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  • Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

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    Old 06-13-2008, 09:08 AM   #1
    Randall3
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    Smile Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Hello And Good Day To All. I Am New To This Site But I Was Hoping Someone Might Be Able To Share A Few Comments Or Suggestions With Me. I Have Been Diagnosed With And Am In The Process Of Scheduling Surgery For Cervical Myelopathy. I Just Wanted To Know If Anyone Has Had Some Of These "odd" Symptoms I Am Having And Do You Think The C.M. Could Be The Cause: Trouble With Vision, Loss Of Balance And Difficulty Walking, Mini-stroke Like Occurances, Ringing In The Ears, Wierd Mini Headaches, Numbness & Tingling In The Face And The Top Of Head, Tightness Of Entire Upper Torso, Occasional Difficulty Talking, Pain-tingling And Numbness In All Limbs At Different Times, Hands Become As Cold As Ice As Well As A Host Of Other WIErd Happenings. If You Have Experienced Any Of This, I Would Appreciate Hearing About It Just So I Know That It's Not Too Uncommon. That Would Be Somewhat Of A Comfort To Me. ALSO, IF YOU'VE HAD SURGERY AND IT HAS RESOLVED SOME OF THOSE ISSUES I WOULD LOVE TO HEAR ABOUT IT AS I AM HOPING THE SURGERY MIGHT RELIEVE SOME OF MY SYMPTOMS. Thank You For Any Responses. I Truly Appreciate It.

    Randall

     
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    Old 06-15-2008, 04:42 PM   #2
    feelbad
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    hi randall. i am just wondering what level of damage has been done to your cord since myeolopathy is spinal cord related not just spinal column related. i am assuming you had an MRI that revealed this? what does it state about your c spine and the cord contact,there would have to be in order to actually have myelopathy. your symptoms DO fit with certain types of spinal cord compression and or damage. some is reversable to a degree but depending on what is actually causing it to begin with,it may not in some cases be reversable. unfortunetly,the cord itself is not very forgiving, but releasing any actual compression upon it can help and also prevent even further damage from occuring.

    basically what you are describing are some of the very same symptoms i now have from spinal cord injury that was casued by having to have a glob of blood vessels removed from my cord in 03. there are tracts within the cord that govern certain body systems and functions. it would appear that one of the tracts that govern your prioperception in you has been affected too. it affects your gait and can also affect vision too. but some of these issues can also be casued by any spinal/cranial nerves that just run down from the face and into the c spine then loop back up again too.

    knowing exactly what your MRI report staes in that summary at the very end would really be most helpful in trying to help figure this out for you. what you are dealing with right now,basically amounts to a certain level of possible spinal cord injury. if you don;t have that MRI report,get yourself a copy,and also start gathering up any and all medical records from any docs or other test results that have been generated on you from this. it just really helps alot in many different instances,to just have all of your very own copies of all records,trust me on this one. it is really hard to say just based upon myelopathy being present(does your MRI state anything about myelomalacia being present as well?) what IS actually going on without knowing the level of your compression or what is causing the cord to actually be affected. so having that MRI is really rather important in order to obtain the very best answers to any questions about your symptoms or anything else. it IS very level specific sometimes when it comes to the cord. the MRI would just give the very best info on your actual level of cord involvement,and any other areas of spinal issues too. generally,when someone has one bigger issue,there are usually others found as well.

    the spinal boards here are really great with alot of very knowledgable and helpful people. its just a scroll on down towards the bottom of the boards here. let me know what that MRI summary states,K? **
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 06-17-2008, 04:22 PM   #3
    Randall3
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    Smile Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Thank You 4 Taking The Time To Share The Info With Me. It Truly Helps To Know That Many Of My Symptoms Are Not That Uncommon. My Surgery Is Scheduled For July 9th, I Will Try To Get A Copy Of My Mri And Other Info Prior To That In Hopes Of Getting A Better Idea Of What And Where The Actual Problematic Areas Are. I'm At The Point Now Where My Entire Body Feels Affected And I May Just Fall Over And Be Paralyzed. "it Is Such A Scary Feeling!"

    Again I Thank You For Your Response.

    P.s.

    You Told Me So Much More Than The Neurosurgeon Took Time To Tell Me. I Am Truly Grateful

    God Bless & Take Care

    Randall

     
    Old 06-18-2008, 07:57 AM   #4
    feelbad
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    believe me randall,my really great NS really didn;t tell me a whole lot either and part of that is there are just so many 'unknowns" that they don;t want to tell you something that may or may not actually occur there,you know what i mean? what i happened to learn about spinal cord damage came AFTER my damage was done and i started having really off the wall undescribable 'things' happening to my body. but your symptoms do fit with some level of cord contact and or possible compression damage? it really is too difficult to say just what will or wont still be there after your surgery,but personally,i do think,considering everything you have going on that you are probably doing the best possible thing for yourself by having that surgery. any affectation of your actual cord can just become worse than it is now without relieveing whatever is casuing that affectation,ya know?

    it really would be most helpful for me(to give you info on your level of affectation) to see that MRI report summary once you get your hands on it. you just really need to keep all copies of all test results and your own medical records too. they just are needed at certain times. after your surgery too,obtain the op notes and all the hospital records as well. this will tell you just what they did and what took place during your surgery. when is your surgery actually scheduled for? if you have anymore questions,feel free to ask randall. **
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 06-21-2008, 12:12 AM   #5
    bluebird77
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    I am new to this post. I recently had a mini stroke or TIA (confusion lasting 6 hours), but they claim its unrelated to my severely compressed spinal cord at the C5/6 and C/7 area. I have numbness in my feet, weird toe curling, constant dull pain in my right arm, constant dull pain in my lower neck, trouble getting words to come out correctly, pain and numbness in arms, hands, feet when working at the computer.. etc. I am having surgery soon 'acdf' at C5/6 and C 6/7 using cadaver bone and plates. Also, they may attempt to correct the kyphosis or what I call reverse lordosis of my cervical spine.

     
    Old 06-21-2008, 12:16 AM   #6
    bluebird77
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Randall - my surgery is scheduled for July 8. Yuck;. I'd like to find out more what to expect regarding recovery. Neurosurgeon says 2 weeks in a neck brace and I can drive in a week if brace doesn't make it too difficult. Nurse says 4 to 6 weeks. I sit at a desk, talk on the phone, and work at a computer. I can't figure out why it could take 4 weeks to recover. They are usinga cadaver bone, andI hear that taking bone from the hip hurts a lot more than cadaver bone. What have you been told?

     
    Old 06-21-2008, 04:49 AM   #7
    feelbad
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    BB you ARE right on about the bone harvest thing being more painful. my hubby had the fusion surgery done about two years before mine and he did have his own bone used. he ended up actually having to use a cane just becasue that hip was so sore. i used cadaver for just that reason,but your own bone tends to take better. my fusion didn;t take so i had to have a hardware placement nine months after the first dang surgery. there are pros and cons to it all. i am a bit suprised at the only having to wear that collar for a couple weeks thing tho,and actually being able to go back to work that soon. usually its at least four to six weeks at the very least. if you actually have cord compression going on,it could be a bit more iffy about your recovery time and extent of post op rehab too. the symptoms you already have going on are a bit more advanced,thats all. it would be possible to have a TIA with or without the cord compression there but depending upon where and how badly that compression actually is,it could possibly be connected.

    do you have your MRI report in your possession where you could just post the summary where that compressed area is and how severe it is? from what you are describing as symptoms,it sounds pretty severe to me anyway.

    you both just really need to be keeping up on all your medical records and all test results just to have that for your own records. this would just show where the spinal cord was at pre op and should anything like an unexpected ER visit ever be needed,you have ALL your own records to just bring with you. believe me,whenever ER docs actually have a "baseline" of info to work from in any medical type of emergency,it just goes so much better for you,the patient. also saves time and hassle too. the one thing that i found out after actually having my cord cut into to remove a glob of blood vessels in it,is that the actual damage just tends to resolve itself to a degree and just cannot be seen anymore upon even an MRI. my one year post op MRI,you simply could not even see real actual damage i DO have inside my cord and no real 'space' where that glob once was either,it all kind of 'filled in'? very crazy really in how the cord just doesn't appear to actually "scar' like other tissue in or on our bodies.very different type of tissue and other things that just run thru that spinal cord.

    i do wish you both lots of luck with what you are having to go thru here. please keep me posted on everything. **
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 06-21-2008, 08:51 AM   #8
    bluebird77
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Feel Bad: thanks for your reply. This is scary stuff, and I've been putting off surgery for a while now. My latest MRI summary (? I think): 1. Multilevel spinal stenosis from c3-c4 throughc6-c7, most prominent at c5-c6, moderate in degree, with severe right lateral recess narrowing, from prominent reversal of the usual cervical lordosis, with additional degenerative retrolisthesis at c5-c6 and c6-c7. No acute cord compression. 2. Multilevel bilateral foraminal narrowing, fairly severe at c5-c6 and c6-c7 bilaterally.

     
    Old 06-22-2008, 05:19 AM   #9
    feelbad
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    bb,yes it is a bit scarey just thinking about the area they will be going into,but at least you do not have direct cord contact,and believe me,that is a huge good thing for you. for all intents and purposes,your situation is very treatable. i assumed you have some level of cord compression or injury,so thats a plus. you have alot of levels of involvement tho,kind of like my c spine at this point, hopefully they can clean out the narrowed areas for you. i wish you lots of luck with the surgery bb. please keep us posted,Marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 06-22-2008, 12:38 PM   #10
    bluebird77
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Marcia - you are awesome. Thanks so much for the good news. I feel greatly relieved, and I and others are so lucky that there are people like you in the world who reach out to others. Thanks again, and I will keep you posted.

     
    Old 06-23-2008, 03:07 PM   #11
    Randall3
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Quote:
    Originally Posted by bluebird77 View Post
    Randall - my surgery is scheduled for July 8. Yuck;. I'd like to find out more what to expect regarding recovery. Neurosurgeon says 2 weeks in a neck brace and I can drive in a week if brace doesn't make it too difficult. Nurse says 4 to 6 weeks. I sit at a desk, talk on the phone, and work at a computer. I can't figure out why it could take 4 weeks to recover. They are usinga cadaver bone, andI hear that taking bone from the hip hurts a lot more than cadaver bone. What have you been told?

     
    Old 06-23-2008, 03:15 PM   #12
    Randall3
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    Re: Cervical Myelopathy: CAN YOU SHARE ANY PERSONAL EXPERIENCE

    Hi B.b., Thanks 4 The Reply. I Hope & Pray Your Surgery Goes Well And You Have Some Positive Results To Share Soon After. Good Luck. I'm Glad You Mentioned Recovery Time Because THE RECOVERY INFO MY SURGEON GAVE ME WAS RATHER VAGUE. I'm Gonna Call His Office Tommorow And Try To Get Some More Detailed Info. If I Find Out Anything Useful I Will Be Sure To Share It.

    Last edited by Randall3; 06-23-2008 at 03:22 PM.

     
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