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  • Very slow recovery after ACDF

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    Old 09-05-2011, 06:43 PM   #1
    gcwebbyuk
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    Very slow recovery after ACDF

    Hi all, this is my first post here so be gentle This is a bit of a long post, but it describes the history of my case.

    I have had problems with pain in my back / neck for years now. I had three separate occasions where my neck would go into spasm and require diazepam to release the muscles and let me go about my usual routine.

    I had x-rays which indicated I may have osteo-arthritis. My GP referred me to a rheumatologist and for physio to try and get me rehabilitated.

    During this time I started to develop pains in both arms, and an occasional twitch from them. I also found it very difficult to get comfortable.

    The rheumatologist requested an MRI and from that diagnosed that I had a degenerated disk at the c5 / c6 level. He referred me to see a neurosurgeon.

    The neurosurgeon suggested an ACDF to attempt to fix the issue. I was a little reluctant to have surgery, but agreed to go on the waiting list.

    Whilst on the waiting list, I tried a variety of alternatives but after several months of NHS physio, I tried private physio, chiropractic, osteopathy and finally acupuncture. I gave in and accepted I would need surgery.

    I had my surgery in January 2010, the surgeon decided to operate on the c6/c7 level too as that disk had also degenerated. The surgery seemed to be a success! I lost the nerve pain that I had been getting in my arms straight away, and was up and moving the very next day. I went home on day three.

    My initial recovery seemed to be pretty swift. By March I was back at work, although doing no physical work (I am an IT Consultant). However, after a month back at work, the pain slowly crept back in and left me unable to work.

    I resigned from my job and started to work from home self employed.

    That was March 2010 - it is now 16 months on, and although I have made progress, I am still far from healthy.

    I am only able to walk about 400-500m before feeling like I need to stop.
    I work the hours I can, which is very difficult with my medication.
    My sleep patterns are all over the place.
    My left eye is droopy (we are pretty confident this has happened since the op).
    The muscles in my back are constantly tight.
    I am in pain most of the day - I have started to develop pain in my lower back too.
    I have started to lose sensitivity in my left thumb.

    I take a lot of medication:
    300mg Pregabalin
    20mg Piroxicam
    20ml Oramporh
    Diazepam when needed
    Ranitidine

    I am having a deep tissue massage at least once a week (1 hour) which I pay for privately.

    I am at a loss as to where to go next. I want to get back to a healthy life, but find that my condition is severely preventing me from doing this. The NHS seem to only be able to deal with one area at a time, and don't see the spine as a whole. The waiting lists are also shocking!

    I had steroid injections in June, and was supposed to have another set after 3 months to give the first set a boost. However, the waiting list is currently 7 months behind...

    I am awaiting another appointment with a rhuematologist, but don't know how long this will be.

    Does anyone have any advice at all regarding what to try next?

    p.s. sorry for the long whingy post, but hopefully someone will be able to offer some advice

    Last edited by gcwebbyuk; 09-07-2011 at 12:27 PM.

     
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    Old 09-06-2011, 03:58 PM   #2
    gcwebbyuk
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    Re: Very slow recovery after ACDF

    To add some further info - during a follow up appointment a year ago, I noticed some information on the bottom of my MRI. The consultant didn't mention it to me, but I asked for a copy. It spoke of a "post-operative artefact". It also mentioned that "on the sagittal views at the C5/C6 intervertebral level on the right side there is a strong impression of a residual disc fragment at the entrance to the right C6 intervertebral foramen".

    What do you think this means?

     
    Old 09-06-2011, 04:36 PM   #3
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    Re: Very slow recovery after ACDF

    GC - don't worry about whining. You are entitled...

    Just curious, how long were you on the waiting list for the surgery?

    There's not much I can say about neck pain, except as a post-laminoplasty symptom. Your addendum about the disk fragment gives some weight to what I was already suspecting, which is that your surgeon might not have been, let's say, top notch. He cut out the disk, but left a fragment, possibly stuck in the foramen? Good grief.... At any rate, that would affect ONLY your right side, possibly the neck and more likely the arm and hand.

    As for the droopy lid, that doesn't sound like a c-spine problem (to me, and I hasten to add I'm an amateur and recent ignoramus). Maybe the pain meds?

    I certainly don't intend this as a comment on the relative merits of the NHS (as I've already been scolded for "political" posts, and I'm sure the NHS is superior in many ways to what I'm used to), but I have to say that the waiting times you face must make decision-making - for you, as a patient - extremely difficult. For a complex situation such as your own, they would necessitate the best possible understanding of your current situation, followed by stategizing that would make a general proud.

    Could you possibly post the radiologist's report from your last MRI? I can't promise that I will be able to provide feedback that will compensate your effort in transcribing the report, but I will try. BTW, do you think the "artifact" is referring to the disk fragment, or maybe just talking about the clamps that were put in as part of the acdf's?

    Last edited by WebDozer; 09-06-2011 at 04:39 PM.

     
    Old 09-07-2011, 01:45 PM   #4
    gcwebbyuk
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    Re: Very slow recovery after ACDF

    This was the last MRI that I had. After this both the surgeon and the pain doctor told me that there was no fragments, and that it was actually a shadow on the mri...

    I have been suspicious ever since, especially as the pain has lasted so long and at such a high intensity.

     
    Old 09-07-2011, 02:17 PM   #5
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    Re: Very slow recovery after ACDF

    "After this both the surgeon and the pain doctor told me that there was no fragments, and that it was actually a shadow on the mri..."

    Maybe so, although the surgeon has reason to dismiss it, the radiologist is better trained to read these things (supposedly), and the radiologist did say "STRONG impression". I don't think he picked the word "strong" out of a hat.

    "I have been suspicious ever since, especially as the pain has lasted so long and at such a high intensity."

    If there were a fragment there, it might mean a lot, or it might mean nothing. Also, it would only affect one side, and only at one level (arm/shoulder).

     
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    Old 09-07-2011, 05:10 PM   #6
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    Re: Very slow recovery after ACDF

    So sorry for the time you have been suffering and the waiting that you have to deal with. My waiting was self imposed because I couldn't deal with the seriousness of my conditions. It was probably stupid on my part, but hindsight is 20/20. I am blessed that my surgeon is wonderful, open and honest. Look into TOS and RSD. That was the recommendation that was made to me prior to the car accident. January to March for recovery from surgery was not very long. I was in the hospital for 5 days and I was out for a while and they reluctantly gave me clearance to go back to work. From what I have found, I carry myself differently and turn differently and it is not totally necessary. That has caused some of my issues. I found going for heat, stim, ultra sound and deep tissue massage getting to the trigger points has been very helpful. Good luck to you. I continue to have issues and have been to the hand surgeon and vascular surgeon to find out what is going on. Now that will have to wait until I get better after being rear ended at nearly 30 mph.
    **************************************** ********
    DDD, arthritis, herniated disks, pinched nerve
    12/9/2010 ACDF C5-6 C6-7 with plate, screws,
    BMP & bone fragment filled cages
    2/14/2011 trying to go back to work as a teacher
    2/17/2011 starting PT
    wearing bone stimulator 4 hours a day
    3 months saw a little bit of bone growth (YEAH)
    4/15/2011 Home Tens Unit
    6 months - end plate growth going well - no more bone stimulator, issues with hands going to vascular and hand surgeons to find out why
    8/2011 - may have TOS or RSD still researching and testing
    9/2/2011 Rear ended at 30 mph. Think I am okay going to OSS on Tue or Wed. School begins Tues.

    Dealt with the pain and issues for more than 5 years
    tried PT, chiropractic, acupuncture, cervical epidural shots and selective nerve root blocks prior to surgery

     
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    Old 09-08-2011, 02:57 AM   #7
    gcwebbyuk
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    Re: Very slow recovery after ACDF

    frenchfri1003: sorry to hear you are still struggling I will look into TOS (Thoracic Outlet Syndrome?) and RSD (Reflex Symapthetic Disorder?) - please correct me if I have those two correct?

    WebDozer - I agree the word STRONG is a little bit too strong for them to have meant a "shadow". I do still feel the hospital are trying to cover something up - even if it could not relate to the pain I am still experiencing.

    If you are interested, and can read MRI scans, I have kept an album of them on my Photobucket: http://s284.photobucket.com/albums/ll9/gcwebbyuk/Neck/

    I am awaiting my referral to see the Rheumatologist, who will hopefully refer me for another MRI to see what is going on.

    In the meantime I think I am just going to have to pay to have a private MRI as it could be months for the referral.

     
    Old 09-08-2011, 08:01 AM   #8
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    Re: Very slow recovery after ACDF

    OK, GC, I looked at those MRI's. I hope you don't mind some guy in Colorado peering inside your neck!

    To reiterate, I am very much an amateur, just trying to apply eyesight and common sense. The cord-compression problems are not hard to read, but how they can see problems in the foramina is beyond me. I can't tell a thing.

    Looking at your pre-op pics, I'm actually a little surprised that you even had an operation. I don't mean to make light of your situation, because your symptoms are what they are, but I have to say I'd trade my MRI for yours gladly. If you could see my pre-op pics, you'd see a cord compressed 50%.

    In your pre-op series, you can see on axial images 44 and 47 (corresponding, I suppose, to the C5-6 and C6-7 levels) where the cord is compressed a little on the left. If those disks were also impinging on the foraminal passages, I can't read the MRI's well enough to see that.

    In the post-op series, the cord compression at those levels seems to have gone away.

    As for that shadow/artifact at C6, if you look at the post-op series sagittal views 7-10, you can see a shadow in the whitish spinal fluid in between the cord (dark) and whatever you have in place of your C6-7 disk. To find the C6, count that longish vertebra at the top as the C1 and the C2.

    You'll see that the shadow/artifact is on 7-10, and I don't see anything comparable at any other level. I probably wouldn't have thought anything of it, if the radiologist hadn't mentioned it, but I think I'm seeing what he's talking about. How he can tell it's at the entrance to the right foramen is beyond me, but it must be something on one of the axial views.

    I don't know what you can do about it. Even if another radiologist says it's a disk fragment, you don't really know if it's causing a problem. Also, getting it out would, I think, require another anterior surgery, as it's in front of the cord. Maybe a foraminotomy (coming in diagonally from behind) could get it, but I'd be surprised. At any rate, the docs there must have some knowledge of what loose disk fragments can do, so I guess it's possible they'd consider getting it out important enough to do another anterior surgery.

    Last edited by WebDozer; 09-08-2011 at 08:31 AM.

     
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    Old 09-12-2011, 02:23 AM   #9
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    Re: Very slow recovery after ACDF

    Thanks for having a look.

    I am going to get a third party MRI and consultation to see what they think.

    The MRIs are a year old, so I wonder what has happened in that time.

     
    Old 09-12-2011, 05:34 AM   #10
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    Re: Very slow recovery after ACDF

    Good luck with that. I hope a new MRI will at least provide more clarity....

     
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