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Since cervical fusions diagnosed with swallowing problems

Hi all I have multiple things going on. However I have five cervical disc fusions. Six in the front and three in the back of the neck. Well I had has swallowing issues for 6 years now and was just diagnosed with a swallowing disorder now. I am so upset it is caused by the hardware in the front of the neck. The hardware stops the flap in my throat from opening all the way and pushing my food through to my stomach. So I gag on everything. I cannot even take pills. It is horrible and they never tell you that could happen. I asked them if they could remove the hardware and they tell me it is to dangerous. So I get to life the rest of my life with a swallowing problem and chocking on things. I am careful but it happens all the time. Has any of you gone through this issue and were they able to take the rods out for you?

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  • My mom had 3 level acdf and resulted in feeding tube directly after surgery. She couldnt manage her own siliva. Fast forward almost 2 years later. She is still on the tube but she does eat by mouth but it never returned the same. She struggles to swallow and certain foods she does better than others. It takes alot of energy for her to finish one meal and she does cough and choke at times. At this point we kind of live with it. Our surgeon was never really supportive and just pass us off to the ent doctor.  My mom struggles on liquids, thick meats. Basically oatmeal and thick soup she does best on. What is your case like? My mom has never drank clear water again since her surgery. For thirst, we give her naked smoothie drinks. She always feels like there us stuff stuck in her throat like phelgm.


  • nutcase007nnutcase007 United StatesPosts: 953
    hisbeauty4ashes - Have you had any consultation with an ENT surgeon?
     
    After my second ACDF at C3/C4, I developed swallowing issues months later after the surgery.  I couldn't swallow anything, including water.  I was hospitalized to be rehydrated and feed intravenously.  While in the hospital, I had some swallowing tests and worked with a speech therapist (yes I typed that correctly).  The medical staff was able to teach me how to swallow puréed foods.  They also had me
    drinking water with thickening agents.  Maybe I was just lucky, but I was able to avoid a feeding tube, but I had to live on pureed foods for months. 
     
    After months of additional tests, living on pureed foods, being coached on swallowing techniques, I was able to graduate to soft foods and eventually back to regular foods.  During the months of working with the ENT doctor and speech therapist, they also observed the growth of a massive osteophyte from the bottom front of C4.  I was advised by the ENT doctor to get the osteophyte surgically removed.  The neurosurgeon who I was working with that would of removed the osteophyte stalled for time, because he was n the process of trying to get me approved for another ACDF at C4/C5.  Finally, I was approved for the C4/C5 surgery this past January, so my osteophyte was removed as part of my third ACDF.  I can swallow with minimal issues.  With now three ACDFs, the swallowing tests show that I have lost some control of swallowing on the right side of my throat. 
     
    So what is my point? Even with some permanent neurological damage in my throat, often there is techniques that ENTs along with other medical support professions, can work with you and some times/many times help you develop alternatives techniques for your swallowing issues.  My ENT doctor/surgeon had told me in my case, if I couldn't get the osteophyte removed, she had alternative procedures as back-up plans.  She refused to give me details as long as direct surgical removal was an option.
     
    If you have not yet had a consultation with an ENT surgeon, you deserve it to yourself to get one.    


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  • Hi nutcase- did the 3rd acdf cause any worse swallowing compared to before ? I know the swelling always cause temporary swallowing issues but im always afraid opening up that area again since so many important nerves and muscles are there. 

  • nutcase007nnutcase007 United StatesPosts: 953

    Jennypai - On my third ACDF to fuse C4/C5, my neurosurgeon had to go through the scar tissue from my second ACDF at C3/C4.  That incision was nasty.  He had to dig out all the scar tissue and my fusion procedure was about the worst he could have expected (so the neurosurgeon told me after surgery).  There was two positive parts of my last ACDF surgery: (1) he already had my neck open at the  C4/C4 level, so he had to remove the massive osteophyte that had developed on the bottom of C4 after my second ACDF and (2) he was able to obtain insurance approval to use a zero-p spacer that does not require any plating on the front of my spine.  If you google my highlighted words, you will see the device.  Remember, I already had plating over the C3/C4 joint, so there wasn't any space for new plating, outside of cutting my neck open further and removing the C3/C4 plating.  

    The zero-p device had worked great for me.  From the x-rays that were shot nine months post-op, I am totally fused through the device and around the front of the device at C4/C5.  This results in a totally smooth fusion on the front side of my C4/C5 joint. 

    My swallowing is just about normal, almost back to normal before this whole mess in my neck started.  From the incision point into my neck for C3/C4 and C4/C5, I have lost some swallowing control on my right side of my vocal cords and epiglottis.  Some nerves were cut that have NOT regenerated.  I can live with it.  I chew my food more thoroughly and swallowing on the left side of my throat.  I have never head of any cervical fusion that didn't leave some type of permanent lose of function.  Remember, I was never a candidate for any ADRs, because of the severe damage to the facet side of my cervical spine.

  • Thanks for the update. Ya, after the surgery..i did find out about the zero p hardware. Im not sure why my surgeon didnt bother looking into that or consider i might have swallowing issues before. Im 70 yrs old with advance parkinsons. I had a regular diet before the acdf. I think my surgeon should of run a baseline swallowing exam prior to surgury knowing i had preexisting conditions.  Our ENT at ucla hospital did few largnaescope exams and concluded my swallowing is very weak. He was going look into an esphagous dilation operation in case the hardware was causing issues but my mom decided to not perform it because the ENT said it may not do anything to help so basically no guarantees. I just feel the acdf was overkillfor my mom because she never had nerve pains and the surgery was recommended because my moms neck started deforming and cause her to bow her head down. 

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  • hisbeauty4asheshhisbeauty4ashes Posts: 211
    edited 01/25/2019 - 10:05 PM

    Hi Nutcase! Yes the ENT was the one who did the tests and saw the issue right away. I went to physical therapy it did not help. I have no options because all five fusions are causing the problem and they say it is to dangerous to remove them. I choke on everything and always feel like there is stuff caught in my throat. I hate it! I wish there was a way to post pictures because I have mine of my throat. It is crazy to live like this. You do find ways to cope because you have to however it so not nice to live with. I also have MS which does not help matters at all. My last cervical fusion was last April and I could not eat or sleep the swelling was so bad. It was honestly a total nightmare for me and very traumatic. So MS it not good to have when you have issues.

  • Okay hi guys I forgot about this page. I am having alot of pain now with the rods and screws in my neck and I feel like I am drowning too like it is hard to breath sleep apnea is worse too. I am just like is life worth this. No one seems to care. crazy!!

  • nicky74nicky74 New York,NY Posts: 83
    I have swallowing issues since day one of ACDF C5/6/7 in 2013. I couldn’t swallow anything including water and lost my voice for two months. I was hospitalized too to be rehydrated and feed intravenously. I refused the feeding tube.I had barium swallow studies,total esophageal manometry, upper, body,lower (a torture) and I worked with a speech therapist with minimal results. I had a surgery(laser) trimming the epiglottis,opening up the cricopharygeus muscle, laryngoscopy/ esophagoscopy,esophageal balloon dilation.Horrible! Very painful for a month(on liquids with a straw) and another month to learn how to eat and drink like normal person again. I was told that this surgery may not correct all my problem. Well it didn’t! I would say it got 50% better. Still having issues. Also, I can’t bend my head down, I can’t tie my shoelaces or if I drop something I can’t pick it up! the plate is pressing on my throat and it is chocking me... I can’t breath! Anyway my ACDF failed, pseudoathrosis, and I had posterior revision C3-C7 with another surgeon last April. I should have another anterior six months later but we delayed it because before the 5th month I had 4 screws loosened so my surgeon wanted to give it more time just in case we had to repeat the posterior . So last week he gave me a referral for ENT to do what tests he wants before the surgery and for “”possible plate removal”” Once I’ll be done with and he’ll get the report he will schedule my ACDF, most likely in May.He has to work at C3-C4 levels from the anterior side, also to clean bone spurs,scar tissue, do partial corpectomies at C5/6/7 and hopefully remove the metal plate so either solve the problem or make it worse and loose my voice permanently this time.
  • hisbeauty4asheshhisbeauty4ashes Posts: 211
    edited 03/21/2019 - 1:21 PM

    I am sorry you are dealing with this too. My heart so goes out to you. I feel like I am not being heard and soo frustrated so I can only imagine. They told me they could not take all mine out so now I just feel like I am being choked. Swallowing is getting worse and my neck hurts. Do you hurt like int he neck where the screws and plates are? I pray all goes well for you and your receive a totally and complete recovery. Please let us know okay cause this may give me hope. Can I ask where you live? Cause I am wondering if I could see your doctor sounds like he is at least trying to help you.

  • nicky74nicky74 New York,NY Posts: 83
    edited 03/24/2019 - 11:54 AM
    @hisbeauty4ashes , the pain is always there. After  my last surgery I thought things would be better. It didn’t! to my complains to my surgeon,my pain management doctor and my physical therapist they all saying that some of pain is from the failed ACDF and my surgeon believes that after he’ll remove the metal plate,not the peek cages they will stay in there, things will improve! Waiting and hoping because this is getting very annoying... besides my pain,besides I have to be careful to swallow without chocking,this thing doesn’t let me to breathe. I can’t turn my head up or down . I can’t even lay in bed on my back with a pillow.... I feel it is pressing the trachea,the windpipe, and not only I can’t breathe,my voice sounds funny too! Also where the incision is,on the left side of my neck, I have like a lump now,they said it’s the scar tissue....

    I live in New York.
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