been lurking, and reading alot lately, and have seen your name, and Monarog, and Feelbad all over this board...You provide alot of comfort to many people--you all should be commended for that, it's a fantastic gesture. I hope you receive as much help as you provide. I hope you are feeling well, and if we don't "talk" soon-- I hope you and your family Have A Merry Christmas........ Thanks again................................... .....................Doug

    Last edited by Braveheart07; 12-18-2007 at 01:31 AM.

     
    Old 12-18-2007, 08:17 AM   #39
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    Re: I have been diagnosed with a Cervical Myelopathy

    honestly HM,your symptoms just sound SOOO cord related,really.there just HAS to be something up in there.it sounds so dead on for that particular area.i would keep pushing that angle.i have those very same,down to the loss of fine motor function and atrophy in my left hand as you do and i KNOW mine are from my cord damage.do you happen to notice ANY possible 'curling' of those fingers at all yet?how about your thumb,can you actually 'pinch' normally still?i just really really do think this has something to do with your actual cord hon.please keep us posted,Marcia
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    Old 12-18-2007, 09:03 AM   #40
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hey Marcia--
    I knew I'd hear from you soon---Man, you are all over this board !! I've been doing tons of research, and "lurking" and have seen you everywhere...it is so great that you can try to help so many people....(you, Mona, and NP have helped me alot !!)....Anyway--I am scheduled for a spinal tap this Thursday....I'll have to cancel a NS appt I had for later that day....lately I feel very weak, and my legs are so heavy it makes walking a chore...as far as my hands are concerned--my left is weak, and I cannot open and close it very fast--it's stiff, and the index finger is the slowest moving on that hand (C6 related ?).I can "pinch" with no problem.no curling of the fingers....my left hand definitely has atrophied..I haven't been to the gym in 8 months, so I expect a little--not this much...I haven't worked in 3 months (I can't be on my feet long at all).I am really concerned with the fasciculations,weakness, and difficulty walking.....I was anticipating getting the disc issues resolved, but the common consensus is that there is something else....I also have a blood test to check CPK levels.....hopefully I'll get some answers soon........
    Marcia--thanks for responding---- Hope you and your family have a Great Christmas !!
    Doug

    Last edited by Braveheart07; 12-18-2007 at 09:09 AM.

     
    Old 12-19-2007, 08:30 AM   #41
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    Re: I have been diagnosed with a Cervical Myelopathy

    just got a sec here HM.but try doing some research on spinal 'tracts'? read thru what every tract governs and then see how these relate to your actual symptoms.so many areas just seem to really 'fit' with your symptoms and tract affectation at varoius degrees.it really is amazing in what is actually governed by these tracts.didn;t know they even existed within our cords til my NS told me i had damage to them.THEN i started doing the research.very interesting.all my damage actually correlated very right on with the three tracts i have damage to.just something for you to look into.it really also helps to get a better understanding of neuroanatomy since you speak to the NSs about this stuff all the time and they already know about it,just not you,ya know?gotta run HM.just do the research.keep me posted,marcia
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    Old 12-21-2007, 09:06 AM   #42
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hey Marcia--
    I did some research on spinal tracts----very interesting stuff....the issue they're trying to figure out is..what is causing the cord to function less than 100%.....they don't believe it's from the compression/herniation....they believe it's a neuromuscular issue perhaps combined with the disc stuff...I've been reading on statin neuropathy--I was on statins for 5 years, and stopped them because they were causing muscle/joint pain, and lethargy. This was in March...symptoms showed up in Aug/Sept. Wether this is something treatable is what is trying to be determined....Obviously, if God forbid this is incureable we can't cure it, but the one thing I can control is surgically correcting the stenosis, herniation. And see what that clears up. I had a spinal tap and myleogram yesterday. In about a week-10 days we should have the results from the spinal fluid, and be closer to figuring something out. Like almost everyone else on the board, I am frustrated, and tired of Dr.'s and tests, and no answers to show for it. I realize that there are lot of people much worse off than me. I try to stay positive, but it's more challenging all the time.
    Marcia have a GREAT/HAPPY/HEALTHY HOLIDAY---I'LL DO THE SAME...........DOUG

    Last edited by Braveheart07; 12-22-2007 at 02:44 PM.

     
    Old 12-22-2007, 08:58 AM   #43
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    Re: I have been diagnosed with a Cervical Myelopathy

    right back at cha HM.i do hope something shows up that explains something a bit more clearly.this not knowing why crap just sucks.been there done THAT one to freaking death.hang in there,at some point,you WILL know.its just the right type of test and knowledge that will get you there.just curious when you looked into the tracts,did anything jump out at you?marcia
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-22-2007, 09:03 AM   #44
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hi Doug,

    Please let us know how the myelogram and tap results go. Yes, all the doc appts, invasive tests are no fun....especially when there are still no definitive answers. Naive me, in my healthier days, I always expected if you had some sort of health problem, you'd go see the doc, they'd figure it out, and if it was fixable, they'd fix it. I never gave any thought to the docs not knowing, taking forever, if ever, to figure out the cause of the problem etc. Never did I think I would just get tired of it all, quit seeing the docs as I would just get sick and tired of them wanting to give me some Rx in hopes it would mask my symptoms, with no answers, and for the most part, the Rx not helping anyway. It is all very humbling, frustrating, emotionally and physcially exhausting....I KNOW you understand, and am sorry you do. Hope you can enjoy your holidays and feel better soon. Keep us posted once you know more...thinking of you.
    Mona

     
    Old 12-22-2007, 02:55 PM   #45
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    Re: I have been diagnosed with a Cervical Myelopathy

    Hey Marcia,
    I did look into the spinal tract sites....to be honest it was a bit involved and confusing. I couldn't concentrate too much on it---info. overload I guess....I'll have to revisit that topic when I have the energy....I'm trying to keep things light-hearted lately, not dwell on things too much. I'm trying to be "normal" so my boys (8 & 11) have a nice Christmas, My wife can use a break from all the Dr's and tests, and worrying about me too. I'll post the spinal tap/myleogram results when I get them---this board has some very intelligent posters, and I look forward to the interprertation here.
    HOPE YOU AND YOUR FAMILY HAVE A GREAT CHRISTMAS !!!!

     
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