Cervical degeneration after nearly 2 years getting worse

Hi everyone,
how are you?

Last year I had neck laser surgery in Florida to decompress left C6, C7 nerves. The Deukspine surgery was a failure because my pain has increased a lot more since in August 2023. Dr Deuk promised me that I would be pain free but that was not the case.

It's been nearly 12 months and my neck has been gradually getting worse. I have extreme chronic pain between left C4-C5, C5-C6, C6-C7 and C7-T1.

I feel bad numbness in my neck, painful pins and needles, referred pain in shoulders, shoulder blades, arms, hand, fingers, back, groin, legs and feet.

Since 7 days ago, my neck tension, stiffness, pain, pins/needles, numness has increased dramatically, it is full on as if something is biting, catching inside. At the same time I feel numbness in my groin, legs, feet and toes. The left foot pain is very bad, it feels extremely tight, numb everywhere as well as the leg.

I am not able to relieve the neck pain, not even with strong opiods. I tried gentle stretches, traction, posture, heat, cold, massage, deep breathing but nothing works.

I am going nuts. The pain, the numbness is stressiong me out a lot. I noticed that the pain in the neck is proportional to the pain in the leg and foot. The more numbness in the neck, the more numbness in the foot and leg.

I just wanted to mention that my MRI shows the disc pressing close to the spinal cord. The doctors have excluded spinal stenosis but this area hurts a lot together with the C6, C7.

I have been to the GP here in Melbourne Australia but he has no clues apart from throwing more drugs at the problem.
The hospital has the same attitude.

I asked them to investigate or at least take a new scan of my neck area but they are not being very helpful because the do not deem my problem are as urgent as other emergencies.

I am left with the physiotherapist that has tried, but I still have severe pain, referred pain, tightness, spasms everywhere. in the neck and feet.

I haven't been able to sleep for 5 days and feel exhausted.

Now I have nausea, inability to focus.

Could something be pressing on my cervical spinal cord?
Does anyone have any ideas?

Thank you.

Best regards

Alfred

Have you thought about going to the Mayo Clinic? I know you live in Australia and it is a long way to go but it seems like you have a lot going on.
Hope you feel better.

Helen

I had cervical spine surgery last year at 67 . The front was amazing but the screws didn’t not hold and the backside had to be more extensive (c3 - t2). So much of my pain is gone after 60 years from an auto accident and work related issues. But so much is still painful while healing over the year. Much is myofacial, so I supplement with deep tissue massage. Your radiology looked a lot like mine. Make sure you have best orthopedic surgeon. I trust mine. My recovery has taken a full year. I still want to work so I endure self made pain. It takes a complement of things. Botox, pain killers, P.T. And going back to p.t. After a six month break. I am so severely round shouldered the rod is hard to adjust to but my posture looks magnificent!!! The good with the bad.

Alfred: I’m so sorry to hear that you are suffering so badly. You didn’t do anything wrong or “stupid.” You were in great pain and relied on a qualified surgeon who gave you assurances that a procedure would provide relief. The outcome is not your fault. Sadly, I have no advice to give. I’m struggling with cervical stenosis, but not close to the degree that you are. I hope you can eventually find some answers and at least some lasting comfort.

Mayo isn't the best place for extensive cervical surgeries. If Alfred, has instability he would be better off finding one that specializes in that.

Mayo has no one available for instability to my knowledge. There is one in Rochester that might, but I haven't been able to get into him myself yet. I have Mayo insurance and live in Wisconsin.

Alfred,

Have you ever considered that the symptoms could be cause from instability?

They did a decompression, but no fusion?

Usually, muscle spasms and tightness can indicate your muscles are working overtime in order to try and stabilize your cervical region.

I am certain I do have some instability. I have similar symptoms and more. Your neck can affect so many things, including dysautonomic dysfunction.

Have you ever had any accidents like motorvehicle, or others?

I am hypermobile (hymobile ehlers danlos) and have had some horse riding accidents in the past.

There are some very knowledgeable groups on FB about cervical instability.

Unfortunately, there are very few surgeons in the world that are knowledgeable about it and perform surgery. Which to me is surprising, as I'm sure there are more people with it, than we realize.

It affects my quality of life greatly. I do stretches, see a Chiropractor that doesn't use rough manipulation, muscle relaxers etc. I am now doing injections to numb the facet joints, which helps a little. Than ablation. Ablation, won't exactly help a lot of the symptoms, like nausea, dizziness, fatigue, dysautonomia (which regulates so much in our body) the various headaches, migraines and cervical neuralgia.

Best of luck. It's a long stressful road. I pretty much gave up finding a surgeon, as they are so busy. (The ones in the US). My insurance covers Mayo, and anything outside of that is not covered, therefore out of pocket. I don't have 50k to drop on a surgery. If it continues to worsen, I hope that I honestly don't live another 20 years. (I'm 40 right now). I currently work about 35 hours a week. I would like to go back to school to get bachelors in nursing, but I am exhausted just with work and daily life. I don't have a choice to go on disability. It involves a lot in the US. Plus, I would rather not be on disability. Mentally and physically it's better for me to work. I just want a better quality of life.

Hi Cassie

How are you?

Thank you for your reply.

I am 67, and have been a fitness fanatic since 2002.

I rode the road bike every where in Melbourne. I rode anything from 50 km to 200 km in a day.

I also went to the gym and used to bench press 75 kg age 64.

I have was a victim of 3 very bad accidents while riding the bike from 2013 to 2019.

It wasn't my fault because I was run over by negligent drivers, one of them was a drunk driver.

These accidents caused massive whiplash, fractured ribs, fractured left transfer processes, fractured pelvic ramus on both sides.

I recovered each time, and in 2019 it took me 10 months to recover.

I flew to the US because I didn't want a cervical fusion. The thought of being fused scared me.

In Florida Dr Ara Deukmedjan promised me that I would be pain free after the laser surgery, I recorded his words

Basically he did a micro Diskectomy using his laser tool.
He also ablated my facet joints nerves bilaterally from C5-T1.
These rhizotomies burned my neck paraspinal muscles causing me a drop head after the surgery. I somehow partially recovered from it but my trap muscles are still weak despite exercising. I hope he didn't destroy some muscle nerves.
He also did rhizotomies in my lumbar area.

I paid him $72000 USD for this butchering if my neck.
This money was from my traffic accident insurance

I still can't believe how can the medical board allow people like Deukmedjan to operate and destroy people's lives.

My quality of life is zero. I can't sleep at all at night and if I fall asleep I wake up with a lot of tightness in my neck and back.

I would love to go back to work because I am an IT professional with more than 30 years of experience but these injuries are debilitating me.

I go for walks, ride the indoor bike to try to get some fitness but I always get inflamed. The MRIs showed edema inside my neck.

Alfred

Dr Deukmedjan also created 2 lumps between C6 and C7 on my neck at the rear that I didn't have before the operation.

This area is blocking me from tilting my head backward.

@csalter, I believe that you are referring to cervical instability related to Ehlers-Danlos syndrome (EDS), specifically hypermobile Ehlers-Danlos syndrome (hEDS). As you know, there is an Ehlers-Danlos Specialty Clinic exists at Mayo Clinic, Florida (https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/)

Spine care experts can be found at all Mayo Clinic locations.
- Spine Care at Mayo Clinic https://www.mayoclinic.org/departments-centers/spine-care/sections/overview/ovc-20426369

I hope you will find an expert who will help you find answers to your issues. Here are some patient stories and articles from Mayo Clinic
- EDS https://newsnetwork.mayoclinic.org/search/?search=Ehlers+danlos
- Spine surgery https://newsnetwork.mayoclinic.org/search/?search=spine%20surgery

Hi Colleen,

how are you?

Thank you for your contribution.

I am not sure if I suffer from EDS because the neurosurgeons here in Melbourne Australia, never diagnosed me with this condition.

Obviously the multiple bone spurs, impinged nervers, the altered cervical spine structure contribute to almost chronic spasms that contract my neck muscles causing tighneess, stifness etc.

When I am at my worst I feel as if my head is being pushed forward. Not sure if the muscles in the neck are kicking in constantly to keep my head stable.

The only drug that is very beneficial to me, is buprenorphine 2mg sublingual. I tried oxycodone, tapentadol, gabapentin, nortriptyline which do not agree with me therefore I stopped taking them.

I know the theory of relaxation, but it not easy for me to practice relaxation techniques when I am under the pain hammer.

Alfred