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in reply to: 2 Years Post 2 Level ACDF With New Type of Pain #11052
And Thank you again Dr Corenman.
You really do an amazing job of sharing your insight and knowledge.
I read the section you referred to and Those are great questions to ask!
As a patient it is easy to feel intimidated but we need to communicate
And do the research as you advise;)
I keep my questions on a list maker cell phone AP and bring with me to my follow ups
Helps get my concerns addressed.
I also find it supportive to have someone with me at my Appointments,
I am blessed to have a wonderful husband who is such a support.
Think patients should try and take someone with them to appointments,
Whether spouse, friend, family member.
Really Makes a big difference.Keep up the good work Doctor Corenman.
Wellness to all.
;)
in reply to: 2 Years Post 2 Level ACDF With New Type of Pain #11044Thank you for your reply post CowboysFan;)
. I appreciate the empathy…And understand the seriousness of your own journey through the Spine machine.
For me ,Yes it has been a saga , one that I would never have dreamed could happen. Bonefide Living Nightmare.
But i amnot a bitter person and I try to learn from every experience…improve myself…or pretend to for my attitudes sake…
Of course If only I knew more before going under the knife
The first time. Wish I had been able to receive a more forthright discussion about the risks
Of even an ACDF but as you know….yah can’t go back now;)….
(don’t you find it overwhelming going to different surgeons often
Receiving different opinions!?)
Of course Regrettably my outcome was pretty awful but that
Was largely due to incorrect placement/size of implant, then failure and then lack of follow up care to arrest the collapse and deal with complication… I still can not believe it happened the way it did… But Must move on.
How’s the song go “No regrets just lessons to be learned?”
I think I was a bit too trusting ..(.that’s changed(lol).
I also should have understood that spine surgery is a business FIRST.
Best that patients realize this possible motivation instead
Of trusting that a doctor is a God…and just because he/she says you will be able to run marathons again, be pain free, does not mean it will happen. ( In fact if he /she says such then run away quick!)
I wish I would have understood the life altering risks and also what would happen, heaven forbid, if any complication occurred?
Whatever surgeon you /we go to they need to be experienced in your exact surgery, and revision of if need be. My first guy was so confident he could fix me, but not so. Then he panicked not wanting to deal with a problem.
Rude awakening but I did not know the hardware could break so did not think to ask about before surgery.And Thank you CowboysFan for your suggestion about pain management.
Been through that strange but neccesary process and probably will be a chronic pain patient for foreseeable future( oh joy)
But again, so far seems like the same business model… Everyone wants to stick a needle in you, try injections steroids, spinal stimulator…
All temporary ( but billable )treatments with very limited result for me… Definitely have tried it all despite the often painful procedures.
PerhapsThe most positive thing I have gained through a very negative saga…
Is that much unbiased information can be gleaned if you can learn from other like patients …
Patients are not coming from a vested position where as when a surgeon profits from the surgery /costly implants or the pain management place makes more money performing billable procedures ( ie steroid injections etc)
Certainly Hard to feel informed enough with any major surgery but with spine surgeries we all need to be aware of being swept into the process, just because MRI report reads one way doesnt always indicate surgery…of course when we are in pain or discomfort we want FIX IT answers and resolution…
And just because a surgery is considered ” successful” by the surgeon, it may not mean your pain will be resolved. In fact, the result could be quite the contrary.
I remember when I thought I knew what level 10 pain was…..the worse your pain is the more you realize how relative perception is.(.a 10 before is like a 5 now.)So unless you are losing the use of your hands or have a spastic gait (say severe myleopathy)
Be cautious…and seriously consider all the possible risks…even the ones the surgeon may not tell you about..regrettably .be informed read about other patient, learn from their
Experiences , hopefully not also endure the same pitfalls.And CowboyFan I will tell you …The posterior fix it sugery Is brutal…for most.
If you are still considering…One thing my revision
Surgeon told me that was beyond true, (actually an understatement) was that
Posterior revision for a two level failed AcDF C5-C7
Is TEN times more painful then the index (anterior) surgery.
You may also have complications from supra spinal muscle atrophy
Leading some deformity and more muscle spasms …neck stiffness, headaches etc
They have to cut thru ligaments that provide stability
So if you have any micro motion ( the term often used) or hint of kyphosis …posterior surgery
Could worsen your problems.
Sure The posterior revision may address the original lack of anterior fusion and assist with de ompression but the posterior surgery may add NEW problems.
(I did not have a choice in my revision surgeries as index hardware had fractured and metal parts were sawing away and loose migrating into dangerous territory…)
To all who have the choice…may you be in the best of hands and understand the excruciating operation /recovery and risks.
If you have any kyphosis, posterior stuff can be opening a can of worms as
” kyphosis begets kyphosis”…then the cord drapes over any posterior osteophytes especially at higher vertebrae level, say C3/4 .l.
(not sure if that was your case CowBoysFan but that’s what’s happened to me.)
Not sure how on track this post was hope someone related and to have been of some possible insight.
Wishing you and all fellow spiney patients the best of care and health.
I will continue to follow your progress and shout out a thank to Dr Coreman for his constant concern.
Been reading his posts for some time and appreciate the generous and insightful unbiased knowledge.Here’s to your health!
AndybytheSea
in reply to: 2 Years Post 2 Level ACDF With New Type of Pain #11012Hello CowboysFan,
Your post ACDFc5-c7 pain scenario sounds similar to my own. Including the Shoulder and clavicle pain Amazing.
I read the whole thread and Dr Coremans insightful responses with great interest.
Have had 3 c spine ops including the posterior surgery you are now considering.
*I can completely relate to your concerns*! and look forward to following your outcome.
Unfortunately my revision posterior fusion was a salvage ( crisis surgery) . The operation, hospital stay recovery was absolutely beyond excruciating. Perhaps the most traumatic experience of my life. Regrettably I remain in severe pain still looking for answers.
My pre op ( revision posterior / anterior global fusion )sit was a bit different more complicated than most -so no doubt you will have better odds. Although I had a great revision (second) spine surgeon, as a salvage urgent surgery , doc could only could do so much…I was fortunate to have an existing connect with revision surgeon, as he stepped up to clean up my first failed surgery; ACDFC5-C7 (different Surgeon) ..where my hardware failed 2 months out- screws fractured and backed out into esophagus and bone was eroded by the loose implants.. nerves were squished by displaced grafts. Astonishingly this all went untreated by first surgeon despite my concerns about increasing symptoms and obvious dangers of broken spinal hardware. I finally changed surgeons as I feared for my life. (I was terrified as even a lay person could see my screws were backing out and broken on
plain X ray. Parts were migrating moving by the day)
Despite my current surgeons best efforts with revision posterior fusion (and his excellent care )
I am now left with a twisted kyphotic mess residual from initial surgery( windshield wiper effect of toggling screws which cut out my bone and affected my spines global balance and alignment.)
(Btw postop I was incredibly careful with my activity level and wore BGS too. I have always been healthy a Non smoker health fitness buff.who would think titanium could crumble? It turns out the placement and size of initial anterior implant was not appropriate to my anatomy and worse, when things went south,initial surgeon avoided me, and his PA did not put me in a brace or instruct me to limit my activities)
…I truly feel just lucky to be alive! To have listened to my instincts/body and sought appropriate care before becoming paralyzed.
You are obviously well studied and thorough- stay that way! One can never be careful enough or too informed when it comes to the spine! For anyone reading this, considering spine surgery;explore all options and take the time to fully research surgeons and treatment alternatives . Utilizing resources such as this spine forum and learning from others experiences may make the difference in your quality of life. The input by caring knowledgeable doctors like Dr Coreman is invaluable. (And greatly appreciated!)Thanks for your thorough and detailed posts CowboysFan. Glad to hear you also followed your instinct, even though you were told there was a solid fusion you felt, knew differently..and were correct! Something was wrong. Medicine is not an exact science but communication and information is crucial.
Your determination lead to the recognition diagnosis of your non fusion that now you can address. Fantastic that you have an excellent surgeon. I empathize with you and wish you the best of outcomes with your surgery.
Keep us posted and good luck!
Btw Hope my rambling comments did not stray from thread, I am new to the forum and usually do not post much online. I fear I wound up sharing much when my intent was more to thank as your story struck a cord.:) -
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