Spinal Fusion issues

@mpar6771 Yea U gotta love these surgeons, like Ur 1st one. Taking lucky guesses and then blowing U off. I said to one it's all fun and games till something goes wrong. Just like in your case. Then they don't want to be bothered. Well there's several procedures for at least free entrapped nerves. With varying degrees of invasiveness. But obviously there less expensive than other procedures and possibly they don't perform that procedure so they seem to be less forthcoming with that idea or suggestion. I've been in this situation for 2.5 years. And chasing a Phantom for 2 of those years... Well I guess we're Both 1%ers... Bcuz I have the same thing it's called a lumbarized S 1 and S2 joint. Where it's normally fused with little or no gap. We've got a small lumbar disc there. It's considered a congenital anomaly so more than likely it'll stay how it is. How long ago were your mri's done. I'm gonna moved to your next response.

@linda6101 Do you remember did they just do an injection or us a catheter or a endoscope to break it down. Was there any improvement at the time? How long ago do you guess it was. I understand after a while it all starts to blur together. Thanks

I'm just saying and this statistic is from PUB MED a respected Govt. website... epidural fibrosis has been reported to be the culprit in up to 46% of cases of Failed Back Surgery Syndrome (FBSS), a chronic pain condition found in up to 20–54% of patients who receive back surgery. Now obviously different sources will provide varying stats. But if this is even Close to the actual numbers. This should be being discussed and suspected much much earlier than it appears to be. GOOGLE : Percutaneous epidural adhesiolysis. This seems to be the least invasive form. I'm going to pursue it and hope it produces noticeable results. As I'd love to see more people relieved of this neuropathic nightmare... Myself included. 😉

@smn1 The MRI's were done in September and October. The myelogram CT scan was done in May.

@mpar6771 Well that's good as most providers will accept mris up to 6 months. Then they want their own done cha ching $. But this theory as to epidural fibrosis is my latest belief. And recent path of research as what answers are offered by providers are often few. And many times conflicting. I pursued MFR but it didn't seem like many providers offered it in my area. And requires many visits to address it. Then I found epidural adhesiolysis and thought oh this is it. But now I'm finding very few places offer this. At least in my initial searches. And one of the places that does advertise it Nura pain clinic has Terrible Yelp reviews. But as to your situation, I hate PT as much as anyone. But one of the objectives is to try and break down and or prevent scar tissue. Which is a natural part of the healing process after surgery. And some of us even tend to produce more than others. Now these providers want to offer services they provide... But look at what's happened with you. You had the initial injury and the surgery. And you should have been relieved of your pain and been able to proceed with your life... But that hasn't happened and these Dr's best guesses aren't doing a damn thing to resolve that. Now if you step back and look at your circumstances. You had your surgery and over time the pain has increased and now is spreading out from your surgical site as well as increasing in intensity and constant... So if you consider after your surgery, scar tissue starts to form around your lumbar nerve roots. Starting to compress them and over time it just continues to grow and adhere to the nerves causing increasingly worse symptoms... But as I say, this is just a theory . But it does have clinical statistics to back it. And the worst part is revision surgery, potentially makes it worse because of the potential for even more scar tissue... I mean your a young person, so you definitely to the best of your ability. Want to find the right and best long term solution to your circumstances. Maybe start by calling or messaging this current Dr. whether nerve entrapment or adhesions from the surgery could be the cause of this? And see what he says... Best wishes going forward

I had 4-level (3, 4, 5, & S1) fusion 5 years ago for sciatica and it has been downhill ever since. I have lost some feeling in my legs & feet, have developed bladder/bowel control problems and the weakness in lower body is getting worse. I can no longer walk more than short distances without a shopping cart because of instability. I have lost some faith in modern medicine and feel I am not taken seriously. I’m 81 and other than the aforementioned issues & well controlled type 2 diabetes i feel I am still high functioning for my age. To anyone reading this please think twice before opting for surgery as I thought it would solve all my problems not double them! I hope no one is thinking, “Well what do you expect for an 81 yo woman?”

@suznk8
I feel your frustration! I am a 69 year old woman, 12 weeks out from a C5-C6 fusion and am quite upset that I believe I am worse than before surgery! I was diagnosed with spinal stenosis in 2020, took the non-surgical approach and much improved for the first few years, then my balance and gait, due to weak legs and lack of energy, took me to a neurosurgeon who recommended the Cervical Surgery.

I did not complain about pain but said I wanted to be able to walk more confidently so I could keep active and enjoy retirement. They insisted I had to have the cervical surgery due to if I were to fall I would likely be paralized or worse.

The surgery went very well, recovery easy enough, but it did not address my desire to walk better. The Physical Therapy perscribed focused on rebuilding my neck, shoulder and arm strength, which of course is a big positive. When I ask about the lack of strength in my legs, worsening balance and stamina, they indicate that the spinal stenosis in my thoracic region affects lower body issues but the surgery is more complicated. That is all they have shared at this point.

My father lived with SS until his death at 98. He had lumbar surgery in his 80s, and was able to walk without a cane until he was 90. In retrospect, I feel I lost my opportunity to live a little before I am bound to a wheelchair and diaper, and if the medical team heard me and were more direct with me that the surgery would not be helping me to walk better, I would have delayed it and spent more energy and time with PT and a personal trainer to improve my balance and ability to walk.

Oh well - hind sight.

Too late for me as I’m not willing to endure the post op again not to mention I’d need to hunt for a different medical team as I’m not very trusting now so will live with what I’m dealt. Inconvenient but not life threatening. Wishing you luck!

Agree. Best of everything you wish for as well.