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I'm here to give support

Neck of Steel CindyNNeck of Steel Cindy Posts: 1,064
edited 06/11/2012 - 8:23 AM in Neck Pain: Cervical
It has been a while since I have been a participant on these boards. I log in, read, go to chat, and then log out. I've been reflecting on the changes here and have realized that one of the reasons I'm not getting those "warm fuzzies" here any longer is because I am not giving them out either. The members here at spine-health helped get me through a couple of pretty rough years. In turn, I need to give back again and have more of a presence here for those of you who are just starting your neck ordeals, and continue my friendships with those of you whom I know so well. So, I will be hanging around the neck forum more, and if you have any specific questions, please feel free to PM me. I can't give medical advice, but I can give support and encouragement, which is sometimes just what we need to make it through the day. I have a lot of experience with necks (look at my avatar), and surgical complications and such. I think experience is the best teacher in many things, and the strength I have gained from going through all of my own medical stuff through the years has helped to make me the person that I am. So starting tomorrow, I will try to read your threads and get back to helping those on here who are scared and worried and angry and confused, and all the other emotions that go with spine problems. Hope to see all of you around.
Cindy
Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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Comments

  • thank you very much
    Us newbies need all the help we can get. I'm headed in for surgery Sept. 16th myself and am acared SH****ss. Any last minute advice?

    Misfit

  • Hi Cindy~Glad to see someone that has been through so much and has a lot of knowledge (I'm certain) to share.To come back like you have and be so up front and clear on expaining where you stand is nice to see here.

    I saw your avatar before and wanted to say something,but I didn't want you to think I was being rude or too crass.It looks like you've been through a lot and I see that pic and I wonder how bad it feels,or if it healed as well as you hoped.It just seems amazing to me all of the metal that you have in there.I hope you don't think I'm being rude,I'm just curious...I can't help wondering if you have to carry a medical card to get through metal detectors.

    I have large rods in my feet that are made of galvanized steel,and most of the rods were removed-only the rods in my heels were left intact,and I haven't had surgery with hardware for almost 10 years..I imagine they use different metals now.

    Now that I have cervicle problems I'm concerned about surgery,but I'm not planning on having any-only as a last resort.I am trying to stay informed on the subject,but am being treated conservatively for as long as possible.

    Mind if I ask what happened with your neck that caused you to have the surgery/surgeries? I've read some archives,but it would take me too long to read them all.I would be glad to read your other posting on this if you don't feel like telling your story again if could give me the link.
    :)
  • Hmmm, maybe get an easy haircut so that your hair will be easier to keep up. Hire a maid (I wish!!!).

    Actually, I think just doing research to know what to expect, and then keeping a positive attitude will help you the most. Make sure you take comfortable clothes to come home in (preferrably not a pull over shirt, button up ones are much easier). I always put together a little comfort pack for the hospital, including chap stick, gum, mints, good smelling lotion, etc. Your lips will likely get chapped and your mouth will feel yucky from the anesthetic. Stock up on some soft foods like yogurts, puddings, etc. I could eat normally, but some people have really bad sore throats. Pick up a bunch of movies to watch while you are recovering. this will help the time go by quicker. If you are the cook of the family, it is nice to have a few meals prepared and stocked in your freezer. You should recover fairly quickly, but it is a major surgery and you will need plenty of rest.

    Good luck to you on the 16th.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • You aren't being rude at all. I don't mind people asking. My story is a long one, but I'll try to summarize.

    I injured my neck at work, tried all the conservative treatments first and eventually ended up with a C5 to T1 ACDF, using donor bone and PEEK cages. Unfortunately I got a cord injury during surgery that was one heck of a challenge to get better from, but thankfully I am walking again. Will always have some neurological deficits from it, and ongoing problems, but I how can I complain. I consider myself fortunate to have come back as far as I have. After about 9 months, I had an increase in arm symptoms and other things, and so the doctor ordered a CT scan to check for fusion. Results showed that there was some bridging, but no through and through fusing. I used a bone growth stimulator for several months because I was too chicken to go through a revision surgery. Didn't work. My condition continued worsening, including worsening of leg symptoms (caused by myelopathy), awful headaches, arm pain again, weakness, etc. finally my quality of life was so poor that I sought out a different surgeon and in May 08 I had the revision. What you see in my avatar is all the hardware used with a posterior and anterior revision. first they removed all the stuff from the prior ACDF and then did vertebrectomies (different from corpectomy) at 2 levels. Installed the titanium cage, and also put another titanium plate from C5 to T1. Flipped me over to begin the posterior portion. Completely decompressed my cord, packed in some bmp from the back for the fusion site, and then put rods and pins in. My neck should never be compromised again with all that hardware!

    As for metal detectors, titanium is not supposed to interfere with them. No medical card or anythign like that. I have not flown or been through a metal detector post op this time, so I haven't tested it out. However, prior to this 2nd surgery, I did fly. I was surprised when I beeped and they had to "frisk" me with their little wand. Maybe it was just a malfunction or something, but I did set the thing off. No worries though because they just waved the wand over me, I explained that I had a neck surgery and showed them my scar, and they let me go.

    Can't really provide you with a link because I started with spine-health 2 software versions ago. My story is told in bits and pieces since then. With the first conversion, all the old posts were lost, and that is where the majority of my story was told.

    I think you are smart to be doing the conservative treatments as long as possible. I am not against surgery, I just think that everyone needs to do what they can to avoid it. After all other options are exhausted, then spine surgery can be considered. It is a big thing and should not be taken lightly. It isn't like going in and having your appendix removed. Spine surgery takes a long time to recovery from.

    I'll look forward to reading your posts, and let me know if I can help you in any way.
    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • MisfitCHARLIE, oops, I just read your name. I'm assuming with the name Charlie you are a man. Um, forget about the good smelling lotion--you'll have all the nurses wondering about you if they walk in and you smell like a woman wearing perfume. =)) But then again, maybe that would liven things up and make it more fun. Of couse, maybe you are a female, name could go either way.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Cindy,

    I'd wondered where you'd been and why you had not been posting. You have so much experience and the newer folks can certiantly use your kind words and gentle manner. I'm so glad that you've decided to post again!

    I try to help as much as possible but, as you know, my journey isn't over yet and I'm glad that you'll be around to hold my virtual hand yet again.

    Hugs atcha sista!

    Griff
  • That's really interesting to me..hearing some of what I'm looking at makes it seem more real.

    I'm actually glad that you put that picture up though because I've read some posts that make some people sound pretty blase' about having surgery...people who haven't had surgery yet,or people sounding almost excited or looking forward to it.
    (I mean no disrespect to any posters here)

    Not that I'm judging anyone or saying that I don't understand wanting to try anything to rid ourselves of pain,but I agree with you that this is not like having an appendix removed.The spine has to carry us the rest of our lives.I've never had surgery on my spine,but I have had many operations and I had spinal menengitis that landed me in the hospital(years ago,but not something you forget) in Sept. & I stayed until Oct.~that was a scary time for me.

    I just think that your avatar puts things into perpective a bit more,sort of like 'a picture is worth a thousand words',and I can't even imagine having to go through what you have.

    Somehow the neck area just really bothers me.Even the injections bother me.I guess you could say I'm a real baby when it comes to my neck.
    Thanks for sharing.

  • Thanks for the advice, the short hair was one of the things I did think of ....even took my neck brace to the salon so my hairdresser knew what we were working with...try and find a flattering style to go with that ..lol...
    Yep I am female i am the 6th of 9 kids ,#2&4 are the boys,actually Charlene named for grampa Charles ,been Charlie all my life. MisfitCharlie is my mascot from rudolph the red nosed reindeer.
    Think I'm ready .nervous just because the only surgery I've ever had was a C-section in 1988 ,I was awake for that and got a beautiful baby ,have no clue why but I wasnt worried at all then.Not as much of the surgery but am scared of the after.Am I as ready as I think ,scared of the extra pain from surgery the every day pain now is almost to much at times.
    Plus as an added bonus we found out Tues. my son has to have his shoulder repaired due to the same accident so he will be going in about 4 weeks after me.The muscles in his shoulder are pretty much shredded. Where will I be recovery wise at that point. I feel so horrible about the entire thing.
    boy thats a rambling mess sorry guys ,really tired..

    Thanks again you've been wonderful
    Misfit
  • That isn't good that your son needs surgery too. I wish him well with that.

    Prior to my last surgery, I was trying to grow my hair out because my surgeon would be creating a big scar down the back of my neck. I went through about 3 months of wishing that I could cut it (you know how it drives you crazy when you are growing it out), but I stuck to my goal and it was actually just about long enough to cover the scar down my back. But all that was for nothing. :''( The surgeon ended up shaving my hair up the back of my neck a couple of inches. Thankfully the top layers were still long, so they covered the shaved area. But once I was up to going for a haircut, I had it cut short again. I was so disappointed with that. So sometimes even when we think we are being smart about things, it backfires. But now I am 4 months post op and my hair is growing long again, and you can't even tell the area where he shaved it. All is well.


    Charlie, I think you will be surprised at how much better you will feel after surgery. At least most of the time it works that way. Let me know how you do with it, and remember that I am always just a PM away if you need anything.
    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Great info Cindy....As I get ready for my 4th surgery tomorrow since Feb the 1st thing I am doing today is getting my hair cut. I wear it short and spiked as it is but am going to have her really crop me up as I will be in an Aspen collar this time for 6 weeks.....gee my hair might actually get to grow abit!! The comfort bag is terrific, your lips are always terrible after the surgey and no matter what you do you just cant get that dry feeling of your mouth and lips to go away. When I am having neck surgery I always bring extra flexible straws as there is no way you can tilt your head to drink and the straws that come on your tray always seem to disappear. I also stock up on slim fast with extra protein or ensure or some liquid protein drink in case you just cant eat which with us "neckies" is usually the case. Well, I am off tomorrow for my posterior c3-7 fusion with hip autograft and will become your neck of steel cousin!!!! You are terrific Cindy, thanks for our recent chats, it has been great to be back in touch with you and so many others that I missed and was so foolish for letting it happen. I will be in touch as soon as I can get back upstairs and on the puter.....

    Spiney Hugs to you.
    Dee
  • I was wondering about you. I've been doing pretty much the same as you. Popping-in once in while to read, but not responding too much. I always seem to be too late to respond because there are usually so many other answers already posted by the time I read the thread.

    How are you doing? I hope still improving and still getting better!

    I'm just over 1 1/2 years post-op and at my 1 year visit with the doc I was a bit disappointed with their response to my lingering symptoms. Both the doc and PT indicated that where I was at in my recovery could be all that I get since it was already a year. I'm happy to say they were wrong and I'm still getting better. The leg burning/poking pain is almost gone. I still feel it slightly when lying down at night on my back, but it is fading. Other things improving as well.

    Take care.....so good to hear from you!
    Patricia
  • Hello my friend. It seems like forever since we have chatted. I'm glad that you are continuing to improve. I just saw a neurologist on Tuesday, and she said that it is at about the 2 year mark that doctors say things are about as good as they will get. I'm at that point, but I'm still hoping that some of this burning/tingling/poking/bee stings, etc goes away. I hate the thoughts of dealing with this for the rest of my life, which I hope to be 40 plus years. I am now 43 and it is weird to think I am a "middle-aged" person now.

    It is difficult not to get discouraged, but I am trying to stay positive. As you know, this isn't easy, but I just can't give up. I'll look for you online sometime and try to chat with you then. Are you back to work?

    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Hey...I think you get to start all over with counting....2 years starting from your 2nd surgery!!!! :D Don't listen to any of them....keep going, keep trying, keep believing. You've come so far already!

    Back to work? Yep! My doc signed off on the STD forms that I'd be back to work in 6 weeks. :O I started working from home with modified hours, but by 3 months post-op I was driving back to the office working regular hours. It wasn't easy. I'd come home from work exhausted. I'm lucky though, my hubby being on the road during the week and both girls away at school, I didn't have to worry about other demands when I got home. Just 2 fat cats wanting dinner! :D

    I've had a bit of a rough spell this summer....no, not my neck. Went to the doc with some pelvic pain. Anyway, to make a long story short....saw the doc on Wednesday; surgery on Saturday. He removed a 13cm ovarian cyst along with my ovary and falopian tube. Off work for only 1 week. That was tough. Driving in the car really hurt the tummy muscles. Had my follow-up appt last week and found out there was also a tumor in the ovary. They've sent it off for a 2nd opinion cause the 1st pathologist said it was "borderline". Now I wait for another 3 weeks. The doc was really optimistic though, because he took out the ovary and tube, so he feels that it's all taken care of. Whew!

    No point in worrying or fretting over this or any other brick wall that gets in my way. I'll take it down one piece at a time if I have to!

    Take Care!
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