It is long story I will try to shorten as much as I can but I hope you read it, then share your complete story.
I started out of the blue with cervical issues in my mid-40s. I have congenital stenosis and very short pedicles, worst in my neck but also present in my thoracic and lumbar. This creates a tight spaced spine but not horrible for a healthy spine. In the cervical there were spots about 7mm but in the others they are still borderline around 8mm. It never caused me any trouble until my 40s. I was active and healthy.
Four and a half years ago in my cervical I herniated w/disc fragments C4-5 and C5-6 really bad. There was no accident or something I remember doing to cause this injury. I just woke up one morning in horrible pain (arm, forearm, wrist, hand, shoulder, neck) I had started building huge bone spur ridges in the neural foramins and right side nerves completely impinged by bone spurs at C4-5 and C5-6 at the root where it attaches to spinal cord - worst pain ever (10s)! The other cervical levels all had bulges and minor stuff at that point except C6-7 was of medium buldge. Spinal Degeneration had started drying all my discs out at every level. At this point I only have cervical issues. After that herniation at C4-5 I started to get some slipping off the vertebrae and a reversal of lordosis and another nerve pinching at a different spot - so after 6 months of conservative therapy of rest, physical therapy, epidural injections, I did the first fusion at C4-6 four years ago. I have had xrays, mris, emgs all confirming my condition. At that time one surgeon said I should do a lami but I was working and didn't want to be off long and 2 surgeons said ACDF would be fast recovery it sounded like a quick and easy fix for my case (boy was I wrong).
After my first surgery I was 100% great - back to work and all activities. Within 9 months (I was fully fused) I was in ER again with 10 pain. C6-7 had herniated all the way and impinged nerve roots and spinal cord, bone ridges were also growing everywhere again . We tried conservative therapy again but it didn't help so I had my ACDF revised in another surgery and extended to add C6-7. They cleaned out bone ridging that had regrown at the original fusion and did C6-7 took out all my old hardware, the disc at that level and put in new bone and hardware . Used donor bone both times. Now fused C4-7. I wore hard collars both times for about 11-12 weeks each time.
After all this, I still had pain coming from cervical levels along those nerve root dermatomes, I went back to work and kept very long hours. The pain wasn't as bad as before surgery and I figured it would get better over time and just kept taking injections and pain medications. Within 6 months I had to stop work it was so bad again my arms get stabbing pains constant nerve burning and my shoulder near bicep and neck hurt all the time.
Don't get me wrong, I think my cervical surgery was successful, I went from 10 pain to averaging 5-8s everyday - so I am comfortable and in pain management. I also stopped working and changed my entire lifestyle.
After another year, I started having very severe chest and mid-back pain. The chest pain kind of mimic'd heart pain, and was also under my armpit and side of chest. And in my center mid-back very severe and back up in the pain level 9s. They did another MRi and discovered I had medium bulges at T2-3, T5-6 and T11-12 with an asymptomatic hemangioma spanning 2 levels. Being kind of rare for builges in the thoracic I kind of thought it was from the pressure of upstream fusions and my degenerating spine disease.
After my previous experiences that surgery doesn't fix everything, I did not want any more surgery, especially thoracic, so I live with the thoracic issues and treat it with epidural injections and pain management on an ongoing basis.
Finally this past year the lumbar started acting up too. I have bulged L4-5 and central herniated L5-S1 with nerve root displacement and all the other levels are dessicated and look ready to bulge or blow too. I am experiencing significant leg symptoms of pain in the front of my thighs, knees, shins, ankles, and bottom of one foot into toes. With a good neurological report, I still "feel" weakness and stiffness and pain all the time. I am kind of watching some other bladder symptoms and will probably have a discussion with doctor at next visit, nothing bad happening but I notice some extreme urgency issues, times when I don't feel I am emptying completely, and times when I am having constant tiny drip. Now is this from the back or is this old lady stuff - who knows I guess I will ask. Getting a lumbar epidural for this in March.
I am 50 but feel 90 and look 35!
In my entire spine all the discs have dried many bulged, some herniated and have spurs and they say every day any could blow so I monitor my activities, take care of myself and continue to rotate epidural injections through my cervical, thoracic and lumbar spine doing them as little as possible but enough to keep me in a reasonable pain range.
I am not against surgery, I think at some point you have to accept what is yours and just work with it, until they find a better way to fix all this stuff. I have an autoimmune thyroid disease called hashimotos and that kind of challenges my muscles sometimes. I have been talked to about stimulator implant and have nixed that as well since I don't want anything more invasive than I have to at this point. I don't like medications but see them as necessary and use the patch and backup and neurontin cycles and whatever else that keep me living the most full life that I am supposed to live.
Depression comes and goes with things like this so if you have the same and are suffering from that I highly recommend a round of sessions with a pain psychologist whether you think you need them or not you might find, like I did, that there are some helpful hints to learn from that person.
If you read down to here thank you, and if you are in pain today I am sorry and hope tomorrow is a better day!!!!
NP-thank you for posting your story, as painful and sad as it is. Amazing that you didn't have any problems at all until your 40's and then it all came "tumbling" down. I can see your apprehension about surgeries on the one hand, but the need for it when there seems to be no options.
My spine situation can be found on other posts but your mention of bladder concerns also caught my eye. I was told almost 6 years ago that I would qualify for surgery when paralysis was iminent, which would be characterized by bowel/bladder incontinence. Two years ago I started having problems in these areas and am trying to write them off as old lady problems as well. But it was worse laying down, which is when I would feel a sudden, almost, 'punch and release' feeling in the bladder but like it was travelling down a nerve or something; when I did get up to go to the washroom, I couldn't go, then it seemed to 'unlock' maybe 10 minutes or so later. Sometimes I really need to empty and don't know, other times I think I do but can't, or it stops suddenly when I don't feel emptied. I remember the day I had a bowel movement and didn't feel it, but I figured that was other issues as well. I speak of the nerve symtoms in past tense because like all the other nerve symptoms that I have experienced over time, eventually it lessens and the area seems to go almost numb, while other symptoms remain. And yes, the result has been frequent UTI's which I regulate with cranberry supplements. I just wanted you to see this because old lady, hormone therapy to thicken my linings did not seem to help this at all. No two people are the same, but I am interested to know what your doctor will have to say about this with you, and if he feels you might be headed into a critical 'arena' again.
Thanks again for posting, I hope to have been of some help, and I really hope that you achieve some desired results after all your suffering and efforts to cooperate with treatment,
I love chocolate too! You know it is actually good for you when it is dark chocolate
Thank you for your words, I am going to private message you with a few questions. I was kind of thinking cauda equina would show up with like big symptoms of loss of complete control - so it is hard to know when to pursue. You probably know this too I don't want to cry to the doctor about every little thing that happens to me!!!
Thanks for the cranberry tips - I have had my share of UTIs that came on at the same time. I will watch for your posts and get to know you better. NP