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ACDF Dysphagia 16 months out

Hello and thanks to everyone for sharing their experiences. I had ACDF in 1996 (c5-6-7) No hardware just bone. It went great. in 1999 I herniated c4-5, but did not require surgery. Last year i started having shoulder issues, so they wanted to check my neck. It turns out that the c6-7 fusion broke at some time. I went to the surgeon who told me it absolutely had to be fixed and that he would use hardware. He also said that since he was in there there was no point in not also repairing c4-5. He said I would probably have some trouble swallowing for a week to 10 days after the surgery. He was dead on...I couldn't drink or eat anything including water for 7 days. On the 7th day I was able to drink. By the 10th day I could eat soup. Now 16 months later, I can still eat soup,and ice cream and can literally choke down mashed potatoes or well cooked pasta. 

At my 3 month follow up he said "well that wouldn't be from the surgery" at which point I lost faith in him of course. My PCP sent me to an ENT, a Neuro, and a speech pathologist as well as for a barium swallow test. The swallow test and ENT scope show that my epiglottis is paralyzed and only goes to horizontal which blocks the food from going into my esophagus. The left side of my esophagus is numb, so the working theory by all the specialists is that a nerve was cut or damaged and that my recovery is complete. 

I have lost 65 pounds (which is not a bad thing) but i have to force myself to choke down food to try to keep from losing too much, because otherwise they are threatening a feeding tube.

I have read similar posts in the forums, but most are old, and none seemed to match my test results specifically. My question would be ..has anyone else had similar symptoms and test results and recovered? I haven't eaten in front of anyone since the surgery. When we go out with friends, I sit at the table like an idiot because I can't be choking and coughing up food. It would be nice to hear that improvement is possible, no matter how unlikely. Thanks for allowing me to vent, and I look forward to any responses.

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Comments

  • hi csftech

    welcome to spine-health

    this must be very difficult to cope with, especially when the surgeon said it wasn't connected to surgery.  there is somethings that surgeon say that do challenge our trust in them.

    i am not sure if we having any members on here at the moment experiencing this particular problem, but if you use the search box at the top of the page you may find previous or old posts that way.  search and then just scroll down to spine-health related messages.

    it does make difficult reading and i cannot imagine how you are coping with this.  i am not sure if the other specialists are indicating that maybe the surgeon is at fault for this issue, rather than your condition, by the description of cutting or damage to the nerve.

    please keep us updated on your future treatment or the suggestions that are being made to assist you with this issue.

    i have added two links below to help new members with information and these also contain the forum rules.  there is lots of material to research on spine-health that will give you the power of knowledge.

    welcome to spine health


    aj 


    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
  • My mom had 3 level ACDF a year ago at UCLA and had to have a feeding tube placed after surgery. She couldn't manage her own saliva. She still has a feeding tube now but she has been eating drinking since 5 months out even though she didn't pass her barium swallow exam. She does have parkinsons also but never had swallowing issues prior to sugery. Her surgeon was never helpful and just revered her to an ENT who basically said her swallowing is very weak. She tolerates soups and soft foods better with some thickness. With clear liquids, she coughs immediately.  Do you cough on clear liquids or that is fine? The hardware could cause narrowing of the esophagus and I read a dilation may help. Our ent said he could try that out although he said it may or may not help. I done alot of research and met one other guy online who ended up on feeding tube, also with multi level ACDF and Parkinson's.  So it is rare to have extreme cases ending up in feeding tube. Our surgeon should if known the red flags since she's 71, female , and has parkinsons. She never had nerve issues and the surgery was to help out her neck deformity since her neck steadily bowed down over time. They also did full rods in the rear following her acdf. Can you manage soups down fine with no aspiration? At this point her ent said since she's been eating few months and hasn't got aspiration psemonia to just keep doing what were doing. It's been a nightmare for our family though .

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  • I can drink liquids, I just have to be careful not to take big sips or I will aspirate it. Soft foods will go down, but usually require multiple attempts. Since  my epiglottis does move a little, it creates a shelf in my throat where much of my food ends up, so I have to cough it back up. The dilation won't help. The epiglottis isn't hitting anything, it just doesn't work so it blocks the food. It is what it is at this point, but it is certainly not enjoyable.  

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