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    Old 06-06-2012, 05:55 PM   #1
    clmitche
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    Scared and more scared

    Hi everyone. I am here because I am scared and am looking for some reassurance. I've been scared for others and taken care of others but have never in my life been scared for me. A little history...
    I have had arthritis in my neck since my 30s brought on from wiplash. I was ok with it with very minor problems until 2003. In 2003 I was diagnosed with two cervical herniated discs and almost lost complete use of my left arm before they found it. I have had pain problems ever since. I tried PT, injections, and a chiropractor. Still no lasting relief.
    Then...
    New years eve 2011 I was rushed to the emergency room diagnosed with viral encephalitis. It was a horrible ordeal with residual headaches I'm still being treated for. I still see my neurologist for the lasting effects.

    I went to my family doctor who is working with my neurologist, because I was having a horrible spell with a headache extending down my neck. They sent me in for x-rays and then an MRI. And here is the reason I bored you with the above...

    I get a call from my doctor telling me I have to see a neurosurgeon right away. I ask why and she tells me that my spinal cord is being compressed. She said it was a 1. She tells me no motorcycle, 4 wheeler, amusement park etc. So they get me in to a neurosurgeon right away. I see the neurosurgeon and he immediately writes a letter to my employer telling them I'm not allowed back to work until after my last appointment with him. Now here is what has me so scared. Of course he said I need surgery but he said if I trip and fall I could severe my spinal cord. So I guess while the neurosurgeon was treating me for the headaches it was hiding my neck problem.

    When I look at the MRI it is very identifiable...there is one spot that you cannot see white, only the spinal cord. I have two vertabrae that have almost fused themselves together and two discs bulging into the cord.

    My symptoms: migraine headaches with neck pain right at the spine, pain in left shoulder blade and shoulder (including my ARM pit), weak left arm and total imbalance. The doc said if I ever went through a sobriety check they would lock me up. That's how bad it is. I'm a typist that makes few errors and all of a sudden all I do is type mistakes.

    I'm really scared and I don't know what to do with it. I feel for every one of you and pray that your outcomes are all positive.

    Anyway, I'm sorry for the ginormous post but I need some reassurance right about now.

    God bless and hugs.

     
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    Old 06-07-2012, 09:40 AM   #2
    jennybyc
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    Re: Scared and more scared

    Many here have spinal cord compression problems and it can be fixed and the cord can be allowed to expand and function perfectly well again.

    It sounds as if your cord is down to 1cm....if it was 1mm, you would be paralyzed so I'm assuming the doc meant 1cm in width. The normal cord size is 11-12mm. so not much bigger. My cord was down to 5-6mms so half of what you have....I could barely walk. We've another person whose cord was down to 4mms.

    Your doc may go in from the front or the back to relieve the pressure....has he told you what kind of surgery he's planning? Recovery time really depends on whether it's from the back or the front.

    All those warnings...heard them and I still waited 9 months for surgery so don't sweat it. The chances of that happening are very low if you are at 1cm. I was told that even though I was down to half that, I only had a 3% chance of paralysis if I had whiplash.

    Relax...the doc's are making it worse than it is but that is what we pay them to do.

    So question #1 is what kind of surgery has he planned for you?

    gentle hugs...........Jenny(fused C3 to T1)

     
    Old 06-07-2012, 11:26 AM   #3
    VinG
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    Re: Scared and more scared

    I truely believe that the best way to overcome being scared is to educate yourself. I would get to a 2nd and 3rd opinion at a major metro teaching hospital. At one point my cord was down to 5 mm, and my doc put his hand on my shoulder and said "don't worry, I can fix this, I see it all the time". My surgery was 3 1/2 weeks ago, and I'm a new person.

    Just my opinion, but, I wouldn't trust a surgeon that scares me.

    I'm not sure where you live, but it's worth a trip to a big city teaching hospital.
    __________________
    Had 3 level ACDF C3-4, C5-7 in May 2012 for "severe" canal and foraminal stenosis

    - Vin

     
    Old 06-07-2012, 12:27 PM   #4
    clmitche
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    Re: Scared and more scared

    [QUOTE=jennybyc;4994621
    Your doc may go in from the front or the back to relieve the pressure....has he told you what kind of surgery he's planning? Recovery time really depends on whether it's from the back or the front.

    Relax...the doc's are making it worse than it is but that is what ay them to do.

    So question #1 is what kind of surgery has he planned for you?

    gentle hugs...........Jenny(fused C3 to T1)[/QUOTE]

    Thanks Jenny. He's planning on going in from the front. He has to get rid of the bone spurs that are pushing against the spinal cord and the spurs that have almost fused two vertabrae together. Then he will fuse c4,5,6.

    He's not waiting for surgery, I left the docs office with a note for work for medical leave beginning immediately. I don't think he is worried as much about the compression but the bone spurs...I could be wrong.

    All I know is I'm in pain and my memory is getting really bad. I can lay something down and go back for it 30 minutes later and can't remember where I put it. That's definitely not me.

    The surgeon doesn't scare me...the surgery does. I've been told for the last five years to get surgery and I always ignored it.

    Thanks so much for the insight. I will try to just let it go.

     
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    Old 06-07-2012, 01:12 PM   #5
    pebblebeach2
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    Re: Scared and more scared

    First welcome to the board.

    I hope that you will find us to not only an informative group of people but also very supportive. A great place to vent when you need to talk and someone to listen to you and will understand your fears and frustrations.

    First my history so you will know what I have been thru:

    - 1994 --- lumbar surgery;
    - 1995 --- cervical surgery;
    - 1997 --- lumbar surgery for "flatback" Harrington Rods implanted;
    - 2000 --- cervical surgery for "kyphosis" Harrinton Rods implanted. It was supposed to be a 1 day surgery for 7 hours or so. Turned into a 2 day surgery for about 12 hours;
    - 2003 --- diagnosed with diabetes; almost died due to glucose level; over 1500; surgery for blood clot in left leg; leg was almost amputated but surgeon was great and saved the leg; kidney failure and dialisysis; and problem was that I was also born with kidney and now in kidney failure;
    - 2005 --- Spinal Cord Stimulator implanted;
    - 2007 --- Surgery for pancreatic cancer; I am a survivor;
    - 2010 --- Spinal Cord Stimulator removed
    - 2012 --- current problems with spine: Narrowing at C6/7 on spinal cord due to myelomalacia a weakening of the spinal cord; radiating pain into shoulders mosted left side; sometimes it feels like my spine is in a vice and someone is turned the vice tighter and tighter; weakness in both arms; nerve damage in cervical and lumbar area; arthritits in cervical and lumbar area; numbness in left leg mainly but now spread to the right foot area; neuropathy issues; loss of balance issues
    - currently on hydrocodone maximum of 6 tablets per day 7.5-750 mg and tizanidine a muscle relaxant 3 talbets per day 2 mg.
    - surgeron is afraid to touch my neck at this point in time. If he did surgery he would have to go in thru the sternum. And as per surgeon it would be "a surgeons nightmare" to do surgery on me.

    So from a personal side I can understand your fears and frustrations and understand why you are scared.

     
    Old 06-07-2012, 01:17 PM   #6
    pebblebeach2
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    Re: Scared and more scared

    Addtional information:

    What I would suggest if possible is first that you see either an orthopedist or neurosurgeon at a major teaching hospital. I don't know where you live or what your insurance coverage is available for you. But get to the best of the best doctors possible. Find someone that is a specialist in spine issues.

    And what I find that is important from a personal perspective is that you must have confidence in the doctors that are treating you.

    While I have some great doctors and usually put my faith into them, I still just as a precaution get another opinion if possible. It never hurts to get someone to look at the information from another point of view.

    Do research and you must be proactive. If you have questions ask them. It is important that your doctor has the ability to reassure you and communicate with you especially with any concerns that you might have.

    Please keep us posted on how you are doing and for any support please post your concerns. We are here for you to get you thru this.


    You are in our prayers and our thoughts.


    Allan

     
    Old 06-07-2012, 09:01 PM   #7
    yakkwak
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    Re: Scared and more scared

    Lots of PRAYERS and hugs and positive energy going your way! You must listen to your docs IF you trust them. Although I'm writing this while I am, myself, in a lot of post-op pain, you must really consider the long term consequences that could, according to what YOU say your docs are telling you, result in paralysis if you do nothing. Make your decisions soberly and then ask them if they can safely pre-treat you for the anxiousness. There's a lot of good advice on this site for preparing for surgery recovery. Also, consider this a time to pamper yourself. If these kind of things would ordinarily pep you up, consider new sheets to recover in, a pedicure so you can look beautiful when stuck looking at your feet, stock your favorite ice cream in the freezer, pre-save movies to watch while sitting there high on pain killers (smile), etc. In the mean time, do as little household chores as possible!!! BTW, stress can interfere with working and short-term memory. Don't sweat the forgetting - it just makes it worse.
    Blessings!

     
    Old 06-08-2012, 10:25 AM   #8
    jennybyc
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    Re: Scared and more scared

    clmitche....if he is going in from the front, it's called an ACDF and is the least painful and fastest healing of all the cervical surgeries. It's also the most common. But you still need a really good doc to do it as way too many are doing them badly. I asked a friend who was a lawyer to have a friend of his who was a malpractice attorney to check out my doc's malpractice cases....a good way to find out who is good and who isn't. Know anyone who is a lawyer????? Some states even let you see how many malpractice cases your doc has had filed against them through the state licensing website.

    The surgery sounds a lot scarier than it really is. You'll have trouble speaking and swallowing for a while after as they have to push the throat and esophagus out of the way and they don't like that! You may even be able to feel the plates for a while afterwards. But that will diminish with time.

    Whatever you think of it, it beats paralysis for sure! Just keep thinking of that and it will ease your fears.....surgery is better than paralysis and with a problem at that level, you'd be talking about at a minimum, the waist down and probably both hands as well. Surgery beats paralysis.

    Hang in there and let me know your surgery date.

    gentle hugs............Jenny

     
    Old 06-09-2012, 11:25 AM   #9
    Chitown2012
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    Re: Scared and more scared

    Quote:
    Originally Posted by clmitche View Post
    Hi everyone. I am here because I am scared and am looking for some reassurance. I've been scared for others and taken care of others but have never in my life been scared for me. A little history...
    I have had arthritis in my neck since my 30s brought on from wiplash. I was ok with it with very minor problems until 2003. In 2003 I was diagnosed with two cervical herniated discs and almost lost complete use of my left arm before they found it. I have had pain problems ever since. I tried PT, injections, and a chiropractor. Still no lasting relief.
    Then...
    New years eve 2011 I was rushed to the emergency room diagnosed with viral encephalitis. It was a horrible ordeal with residual headaches I'm still being treated for. I still see my neurologist for the lasting effects.

    I went to my family doctor who is working with my neurologist, because I was having a horrible spell with a headache extending down my neck. They sent me in for x-rays and then an MRI. And here is the reason I bored you with the above...

    I get a call from my doctor telling me I have to see a neurosurgeon right away. I ask why and she tells me that my spinal cord is being compressed. She said it was a 1. She tells me no motorcycle, 4 wheeler, amusement park etc. So they get me in to a neurosurgeon right away. I see the neurosurgeon and he immediately writes a letter to my employer telling them I'm not allowed back to work until after my last appointment with him. Now here is what has me so scared. Of course he said I need surgery but he said if I trip and fall I could severe my spinal cord. So I guess while the neurosurgeon was treating me for the headaches it was hiding my neck problem.

    When I look at the MRI it is very identifiable...there is one spot that you cannot see white, only the spinal cord. I have two vertabrae that have almost fused themselves together and two discs bulging into the cord.

    My symptoms: migraine headaches with neck pain right at the spine, pain in left shoulder blade and shoulder (including my ARM pit), weak left arm and total imbalance. The doc said if I ever went through a sobriety check they would lock me up. That's how bad it is. I'm a typist that makes few errors and all of a sudden all I do is type mistakes.

    I'm really scared and I don't know what to do with it. I feel for every one of you and pray that your outcomes are all positive.

    Anyway, I'm sorry for the ginormous post but I need some reassurance right about now.

    God bless and hugs.
    My prayers go out to you.... I had an almost paper thin spot on.my cord. I went to northwestern university hospital ad saw a cervical spine specialist/surgeon. My symptom was left hand weakness. I could not open my left hand, still can't after surgery as I have some permanent nerve damage. I had a posterior cervical laminectomy from C3 to C7 with bone graft/rods/screws from C3 to T2. Try and find the best doc that you can, preferably at a major teaching university hospital. Let us know status, we're here for yu.

     
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