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    Old 08-22-2014, 12:48 PM   #1
    Kookoo4
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    So scared

    Hi everyone. I've been lurking here for a while reading posts and trying to understand my condition and am now looking for help to calm me down.
    What seemed like a simple stiff neck that wouldn't go away turned into an MRI, neurosurgeon, PT, and now surgical consult as surgery is recommended. I'm devastated.
    What my MRI shows is two large cervical disc herniation a with cord compression and stenosis. I am now getting pins and needles in my arm and foot. All this time I have tried not to be google obsessed as I am with everything but I just cannot help it now. I am freaking out!!!! Please people out there that have had level 2 fusion and decompression surgery be honest with me and give me your stories. I have 2 very small children and am taking it to the extreme convincing myself I am going to die during or after this surgery! I'm a mess!!!!

    I look forward to hearing from everyone and thank you! ��

    Last edited by Kookoo4; 08-22-2014 at 12:50 PM. Reason: Spelling error

     
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    Old 08-22-2014, 01:35 PM   #2
    ChuckStr
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    Re: So scared

    Welcome to the board Kookoo. Please try to calm down. Even if you need surgery, outcomes for 2 level fusion are generally favorable. In one study of 294 people with symptoms of myelopathy (spinal cord compression) treated with fusion, 80% had significant improvement and 16% were no worse and stabilized. Only 4% had significant complications or deterioration after surgery, less than 1% had severe complications and no one died. There are risks to the surgery, but risk of dying with a competent surgeon is very low.

    The first question, is do you need surgery? How long have you done PT? Did your symptoms increase over that time? How significant is the cord compression? I would discuss this with at least 2 highly qualified spine specialist surgeons (not just neurosurgeons or osteo; but spine specialists). See if they all recommend surgery at this point. I have a small amount of compression due to arthritis (not disk herniation), and my symptoms have reduced greatly with PT, traction etc. When I checked with 5 different spine surgeons they all had differing opinions which helped cement my decision to not have surgery. Having said that, outcomes for myelopathy surgery are best when the surgery is done earlier so try to have a plan as soon as possible.

    Finally, there are definitely people that have had trouble with the type of surgery you are considering. A fair number of the people here have had bad experiences. One thing to remember is that most of the people who had good experiences are off living their lives not on a message board for people with spine problems. Keep that in mind if you receive feedback from others on the board.

    Good luck and let us know how you get on...

     
    Old 08-22-2014, 04:27 PM   #3
    Patt4483
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    Re: So scared

    I had almost the exact problem in my neck which also required surgery. I admit, it is a scary thing to think someone is going to be messing around with your spinal cord. How-ever, everything turned out fine, and it was such a relief to be rid of the pain. It was totally unbearable and left no option about whether I should have the surgery or not. That was back in 1985 and today I'm still doing just fine. Good Luck!

     
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    Old 08-22-2014, 06:59 PM   #4
    Kookoo4
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    Re: So scared

    Thank you both.
    A little more about my story... I was given a rx for physical therapy 3x a week for 4 weeks. At this point I was only dealing with neck and shoulder pain. I felt good when I went and they put me on the traction machine. 2 weeks in my foot and left hand started getting the pins and needles,numbness, and just felt like they were hanging out on my body - if that makes sense. I called my neuro who made me come in, stop therapy, and recommended surgery. One of my herniated discs is very large and digging into my cord pretty badly apparently.
    Freaking out I went home and researched spinal surgeons and came across an article with the "top 28 spinal surgeons in the us." I called the one in Philly close to me and they wanted a copy of my MRI report for him to review and see if he would see me. They called me back 24 hours later and said he reviewed it and would like to see me for a surgical consult on 9/5.
    I know I need to calm down because I will drive myself nuts and you are right- people go online to mainly talk about the bad. I made the horrible mistake of actually seeing some of the surgery on video! I must be a nut!!

    Last edited by Administrator; 08-22-2014 at 08:43 PM.

     
    Old 08-22-2014, 09:24 PM   #5
    teteri66
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    Re: So scared

    Welcome to the board. It is always a good idea not to rush into surgery, and to get more than one opinion before proceeding. The most important decision, after deciding to proceed with surgery is the selection of the surgeon. The first one you are referred to may not be the best trained, most experienced surgeon available to you.

    Remember, even though you are in pain, it is not a medical emergency. You have time to do some research and make the best decision you can.

     
    Old 08-22-2014, 11:22 PM   #6
    Ravin835
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    Re: So scared

    I had the same condition and symptoms; had a bi-level discectomy and fusion c4-6 in 1994, with donor bone. Complete relief of all symptoms, about 4 weeks to get back to normal activity. No problems, absolutely the best thing to do because the herniated discs pressing on the spinal cord will never heal on its own and will cause increasing pain and loss of function.
    Now I have arthritis above and below, but the fused areas are still strong and no narrowing or compression. I am grateful for the skill of the neurosurgeon who repaired my spine.

     
    Old 08-23-2014, 05:12 AM   #7
    Kookoo4
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    Re: So scared

    This is where I am extremely confused. I was under the impression this is an emergency. Can't I permanently lose feeling and function in my hands and arm if I don't act fast? Also I read of people saying on here that God forbid I fell I could become paralyzed if the disc pushed out more and severed the cord.
    The whole crazy part about this whole story is I have no clue how this happened to me! My MRI report says 2 large herniated discs with compression and severe spinal stenosis. Isn't that really bad??

     
    Old 08-23-2014, 12:27 PM   #8
    ChuckStr
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    Re: So scared

    Did the Dr in Philly have access to your history as well as the MRI? The fact that your symptoms increased while doing pt indicates a more acute problem. If the Philly Dr didn't have the whole story perhaps you could call them and ask for a sooner appt. Either way you could call and explain your fears and they may be able to either allay them or give you a sooner appt. What did your neurologist have to say about the new symptoms? Another option is perhaps your neuro could help find a different surgeon who can give you an opinion sooner.

    One of the surgeons I consulted mentioned that actually severing the spinal cord or becoming paralyzed outside of severe trauma is very rare even with a severe herniation although I don't have numbers. It does sound like you have an unstable herniation that could potentially cause more damage if not taken care of.

     
    Old 08-23-2014, 01:31 PM   #9
    Moonstar22
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    Re: So scared

    Quote:
    Originally Posted by Kookoo4 View Post
    This is where I am extremely confused. I was under the impression this is an emergency. Can't I permanently lose feeling and function in my hands and arm if I don't act fast? Also I read of people saying on here that God forbid I fell I could become paralyzed if the disc pushed out more and severed the cord.
    The whole crazy part about this whole story is I have no clue how this happened to me! My MRI report says 2 large herniated discs with compression and severe spinal stenosis. Isn't that really bad??
    Hi Kookoo4,
    the information on this part of your posts is almost to the T of what I was told. My Neuro Dr told me that if I did get into an accident or God forbid if I fell, I'd be a Quad. I had pins & needless in my arms, wrists & fingers, pain in my neck & shoulders etc. He showed me on my MRI where the herniated discs(2 of them) were pressing on my spinal cord & the fluid wasn't barley flowing through. So My surgery was necessary & to be done as soon as possible, that to me was an emergency!

    I have permanent nerve damage in my arms, wrists, hands & fingers just like I had before surgery. A lot of people get relief of this after surgery but I did not. And of coarse I forgot to mention that not only do I have those symptoms, but it hurts too.

    I was besides my self just like you are wondering how this happened. I didn't hurt myself and I wasn't in any kind of accident. IT IS DDD for me & it took me a long time to get that through my head. DDD just is...it could be hereditary or not. My surgeon said I was just a unlucky one.

    The recovery is different for everyone of coarse but for me, I'd say it was a few months before I felt good! The surgery was a success. Though I have permanent nerve damage doesn't mean you will but I do feel it's urgent to get surgery before you might.

    2nd opinions are always the best to get if not more.

    Don't be scared, I know that's hard to do but you will be ok and glad to put this behind you.

    I hope this helps
    __________________
    ACDF C4-5 & C5-6 Dec 2011
    DLIF L1 to L5 Dec 2013
    Jul 2014 MRI, C3-4 hern/comp, C6-7 disc protr/spurs, Thor T6 cyst, T6-7 disc protr on thecal sac, T7-8 spurs/mild on sac. Oct 2014 Diag-Osteoporosis

     
    Old 08-23-2014, 06:17 PM   #10
    Kookoo4
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    Re: So scared

    So actually starting last night and all of today I no longer have the numbness - just the neck pain. I'm wondering if physical therapy and traction caused the tingling and now that I am out thing are improving a bit. Who knows. Yes, the doctor reviewed my MRI report so he knows what's up. I guess I will just wait and see. I always hear surgery is the last resort and I'm wondering if the surgeon will be honest and tell me if he didn't think surgery was required. They won't just cut you open for nothing, right?
    For those who have had the surgery, can you please tell me exactly what to expect? I figure if I had that info I'd stop googling!!! I'm only 34 years old - I don't want to be disabled!!!

     
    Old 08-24-2014, 09:21 AM   #11
    Ruffdogster
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    Re: So scared

    I had c3-c4 fusion in May of 2012 for herniated discs crushing my spinal cord. I went in at 7 am and went home at 5 PM. I had a sore throat for 3 days and after that I had no further pains of any kind. I wore a hard collar for 8 wks., which was the biggest pain in the arse Iam about to have another fusion of C5-C6-C7 in 2 wks. I have neck pain, arm pins/needles and have lost fine motor skills and strength in both arms down to the fingers. My take on this is if the discs herniate and infringe upon the spinal cord they are not going to fix themselves. when the disc collapse your spianal re is no longer stable and will eventually shift, depending on that shift and the way it shifts can be night and day. Surgery is a risk and nothing is a guarantee,but waiting to see what happens is a bigger risk. Ask questions, research,get second opinions. Make the right decisions for your own health. Just my 2 cents good Luck !

     
    Old 08-24-2014, 09:26 AM   #12
    Kookoo4
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    Re: So scared

    Thanks! That's exactly what I was wondering about... The sore
    throat, collar, etc. What about the scarring? Is it horrible?
    Glad to hear everything went well and sorry to hear you need another. I hope you find relief with this one as well. Good luck and thanks for your input!

     
    Old 08-24-2014, 09:30 AM   #13
    teteri66
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    Re: So scared

    There may be a few quacks out there that do unnecessary surgeries but most properly trained spine surgeons recommend surgery as a last resort. Most are so busy trying to keep up with their patients who need surgery that they don't need any new business.

    Keep in mind when you are reading online and hearing conversations from people who have had spine surgery that there are differences between lumbar and cervical surgeries. The actual spinal cord terminates around the first lumbar vertebrae. Beyond this, the nerves wrap together in a bundle called the cauda equina. While it is possible to become paralyzed from a lumbar issue, when something presses on the central canal, it causes pain, tingling and numbness, sometimes drop foot, but almost never paralysis.

    This is not the case with the cervical spine. When there is a large disc herniation or so etching similar, pressing into the spinal canal, the spinal cord can be affected. In the case of trauma, the spinal cord can be severed or damaged enough to cause paralysis below the level of the break. So for this reason cervical issues often have the potential to be more serious.

    If cord compression is minimal there is not the same risk.

    You can listen to ten people's experiences of the same surgery and they will all be different. It is impossible to say how your surgery will go, how your body will react and how you will heal. There are just too many variables and there is no crystal ball. All you can do is learn as much as you can about your particular issues and research the surgeons to find the best trained, experienced surgeon available to you. Then be prepared to put your trust in that individual.

     
    Old 08-24-2014, 12:17 PM   #14
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    Re: So scared

    I've never heard of surgeons recommending surgery for no reason but I suppose its possible. I think its probably more likely someone would be pushed in a non-surgical direction due to pressures from the insurance companies. That said, there are many situations (like mine) where you can look at MRIs and clinical pictures differently resulting in differing opinions regarding surgery. This is a good reason to get multiple opinions. It also helps identify a surgeon you trust and are comfortable with which is probably the most important decision. A good surgeon will give you a shot at the best outcome possible.

    Last edited by ChuckStr; 08-24-2014 at 12:18 PM. Reason: grammar

     
    Old 08-24-2014, 12:55 PM   #15
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    Re: So scared

    My Doc put the incision in my left neck crease so you can barely see it. It's hidden pretty good. Next one will be on the right side, however due to the fact he needs to take out all the old hardware, this one may be more visible, but I'm a guy and scars are suppose to be Manly<joke>. At my age it don't matter, just fix the damn thing!

     
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