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    Old 12-29-2007, 04:37 PM   #1
    erin72
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    I'm not fusing after surgery!!

    I'm an active 35 year old female with young children. I had ACDF of level c/5-c/6 in March 07. I have had many complications arise from this surgery including headaches, dizziness, muscle pain and weakness. Is there anyone who has any information about what happens when non-union occurs. I'm getting a couple of different opinions from the docs regarding this. One says fix it immediately, and one says let's wait at least one year before starting anew with surgery. I also have dysphagia now as well. Any advice or help would be GREATLY appreciated. Lost and not sure what to do!

     
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    Old 12-29-2007, 06:12 PM   #2
    julyg
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    Re: I'm not fusing after surgery!!

    Hi Erin

    Many of us were told we would not be fused for 1 yr. I had a 2 level fusion in Oct 06 while i was fusing on the 1 level The other the Dr said "see that black spot on your xray? and implied I was not fusing at 2nd level all along and I was very calm in his office but this would constantly wear on me as I am sure you are going through. Finally 3 wks ago I was told I was fused!!!

    So there is hope. I too am very active, although post surgery I slowed it way down to make sure I healed.

    Now to the dysphasia. Had it and hands down it's the worst.
    Did you have the swallow test done?
    Mine was a complication of the ACDF surgery, I have a paralyzed vocal cord.

    Here is what helped me proper diagnosis by a good ENT, going to speech therapy. There are specific exercises for dysphagia. Absolutely religiously doing the exercises.
    My swallow test came out ok but I was choking on the liquids.
    Certain things help...small sips with straw, keeping the chin tucked down so you dont aspirate, and drinking water all day to keep exercising and throat hydrated. Liquids for me had to be room temp. Anything cold made me choke. I was told no caffeine of any kind or mints or throat sprays, menthol as that all dries up throat. Chamomile tea warm and cooled got me thru most of it. ( If I see another cup of it I might gag

     
    Old 12-30-2007, 09:04 AM   #3
    feelbad
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    Re: I'm not fusing after surgery!!

    so they definitely know that you have not yet fused?how was this determined finally?sometimes it can be hard to tell unless you do the flexion and extension x ray.i did not fuse after nine months so we went back into another surgery and i had a plate and screws placed there and eventually finally fused within the next year.the only way i know for certain is when i had to have a tri level lami done for my spinal cord surgery,when my NS took the backs off my c 6-t 1,he actually visualized my then solid fusion with his own eyes.otherwise i may still be wondering if it ever took,ya know?

    you really do need something done at this point mostly becasue til that fusion takes,your c spine is very very vulnerable to injury,even from things that normally wouldn't be an issue.you also have a bone plug that is moving around in there and hitting nerves and just not behaving itself at all.i could actually feel all of the movements in mine just by the icky noises that were coming out of my neck and the intermittant numbness tingling and pain it kept causing.having hardware placed may be a good option.its just when non fusion takes place,it is normally or most likely because those bone ends just do not have enough constant contact going on long enough to actually take hold of one another(you could just have way too much 'play' in there too).placing that plate and screws just acts kind of like a good solid splint that holds the ends in place so they can fuse eventually.the longer you go without fusion the less likely it will actually fuse.little bits of bone just naturally start to kind of die off eventually.this just makes it much harder to have a good solid fusion.if you were going to actually fuse naturally,i really honestly think SOMETHING would be at least showing by now ya know?the plate and screws did work for me finally.this is just one good option for you.this just worked eventually.i do wish you lots of luck with this,i know how much this sucks to have to deal with.just discuss all options with your surgeon.please keep us posted on what you decide to do and how things are going,K?marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-30-2007, 02:07 PM   #4
    erin72
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    Re: I'm not fusing after surgery!!

    Marcia,
    To hear that someone else knows what i am talking about is...amazingly comforting! Not so sure that sounds right, but it makes me feel 'normal'! I had a CT scan performed on my c-spine, which showed non-union. The NS who performed the surgery was not the one who discovered this! I had to go out of network and pay for a CT scan and consult with another NS. He believes, in his opinion, that the peek cage used on me is too big and protruding forward in my throat. The CT scan showed all of this. I went for a second opinion at Cedars Sinai and 2nd NS agreed with non fusion but said peek cage was on the "big side" but within acceptability! I have lots of neck pain, lost range of motion and can't swallow real well. Everything goes down, just with lots of drinks of water. I have arm and leg pain/weakness, mostly of right side. Did you have any muscle weakness? I feel like I'm just "being lazy" whe I walk. It is so frustrating because I was an avid runner, gym rat before all of this! Again, thank you for replying to my message. You are a ray of hope for me!

     
    Old 12-30-2007, 02:19 PM   #5
    erin72
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    Re: I'm not fusing after surgery!!

    julyg,
    Thank you for your reply, it is so nice to hear from someone who "gets it"! I had a 2nd (and 3rd) opinion done and both docs agreed, no fusion. I did have the barium swallow study which showed compression, or something, at the level of my surgery site. I haven't heard from the doc yet about what my swallow study revealed, I just know it did not look right and it was kind of colappsed in the middle. I have to slightly bend my head down, chin towards chest, to swallow. Not fun! How did they discover that your vocal cord was paralyzed? The 2nd opinion doc wants me to have a vocal cord test to see if that has happened. He said one side can be paralyzed while the other side works, allowing you to talk. I'm a teacher, so I need my voice!! I have noticed that it is hard for me to project my voice and I'm horrible at talking with a loud voice. I end up with coughing spell and my throat dries up immediately!

    Also, did you have to have any post op surgery for 2nd fusion? How long did it take to completely fuse from time of 1st surgery?

    Again, thank you for replying...it is ever so appreciated!!!!

     
    Old 12-30-2007, 06:55 PM   #6
    julyg
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    Re: I'm not fusing after surgery!!

    Hi Erin

    I have had one ACDF surgery 2 level c5/c6 c6/ c7. Had it done late Oct 06, just was told a few weeks ago I am fused, But this was after NS ckd 4th set of x rays.

    It was very apparant something was VERY wrong with my voice immediately after surgery. I am a sales manager and do one on one and group presentations. I also did voice overs prior to surgery for tv and radio commercials.
    The demand on my voice is every bit as much as a teaches but 6 days a week.
    I was choking swallowing, had no volume and a high whiney voice. My throat hurt. Voice was very breathy.

    I have had to have 2 surgical proceedures to bring my right vocal cord midline.

    To test your vocal cord for paralysis, ENTwill do a strobe test with a camera (does not hurt if you tell them you want the FLEXIBLE tube not the rigid) I have had this done 4 times, getting to be a pro. They spray your nose with a numbing agent and then the put the tube down to your vocal cord. I can actually feel it touch the cord at times and pull back a little. I was quite anxious about the test but really its a pc of cake.

    The strobe test is recorded with a video and your Dr will play it back and you can see if your vocal cord is paralyzed. My right cord was so sad to see on the video.
    I take an hr each day to do my exercises as I must have this job!

    Voice overs are OVER DR says I am mostly recovered however by midday my throat and back of my tongue throbs and aches each day. Dr says it is from over use, but a girls gotta work! If you look around on the net you can find videos of people with vocal cord paralysis.

    The chin tuck method for swallowing is good but there are exercises which also help, Can you get to a speech therapist?

    The thing that bothers me so much is I was billed by a neuro-monitoring company to ensure surgeon did not get too close to nerves. Have since found out surgeon had the option of using this service for the larangeal nerve (vocal cords) and it was not monitored! This so totally did not have to happen

    July

    Last edited by julyg; 12-30-2007 at 07:00 PM.

     
    Old 01-01-2008, 11:19 PM   #7
    erin72
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    Re: I'm not fusing after surgery!!

    July,
    So sorry to hear your story! It's amazing how much I have learned through this entire process. It's nice to have access to people like you who have done plenty of homework, too! I haven't inquired about speech therapy as my condition is mostly swallowing and pressure in my throat. I can feel something pressing against my esophagus. Very strange sensation! My voice did not change after surgery other than tiring out by the end of the day and the inability to project my voice. But I will talk to my PCP to see what he thinks! The insurance company has issued a grievance counselor to work with to try and go out of network. My neurosurgeon and his partner are the only ones in network and if I have to have another surgery, I'm not sure I want to go to him again. He may have done a poor job, according to another doc. But they all have their own "opinions".

    I'll keep you posted! On a much different note, I am sad to say my brother in law passed away on Dec. 30th very very very unexpectedly!! He was only 28!!! How ****** off am I!!!!! My problem seems like nothing! I have been overdoing it and have been trying to help my in-laws and his fiance as much as possible. Lifting too much, doing too much, and not getting enough rest. I can definitely feel it! Ouch!

    Thanks for everything, I'll keep in touch!
    Erin

     
    Old 01-02-2008, 06:45 AM   #8
    feelbad
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    Re: I'm not fusing after surgery!!

    so sorry for your loss hon,just went thru that with my dad,VERY unexpectedly too.life just sucks sometimes.

    you know,considering that all the specialists you have seen so far seem to really feel that cage is just way too big,havingthat removed and a new fusion tried would probably be your best bet at this point.really.when the dang hardware is just way too big to fit properly you can end up with either a non fusion or even worse,a fusion with hardware that is just way too big for where it is supposed to fit nicely,ya know what i mean?i think personally that this is kind of a 'good' thing for you,even tho i know you may not actually feel that right now.the fact that your body doesen;t seem to actually 'want it' should tell the docs something.the big thing here is if it isn't even fused,it wont be have to 'broken out' of that spot.and believe me,thats a good thing on all sides.

    i just really think your best bet right now would be to obtain as many opinions from the right type of specialists and just get that too big cage the heck outta there.this thing just being too big could be causeing all of your ongoing problems.these things are supposed to actually be 'fitted' to the patients size for a really good reason you know what i mean?seeing a neurosurgeon and an ortho wouldn't hurt,just to really see what all of your options are here with this thing.but personally,if this were me,i would have it removed.its just too big for you and will most likely make things even worse if it actually did fuse on you.its just pushing everything up there way out of the normal alignment it is supposed to have.just obtain opinions and gather all options.i really do think that any neurosurgeon with even an ounce of a brain would know that this just needs to be done and fitted properly.what you are currently feeling just HAS TO be highly uncomfortable just having your neck jutted up too high from inside there.not to mention everything else this is causing for you.good luck and please keep us posted.Marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 01-02-2008, 12:36 PM   #9
    julyg
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    Re: I'm not fusing after surgery!!

    Hi Erin

    I am very sorry for your loss. I will keep watching for your posts to follow your progress.

    Heres to a better newyear for us all.

    July

     
    Old 01-08-2008, 10:10 PM   #10
    erin72
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    Re: I'm not fusing after surgery!!

    Thank you so much for your prayers and positive thoughts! Every little bit helps! My barium swallow study shows esophegeal dysmotility. No blockage, but complications in successfully swallowing on the first try! I guess I just want someone to say... this is what you need to do because this is what is GOING TO WORK and get you back onto "normal street" again! I just want off this train~! With all the stress of the past week, the muscles in my head and neck were pulling so hard, my head was actually cocking to the left in spasms! It hurt like.....! The spasms have stopped but it feels like everything is on fire. How do you all deal with the pain everyday?!! I'm just exhausted at the end of the day! Any advice?

     
    Old 01-10-2008, 11:17 AM   #11
    julyg
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    Re: I'm not fusing after surgery!!

    Ok Now you know what is wrong swallowing, how does it get fixed? Any exercise to help? Referal to speech therapist? When I ran out of tongue swallowing exercises and felt I needed more help I contacted major university hospital speech therapy depts. via internet and get this ....THEY E MAIL ME BACK, CALLED,AND FAXED NEW EXERCISES AT NO CHARGE!!!!!!!!!!
    I did not say anything about finances, This was out of human kindness and it helped.

    How do I cope with the pain? This is a very different life we lead. First off I take nothing more than ibuprofin ( I have had terrible reactions to narcotics and lyrica made me see double).

    I had a physical therapist come to my office ( I gave her a gift certificate to a lovely restaurant so how could she refuse?) and she watched me work.

    She threw out my chair made me buy a task chair and made the settings right. Moved my monitor up so I dont look down at key board and gave me stretching exercises.

    I bought a wonderful contemporary recliner chair for home. I am tall with long torso so the average recliner hit me at bad place. Found a very sleek comfortable leather recliner. When I get home I cat nap and it really helps.


    I ask for help.
    I do not lift anything heavy when I go to stores I explain I had spine surgery and they are more than happy to help you load into your car.

    When it gets real bad I take out the moist heating pad, the electric one.

    Thats my story!

    I am very healthy looking and most people would have no idea waht we go through.

    Last edited by julyg; 01-10-2008 at 11:19 AM.

     
    Old 01-14-2008, 06:58 PM   #12
    erin72
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    Re: I'm not fusing after surgery!!

    Hi Julyg, thanks for your response. Now that I know I certainly have something wrong with my esophagus, I asked my PCP to refer me to an ENT. I find it odd that he did not suggest this himself, but why try and make sense out of what doesn't! I'm waiting for the referral to see what the next steps are for this. I spoke with my onsite speech therapist (I'm a teacher) and she said it is important to find out if the muscles in my esophagus are paralyzed or just not working properly. We have been battling the insurance and found out today that our insurance company has been playing games with us... unheard of, right!!! (ha, ha!) My husband was referred to the California Insurance Commision via a family member's advice, and now we have a grievance filed against the insurance company with them getting started. All I want to do is get fixed and move on. This has been such a terrible journey! I left immediately after work today because the pain is almost intolerable. I was thinking as I was driving home, I would rather have another child and go through labor because at least I know it would be over in a days time! How pathetic is that!!! Thanks for the info. about the university hospital... that's great advice! As soon as I know what to do, I will get on the ball with fixing this "newest" problem! I, get that healthy looking part, too! I was a gym rat before this. I love to run and swim, very active once upon a time! I think my face gives it away with the pain and frustration of my current situation. But the occasional limping because of muscle weakness and lack of arm control doesn't help, either! I think I am becoming depressed. I am usually a very happy, light-hearted soul. I find it difficult to laugh and smile with everyone... don't they know how awful things are right now?!! This is disturbing me because I have always been a light for others and now I'm the broken one... this sucks!!!! I used to teach pilates after school for the teachers as part of my way of giving back, my ministry in my own little way. People were talking about it in the lunch room the other day and how much they miss it... I was absolutely CRUSHED!!! I love helping others and now I can barely help my husband with chores around the house. How do (or did) you learn to deal with an 'altered' life style? I have been so strong through all of this, but I'm ready to throw in the towel... no morbid thoughts... trust me.... but crawling under my blankets and hiding from everything sounds pretty good right now!!! I can't really talk to any one else about this because they don't "get it". Thanks for giving me this outlet, even if you can't respond...it's a blessing!

     
    Old 01-15-2008, 07:57 PM   #13
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    Re: I'm not fusing after surgery!!

    Hi and hope I am catching you in a pain free period.

    You must be on a hmo if you have to ask for a referral. My husbands old job just offered us COBRA at $1000 a month for PPO or $660 for hmo and I dont know how long we are going be on COBRA but I will never take a HMO if I have a choice. I love my primary dr. but not some of his specialist referrals. We will figure the money out somehow.

    If you are on a HMO its obvious why you had to ask for a referral.

    You have limited time to make these muscles work so you need to get moving on this. If you need to stand in the drs office to get the referral do it. Go with a list in hand of drs you want to see and have the dr pick one for a referral. Call your best local hospital speech pathology dept and ask them what ENT in the area they reccomend.

    There is a great ENT in my town who works well with ears and thyroid issues and has a fabulous reputation but he is very weak in vocal cord speech swallowing issues. So you need a good recomendation.

    You sound like you need a lift, go treat yourself to a funny movie or go into a puppy store! We need those little moments now more than ever.

    Its so tough going through this and I had no clue! I didnt find this board till post surgery so I only knew what to expect from recovery from the drs conversation!!!! I expected to go back to work after 3wks and be ME again and I am not ME anymore. And people only want to hear about it for so long then they tune you out.

    So I read the power of positive thinking again and again, and I bought "the secret" and I watched it at least 6 times and I do my best what ever my best happens to be that day.

    I feel like my life is finally starting to move forward towards healing, and I am considering going back to Banff this summer to do back country hiking.
    So I am hanging onto that notion and I will walk miles each day to get ready.

    July

     
    Old 01-21-2008, 10:09 PM   #14
    erin72
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    Re: I'm not fusing after surgery!!

    Hope you had a great weekend! I took your advice and had a wonderful weekend with my family! We have a family cabin in our local mountains. We played in the snow, well I just watched, and had a great time! Thanks for your support, even though it probably feels like nothing, it has been a great source of hope and strength to keep fighting the fight! I know my situation will improve, hopefully we'll get everything worked out soon with the docs and insurance co.
    Best Regards,
    active 35

     
    Old 01-24-2008, 01:37 PM   #15
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    Re: I'm not fusing after surgery!!

    Glad you had fun! Ck out my lastest post to neck patient. It seems we have more in common now.

     
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