Hi - I don't know if this is the right forum, but was wondering if anyone could help me.

I had 3 surgeries for L5-S1 and am doing much better. Daily nerve pain/sciatica is gone. I have been told I have permanent nerve damage.

However, if I go for walks, or spend any length of time on my feet, the outside bottom of my feet start hurting/tingling/prickly pain, feel hugely swollen, and I start limping as I respond to this unpleasant sensation.

If I don't walk much at all, I am fine.

Is this just an inflammation of the nerves? Is this why my doc wanted to put me on Lyrica or Neurontin last year - to calm the nerves? I took it for a while and I was in a walking coma - could not handle how I felt mentally.

Hubby is worried I may have additional nerve impingement, but based on what I experienced prior to the back surgeries, this doesn't feel like that at all.

My legs (all in the L5-S1 dermatone) are numb as well, and I can tell when I am shaving and such that I am not getting any feeling back. Affects my balance sometimes and I can tip easily, but I am managing.

Anyway, just want to put my hubby's fears to rest. Should I call my neurosurgeon?

Hi Iris,
Welcome to the neuropathy forum. We're glad you found us but sorry you had to look for us. There is an incredible amount of combined knowledge on this forum about the different neuropathies. Can you tell us a little more?

How long ago were your surgeries and were they close together? Have you told your neurologist about the new symptoms? Has he done any testing since your surgery to see if there are new impingements of the nerves? Also, what are your vitamin B12 levels like?

Lyrica and neurontin are both anti-seizure medications that are used to treat neuropathic pain among other things. They have to be started at low doses and be very slowly titrated upward to prevent unpleasant side effects like you describe. Unfortunately some people have the side effects anyway.

The symptoms you describe pretty well describe my neuropathy but everyone is different. I have small fiber sensory neuropathy caused from Sjogren's syndrome which is an autoimmune disease.

Give us a little more info and of course others will chime in here.
Billye

Thank you for your reply. My 3 surgeries were within 12 months, Dec. 2005, Mar. 2006 and Dec. 2006. All for L5-S1 - first one was laminectomy/discectomy, 2nd was a non-hardware fusion, and third one was rods, screws, posterior 360 fusion with bmp.

I have not told my neurologist yet and I do not know what my b-12 levels are. I have not had any testing done since the last surgery (other than the follow up xrays, flexion xrays etc. through April, 07) because I have been doing so much better and the severe pain is gone since the 3rd surgery.

I need to be walking more to get my stamina and strength built up, but every time I do, I get this numbing/tingling/prickly pain in my feet, they feel really swollen (although are not, just the sensation), and I end up limping. If I stay off my feet or don't walk much at all, I am fine(other than my numb feet and legs which I understood was part of the permanent nerve damage). (I do not have to work outside the home, so I am able to get away with this for now).

It seems there is another bit of information, but I can't recall it at the moment. I will repost when I remember it!

Thanks!

Oh, the other information is that when I walk, I tend to "drag" my right foot or just plop it down, if that makes sense. I don't properly walk, rolling heel to toe. I have to focus when I walk to make sure I do this properly. I assumed this was from it being numb?

Hi, if you didn't have feet problems, numbness etc before the surgery then i would definatley go back to the neurosurgeon, maybe a current MRI may help find the problem.
I had the same affect to Neurotin as you, like a walking zombie, but found Trammadol slow release very helpfull without giving me that zombie feeling.
good luck
Brian

HI Lovely Iris!
As Billye said, there's LOTS of great people here with LOTS of great info. I hope we all can help you in some way.
I'm So sorry you are having to go through all this. I think most of us thought after a surgery or test we'd be doing much better......then something else pops up! Hopefully your Neuro. will get things figured out for you before it gets worse. Good luck!!

Brian mentioned that if you did not have foot problems prior to the surgery than you need to definitely go back to the neuro and tell him of this symptoms along with the others. The foot dragging sounds like something called "foot-drop". I have this on my left side. It's from the nerves not working correctly. If your neuro has no answer or is reluctant to pursue this, perhaps you could get a referal to a neuro who specializes in Perpheral Neuropathy. It sounds as if you may have some issues with this.

Billye

--that, given your history, the first thing to look at is your lower spine area. there may be impingment of nerves from scar tissue and the like, and the fact that your symptoms do change significantly with position does seem to point to something biomechanical. It may be a problem with the spinal cord itself, or with the nerve roots in the cauda equina area.

The other thing to check, just to make sure, is the rest of the spine--problems in the cervical area, especially, can cause problems with the lower body as well as the upper (though it seems too many neurologists forget this).

Have you take a look at our spinal disorders forum?

http://neurotalk.psychcentral.com/forumdisplay.php?f=22

There's a lot of detailed expertise there about post-op symptoms/complications and such.

Hi Iris,

I have pn, AND I have a lousy spine, and have had two spine surgeries, with an L3/4/5 fusion.

I just had a talk with my neurologist, about some new neuro symptoms. (I have seen so many specialists in the past few weeks, that I wish I were a passport, so I could proud of each stamp I add!).

This was his take: LJ, he says, you could have Sjogren's, but there's really nothing to be gained from finding out. It's just a lousy name. You don't have MS. You do have neuropathy, and you know you have a good B12, and aren't celiac.

So, he says, we need to stay on top of your spine. If your neuropathy gets a bit worse, or a bit better, so be it. But if you've got some arthritis or disks pressing on nerves and damaging them near the cord, that's bad. So, he says, we need to keep LOOKING at your spine. We have to do regular MRIs, CTs, and, he says, I just have to figure out what I want to look at most just now. I need to think. He says.

So, my take on it, you could have neuropathy AND a bad spine, but in terms of the neuropathy---get the B12, get the celiac tests---they're easy---but make sure your spine doc keeps checking out your spine.

I'm beginning to really really like my doctors. I'm feeling bad, but they're not doing anything. I think that's good. I'll make a post on it.