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    Old 05-14-2003, 04:42 PM   #1
    RATHER BE FISHING
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    Post Help! Newbie with lots of questions and fears!!

    Hello all,
    Boy, what a fellowship in this group! Im a first time user and I'm amazed at all the support you guys have for one another!
    I had injured myself about 2 years ago and had put up with the pain and numbness untill recently when I couldnt stand it any more. (hey, I'm a hard headed macho type guy) Anyhow,
    My MRI indicated that I have a large central disc protrusion at c5-6 significantley compressing my spinal cord. I dont have any other symptoms besides pain and tingling on my left arm.
    The orthopaedic surgeon says I need to get this taken care of quickly due to possible paralysis in the event of another traumatic injury.
    Well, I have bad vibes with this surgeon and his staff, personally, they have all the compassion of an IRS auditor.
    Im thinking of going to a nuero-surgeon instead of an orthopaedic surgeon. Is this the best type of surgeon to seek for this problem? How many opinions did you guys get? is the fusion procedure the only way out of this mess?
    One of my main concerns is that if I get a fusion type surgery, that with the added stress of the fused vertabrae, I'll end up having to get another in the future. (I'm a Crane Mechanic, and I have this bad habit of analyzing everything) (I'd do the surgery on myself if I thought I had an ice cube's chance in hell to pull it off!) This appears to be the norm in a few people I know who've had lumbar fusions. There just has to be another solution! Is it hard to find Dr's here in the states that do the implants, and what have you heard about them? This Surgeon I just seen says they are 5-10 years away from approval in the US.
    (sorry about the bombardment of questions, but here are a few more)
    What is a good number of surgeries for that surgeon to be considered "experienced"?
    Does the NS procedures differ greatly from the Orthopaedic's surgery types? Personally, I'd feel better with a spinal cord expert doing this than a bone expert!
    Is there any other way of checking the track record of a given surgeon besides "Questionable doctors.ORG"?
    Anyway, thanks in advance of any answered questions!

    ------------------
    "I rather have a bottle in front of me than a frontal lobotomy" -Dr. Demento
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    "I rather have a bottle in front of me than a frontal lobotomy" -Dr. Demento

     
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    Old 05-14-2003, 04:46 PM   #2
    RATHER BE FISHING
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    BUMP

    Sorry about the "I" instead of the "I'd" in the signature. I'm not ignorant! REALLY!!!
    __________________
    "I rather have a bottle in front of me than a frontal lobotomy" -Dr. Demento

     
    Old 05-14-2003, 05:29 PM   #3
    SherryElaine
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    I would say a spine specialist is best. One who does spine surgery only, weather he or she is neuro or ortho doctor as long as that is the only type surgery they do. I used an ortho doctor from a world-renowned staff in Texas from the Back Institute. I think most of the people on here used neuro surgeons. To check on my doctors I used the county court house computer and looked at public records to see if he had ever been sued. I also asked him how many surgeries he had done and also if he had screwed up any patients. Really I did. I also got 3 opinions before I went for surgery and all told me the same thing so I figured I must need the surgery to get better. I forgot the rest of your questions. I am sure you will get many more replys to your post to answer your questions. Lots of nice people here. I look in every once in a while. God luck and God Bless...

    ------------------
    Sher
    Anterior Cervical Fusion w/donor bone & w/plating C5/6 Done March 6-2003
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    Sher
    Anterior Cervical Fusion w/donor bone & w/plating C5/6 Done March 6-2003

     
    Old 05-14-2003, 06:03 PM   #4
    Memer
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    Hi RBF,

    Welcome. There are a lot of C5-C6ers here who will understand your situation. It's obvious that you have a big decision to make.

    Neurosurgeon is best, in my opinion. I also had a spinal cord team and awake fiberoptic intubation because of the central cord compression.

    Consider long and hard this surgery, and get as many NS opinions as you can. I was allowed two, and they agreed with each other.

    You are right about the risk of further surgeries, not to mention the risks with the first surgery.

    I was told the same thing as you--possible paralysis with a whiplash type injury. I was scared to death of being paralyzed from the neck down, so I had the surgery.

    It's been very hard. I'm ten weeks out. More pain. Numbness. Problems walking. Depression. Hopelessness. Helplessness. Ups and downs. I hate that I had to have this surgery. I wish there had been an alternative.

    But I can move everything, and no one has to feed me, etc. I'm thankful for that. I still get those thoughts, though, that THIS IS NOT FAIR. My life is forever changed. I can't do and be what I want. But that would have been the case with or without surgery.

    Other people have come through the surgery with very few problems, if any at all. I don't mean to discourage you--just letting you know my story. Someone will be along soon with a happier tale to tell.

    I've read that if you don't have neck pain, your chances of a full recovery are better, so that's good news for you. I had and still have neck pain. My problem had been going on for years before I was diagnosed, so that may be a contributing factor. Since you've had pain for only two years, you just might have complete relief.

    I know what you mean about being "macho," even though I'm female. I toughed it out so long that by the time of surgery the disks had calcified and broken into pieces, and some pieces were stuck to the cord. I wouldn't have toughed it out if I had known what was wrong.

    Sorry for the negativity. Just being honest.

    Best wishes to you, RBF. And remember--no matter what, you can still fish.




    [This message has been edited by Memer (edited 08-04-2003).]

     
    Old 05-14-2003, 07:35 PM   #5
    Debbie2
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    Memer, I'm so sorry you have and are still experiencing so many problems and the pain. But c5-c6 with myelopathy is a huge difference than the rest of the regular c5-c6ers here. If you have the standard, osteopyhte, compression and pain, it's not that bad a recovery. I would do it again in a heart beat, but again, I had no myelopathy. I would recommend you read and read the post from present to past and see all the opinions and advice that pertains to your situation. I'm with the recommendation of a neuro myself. But I am sure a spine specialist is just as good. Just don't have any experience with one so I don't want to say ...
    Good luck and if you have more questions, feel free.
    More of us will be along soon.
    Feel better Memer, it's a longer and slower recovery for you, but I will keep you in my thoughts and prayers.
    Sorry you're so down
    Debbie

    ------------------
    Debbie2
    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
    September 4, 2002.
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    Debbie2
    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
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    Old 05-14-2003, 07:57 PM   #6
    Debbie2
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    jdog, boy can I relate to that one. Poor Sulynn is just in Virginia and can use some help. There is another board I belong to for chronic pain - pain management (I'm tink) where some of the others here belong. You can do what you just talked about, with the private mail boxes... it's awesome and comes in very handy in cases like these.
    Thanks for being such a good guy, and I'm sorry to hear about all your problems too! Like a deer, just cracked me up.
    Debbie

    ------------------
    Debbie2
    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
    September 4, 2002.
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    Debbie2
    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
    September 4, 2002.

     
    Old 05-14-2003, 08:15 PM   #7
    winged phantom
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    HI,

    So, we have another "manly man" here, just like Cliff! Welcome to the board.

    I used a NS for my two surgeries. I have also heard there is at least one very good ortho guy in town, but I didn't get an opinion from him. I was happy when my NS told me that he does at least 3 or 4 of my type of surgery every week and has been doing it for over a decade. He has never been sued, and only one patient has had real voice difficulties, and that patient had hoarseness even before the surgery, etc. Think of the answers you want, and if you can't get the answers any other way, ask the doctor point blank. You are the consumer! If your doctor is uncomfortable with that,.... consider a different doctor.

    You will hear varying opinions about whether leaving this and not doing surgery can actually cause paralysis at some point, but I think it's probably true. Hey, anyone can become paralysed with a hard enough whiplash; and for us it would just be that much easier.

    Go with you gut instincts: if you do not like this guy, do not go under the knife with him. You must have strong faith in your surgeon that he will be able to lead you out of trouble! Get a few more opinions, especially with a few NS's, to see what they say, and especially if their ideas do not agree. Check online to read what the "conventional" methods of treating your problem are. You are right: once a cervie, always a cervie. Once you have surgery, you will almost certainly have more. And your chance of any type of recovery most certainly correlates with the skill of your surgeon, as well as the type and severity of injury you have sustained. But remember that some of these brilliant guys have almost no bedside manner.

    I think the fusion makes the most sense; I had just a microdiskectomy in 1989, and even then I have heard from about 6 other neurologists and NS's that it should have been fused. I'm inclined to agree with them, finally. But this latest surgery should last me about 15-20 years, I was told, so the 12-13 years I got from the other surgery probably is not that bad. But I lived in much pain those years, and my lifestyle has been much altered; certainly my family's lives have been hurt by this thing I did to myself.

    I have heard that cervical artificial discs are not something to count on right now, and at any rate, you do not want to be one of the first your doctor implants them into! In other words, don't wait in line! But a number of people from the States seem to be getting lumbar artificial discs in Germany and France.

    You quoted Dr. Demento: "I'd rather have a bottle in front of me than a frontal lobotomy" That's so funny, because I had never heard it until this morning when I was talking to a (married) nurse friend who said it to a doctor.... who thought she must have been propositioning him and asked her out for a drink! She has never told this to another doctor, I guess! lol

    Good luck in your quest for information!
    wr



    ------------------
    • 12/29/89 C5-6 Microdiskectomy (no fusion)
    • 4/9/03 ACDF C4-7 with plating and donor bone
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    • 12/29/89 C5-6 Microdiskectomy (no fusion)
    • 4/9/03 ACDF C4-7 with plating and donor bone

     
    Old 05-15-2003, 04:42 AM   #8
    Memer
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    Debbie2 & jdog,

    The kind words are as helpful as Vicodin, just in a different way. I know the myelopathy makes all the difference; I just wish I had known what to expect.

    A newborn deer--that's exactly what I looked like when trying to walk. That's the perfect comparison. Thank God that's gone.

    Jdog, I really would like to hear your story via email. I'm just not sure how to pass my address along to you.

    Thank you, Debbie2 & jdog, from the bottom of my heart.

    RBF--I hope you're seeing all sides and understand that you may wake up feeling wonderful after surgery. Remember to ask your doc if you have signs of myelopathy.


    Memer

    p.s. jdog--NC is a beautiful place. My son was stationed at Camp LeJeune for four years, and his wife is there now. We made several trips down and loved it each time, except for all the rain (my hair doesn't like rain ).

     
    Old 05-15-2003, 09:19 AM   #9
    bdb
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    Hi Rather be fishing. I would go with a neurosurgeon. I I had a larg central disc herniation at C5-6 causeing nerve and cord compression. I had myelopathy. I also had myelomalacia. My neck has fused fine but the C4-5 and C6-7 discs are now compressing the thecal sac and mildly flattening the cord. I also have cysts in the spinal cord at C5-6 and it appears there is another one at C2. It was 16 months between my accident and my surgery. Far to long as far as I am concerned. I feel if I had had my surgery sooner I would not be in the shape I am today.
    Good luck and don't dawdle getting your surgery done.
    BDB

     
    Old 05-15-2003, 09:52 AM   #10
    melanie dawn
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    Hi RBF,
    welcome to the board, you have found a truly unique and caring forum. I am sad to hear of your myelopathy, that is a club which none of us wish to belong to.
    I have congential stenosis, complicated by centrally herniated discs at C5-6 and C6-7,, and C4-5 is badly bulged.ANd my whole cervical spinal canal is half the size it shoud be. So I am a member of the myelopathy club also.
    First of all let me say that myelopathy is a different ballgame than just disc herniations. Although an ortho spine specialist is trained to do the spinal surgry, the importance for those of us with myelopathy is the cord dysfunction. This is definately a neurological issue, rather than a bone issue. So I personally believe that neuro is the way to go, because the real issue of myelopathy is the level of neurological dysfunction, this takes indepth neuro assessment and monitoring.
    I like how you wrote that you would do this yourself if you could. I am a nurse specialist, and I feel the same way. I usually rely on myself for everything. But this is not one of them.
    You need to understand and research as much as you can about the cervical spine and myelopathy. And know that it will never go away, the best that can be hoped for without surgical intervention is to maintain where you are at now. Knowing you are always at risk for an increase in symptoms and dysfunction, especially if there is any trauma. Even a slip and fall can greatly effect your well being.
    This whole scenario sucks, to be honest. And as somebody else mentioned ,we will never be the same , no matter what. I guess it is an issue of quality of life, and risks and odds. I have not had surgery yet, just issues of our health system here. But I can honestly say that I am fighting tooth and nail for surgery. I know I will never be better(probably) than I am now. But I certainly dont want to be worse. ANd there it is, the choices. I have had rapid deterioration and progression since I had an mva in Sept 2000. I use a walker, balance is shot, no gag relflex, swallowing issues,. At the time of my accident i was working going to school 70 hours per week. I struggled on up until last July until the symptoms hit this level.
    So please, read and research, arm yourself with the info to make wise decisions. ANd also to know which professionals to run from. Know all of your options and possibilities, so you can recognise changes in your health and symptoms.

    Good luck with everything, its alot to ponder and we are all here for each other, to answer questions and provide some laughter, and a great sounding board.
    Mel

    ps, you are right about the surgery. Once you have surgery , you are always at risk for needing more. Related to the increased stresses the fusion and lack of mobility place on adjacent areas. Now we have artificial disc surgery being done here in Canada with great success, like in Europe. However I am not a candidate because of the cord compression. ANd I know that myelopathy and cord compression are factors against artificial discs in many places.So you may want to check into that. I know that there are a number of centres in the US testing ADR.

    [This message has been edited by melanie dawn (edited 05-15-2003).]
    __________________
    Congenital Cervical Stenosis,complicated by:
    Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
    loss of lordotic curve
    Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity

     
    Old 05-17-2003, 09:04 PM   #11
    Debbie2
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    [QUOTE]Originally posted by Debbie2:
    [b]jdog, boy can I relate to that one. Poor Sulynn is just in Virginia and can use some help. There is another board I belong to for chronic pain - pain management (I'm tink) where some of the others here belong. You can do what you just talked about, with the private mail boxes... it's awesome and comes in very handy in cases like these.
    Thanks for being such a good guy, and I'm sorry to hear about all your problems too! Like a deer, just cracked me up.
    Debbie2
    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
    September 4, 2002.

    [This message has been edited by Debbie2 (edited 05-18-2003).]
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    ACDF fusion (c5c6) with titanium plate and screws using donor bone -
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    Old 05-19-2003, 09:57 AM   #12
    janie francine
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    Hi, I'm new to the board and have replied to a couple of the other postings with questions similar. I have 2 decent size bone spurs on c5-6, a result of a whiplash injury 18 years ago. I have suffered chronic pain since and experience these symptoms: difficulty turning head left and right, pain and numbness in my arm and hand, loss of strength, locking of fingers, difficulty writing. I have a friend/orthopedist who has seen my Xrays and knows my situation who is recommending the surgery. I haven't had an MRI yet and can't do the procedure (forget what it's called) using dye as I'm allergic to it. I am terrified of the surgery and it's long-term complications, ie more pain, worse symptoms, additional surgeries and complications from the surgery. I have recently started taking Vioxx which helps greatly but not completely. Nonetheless, I'm still worried about the continuing deterioration of my neck and what that might mean longterm. I know no one can make the decision for me, but I'd sure like some input on what your experiences/thoughts are. Thanks.
    Janie Francine - PS-I'm 49 and in good health otherwise.

     
    Old 05-19-2003, 08:22 PM   #13
    GinaB
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    I was refered to a NS by the chiropractor that found my problem. The NS had done his sister and one of his staff's surgeries, so I felt comfortable using him. However, I continued to ask for referals from people I worked with and knew. I also prayed for guidance in picking a NS. I found a different Dr. in Houston, that teaches NS AND Anesthesiology at Baylor College of Medicine, which is ranked 10h in the USA for Neurology! Also, I did a google search, and found my NS was responsible for millions of $$ of research funds, published, etc. I also checked Texas records for lawsuits, etc. Anyway, I knew he was the right choice for me.
    Suck it up you big macho man, and get this thing fixed. I was living on pain pills prior to surgery and have not had ONE or even an aspirin or tylenol since I woke up from surgery. It is MUCH less painful than delivery a baby! http://www.healthboards.com/ubb/dance.gif

     
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