So, I went to see my neurosurgeon the other day...

Post Reply New Topic

I wanted to see about getting some surgery done in hopes of reducing pain, which has been worsening over the past few months, and regaining a bit more leg function.

In addition to congenital defects (an abnormally narrow spinal canal), my problems are caused by progressive ossification of the ligaments holding my spine together. This causes the formation of bone spurs that crush nerve roots and the spinal cord itself.

According to my surgeon, this ossification process is extremely rare (more common in Asians) and poorly understood. What's more, there's no cure and no treatment other than physical, surgical removal of the bone spurs.

He says I should be thinking less about regaining leg function and more about staying out of a wheelchair for as long as possible.

One of my more worrisome symptoms is slight numbness up to my ribcage. According to the doctor, that indicates a problem (nerve impingement) in the general vicinity T9--an area that's already been surgically decompressed once, just over a year ago

So, it seems that paraplegia and worse is likely to be in my future, and it may be in my near future.

I'm not sure what to think about this. I don't have the resources (financial, physical, or emotional) to have major spinal surgey every year or two. Also, I'm not sure about how much disability I'm willing to live with. I can cope with gimping around on crutches for the rest of my life if it comes to that. I could probably even deal with being in a wheelchair as long as I'm still independent and self-sufficient. However, I'm not sure I could cope with needing a caregiver or living in some sort of assisted living situation...

I would set the "However..." aside for now and just focus on what can be done to help keep you out of a wheelchair. I also have spurs causing troubles, and I am thinking about possibly getting some of them removed so I can remain mobile with a cane and not have to use a chair. As long as a doctor is not trying to push me in a direction I definitely do not want to go, I do my best to show my trust in the suggestions and efforts being offered.

I don't know what to suggest, so I'm only posting to offer my sympathy because I have some idea of what you must be going through. Around 15 years ago I started getting chronic neck pain and losing feeling in my left arm. I spent a year in agony and maxed out on painkillers leaving my mind in permanent fog. To cut a long story short a neurosurgeon wanted to operate and remove some spurs and also to chisel out some bone from inside my spinal column as it was compressing the spinal cord in my neck; however there would be a risk of damage to the spinal cord during the op which could result in paralysis or death!

My own general doctor advised against having the op as another of his patients had the same procedure (which was a complete success) but after a minor fall snapped his neck and ended up paralysed from the neck down! While I was stuck in the endless waiting lists (the national health service in the UK) my neck gradually went into remission so I decided against the op. However, I have to be very careful not to aggravate my neck as the spinal cord is a very tight fit inside my spine and it easily gets inflamed and swells making the problems worse. Just looking at something with my head tipped forward starts to aggravate it. I'll just add that the pain associated with the spinal cord compression and other nerve compression was horrific. Just something as trivial as sneezing and the associated sudden movement of my head felt like someone planting an axe into my neck. I used to swear aloud in public if it happened - and everyone stared at me, but I couldn't help it. The pain was uncontrollable.

Anyway, it is still in remission after 15 years and I hope it stays that way... along with my trigeminal neuralgia - they used to vie with one another as to which was the most painful condition, though the latter still gives me the occasional (extremely painful) reminder every few months that it is still there waiting in the shadows.

I hope you manage to retain or gain mobility and stay as pain free as possible.

As an athlete who enjoys mountains & his adrenal gland (potentially too much...) one thing I can tell you is that bunched nerves, at one point or another, have affected most of my neuro-motor functions. I only notice this occasionally in my neck or around my tailbone with regards to the spinal column, however a close friend of mine suffers minor scoliosis and the best advice I ever got for my back came from her; pillows can be your enemies! We're discussing not only vertebrae but I should remind everyone, cartilaginous disks as well. I imagine a nice strategy for you to repeat through your day would be memorizing the locations of couches you could watch the ceiling on - trivial, yes, yet this improved my posture and brought me quite a lot more range of motion above my shoulders, as well as a bit more control on my bikes!

Keep your head level with your shoulders and remember, the farther you can relax your musculature by any means, the more work gravity might do for you. Best of luck!

Wow, you're really lucky. I hope your luck holds. I've already had decompression and fusion of T8-T11 and decompression of C1. And now, it looks like I'll be having my 3rd spinal surgery the first week in August--decompression and fusion of T2-T3.

The doctor showed me an MRI I did about 18 months ago and compared it with the one I did last week. The bone spurs at T2-T3 had grown 3-4mm during that time and were starting to crush my spinal cord again! If I don't do the surgery, the doc says I'll probably lose the use of my legs in just a few months. So, I have to get it done.

On the upside, I should see some improvement to my leg function. On the downside, it might not help so much with pain. My lumbar spine and hip joints are also shot to hell. The Doc says I'll need more decompressions and fusions in my lumbar spine and at least one new hip to maybe stop the worst of my pain...

Have you gotten any other docs to check you out? Something so complicated seems like it would be a good idea.

Good luck.

^^^It's really not that complicated. It's just a matter of bone growing where it shouldn't and crushing nerves and spinal cord in the process...

Besides my GP I've had two rheumatologists check me out. Neither one could find any disease cause.

When my legs totally shut down the January before last, a local neurosurgeon looked at my MRI and said I had the worst spine he'd ever seen. He said he did not feel confident in operating on me alone and he did not think anybody else in town (a metro area of 500,000) could do it either.

Luckily, one of the best neurosurgery centers in the midwest was only two hours away. They ended up transferring me there and those guys operated and managed to restore about 60% of my leg function.

Once this latest surgery gets done, I think I will talk to my GP about referring me to the Medical School (there's an 8 month waiting list). Maybe they can figure out WHY this is happening... but I doubt it.

Yeah, I kind of figured you had done what you could, maybe was just hoping there was some magic thing out there for you. I really hope you find some relief.

I don't know what to say, but I care and will be praying for you.

Sorry to hear about this.Wishing you the best.

I was just thinking about you the other day when I was dealing with some of my health stuff and wondering how you were doing with yours ... I'm sorry to hear the situation hasn't improved. Your stoicism in facing it is always admirable, though, and makes me think maybe I should be reading some Epictetus myself.

I hope things go well for you.

I'm just gonna leave this highly relevant TED Talk here.... http://www.ted.com/talks/dan_gilbert_as ... e_we_happy.

You should watch it. It's eye opening.

I'm just gonna leave this highly relevant TED Talk here.... http://www.ted.com/talks/dan_gilbert_as ... e_we_happy.

You should watch it. It's eye opening.

I'm just gonna leave this highly relevant TED Talk here.... http://www.ted.com/talks/dan_gilbert_as ... e_we_happy.

You should watch it. It's eye opening.

Yeah, that's hedonic adaptation. The Stoics figured that out 2500 years ago.



Good video.