Hey guys I just returned from Doctor and I am very disappointed and well frankly a bit scared.

On June 28th I have a PLIF on the L5-S1 Region with screws. Doc took some of my own hip bone for the procedure. I later found out that part of my nerve was still incased in a ball in scar tissue and that he could not free it up but we were hoping it wouldn't give me much of a problem. He put me on Topamax which seemed to help and I continued my excersize program and my pain managment regiment.

Well I was doing relatively good for the last few months still having some pain, taking meds but much much better then before surgery. I was walking every night etc. Then about 2 weeks ago my back started to hurt again really bad. So much where I was ending up back in bed. Then during the night I would wake up to my foot just buring in pain and intense pins and needles the worse I have experienced yet. It's awful.

Well I had follow up with doctor today and he thinks there is defintely some nerve damage and/or some injury. I am back on all restrictions. He doesn't want me to do anything for the time being until I get a EMG test. This test doesn't sound like too much fun. He said not too loose heart but he doesn't sound positive either. I asked him if I was stuck like this and he honestly didn't know.

I am only 30 years old and I have a severe case of DDD herniations etc.. my back seems to be degenatating at a rapid pace what can I do to slow this down. I have tried every conservative/herbal etc remedy on the planet and now I've gone down the medical path and that isn't helping it's like a marigo round that I can't get off. I'm young I have a small son. I'm trying desparetly to regain my life back. I have gained 50lbs over the last 2 years I'm trying to get this off (kinda hard when you can't exercise) but I will do it!!!!!!!

Please.....advice something something? 3 back surgeries, umteeen tests and counting....uggggh I can't take no more.....

Galpster:

I am a year and half post fusion (L4/L5) and I have had similar issues. Like you I have a ball of tissue mass that seems to be causing nerve related issues. However, my Doctor has treated as basically NOTHING to worry about and that it couldn't be causing my problems. His only suggestion was going in and removing the instrumentation (because he says my spine WOULD now be stable without the instrumentation). But, to be honest I am nervous about having it done. He said he could remove the tissue mass while he is removing the instrumention. I have yet to hear if the procedure is even authorized and am so frustrated with the constant pain. Prior to my fusion I had an EMG (which was NO picnic, but NOT so bad either, it did show nerve compression). But, I haven't had one since. I kind of feel like no one is taking me seriously and like he doesn't even KNOW for sure if that will address the pain issues and nerve related issues in my left leg. I know how you feel because I was doing SO well and walking everyday (same as you). Now, it is difficult to walk even 2 or 3 days a week! Since our cases our SO similar it would be nice if we could keep each other posted. I will keep you all updated on the board and if you do the same I would appreciate it. I feel like you are the first individual I have seen with a similar case to my own!! You are in my thoughts. :wave:

-Jo :angel:

Gapster,

What type of doc are you seeing for your back? Are they general ortho surgeon, general neuro surgeon or truly spine specialist? Frankly, I wouldn't expect a spine specialist to have left the nerve encased. BTW, are you asking your surgeon to use the anti-scarring gel when they do surgery? That will help prevent you from developing additional scar tissue problems.

Have you considered seeing several other spine specialists to get additional opinions? Even if you like your doc, we have to realize that every individual (doc) has a different level of expertise and when one doc admits that they have done all they can, there may be someone else out there with the ability to help us. Don't give up hope, and check other doctors out to give yourself every chance at the best recovery possible. As you may have seen me post in the past, even though I think I have the most fantastic doc around, I still believe in getting other opinions so that I know I have done my best to review all my options.

None of us want to go through more surgeries, and for sure I can tell you that I was one who was terrified of each additional surgery. But, even though I've had to endure 8 spine surgeries, as I am walking and living life without severe pain. I am glad I continued my search for the right spine doc and continue my research so I could ask about all the options. I'm now 10 months post-op the 10 level fusion from T-10 through S-3. Still making adjustments on certain movements, but never thought I'd again be able to help someone pack for a move and help them paint rooms and not suffer for the work. Don't give up, because if this old lady can bounce back, you know there is hope for you.

Know you have lots of support on the board and hope you will keep us posted on how you are doing and what you find out.

He was a spine specialist/surgeon he came very highly recommended. That is all he does is work on spines. I was shocked when he told me he didn't get the nerve completly untangled. He said it was wrapped in a ball with the scar tissue he said my nerve was tangled with a ball of scar tissue (kind of what happens when your jewelry gets tangled together) it seemed plausible to me.

I also have a nerve specialist as well on top of this. I also just got referred to another back specialist so I am still going to different doctors trying to get some answers I'm so sick of all this - it's so darn frustrating. But I will not let my back beat me. I refuse to let it win. I have let it win for far too long.

Why did my message get deleted I removed my email address hmmmm....

Wow, someone going through the same thing as I am. I was doing so well after my plif, last year. I was walking 3 miles daily and lost 20 lbs. Then things started to go down hill and the pins/needles are now constantly from top of legs to top of feet and very uncomfortable. (Not to mention the sharp shooting sciatica pain). Both my spine specialist and nerve specialist say I need to go back and re-fuse and change out the instuments. W/C has denied it, though. I too, have asked my Drs. if I am going to have to live the rest of my life like this. It is so frustrating. My fusion never did take and the hardware was only made to help support the fusion, so there is the possibility that the screws can break. One of the screws is already loose. So now, until we can get coverage, I am also back to no bending, twisting or lifting.

I will keep you both, galpster and fiona, in my prayers. I am also interested to keep reading to see if anyone else is in this situation and what they are doing for the nerve pain, while waiting for their healing. :)

Hugs and prayers,

Lorie :angel:

I had my second PLIF 5 months ago, and like a lot of us I have nerve issues too. My surgeon sent me to a pain management doc due to my foot pain and leg weakness. I have been to this P.M. doc many times over the last 2 years and he is certain my pain is coming from the L5- S1 nerve root. My surgeon thinks its more muscle related.(swelling of the bursa sac) So now my PM doc is going to inject both areas a week apart under x-ray guidence.I sere hope this works. After going through 3 spinal surgeries, I have learned that surgeons know SURGERY and Pain Management doctors know PAIN. If you guys continue to have problems, I would suggest a P.M. doc. What do you have to lose. Good luck.

I agree with what quietcook said.

Perhaps the best thing for you is pain management; but first, get a couple more opinions from other specialists and please! Don't give up because there is always something new being found in the way of meds or procedures. Once you have gotten a couple more opinions, if they all agree that not much more can be done, then pain management (board certified pain management...not a dr. who hasn't been trained for this) may be able to bring about some good relief.

I know how bad the pain can get. I've dealt with it for 20 years now and after my last fusion the pain just got worse and worse as did the problems in my back. Just when I had reached a point where I was ready to throw in the towel, I switched to a pm and have had wonderful results.

Good luck to you.

Carol

Thanks to you all for your advice!!