2Months Post-op L5/S1 Fusion Nerve Issues

[cls]

Hello,

On 2/16 I will be 2 months post-op an L5/S1 TLIF fusion and I have found that as the weeks wear on since the surgery I find more and more nerve issues cropping up. Prior to the surgery I was having a lot of weakness in my right leg and some left foot numbness issues all of which are still a problem today. I find it difficult to walk much and I can walk without a cane but not for long before my right leg just can't function normally. My NS said that my disc was entirely gone but that he did not see any nerve compression while performing the fusion so I am not sure what the culprit was/is. On top of the nerve issues prior to surgery now I am having a lot of burning and numbness down the back of my legs and feet which I did not have prior to surgery. Has anyone experienced this 2 months after fusion surgery? I guess I would have expected some nerve pain/issues right after surgery but not 2 months afterward. I have an appointment with the NS tomorrow and will go over this with him but I am wondering if this is "normal" and will resolve itself-- I don't feel hopeful at this point.

One other question I have is what kind of imaging will show nerve compression? I hope the answer is something other than a CT Myelogram. I am factor XI deficient and most ansthesiologists would never "poke" my spinal cord. Anyway I sure hope that there is some way to find out where the nerve problems are coming from. Does anyone have any suggestions?

BTW - L5/S1 was the only level where I had any DDD or bulging disc.

[Maria]

After my 2nd discectomy I had terrific burning pain that went bilat in buttocks to quads, to calves, thru legs to soles of feet... lasted quite a number of years but then again wasn't all that adequately managed back in the early 90's.

Since '98 I've been on Gabapentin (Neurontin) taking 1800mg/day and since 2001 I've been taking a small dose of Methadone daily which has totally quelled burning pain anywhere.

So I can't say that I have any idea what is causing your symptoms or what imaging needs to be done but drug wise if you've not already been recommended to try Lyrica, Topamax or Gabapentin there are some pharmaceutical choices to help with this type of pain if it's still there...

Please update us with how you're doing

[phylly]

I had an L4-S1 fusion 2 months ago. As I have become more active I have increased burning and nerve pain in my left leg similar to the pain I had before surgery in that leg. I am starting to suspect piriformis syndrome in that leg because I am positive that there is no nerve compression. I will not see my Dr. for another 3 weeks so I have to wait to ask. Let us know what your Dr. says, I would be very curious. I am hoping that my pain resolves with some stretching. Time will tell.
Phylly

[Justin]

cls,

I sent you a private message.

[Kathy]

I second Maria on the Lyrica suggestion. It has helped my nerve pain tremendously. I actually started it for a numb thumb issue and mild carpal tunnel syndrome in the same arm. The pain from this was definitely nerve pain as narcotics did not help it at all. I have since had my pm dr. double the normal dose in hopes that it would help with my back pain (never really have been able to tell a difference in the back with or without it; but continue to take it for my arm/numb thumb issues).

Please post when you find something out and keep us updated. You are only 2 months out from major surgery, so I wouldn't get to worried about it. Your nerves and muscles are still adjusting to the new changes in your spine. We are here to help you in any way we can.
Kathy

[Liz]

hi cls,

i'm sorry you are suffering. i'd suggest, if your NS did not the other day, that you have an EMG and nerve conduction study performed, see EMG's and Nerve Conduction Tests for general info. You basically have the crap shocked out of you but it's a useful diagnostic, esp if you can't have the myelogram. It should show your NS if you have any old or existing nerve compression and to what nerve and if consistent w/your symptoms. I recently had one performed which confirmed old L5 radiculopathy to 4 muscles in my right leg because i waited so long to have my op but the EMG showed no nerves were compressed now. i think EMGs are about 80% accurate and mine corresponded w/my symptoms.

since you didn't have compression pre-op perhaps your nerves are just inflamed now or could the fusion hardware be up against a nerve? i had a lot of bizarre nerve symptoms after my ADR op (and still do 1.5 yrs later but symptoms are less "global"); it's hard to explain nerve pain to people. i'm sorry but 2 months isn't long so don't despair yet... your body went through major trama.

some people have some luck w/ B-12 (methylcobalamin) for nerve regeneration if a nerve was damaged (i've taken it for 2 years) but the neurontin or lyrica would help more w/the nerve related inflammation pain.

i had a neurologist perform my EMG and they could also test for other diseases if they think appropriate or diagnose other types of pain.

stay positive and i hope your NS gave you some leads.

take care,
liz

[cls]

Maria, Phylly,Dr. J, Kathy and Liz,

Thanks so much for your replies. You all pretty much echoed what I was thinking -- I guess I have already been educated by you all from reading posts for the last 6 months! Since the post surgery nerve issues seem to be intermittent I am hoping that the nerves are just irritated from the procedure and stress from the healing process. There is a definite correlation between increased activity and nerve flare ups. Phylly, it sounds like you are experiencing the same thing Your surgery was far more invasive so I would guess you have some very ticked off nerves. Hang in there.

I spoke to my NS on Monday and he said he would send me for another MRI. I presume based on the "new" nerve issues and the increase in back pain although he did not say specifically. He was not impressed with my lack of walking. I told him that the leg weakness was keeping me from getting the exercise that I want and need - believe me I am sick and tired of looking at the same four walls. I live in the land of outdoor life and would do anything to get back to running, hiking, cycling. Anyway, I mentioned that after standing or walking for about 15 minutes my leg goes weak and I start compensating which places a lot of pressure on my knee so I end up NOT walking much. I overheard the NS translate this into "she is not walking" "she has only been to four PT appointments". Of course this is not the entire picture so I was mad, my pride was really hurt.

I went to PT yesterday and had a chat with my physical therapist and I told her that I wanted to see how things go over the next two weeks before having yet another MRI. My PT has had many discussions with me about NOT trying to get in a set amount of miles or a particular amount of time each day just walk and walk correctly. If it is only 10 minutes then it is only 10 minutes. So I am going to work on this and there are two other things that I am going to work on. No stretching and I will limit my sitting time to 20 minutes max. I took it upon myself to try and do some very basic hamstring and piriformis stretches and they set off the nerve pain right away. My PT said who told you to do this???? I guess I want to be back to my old self and my body is saying forget it!!! Last week I had a few appointments where I ended up sitting for more than an hour and I think that this brought on the back pain and certainly the increased nerve pain down the back of my thighs. So with the suggestion of my PT I am literally going to carry a timer around with me and when it goes off after 20 min I am done sitting. Sounds absurd in some ways but I WANT IMPROVEMENT and my LIFE BACK!

Thanks for the Lyrica suggestion. I am hoping that I will not need to go that route. My body does not seem to tolerate much. For now I am just going to have to suck it up. I asked my NS when I can have my beloved Advil and he said he would let me now but I could tell he would rather I wait. So in the interest of not screwing up this fusion I will wait. Next month I have my CAT scan maybe I will get lucky and I will be fused -- I know this is pretty optimistic.

If the next two weeks things don't improve then I will get the MRI and then (you are right Liz) the next step is the EMG.

I will keep you all posted and thanks for your thoughts and support.

[Nairek]

CLS,

I'm sorry that I haven't kept in touch with you about your recovery. I'm such a bad egg. I have just had a lot of crazy stuff going on in the personal life & haven't been keeping up on the messages.

I'm sorry that you are still having issues. I was hoping that your recovery would be going well.

Ugh, my laptop battery is about to crap out. I'll try to send you a PM this week in between my the craziness in my life.

Stay positive!

K

[cls]

Hi Karin,

Thanks for thinking of me - you're not a bad egg, I know you have a lot of things going on in your life. I am sorry that you too have some lingering spine/nerve issues. Things continue to go downhill for me. My doctor ordered an MRI and when I got to the imaging center I found out that it is supposed to be a "with and without contrast". Being the freak that I am, I said no to the contrast, I am scared to death of the gadolinium. With my luck I will wind up with NSF. But that was last Friday, yesterday I was driving to my son's school and the back of my legs and feet went numb. I have been having some intermittent nerve pain and numbness but nothing like this. This is like it was (actually worse) than before the surgery. So today I have my CAT scan and then I am supposed to bring both the MRI and CAT scan to my appointment with the NS tomorrow. I guess I have to pollute my body with the dye and get the contrast MRI done. I just can't understand what is going on. If I leave my NS tomorrow feeling this much in the dark I will HAVE to scour this country for another doc. I can't live without my legs or feet.

I hope you are ok- let me know.

[ImpOssibleOne]

Hey, I haven't been around much and I'm sorry to hear about your continuing issues.
My nerves are still acting up as well but, right or wrong, I'm doing my best to ignore them. They flare at the least little thing or the slightest increase in exercise but they always come back to baseline so I figure I'm not doing any real harm. Who knows? The walking is making me stronger, that's for sure, and everyone agrees I should keep at it despite the flares but no one really knows what they're doing so you have to just do what works for you.

Email me when you get a chance. Hope your MRI and CAT are helpful.

[phylly]

cis,
My Dr. was very concerned about my continued leg, buttock, and back pain and rushed me in for an MRI of pelvis and hips. We already had the lumbar and the surgery was an all clear. He spoke with another Dr. in the Practice and today I had an EMG which showed my piriformis muscle to be crackling quite loudly as soon as the needle went in, while the other areas were very quiet. He gave my an injection of cortisone and long and short acting lidocaine. I think that the buttock pain calmed down until the lidocaine wore off and then it returned. I would be happy to know if I do have a piriformis issue because there are so many things I can do for it including Botox shots. I have always suspected it could be that along with my back issues. I will have to wait and see if the cortisone kicks in and helps in a few days.

Don't be afraid of the EMG, it is very helpful diagnostically and I would do again if needed. At least for me it was helpful to find the irritated muscles. Let us know what happens, it sounds like you are having a rough patch and need to figure out what is happening. BTW I also take quite a bit of nuerontin and muscle relaxer's which help a great deal.
Phylly

[runner]

Glad you got things looked at, Phylly.
BTW, be careful about Botox, there are some things coming out recently about how the toxin can travel nerves and such. Don't quote me but there is some research about Botox that is not good.
I hate the EMG, but I have a feeling they may recommend one. We'll see.

Runner

[phylly]

That is good to know Kim, where can I look that up? Phylly

[runner]

phylly,

I was just trying to look it up, did not find what I was looking for, but did find interesting LA Times article.
I saw it on the news a little while back. They had found that botox injected into the forehead will not necessarily stay there and will migrate away from the site and travel along the nerve paths. Got a sinus infection or otherwise would located the info. I feel really uck.

K

[guymontag]

I hope you feel better soon. But I just want to add. Don't do any weird exercises even if you are having a good day. I was about 8 months post op microdisectomy and did 10 minutes on an elliptical trainer. ( i had a lot of nerve trouble post op which was much worse than pre op) My nerves went to hell and now 2 months later they are still trying to get better.

Slow and steady. Find what works and do it gradually. Neurontin for me has worked well. It's taken the edge off the burning nerve pain when it really flares up and I just have to deal with a bit brain fog now and again.

[cls]

Thanks everyone for your input.

Guymontag you are absolutely right about the elliptical trainer, my PT said they are no-nos for awhile. She said this on my first appointment which was 3 weeks post op and I forgot why she said not to use it but it was definitely off limits. I agree with you about over doing anything - it's hard to define overdue after surgery because it seems like we all have our own thresholds. Phylly, I will do an EMG in 6 to 8 months if I my right leg stops improving but the good news is that I am regaining strength in this leg!!!! The new concern are the flare ups in my left leg and the new LBP. I saw my NS yesterday and he said that my MRI did not show any nerve compression and my CAT scan revealed that I am fusing. ALL GOOD NEWS! (I read on the MRI report that there is fluid by my SI and around the "disc" space - my NS did not think this was causing the problems but I wonder if it is a contributing factor). He did not have an explanation for the new nerve issues but thinks that I have some inflammation hypersensitivity. As far as the LBP I pointed to the area and he said that it could be my SI joint. I asked if it could be the hardware and he said that it also could be causing the pain. Here are some of the options that he gave me. Get a hardware block, SI injection, see a rheumatologist, see a neurologist. He certainly did not brush me off but I think he has done what he can for me at this point. I do think that he is right about the inflammation. Now that I am cleared to take NSAIDs I came home after my appointment at 5:30pm and inhaled 3 Advil. Usually by this time of day I am hurting and absolutely need to lay down but I had to go my son's school for his presentation and sit through 90 kids presenting their "Night of Notables". I actually made it through two hours and could actually walk out of the place when it was over. Thank God for NSAIDs!!

Phylly- hang in there and let me know if you make any progress with the piriformis issues. Hopefully the cortisone kicks in!

ImpossibleOne- Good to hear from you and even better that you "have not been around" much, to me it means that you are on the mend. I'll email you later.

[Nairek]

CLS,

You may notice that as times goes on, you are able to sit a little longer & walk a little further. At 1 month out from my fusion I was still in pain & had to lay down a lot throughout the day. At 2 months out from my fusion, I was in Florida climbing in & out of the car looking at houses. We must have looked at 35 houses in 2 1/2 days. I was amazed that I was able to get out of bed the next day & walk! At 3 months out, I was able to sit for long periods of time & not be in much pain.

I have noticed though that over the last week, I have been having weird nerve like issues in the right buttock & leg again. I'm wondering if it's from pulling my 1 leg up onto my other knee to put my socks on. My leg muscles are so tight it's not even funny. My OS cleared me to go to P/T 3 weeks ago but I told him that I have a treadmill & stationary bike @ home. I have been bad though & haven't been doing either. I've just been so beat after work that I crash on the couch & fall asleep. He told me that I could do the elliptical as well now. In theory, that is suppose to be better on the spine.

I know that I have an appointment with my pain mgmt. doc coming up. I'll have to mention the weird leg thing going on now. I'm still dealing with tenderness in my abdomen at the incision site. I can't believe that I am still dealing with that 3 1/2 months out from surgery.

I hope that you are feeling better. I will be moving at the end of June, so things are getting nuttier than usual around here. I'll try to keep in touch with you to see how you're doing.

Karin

[cls]

Karin,
I don't know how you get through a whole day of work. I simply cannot sit for more than an hour without pain. Next week I will be 3 months post-op and it seems like I am about a month behind everyone else who has had L5/S1 fusions. My pain is no where near my incision it is lower back and bum. I think I have a big problem with inflammation as my lower back muscles are tender to the touch. I think I will just have to wait this out and continue with Advil, icing and PT. I am so sorry about your incision site pain. I know what that is like with two previous surgeries. It took me a whole year before those nerves calmed down/regenerated. I sure hope this will not be the case for you. I know it is unpleasant but my previous PT said to gently massage this area to keep the scar tissue from forming plus it gets your nerves used to touch and then your jeans, etc. will not bother you as much. When is your big move day? You must be excited to leave the cold NE? If you can't get a workout in at home then at least go for a walk after work. As tired as you must be it will reinvigorate you

[Nairek]

CLS,

I won't lie, some days are better than others. It has been very rainy in NY for the past 2 weeks. I don't usually do well when it rains since the surgery. Weird thing was that I was hurting this morning & the sun was out. I guess there's no rhyme or reason sometimes.

I'm sorry to hear that you are still dealing with so much pain & discomfort. You mention how your lower back muscles are tender to the touch. I STILL have that problem. I've had that for well over 10 years now. As time has passed it has gotten progressively worse. I wish I knew the cause of this. I had prayed that the surgery would end it & am sad that it hasn't. Unfortunately OTC pain relievers don't work for me anymore. I've built up a tolerance due to 20 years of migraines

I'll try massaging the incision site to see if this helps the nerves. I don't think it would hurt to see if it helps ease my pain at this point.

We are looking to move at the end of June. We are pretty excited & I am of course nervous about moving away from my doctors so soon after surgery. I have to see if I can get referrals to doctors in SW Florida. The interesting part will be seeing who will accept NYS Worker's Comp as payment.

It may seem that you are not healing as quickly as you would like. I know that you know this, each person heals at a different rate. Some faster than others. I think a lot of it depends on how bad things were before the surgery. If I recall correctly, you had more severe issues than I did. This may be why you are recovering more slowly.

I've been told that it takes time to heal. I'm impatient. I want results now, not later LOL. It will all work out. If it means that it will take a little longer, then so be it. Just hang in there. We'll get thru the tough times!

[Michelle Maree]

YES!!!! The elliptical trainer had a lot to do with my flare up that never ended. I guess my disc or facets werent healthy enough to handle the force or something. But i will not use another one as long as I live......God i miss the Gym though

[cls]

In just the last two weeks I have noticed some very nice improvements in my nerve pain and leg weakness. My right leg has significantly improved and I am now cane free! My activity level has increased dramatically but along with this I still get episodes of numbness and and nerve pain. The nerve pain and numbness comes on at the end of the day or an hour after a long walk or after sitting or standing for too long. The first few hours of each day are generally pain free and without nerve flare ups. I'm hoping that as I progress through the healing process, I will have fewer episodes of nerve issues.

[dshobbies]

CLS,

You have every reason to believe your nerve pain will just get better and better. What did your doctor say?

BTW, B vitamins, esp B12 are beneficial with nerve issues.

My fingers are crossed, Dale

[Eastex]

It seems we are going through the same nerve issues! I started a new thread about this issue before I read this. I hope everything is steadily getting better for you.