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Avatar universal

3 Months Post ACDF

On Jan 11th 2007 I had ACDF without plate or screws C6/C7 with only a soft collar perscibed. Its been a long road to recovery and I understand that most people are feeling "good" at this point.

I am still in a great deal of pain it seems to be only at the base of my skull and bewtween the shoulder blades. I find the team that did my ACDF almost impossible to communicate with. In fact rude in most cases.

My family was completely stunend by my doctors comments or lack there of. He actually had the nerve after when I was in the ICU to tell my family they were allowed to ask him ONE question so it beter be good.  

I am afraid that this lack communication and poor after care instruction could result in disability for the rest of my life.

I am told by my doctors team that they do not recomend or perscribe P/T in cases like mine. That is not normal from all I have read. I feel that could actally be the root of why I am still so "disabled" at this point.

I understand it takes time for the fusion to occur however I have been told that no other doctor will see me until the surgeon that did my ACDF would release me to be treated by someone elese I find that hard to believe but I have heard that from two medical souuces at my family doc and from my referring doctor.

I believe with a supportive medical team I could overcome how difficult this has been I am 35 years old and too young to live disabled from what should have been a fairly common mediccal practice. Is there anywhere I can turn for help?
20 Responses
Avatar universal
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
    I am sorry to hear that your are feeling pain and the sense of being disabled after your ACDF (anterior cervical discectomy and fusion).  It is very common to have some pain after the surgery, but when pain persists for months there are several possibilities.  Number one, you should always be concerned about non-union of the bone graft.  If the graft does not fuse, then the spine does not stabilize and the extra motion could be causing pain.  Neck imaging, usually a follow-up MRI, can assess for this.  Number two, the cause of your neck pain/head pain was not due to the C6/7 disc, and although this was repaired, the cause of your pain has not been treated.  This is where a neurologist can help you.  While it is quite likely the case that another surgeon, is unlikely to want to pick up your case without negotiating with your surgeon, a neurologist approaches your problem with another perspective and an open mind and would be a good place to start for a second opinion.  Number three, inadequate after care, your should wait a minimum of 4 weeks after ACDF to begin physical therapy, and in the begining it is only massage and passive exercises to relax the muscles involved.  More active physical therapy can follow in time, but one should not expect to be recovered for 8 months or so.  If you are smoking, you should stop now.  Smoking leads to poorer bone fusion rates and more complications.  Your family doctor/PCP or neurologist can also precribe physical therapy.  Finally, there is always the fear of 'nerve damage' due to the surgical procedure, while this is a rare occurance it is often questioned.  This is another thing a neurologist will be able to help determine.  If you are not already on a medication for neuropathic pain, I would recommend neurontin, lyrica or elavil.  The standard post-surgical meds (percocet, vicodin, etc) are only good for acute pain, work for about a week or two and are highly habit forming.  
I hope this has been helpful.
Avatar universal
what were your symptoms preop that caused the need for this surgery??
It sounds now like your symptoms may be myofascial.
Avatar universal
I had an exterme pull to my right arm last may ever since it got worse and worse and when the MRI was done it showed a large disc herniation and compression of the spinal cord.

The pain before the ACDF was accross my right shoulder and down my right arm and hand.   Closer to the time for the operation my right arm pain was not as bad but had intense pain in the middle of my neck and one doctor described it as "your chin seems to be at one with your chest"  I was like that for at least 45 days prior.

immediately after waking up after surgery I had intense pain across my base of my skull right at the hairline.    I could have sworn that is where they cut into that area.   My incision I could barely notice but it felt like a deep cut had been made right at the hairline in the back of my neck.   I had never felt this pain prior.

Physical tests show improvement in strength in my right arm.    There are times of electrical pain that run down my right arm and fingers but typically lasts for only a 30
Avatar universal
I had a fusion of C5-6 with titanium plate and screws.  I too have never been the same.  I also had supposed cord compression.  From the second I woke up I had severe pain, even worse than before surgery.  I have constant pain in my neck and into my shoulder blades.  I have numbness and tingling all over, including legs, feet etc....I lhave lots more too.  The neurosurgeon said "you're fixed".  I did wear a hard c collar for 4 weeks.  No doctor would take me seriously until full recovery from the surgery and full fusion. I was told about 8 months.  Well, here I am today 18 months later.....still bad.  I'm not sure whether it's all from my surgery or if it is something else triggered by the stress of the surgery.  I've been diagnosed with fibromyalgia, spinal cord injury (without evidence of cord injury on MRI), chronic fatigue etc....I really don't know what it is.  All I can say is I got worse immediately post-op and have never recovered.  I hope this does not happen to you.
Avatar universal
I am scheduled for ACDF on April 5th....C4/5 & C5/6...Original dx was pseudo tumor cerebri....seveal LP's with consistent high opening pressures.  The neuro symptons for me were surges of pressure in my head accompanied by loss of coordination, depth perception issues, a fading in my hearing, a VERY stiff neck, all over trembling - often uncontrollable - these symptons would all subside in 5 to 7 minutes....and I'd be fine - until it happened again - often several times a day and often I'd go days without any symptoms....a followup MRI to rule out a dural tear revealed the herniated disks.  Evoked potentials are abnormal.  I have some pain in my shoulers blades, across my collar bone and down my arm, numbness in my hand that is creeping up my arm - but nothing I can't live with....My ONLY reason for undergoing this surgery is that it will STOP the surges of CSF pressure in my head....My neuro doc says it will - that this has been my problem all along.....the neurosurgeon is skeptical.....What I don't want is what you all seem to be suffering.....WORSE symptoms and pain AFTER surgery.....I am "torn" about what to do.....I do have another neuro consult on the 29th but the surgeon says the outcome of that appointment isn't going to change the fact that I require surgery.  Any input from anyone?  Do you think that the herniated disks could inhinit the free flow of cerebral spinal fluid?  It seems "logical" to me.....but I can't seem to get a definitive answer from anyone........Deb
Avatar universal
Best of luck to you.  You sound like you live in misery as well as I do.  I hope that the next doctor you see helps you make your decision.  I would hate to see you go through what we have.  I would never have any kind of surgery again without a second opinion.
Avatar universal
All I can tell you is that I would never have an ACDF without at least 2 surgeons telling you that it is required.

ACDF is now being well known for being over done.    In my case I was so bad off they had no choice.     The fact I waited so long may be why it is taking so long for me to recover as well I don't know.

Your symtoms are no where near a severe as mine were.   I could no longer drive a car or really carry or pickup anything off the floor etc before.

My head was in a consent state of looking down.    Two level ACDF is common and most people come out of it just fine but this is not somthing to take lightly.  

No offense to any doctor but if I am going to have my spine fused I want to here that it is required by at least two surgeons

I can't stress enough that a good relationship with your surgeon is soo important.  In my case that did not happen.

Best of luck to you....  I will keep you in my thoughts!
Avatar universal
Thanks for your good wishes Johnny......Quite honestly, the issues that go on in my head and MUCH
more disconcerting that the herniated disks......aside from general discomfort - the "very occasional" day
that I need to take some analgesics for pain are - in my opinion - rare.  The discomfort I do have and the numbness....etc.....I CAN deal with.....to avoid surgery.  However, these "episodes" that happen in my brain
are far too often and the neuro "side effects" are almost debilitating - but again.....only last a few minutes.
I have no pain in my head.....just IMMENSE pressure......when it builds until I think my head is gonna pop - the neuro effects are very obvious to anyone watching me. Can barely put one foot in front of the other and for the life of me I can't step up one step to the porch......it's like my body doesn't know what to do with my legs.....I'm confused,  I feel very "far" away and noise and visual things are far away as well.....but again, it passes relitively quickly.  Been tested for MS, Lupus, massive amounts of blood works, MRI's all good, VER tests fine, no papiledema, EKG, EEG, holter monitors, stress tests, and on and on......been tested to death - all they know is the CSF pressure is too high.....and during an "episode" - I'm sure it's about off the chart - feels like it anyway......I was originally referred to the surgeon to have a shunt put in my head.....to reduce the CSF pressure - it was he who did some further testing - again a cervical MRI to rule out a dural tear - sent me back to the neurologist because with the absence of decreased visual field, papilledema, and debilitating headache - he was NOT going to put a shunt in.  The neurologist insists
the herniations are the root cause of my elevations in CSF pressure......back to the surgeon who ordered evoked potentials tests - which are abnormal......hence the decision for surgery.   I have a terrific relationship with all my docs......and the surgeon STRESSED that I hear what he was saying - not what I wanted to hear......and that is - he is SKEPTICAL that the herniated disks are interfering with the CSF flow and causing it to get "pinched off".......So, I have one doc telling me yes - one doc telling me no.......As I said earlier....I have a new Neurologist consult on the 29th.....The surgeon was very comfortable is sending me for a second surgical opinion if I wanted.  I'm pretty uptight about it all after reading your post.....as well as the others......I WILL let you know tho what my final decision will be......Thanks for replying...>Deb
Avatar universal
I'm also very skeptical about your disks causing your head symptoms.  I have head pressure too.  Come to find I have a chiari 1 malformation which does cause head presssure etc...  It was missed by the neuro surgeon!!  I would think cord compression that bad would affect your legs before your head.  I had trouble walking, numb from neck to feet.  That's why I had surgery, because they told me I had cervical myelopathy and I couldn't walk right.  I waited 3 months because I didn't believe it was my neck.  I did NOT get a second opinion because it took 6 weeks to get one and it was the day before the surgery.  The doctor said not to wait too long or I would have permanent damage.  I was scared.  I would STRONGLY suggest a second opinion at a large, teaching facility.  I had several appts. with 3 different doctors months after the surgery.  These were at a large facility.  All three doctors said I never had cervical myelopathy and didn't need the surgery.  They couldn't tell me what I had though.  They ruled out MS and said fibromyalgia and chronic fatigue....NOT!
Avatar universal
Hi Patsy,  Thanks for your comments.....Been thinking about all of this ALL day - really it was your's and Johnny's posts about significant issues AFTER surgery - that have given me some serious doubts.  As I said, physiologically, even with abnormal evoked potentials - my symptoms from herniated disks are minimal at best - oh, the numbness is annoying, the relatively minor pain aggrevating, the arm and leg weakness certainly "slows" me down.....but I can live with it all - if it never got worse.  It's the damm pressure in my head - I could even live with that.....it's the neurological side effects of the pressure that I can't live with.  It's been 3 years and I am sooooooo very weary of it all....
I'm going to this new neurologist armed with a list of questions.....and you know, it's been 3 years - what's a few more months.....I am only 2 1/2 hours out of Boston and the Lahey Clinic.....perhaps a trip down there before I consent to surgery is in order.......I did really well on Diamox for about 2 years - but it seems it filled both my kidneys with stones.....so I had to stop taking it.
The side effects of Diamox are uncomfortable - mostly feet and hands "falling asleep" - and that constant pins and needles feeling is - well, it's painful in another kind of way......Thanks for writing and I just might take your advice - and Johnny's advice and seek out yet another opinion.......Deb
Avatar universal
  You could go to the CCF spine center.  I did.  I live about 40 minutes from Cleveland.  I was told though, that they usually want you to follow up with the neuro surgeon for the first 6 months or so.  I was only 4 months post-op.  Physiorehab doctors help with these kind of problems.  I thought the physio doc there was very good but, all in all, I was very disappointed with CCF.
Avatar universal
Just got back from a round of doctors, today I had yet another complication.    Severe pain in my ear.   My surgeons office sent me to my family doc thinking ear infection, the family doc said no infection he felt it was yet more muscle pain issues related to my ACDF.

The surgeons office had little to suggest other than to continue the exercises that were advised to me.   I guess it is important to keep the muscles moving in the short term it is very painful and really no painkiller seems to dull muscle pain for me.      I have to admit I have not done them to the level they have asked due to the fact they hurt so badly.

Almost every doctor has thought the pain I now experience is musculoskeletal in nature.    Are there doctors that just specialize in that?    I live near the CCF.   I have not seen any listing that mention doctors that specialize musculoskeletal problems.
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