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I think i need a second opinion, severe myelopathy worsening since surgery

I have had an acdf c5-6 in aug 2015 because of severe cord compression and for 3 months all was good then it went in reverse fast and all my symptoms are back. Apparently the recent mri and ct are showing that the level below should have been done also which i had pointed out to my surgeon at pre surgery appt. I am so disappointed and looks like i will need another. Why wouldn't he just do the 2 level as it too was pressing the cord, but he said it looked fine. I had a radiologist (friend of a friend look at the pics and he said the decompression wasnt done very well. I have an appt with my n surgeon who did the fusion in 2 weeks but I actually have not even seen him in since before they knocked me out to do the surgery, which i found odd.  i have been seeing his n practitioner for every po visit. I am speechless and feel hopeless. This was my first surgery so i didnt know what to expect. any ideas or opinions please. how do i go about getting a second opinion and does my current surgeon need to know?
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  • hvillshhvills Suzhou, ChinaPosts: 809

    Dee

    By all means if you are not satisfied with your current surgeon you should feel free to seek a second opinion.  Whether you tell your current surgeon or not is up to you... you are NOT obligated to tell him.   All you need to do to get a second opinion is take your pics and show them to another doctor and ask for his feedback just as you did with your radiologist friend.  

  • SavageSavage United StatesPosts: 4,299
    edited 07/23/2019 - 1:08 PM
    hello dee35 !
    Welcome to Veritas Health Forumplease click on link for helpful information!
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  • Hi Dee,
    I am very sorry. I just got a second opinion from my spinal fusion.  In addition to issues with my hardware that my surgeon didn't tell me about which my new surgeon is going to fix, he would have fused the level above as the disc is almost completely shot.  I go in for the additional level fusion and to fix the first fusion in a few weeks.  I am so mad - as I also specifically asked my surgeon about a multi-level fusion as I knew L4-L5 was bad!  My surgeon said I was too young and could go probably another 10 years without another surgery.  I got all of my images from the hospital.   I was also able to obtain the operative report directly from the hospital, without having to let my surgeon know.  I know how you feel - as I didn't want to tell my first surgeon either!  Good luck.  I can definitely relate:(
  • Dee35DDee35 New yorkPosts: 26
    Thank you for responding, seeing this was my 1st ever surgery, I really didn't know what to expect, important questions to ask. It makes me feel kind of dumb that the surgeon didn't explain all that was wrong in detail. Duckgirl, how did you find out that fusion was not right? 

    My neurosurgeon finally , 9 months after surgery, sent me  for a Ct scan, MRI, EMg test, because of all my myelopathy symptoms. I only know results of CT, which said I fused well but there is a gap in the fusion somewhere , recommended confirmation by another test for stability.  I only know this because I read the report, dr never told me this but then sent me for mri saying it might be the level below that we didn't think was a problem then but might be now. 

    I see my dr in 2 weeks, he'll probably discuss surgery again, is this something that happens on regular basis, or is this a reason to not have him do another surgery on me. 

    I called another surgeon, see if he would give 2nd opinion but receptionist said he doesnt take patients who had previous surgery. Hope I can find someone. This is so disappointing .
  • I am so sorry you are having such a hard time!  My surgery was my first ever as well. I didn't do as much research as I should have, as I was just anxious to get in to get my back fixed!  I didn't find this site or other resources until 6 weeks after my operation.  I kept calling my surgeon and telling him how much pain I was in.  He brushed me off and said everything was fine.  He did X-rays, an MRI, and finally, a CT.  He called me after the CT results came in and said everything looked good.  When I got the radiologist report, there was something about the cage that I knew was not right.  I called my surgeon back and asked him specifically about the item I was concerned about, and he again said there were no problems. I saw my sports medicine dr, and he agreed that my recovery was not normal.  He gave me a couple of names of different spine surgeons.  I ended up going with a surgeon recommended by a colleague.  He reviewed my images and operative report before deciding if he'd take me on as a patient.  

    I really hope you find answers!  I knew in my gut that something was not right - as my pain was so much worse than pre-op.  Do you have any other doctors that could give you a recommendation, or perhaps a physical therapist you have worked with?  Are you in the states?  I have heard it is sometimes hard to find someone who will do a revisions surgery, if necessary.  There are a few online second opinion resources I have heard of.  I didn't do too much research - but for about $500, doctors will review your images and give you a virtual consult.  The couple I saw didn't take insurance.  I don't know anyone that has used these services.  I passed because I wanted to see someone face to face.  Good luck - I hope everything is OK and that you can find someone to confirm it for you soon! 
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  • I know Cervical Myelopathy well and the nightmare with specialists. You must seek another opinion. Maybe even 3-4. I don't think most specialists have a clear understanding of Myelopathy as every patient is different. I will say that with all my research ,surgery does not guarantee resolution of Myelopathy symptoms AND they can still progress post-op. What are your symptoms now? It took close to a year for all my stuff to calm down. Weakness calmed down within a month I believe. However, having spinal cord damage I have had to face the beast multiple times mostly after PT, so no one touches me anymore.
  • liathumliathum OrlandoPosts: 17
    I'm incredibly sorry about how it has been working out for you.

    I can tell you that in my case, a second opinion proved invaluable.  Depending on the practice, picking up copies of your medical records is usually little-to-no problem because there are a plethora of reasons why you would want them.  Not just to seek a second opinion.

    What might help you, if you get this in time, is as soon as your scans are done, request a copy of the results and the images right away.  

    I ended up leaving the practice that first started treating my symptoms (today, actually) and choosing instead to go with a different doctor who was able to explain rationally what my problems were and actually believed that I was in pain.  It was refreshing, for once.  Hopefully, by reaching out to other doctors for more opinions, you find someone who can do that for you.  Good luck!
  • Dee35DDee35 New yorkPosts: 26
    edited 06/05/2016 - 9:14 AM
    Good news!! I have a neurosurgeon trained at [edit] clinic rated 4.5 ( out of 5)stars with 26 positive review that i read and only 10 mins from my house who is willing to see me and he's a specialist in revisions!! But I still have my follow up appt with my original surgeon to go over my MRI results first. Then 2 weeks after I see the new one. I'm so happy. Thank you for all your support and great info. 2nd surgeons office said they don't need to tell or contact my surgeon for anything, so he won't even know. 

    My symptoms were 90% better after c5-6 fusion. Then 3 mon. They all came back, heavy legs, gait prob, dexterity prob., weakness, dizzyness, MRI preop and post op showed cord compression at c3-4, 5-6, and 6-7, told my surgeon that looks like I needed more than 1 level and he said only c5-6 and the rest looked  fine. And he said I needed surgery or end up in a wheelchair, well I still might because he never did the complete job. 

    So I can't wait to see what this new dr says, I hope it all works out this time. I have all my discs and reports too. 

    Good luck duckgirl on your surgery and prayers for smooth and easy recovery. 

  • I'm so glad you found a good surgeon for a second opinion!  Thank you for the well wishes.  Good luck to you too - I hope you get some answers!
  • Dee35DDee35 New yorkPosts: 26
    Just came back from my appt with current surgeon and he suggested 4 level posterior cervical fusion because of congenital stenosis with myelopathy to make room for my spinal cord . I dont see how  this addresses the herniated discs though. I was just looking at all the procedure options videos on this site, and came across the laminoplasty which looks easier and does the same thing. And dont understand why he cant do it from the from again. I can not wait to see the 2nd surgeon in 2 weeks to compare notes.  Feeling overwhelmed, defeated and disappointed that the procedure I had was not the right choice as all these current problems were obvious in pre surgery mri and dr only chose to do a 1 level acdf at c5-6. Here i am with the same problems and have to go thru another surgery, not looking forward to this.
    :(
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