MULTI-LEVEL CERVICAL DDD - SHARE INSIGHTS ON SURGERY PLEASE!!!

@cyp238ress
I am a 55 year old female. I have had ACDF surgery on my cervical spine at C5-C6. I was diagnosed with cervical spondylotic myelopathy which is compression injury of spinal cord (cord was flattened and it caused headaches, neck/shoulder pain, arm/hand weakness, bladder problems and heaviness in legs when walking). That is an urgent need for surgery since my spinal cord was compressed for 3+ years (have congenital stenosis and a very narrow spinal canal).

Your MRI does not seem significant to require surgery and I would suggest getting a 2nd and 3rd opinion before doing anything. Did you do physical therapy for your cervical spine and have you had EMGs done (upper/lower) to check your communication to/from your muscles? Have you had any spinal injections to help manage pain?

I had radiculopathy diagnosed for upper and lower limbs at different times which indicated pinched nerves. I also was diagnosed with idiopathic small fiber neuropathy via a skin punch biopsy plus peripheral neuropathy which causes all sorts of “fun” symptoms.

I am getting lumbar surgery soon (have severe stenosis/DDD L4-L5) and neurogenic claudication. My surgeon is the same I had for my ACDF surgery. He was the 2nd surgeon I met with and trusted him more over the other guy and my surgeon had excellent patient reviews and ratings. You want to consider the surgeon plus ratings/reviews of the office staff/hospitals where surgeries are performed.

Good luck get other opinions and making decisions. My surgeon said that surgery should be a last resort when everything else has been tried and your quality of life has been significantly/negatively impacted. Mine has been impacted because I cannot sit/stand/walk, etc. for long without pain, weakness, numbness, etc. in lower back, hips, buttocks, legs and feet.

@dlydailyhope,

Thanks for replying. I too have small-fiber neuropathy diagnosed via punch biopsy. The neuropathy has made this whole mess complicated, since I'm not sure which symptoms are "mechanical" (i.e., pinched nerves, arthritis, etc.) versus the neuropathy. I also deeply worry how I will respond to spine surgery due to the neuropathy.

I have seen probably six surgeons now. Some have advised surgery, some not. I have had PT, five steroid injections, fascial counterstrain, feldenkrais, Botox, etc, etc. I also had EMG's recently, and they only showed mild C5-6 chronic nerve root compression. The doctor said there is "no evidence of nerve disease", so I'm thinking that the arthritic changes are really driving the spasm and pain. I am seeing yet another surgeon on Friday who has an outstanding reputation, so we'll see what conclusions he reaches. Also scheduled to see neurologist on Friday and want to really ask hard questions, because surgery obviously wouldn't help if a large component of my pain is instead being driven by some neurological syndrome. I do wonder if something akin to cervical dystonia is going on.

FYI, my neurosurgeon said 55 was the oldest he would consider for ADR and that was only if there were no complicating facet pathologies.

I should add, for context, that this mess started with symptoms that were likely C6-7 (parasthesias in middle and index finger, etc.). Then, I severely herniated the same level doing a ceiling repair. At that time, the surgeon offered a microdiscectomy, and I should have done it but was scared. The bad muscle spasms on the left side of my neck started immediately after that herniation and have continued unabated, despite the herniation partially resorbing.

Of the ESI's that I completed, I got strong response to C6-7 injection (although it only lasted two weeks), no response to C4-5 injection.

@cyp238ress
Have you had extensive bloodwork, seen a rheumatologist to check for autoimmune illness, had a spinal tap to check for CIDP? I hear you, when you have so many symptoms it is hard to tell what is structural/mechanical vs. systemic. My surgeon said that EMGs of upper/lower limbs are not good for diagnosing spinal cord/nerve root/nerve health. My recent lower EMG came back “normal” but I have significant lower back, hip, buttock, leg and foot pain/weakness/numbness. Most likely my L4-L5 severe stenosis and neurogenic claudication is contributing to these symptoms plus I have residual spinal cord injury from C5-C6 that affects my brain/body communications below that level.

Good luck getting answers asap!

What was the logic for not doing ADR on patients older than 55? I have not heard that before.

I too am concerned about ADR since I do have facet arthritis. I know doctors are doing ADR in many cases if the facet arthropathy is mild.

I had a spinal tap approximately 9 months ago, and it came back with elevated spinal fluid protein (125). I have had a consistently elevated CSF since I was diagnosed in 1994. The doctors have no idea why I have neuropathy, although I strongly suspect a genetic component.

@cyp238ress
I meant to let you know that my daily headaches, neck/shoulder pain improved after ACDF surgery. They removed bone spurs and my disc, created a “cement” using my own bone from spurs so my body accepted it, put in a titanium cage to support my c5-c6 level. It was not as bad of a surgery as expected and I was working on my laptop in bed 2 days afterwards. You may want to consider the right surgery/surgeon if it will help alleviate pain/remove compression on nerve roots. DDD will worsen over time and you need to determine if quality of life is impacted enough to warrant surgery. Mine was. PT and injections would do nothing to stop the injury to my spinal cord. If you delay surgery, spinal nerves/nerve roots in your cervical spine that are pinched/compressed for long periods of time could cause permanent damage and symptoms.

@cyp238ress
If you have elevate proteins in your spinal fluid, you may be at early stages of CIDP (chronic inflammatory demyelinating polyneuropathy) which is autoimmune attack on myelin/nerves. If this is diagnosed, you would want to get therapies to delay/slow the progression. My understanding is a neurologist usually diagnoses this and not sure if a rheumatologist can help with special bloodwork/therapies.

I've thought about CIDP, although I've had this elevated CSF for 30 years now, and I show no signs of demylenation on physical exam or EMG. But I'll bring it up with the neurologist on Friday.

I just wonder: is my neurological history such that I should not consider spine surgery?