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Waited a while to post the MRI and surgeon's findings!

And this is what I have coming. Neck fusion. That is of course my beloved surgeons advice. I have so much degeneration and stenosis going on. At one place I think its C5-C6 my central canal is only 1cm at other levels its 8cm and 11cm. I am so down about the idea of needing cervical fusion at this point. I am going back and forth on whether to do this right off the bat and move forward or hold out until I cant take the symptoms anymore. First thing is trying to resolve the pain I have in my hips, groin and legs....so SI joint shots are ordered, just waiting for approval...then maybe when we resolve some of the pain I deal with daily, then I can wrap my head around another major surgery in a year! I have heard cervical is a cake walk to what I have already been through...even my surgeon said the same. Easy breezy compared to 8 hour 3 level fusion did this past July. My issue at this point is with the cord compression am I playing with fire not getting this done? I have pain, I have weakness and balance issues....got a cane for my bday! Woohoo! Or if I decide to do this now, am I asking for more complications by having a surgery that can cause more problems.

My question is to you neckies.....am I in trouble here with the 1cm not to mention the 8cm and 11cm central canal. Anyone have any advice...I know the forum rules. I didnt post the MRI I am full of osteophytes and even a nerve root sheath cyst. The level of stenosis is alarming to me....what do you guys think? Please, please give me your opinions based on your personal experience. I am going nuts. We need to move, most probably out the state due to me not being able to work...lost the little work I have been able to hold on to...things are stacking and I am feeling so overwhelmed. Peace my friends, Ellen
3 level fusion L3-S1 July 23, 2012


  • I had to smile when I read your post. :-) (in a nice way). I think the measurements that you are referring to should be in mm not cm. 11cm is about 4 and 1/4 inches!

    But, I am so sorry that you are facing surgery on your neck now. Believe me, I truly understand what this feels like.
    I would agree that fusion of your neck is generally easier than a lumbar fusion. How many levels is your surgeon talking about fusing? I had 2 levels fused in November and am feeling pretty much back to normal (that includes my symptoms) and my mobility is only slightly imparred. I am starting to have physiotherapy in the hope that it will deal with that.

    I would say that if you have compression of your cord, especially if you have signs of myelopathy, then you need to seriously consider having the surgery. Now, my first surgeon believed in only doing surgery when absolutely necessary and he kept saying we would wait and see me again in 6 months. This went on for nearly 2 years. I never did find out what they were waiting for. I was told I had signs of myelopathy, but know that I didn't have all of them. Which ones would have meant that they felt it was time for surgery, I will never know. I had this surgeon's registrar tell me it was time for surgery because of the result of his examination, explained how he would do it, explained all the risks and pointed out that there was a risk to not having the surgery because if I was in an accident or had a fall I could be left paralysed. He then went to speak to the consultant for 15 minutes and then came back and said that he felt we should wait. He didn't explain why the change of plan, which was made from another room, without examining me, but that the consultant had more experience and that is what he was saying so we would follow that.

    Needless to say, I got a second opinion, who felt that I should have the fusion done. He said that I had 4 bad levels in my neck, but that he would only fuse the worst two because there was a better chance of a good result and fusion if he only did two levels. He did warn that he may need to do another surgery from the back afterwards.

    Your weakness and balance issues sound concerning Ellen. Weakness is always more of a concern to surgeons than pain and numbness. Can you get another opinion? Did your surgeon feel that having surgery was urgent, or could you wait and see how things develop? I really know how this feels Ellen and making the decision is so hard. I found that once the decision was made, then things seemed much calmer.

    Please keep in touch, and PM me if you want to talk more and have a sympathetic ear.
    Take care,
    Jelly xxx
  • ellencalieellencali Posts: 162
    edited 02/15/2013 - 1:10 PM
    And I knew you would respond...LOL! Yes...mm DUH! You know, I was a little thrown back and I just shook my head and said NO WAY at the time of the appointment....I have so much going on, very little if no fusion showing in my lumbar (though he is not concerned as witht the 3 levels it can take a long time) my SI joint is an inflamed mess and I need relief from that. He said we can do SI fusion if the shots dont work and I just laughed and said again...NO! Meaning I would be fused from my neck to my rear end w alking like a toy soldier. We laughed and I told him I need to take this in steps...meaning SI joint injections first and then tackle my neck. He said that sounded realistic. To be honest I didnt ask what or how many levels but he underlined in my report problems at C4-C7...central canal is 1mm at C6-C7 8mm at CC5-C6 and 11mm at C4-C5....some pretty significant ostephytes which they could care less about...C5-C6 is severely degenerated. So who knows. I just have no idea what having that central cord so small means. I asked if I was in danger if I needed to wait a little and he said you are okay for now but its inevitable. Do you remember what your central canal was?

    My symptoms are mostly pain in my hands and fingers up my arms sometimes. Achy triceps and forearms but nothing unbarable. The weakness on my left side and the balance issues are the problem...I am on a cane and I think of myself as a very young 45...just had a bday 2 days ago! I still have a little one who is 3~hahaha. I cant be that old!

    My husband wants to do it and get it over with...I have to think of my entire family...I am just scared of bad results. You know I have spent endless hours on here...I know what can happen. But the idea of waiting as long as I did with the lumbar I could end up in real trouble. I fought that one for 10 years...taking me 8 to even have an MRI...we all know where that got me! I trust my surgeon...that he will take care of me...I know some think that is crazy but he doesnt bs me. When I push for him to tell me he sees fusion in lumbar he says he wont say anything just to make me feel better. He says what he sees as a surgeon is that things are progressing and doing fine but No...there is not fusion at this time. Maybe I am crazy. I guess I could send my films to a friend who is a neurosurgeon...he consulted on my lumbar for a mere 250 buckaroos...lol.

    So happy to hear you are progressing. I laugh all the time at the though of croaking. My kids will love it. My husband I am sure hopes I lose my voice for 30 days like Francine! Thanks Jelly for responding so quick. Been a rough year and we have a long road ahead of us for this year. We need to move out of state and its just so stacking on me right now. I just want to be on the other side, ya know...not like the dead other side, just the other side of pain! Peace my friend, Ellen
    3 level fusion L3-S1 July 23, 2012
  • MM not CM! Wow....take a chill pill Elle
    3 level fusion L3-S1 July 23, 2012
  • Hello Ellencali,

    I do not have personal fusion experience YET,, Hopefully i will never, but i have dealt with severe lumbar 3 level stenosis for about 3 years now and cervical to a lesser extent.. I have seen 3 TOP NEUROS in Miami FL (Uof M ) 2 say NO FUSION yet and one said 3 level lumbar..

    Anyways since i have had these issues i research this like most to the very end.. I have an Uncle, Grandfather, and 3 co workers who have had CERVICAL FUSION and ALL HAVE BEEN JUST HAPPY WITH IT! 2 levels and 1 level..

    My uncle had 2 level cervical, and then 8 years later had to have 1 level disc replacment..

    My co worker had 2 level fused in his lower back and was so happy 4 months out of surgery he fused his cervical..

    Of coarse everyone waited as long as they could.. 3-8 years.. I am one of those..

  • jellyhalljjellyhall Posts: 4,373
    edited 02/16/2013 - 4:54 AM
    You have me laughing again Ellen!! :-)
    I totally understand that feeling of wanting to be on the other side - the other side of surgery, so it is over and you can begin the healing phase.

    I was never given my measurements of my canal. I have read that anything less than 13 mm is considered stenosis. Trying to use the 'tool' on the disc of my MRI of my neck, it looks like mine measured about 4mm / 4.5mm a year before my surgery. I don't really know what I am doing though!!

    Now your 1mm measurement of the central canal sounds very alarming! That would mean that your cord would have major compression and would be at very great risk of being permanently damaged. (I would like to point out that I am not medically trained, and am just going by my experience and having done lots of reading.) I think if you are able to get a second opinion, that would be a good idea. If nothing else, it will give you even more confidence in your surgeon.

    Your symptoms sound very similar to mine. I have pain in hands and fingers, especially the back of my hands and wrists (my wrists often feel like I have sprained them and I can't pick up anything with any weight to it), sometimes in my forearms and elbows, achy and twitching triceps, shoulders and pain in neck that is very random, generally caused by movement, but doesn't seem to be any movement in particular.

    I also have pain in my feet and ankles and sometimes on the top of my thighs. Occasionally I get pain in my buttocks and sciatica type pain, but only occassionally. When I have it I think 'Oh no, this feels familiar' because it is like the pain that first started me off, that only got worse, before my lumbar fusion!

    Ellen, I think a question I would want to ask is if having the cervical fusion (especially if he intends to do more than more level), will have any effect on the fusing of your lumbar fusion. I have often read that having surgery on the spine can affect other parts of the spine. If you are not fused yet at the 3 levels of your lumbar spine, I would worry that fusing your neck may lesson the chance that you will fuse down there. We are generally told that it will take about 6 months to fuse after a lumbar fusion. From that I would deduce that although things are progressing (as your surgeon expressed), you are a bit slow to fuse. Now I know that 3 levels can be more difficult to fuse than less levels. If I was you I wouldn't want to put any stress on the lumbar spine that could possibly mean there was a problem. I think I would ask him if he felt it would be better wait until the lumbar area is fused, or if the neck is bad enough to go ahead anyway. My surgeon told me that although my whole neck is not good, he would only fuse 2 levels because if he fused more than that, there is a much higher chance that I will not fuse. He said he may need to do another surgery from the back later. Now, I am sure that surgeons have different opinions about this and your surgeon may well think differently. It is a point of view though, from a very experienced neurosurgeon. I hope that all this is helpful, and that it doesn't make things more worrying for you.

    You are in my thought and prayers Ellen.
    We are some of the 'exclusive' spine patients who are 'lucky' enough to need surgery at more than one level of our spines!
    Let's stick together! :-)
  • RangerRRanger on da rangePosts: 805
    hey ellen,
    I chose in 2007 to have a fusion of C4 thru C7 which included a discectomy, partial corpectomy, a strut and cage, along with plates, rods, & screws installed. I was having instability issues, neck, shoulder, & upper arm pain, tingling & numbness in my
    left hand. The 6 hour surgery was uneventful and recovery went well. To this day the fusion is rock solid. In 2010 I started with
    neck pain symptoms during sleep, X-rays & CT's show more disease & degeneration of C7 thru T1 and C3 to C4. I have been putting off the inevitable because the next surgery will most likely put a crimp on my active lifestyle. A lot of the previous hardware would have to be removed and I would probably have little ROM of my neck.
    So I'm weighing my options here which are very few. It is pretty much a given that once you fuse the C-spine adjacent joint
    degeneration is ever so common. Whatever your choice is, never look back, stay positive, and move forward.
    The best to you,
  • alexhurtingaalexhurting Posts: 1,991
    edited 02/16/2013 - 6:58 PM
    How about another opinion from another specialist to see if there is another option of the least invasive way to clean things up just in case a big fusion can maybe be avoided,

    Lot of new stuff I see being used at some of the hospitals now by doctors robotic surgery min, invasive procedures,
    I myself made an appointment with doctor here as I read they can do these new procedures with hope he can help me posibly in some way without opening me up like a pig,

    This is at the regular hospital right here built and opened just a year ago as many new doctors are coming here from other areas so it's not some off the wall place,

    So seems finaly maybe they are advanced in new treatment as he even does laser surgery , robotic arm where they can even fuse without total open back or neck surgery,

    In my case I have nothing to lose and if now they have beter ways of doing surgery I am all for it,

    So just to be sure maybe get another opinion so you are 100% sure if that's your only option,
    There is nothing simple about any of these surgeries , As many of us found out the hard way,

    Just a thought, Best wishes
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I have opted for the second opinion. I PM a member here who I just found out was in So Cal and I will take my films to a family friend who consulted on my back. Have to pay him for the appointment but its worth it because I know beyond anything he will be honest and look at me the way he would read the films of his wife or kid. He can never work on me. Out of network.
    I am just so overwhelmed and I need to step out of this. The power of the mind is amazing. I have such pain in my hands and arms right now...they fall asleep as soon as I lay down at night....understand this was intermittant prior to finding out how bad the MRI was. So I am manifesting these symptoms now to be there constant. I know, who tells a forum that its all in my own head...lol. Listen the damage is there but the power of the mind and suggestion is a very powerful thing.. I will be starting back to PT as surgeon had stopped it due to the amount of pain it caused in lumbar and legs. I will walk, (with my lvely bday cane) as much as possible and I will enjoy my family and figure out where the hell we will be moving in June! Unfortunately it looks like disability for me...I just cant keep my family fed right now without some help. This is the hardest for me as I have always been the breadwinner and to have to admit that I cant right now is killing me.

    Alex, I would be so interested in you sharing more of what you mentioned, the min invasive crap, the new stuff! Always good to be informed. And if I could get away with less than 8 inches...hahaha...Im talking about an 8 inch scar that would great.Alex if you ever come over to the dark side and befriend me on FB you will see what I am talking about!

    Have a great day everyone! Try and manifest the good stuff not the pain....its my goal for today to trick my mind into pleasant sensations instead of constant pain! I will let you know if it works. Oh yeah on a side note...the cymbalta is awesome, has helped tremendously with my pain and depression....freaking like 7 pounds in 4 weeks...that is not good~thank goodness I am 5'9 and can carry it a bit. This week I am on soup and vegies to try and counteract the Cymbalta....always works out that way huh? Finally found something that helps and now I have to get depressed about looking porky! My hubby loves it...he likes me a little more full! HAHAHA...why I am telling you guys this? Because weight gain doesnt work in my life...makes me feel bad about myself and the idea of stopping theses new meds is on my mind all of the time. So talk me out of it guys...tell me a little pudge is worth getting the relief from the dark hole of depression!

    Very rambling post....apologies extended! Peace my friends, Ellen
    3 level fusion L3-S1 July 23, 2012
  • jellyhalljjellyhall Posts: 4,373
    edited 02/17/2013 - 10:56 AM
    Think of the extra weight as feminine curves!
    Sounds much better than a little pudge!
    I have plenty of those!!
  • dilaurodilauro ConnecticutPosts: 9,865
    I know you have a lot going on right now and when they start to talk about surgery, fusion and things in that order, it all just builds up. Once that all starts to build up, then your minds begin to kick in. What IF, what could happen, how about this, or how about that!.. This could go on and on and on and on

    Break it down to simple terms.

    Without surgery, what are you looking at? The Pain getting worse, compression on the nerve makes it more difficult to heal, things going downhill real quickly.

    Now, with surgery, what are you looking at? As with any surgery, there are always risks. What happens IF, Is this going to fix the problem? and so on and so on

    Ok, now do you trust your surgeon? Yes, then its so much easier to move ahead. If you dont, that makes things so much more difficult to deal with.

    As a prior spiney surgical patient, you already know the do's and don'ts when you come home from the hospital. You know the rules, what you can and cannot do. Plus, you have the advantage of being through a spinal surgery before, you sorta of know what to expect.

    You have a husband who loves you, you have children that love you, so already you are ahead of the game. The actual surgery is the easiest part, its the post-surgical days that mean so much.

    I've read so many of your posts and I already know you have the positive approach to handle all of this. After all you are now a seasoned Spiney! You know the support you are going to get from your family and you know the support you will get from us here.

    Without surgery, you can feel how things are going to be tomorrow, next week, next month, etc... Not the brightest of futures. And now you need to look at tomorrow, after the surgery, how you are going to rebound. I know you already trust your surgeon, no question about your family, here, its a given, we will be with you

    Think of the person going in for their first spinal surgery, never been to a site like this, never been able to discuss their fears, wants, etc. That scares me just posting that.

    I think you already have the answer, you know what needs to happen and when. This is just a simple means of expressing your thoughts and your fears. El, the only thing you should need to think about right now, is IF I am going to call you
    "L", "Ele", "EE", "LLLLLEEE" and more

    Seriously , just make sure you have everything lined up. the dishes cleaned, a couple of days with cleaned upper and lower garments.

    You are going to be just fine. Its hard thinking about all of this, especially when its all so new. You are going to come through this so fine and you will be feeling so much better.

    I know you understand when I say I love you.. Most importantly, you also know you need the surgery and you have everything with you to make not only the surgery to be fine, but all the people in the after surgery items to deal with.

    El, you've had my back, and I know that you beleive me when I tell you I have your back.....

    Get it done, , start the road to recovery and a more pain-less life ahead!

    The older guy from Spine-Health
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • ellencalieellencali Posts: 162
    edited 02/17/2013 - 8:16 PM
    I have said it before and I will say it again....PROFOUND! And so right on spot. I love you too, Ron and you know how much I love and appreciate this site. El, L and LEEEEEEEEEEEE or as my daddy says Elie...you got it my friend...call me whatever you will...we are a bonded bunch! You said in such a beautiful way everything I think. I know, I already know where this is going. It has to happen, it is what it is. This time, my terms, my way and that is a wonderful thing I did not have the first time around. Makes it easier...so much easier. I am destined for greatness....be it Spine Health greatness ;P but I am destined to come out on the other side better and better equipped to help the next spiney on their journey. That is what I hope everyone reading this post gets from this. This is a place we get to be everything we ever wanted to be..the strong person if we are not...the positive person if we are not...the person that needs to be sad and down and so unsure. I am all of those people here and it is so freaking liberating! I am what I am. I am spine patient who hurts and suffers....and it sucks. But more than that, I am a spine person that has become part of something bigger than my spine issues. So if anyone out there is reading this and is new to Spine Health and wonders if this place can make a difference.....wonder no more. This is a place that knows you, we know your pain, and suffering...we know your joy at the little things that make your days more bearable....we know the darkness the BEAST casts upon you. But more than anything we know the difference that an online community can make in our lives. I have read almost every post on this site. I have read things I agree with and disagree with, but what is most important is I have HEARD the message that I am not alone. Someone has walked before me and survived. I will survive and I will be the best person I can be as I walk or crawl my journey. I am having a hard time typing as I am crying like a baby. I dont know what I would do without Ron and this site. I feel so blessed to be a part of this group. I honestly am not sure I would have made it this far without this site and the encouragement from the people that are part of it. There is never a right way to do this....but I have made a right decision by immersing myself in this site and listening. I am proud of myself for that. Whether it be Alex and Git er done and all his craziness or Ms Jellyhall and her oh so ever kind words ALL of the time....the people that are here have saved my arse so many times. I am so very grateful.

    Please know that if there is anyone here that needs an ear or an email contact i am here for you. Its one of those pay it forward things...I believe that is how we survive this crapola!

    Again, Ron..thank you, I love you too and thank you for breaking it down in the simplest of terms. I will keep everyone posted as i trudge. This is not an easy road but damn its mine and I love it!

    Peace my friend,
    3 level fusion L3-S1 July 23, 2012
  • Ellen, I vote for fluffy not pudgy...just think Marilyn Monroe curves. Feminine and soft :) Get yourself out of that dark place and then work on the little bit of weight. Love you my friend <3

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