Proof that things can always get better years later

[steve55]

Hi everyone. It's been a very long time since I e posted here. I've been through a 3 level ADR and then the removal of all the ADR's due to staph infection. Dr b fused me at c4-c7 after removing the ADR's. For several years afterwards, (Im guessing 3-4 by now) Ive dealt with constant pain problems, with the level of severity fluctuating. But I've always been on pain meds since the ADR removal. At one point (maybe 6-12 mo after surgery) the pain bled down through the nerves that control the bladder areas, and i started to issues below the waist too. I visited several neurologists, some of the very best here in Dallas and they all told me how they couldn't see how a c spine issue could affect anything below the waist. They had never experienced it with a c spine patient and my radiographs didnt show anything wrong. I then saw a urologist one time who did all kinds of testing and couldn't find anything to explain it either. I finally did more extensive research to see who the top urologists were here in Dallas and paid one a visit. His credentials were very impressive and he now ran his own center with many urologists working under him. This guy said that he sees these issues like mine quite often with "failed back surgery" patients. It's been a while so I forgot how he explained it exactly, but he said something about there being two types of nerves in the spine and that the c spine nerves can irritate what would otherwise be healthy nerves of the lower extremities. In other words , if one is being irritated, it can transfer the irritation to the other type of nerve even if that other nerve is completely healthy and undamaged. He was a bit surprised when I told him that 2 other neurologists and a urologist hadn't already told me the same thing he was telling me. Anyways, a year or two after that, I continued having pain and stayed on pain meds , some months were a pain level 3 to 4, other stretches of time pain level 5-6.

Well, about 4 months ago, the pain was getting much worse again. Instead of just the typical pain pill routine which wasn't really doing enough anymore, I was asking the doc to add some neurontin or other nerve blocking anti convulsants to see if they would help. He wanted me to try epidural injections first. But due to a high deductible insurance plan, I couldn't afford it so I continued with only pain meds until I could save up for the epidurals. Well, not but 2-3 weeks after, I woke up one day and found I was pain free. It was fast and sudden too. But what coincided with the new found lack of pain was a new crunching and grinding or grating sound in my neck. I mean, I could ever so slightly turn my neck from left to right (or vice versa) and no matter how slowly I did it, there would be popping sounds every few degrees of turn. Almost as if my neck was popping into grooves like you might find on gym equipment where the teeth slide into preset grooves. If I did the head turn fast, the popping would just be faster, kind if like when you twist bubble paper. Anyways, it was really worrisome and creeped me out as I never experienced this kind of loud severe popping and grating before. Over time ( these last 3-4 months), the severe popping and grating noises have slowly subsided to where I can turn my neck with only slight popping noises. But the pain so far remains 90% absent. I only occasionally need a pain pill after the end if a hard work day. But unlike the last 6 years of my life, i can now sit long periods of time as I do at my desk job and when 4 or 5 pm rolls around , I'm still completely pain free which has never been the case before. So, I don't know what all this means but the point is that after many years of post surgical pain, one can become pain free or significantly improved. I mean, once you've battled pain for so many years with no signs of improvement, you just figure "oh well, that's my life". I never expected to become pain free much less have it occur literally over a 24 hour period. It wasn't a gradual pain free, it was a "wow, I am suddenly better", and its stayed that way ever since. The back is a crazy unpredictable thing. I'm keeping my fingers crossed that it stays this way. I guess at the very least, I'm a good example of how one can have a 3 level ADR, and have them all removed, and then be fused at 3 levels and years later, turn out ok. Just thought I'd share. Hoping my back probs are now behind me. There's always hope as long there are people like me out there.

[Maria]

Steve,
That is just wonderful news!!!! I too haven't done anything in ages re my spine at least surgically (since '92) and I experienced improvement with my symptoms as well though not to the degree you have but rather to an acceptable degree to me at least for now.

I wonder if in your case you moved off a compressed nerve or like me maybe you autofused?

Thanks for coming back and sharing this news with us! I hope everything continues in this manner! Maria

[jsewell]

Steve that is a great story, i am happy for you. By the way, my neck went through a period of constant grinding and clicking and popping too. I am fused at C4- C7 as well. My surgeon wasn't concerned when it was happening. Unfortunately for me pretty much the rest of my spine is bad and i am fused from C4 thru L4.
Thanks for sharing
judy

[mmglobal]

Steve. I was sorry to read that your saga continued, but very pleased with the ending. Here's to your continued success (I'm raising a glass!). Call when you have a chance... I'd love to catch up with you.

Mark

PS. I was surprised to read about the difficulty relating the bladder control and 'below the waist' issues to your c-spine. As I understand it, the connection to even the lowest nerves originates in the brain and that 'lower' symptoms may be related to the obvious lower nerves; OR to the c-spine, t-spine, or brain. Bladder and 'below the waist' issues would not be uncommon symptoms of cervical myelopathy in the more serious cervical/spinal cord problems.

[steve55]

Well, starting about 3 weeks ago, my back pain issues came back full force. : (
I was so pain free for so many months that I thought that maybe I was resolved. Not to be. : ( Well, I'll just have to hope I have good months mixed in with the bad.

[mmglobal]

Steve, sorry to hear that you have backslid. (is that a word?) Hopefully you'll discover what I have about better times. Being better does not mean that you will not have episodic problems. But, if you can say that the good times are better than they used to be, the bad times are not as bad, you have longer periods of good, and recover quicker from the bad times; then things are much better than before. With any luck, you'll bounce back quicker than you think.

Call my cell phone if you want to talk... it's been a while since we've caught up.

All the best,

Mark

[Maria]

On what Mark said and I do hope you'll be feeling better soon! Maria