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Back Problems Message Board

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Good morning everyone,
Well, it's been 15 months almost since my 360 L5/S1 surgery. The good part is, I'm fused and walking. The tough part is, the fusion did not relieve my pain, or completely resolve my foot drop. Mentally, I am okay with this. I am happy my OSS saved my ability to walk, and that I've had such a dedicated team of specialists working with me over the years.
I am able to do some normal activities, but my abilities have been declining - luckily I have family the next town over who likes to spend time with my 4 year old and I - I can't physically keep up with him; so we bring my sister with us to the playground, often. They both love it, though at times it makes me sad I can't participate like I want to. I miss hikes, and oh, the gardening. I'm not trying to turn this into a pity party.
I had an injection about two weeks ago, which has aggravated the situation even more, so now I'm on prednisone.
I saw my PM yesterday who suggested another injection (no thanks, I've now had 3 which have left me worse off then before) or a spinal cord stimulator. Tough to wrap my head around the fact that that is being suggested already - but I'm considering it. He recommends I look into the paddle style. I'll have to go into the city, to one of our large hospitals to have it done. That is comforting.
Does anyone have one? Would you care to share your story with me? Any and all outcomes are appreciated. I've browsed through the different suppliers websites, however I would assume they are pretty one sided. I'd like to hear real like experiences. Thank you all for being here. Hope you have a low pain day.
Good morning, In 2013. I had my fifth back surgery I had my hardware replaced and extended from s1 to t9 the doctor put in a stimulator
.I must say that I hated it for the first two months but now I can't think of how I would feel without it! It doesn't cover my back but it does help my butt and leg pain. Good luck I hope this helps .allie
You write your "abilities have been declining." Does this mean that has happened since the surgery? Please describe in more detail.

Was there a time after the surgery where the pain was less and now the pain is new or different?

I will await your answers before commenting further.

I would like to see statistics on whether the implantation of neurotransmitters has gone up along with the increase in doctors who decide to specialize in pain management. Ten years ago they were just starting to be more common, but we're still considered "the LAST resort," after everything else was tried and had failed.

Now I find people on this board and others who are recommended trying one very early in their journey. Increasingly, they are recommended to patients casually and with little education about the product and procedure involved in implanting it into the spine.

Perhaps due to my own personal history, it just makes no sense to me that one would opt for a lifetime of pain management that may or may not come along with a boatload of issues, instead of exploring every available option to resolve the issue.

In your case, have you explored options pertaining to your surgery? Do you know why you are still in pain and have muscle weakness? Do you know if the bone fusion is solid and complete? Have you consulted with a different spine surgeon to see if there might be options your surgeon has not considered?

These are just a few thoughts to consider as you examine your options.
I have had continued pain since surgery. Same unrelenting back pain and continued nerve pain running from lumbar to toes. I thought it was getting better, just a bit, but took a fall in January and it magnified my pain levels. I went through four months of PT which assisted with gaining some strength back, but no pain relief.

I had an injection last month to try to alleviate some of the pain, and it aggravated it moreso. Now the dr. Wants to do a caudal (sp?) injection. If that fails, I'm off for a consult with a surgeon for the SCS.

The surgeon did a CT scan in August (5 months post op,) and I'm fully fused. I had an MRI with contrast in February that showed everything where it should be. I've been told it's permanent nerve damage, and called central pain syndrome.

I feel like a Guinea pig. I have had 3 injections which have done nothing for pain relief, have only aggrevated the situation further. My age is often mentioned when discussing pain with doctors (37) and how I'm too young to be on pain meds.

I had a second opinion with a neurosurgeon who viewed my CT scan and told me he sees some minor foraminal stenosis on the left, but nothing on the right. (The right being the problem side). I've sent my imaging away for a third opinion. The surgeon who performed the surgery said "he did his job."

It's frustrating to say the least. I'm completely reliant on others to help with my 3 year old. We were at a park in the city the other day, and he took off. My worst nightmare came true. I couldn't catch him- my leg locked and I fell. He stopped, and came back... But as far as abilities, that's the one I fear I've lost. I can manage at home with him, but I'm terrified to bring him out some place without a second adult around. The guilt of what kind of childhood is he going to have is pushing me towards the SCS.

The downsides of the SCS from what I've read: another surgery, no guarantees it will work. I had a terrible experience with a TENS unit, felt like I was being electrocuted on the problem nerve, so I'm hesitant to even consider it.

I apologize for the length. Thank you for your replies.
I've been thinking for days how to respond. I don't want to discourage you from exploring a neurostimulator, but I really wonder if there aren't other options.

We tend to take the MRI as irrefutable proof that there is solid fusion and therefore our problems should be resolved, but it doesn't always work that way. Sometimes the level that was operated on turns out not to be the pain generator, or was only one pain generator.

Another thing I discovered is that spine surgeons do not like to consider other possibilities once they have reached a diagnosis. When I think back to all the spine surgeons I met with, they formed almost an immediate decision as to what was causing my symptoms of sciatic pain and what to do about it. When I had a fusion surgery at L4-5, healed quickly and completely and had a complete fusion but still had every one of the same symptoms and had the same amount of pain, I was told that maybe I needed to accept that this was as good as it was going to get.

I was told my MRI was clear, nothing was compressed, there was nothing more to be done surgically and that I should try a spinal cord stimulator. And so my search for answers began! Three years and numerous and various specialists later, I had more surgery that added on to my L4-5 fusion. When they got in there, they discovered that the facet joints at L3-4 had worn away to little nubs, allowing so much movement at that segment that the joints had almost completely worn away...and no one had seen this on MRI. Because my symptoms screamed a problem with L5, no one explored the possibility that something else was causing them. I eventually had the surgery. I was warned that my nerves had been compressed for so long that I shouldn't expect much from the surgery, but I was lucky.

When I think that if I had just accepted my first surgeon's insistence that I "try" a spinal cord stimulator, I could have spent a lifetime in pain management....with the very real possibility that it would not have worked...or would have caused even more problems...and in the meantime, the nerves would have continued to be severely compressed. I truly believe that I would be in a wheelchair now, unable to walk more than a couple steps.

At the very least, before trying a SCS you should have a diagnostic nerve block to determine if your symptoms are coming from the L5-S1 segment. If I were in your shoes, I would see an orthopedic spine surgeon for an opinion. I found the best way to do this is to approach the doctor as a new not suggesting something was wrong with your surgery but simply that your symptoms have not been resolved, and you want a new pair of eyes to evaluate the situation. Some surgeons specialize in revision surgeries. If you could find one, it would be a good place to start.

Personally I think you are too young to stop searching for solutions and to resort to a SCS...I would save it as a "last resort."
Teteri66, thank you again for the thoughtful response. I had a consult with a radiologist this weekend who spent an hour and a half going over my symptoms, surgery and films. He was perplexed that the surgeon didn't include the level above in my fusion (L4/L5); and said that most commonly foot drop occurs due to compression at L4/L5, not level I had fused.
He told me he thought there was some sort of bone (or something) compressing the L4 nerve root as shown on the CT scan, and it appears the pedicle screw is touching a nerve root. When he compared the right versus the left nerve root, he saw inflammation. The right is substantially swollen in comparison to the left.
So with this information and your suggestions too, I'm hoping to take this info into the city and see a third surgeon. I'm praying it does not mean another fusion. Though, if it's something that will give me back my life, I can suffer through a few rough months.
This radiologist also suggested a diagnostic nerve root block for the same reasons. I refuse to allow a stimulator to be placed in my spine at 37. I also refuse to accept "this is as good as it gets." Where's Dr. House when we need him ?
I'm so glad you found someone who could spend that much time with you. You are very lucky to have someone observe what is amiss with your surgery!

It may be that the material that was used to start the bone graft over grew the L5-S1 disc space and has attached to the nerve...or it could be something else, too.

A friend of mine had surgery in the greater Detroit area by a well-known doctor. 18 months later her symptoms remained and she was in more pain than prior to surgery. Her surgeon kept assuring her everything was fine...she went back again after a year and was told the same thing...healing beautifully, MRI fine, fusion complete AND the pain is all in your head.

I kept encouraging her to get another opinion as I was going through my search for answers at the same time...but was a bit ahead of her. Every doctor she went to, when they saw her reports and saw who did her surgery, reported everything looked great. She went to the U of Michigan and was told the same thing. She must have seen six surgeons and it was the same soon as they found out the name of her surgeon. She was ready to quit but I kept pushing her. Finally she found a guy who only does or mainly does revisions. He did the usual imaging and also a bone scan and found that she was not fused on one side, and one of the screws had pierced a nerve, then had healed around the screw. So every time she moved, the nerve moved with the screw and she was in agony. Needless to say, she had more surgery.

If your fusion is complete and the right level was operated on, you may not need a fusion, but you would need some surgery to clean up what's going on and maybe remove the hardware. Depending on what is done, that isn't a big deal. My second surgery was much easier than the first fusion, even though more was done.

I am so happy you are going to get some answers. Don't give up if the first surgeon doesn't want to do anything!

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