1year 5 months post-op and still in pain

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Terrencey

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Hi Folks. This is my first post so none of you know me but I know you. For several months after my surgery (L5-S1 laminectomy and single level fusion with instrumentation Dec. 19, 2007) I came to this site daily, taking great comfort in the comfort that was being offered to others. I couldn't post myself as I was using my company's laptop and didn't want to abuse that generosity with personal issues. Anyway, my brief back bio goes like this. I was diagnosed with level 1 (or 2) spondy at L5, facet arthritis and radiculopathy. I did PT, a whole bunch of injections, radio frequency ablation, and finally, after 5 years went to see a surgeon who told me that I would never get better without the surgery and had a good chance (better than 90%)of being "virtually" pain-free (i.e. mild pain) after surgery. This is the bravest thing I've ever done. I was a surgical virgin and scared to death (though the thought of living the rest of my life in horrible pain was pretty darned scary in its own right). So, I had the surgery and I'm better but noone is happy with the results and noone is considering my surgery to be a success. I'm taking about 1/2 to 2/3 (maybe more) of the Dilaudid that I took a year ago. I'm being given the meRAB by the surgeon who tells me he still thinks I'm going to be okay. My body seems to be in disagreement with him. At the time of our first meeting, the surgeon told me that if I weren't better 1 year post -op, I probably wouldn't get better. Does any one have any experiences they could share with me in this regard--positive or negative. I'm coming to accept that my life might forever be about how it is now and I am somehow, incredibly coming to accept that. The pain is in both of my legs. No real pain in my back.
 
Welcome to this board!! I am glad you are here where you can get nice support and help from people who understand where are you coming from b/s all of us in same boat as well.

May I ask you where else do you have your pain? You mentioned that you don't have back pain but legs pain. AS you know that legs can hurt due to some nerve inflammation after surgery and it can last up to 2 years. The fact that your back doen't bother you i believe is a good sign.

I had 2 fusion surgeries (multi levels) and still in a lot of pain and a lot of nerve damages. My last surgery was 5 month ago and my first, failed surgery, was 2 years ago.
I still leave on Pain medication, PT, Tense unit, and some days are OK, some days are very bad and painful.
Please, don't loose your hope. This surgery is major one and it takes a long time to recover. Everybody heals on their own pace and it takes different times for different people.
Hope, positive outlook, great support of family and frienRAB is the key to get better.

I wish you all the best.
Take care... Moldova:angel:
 
I'm not exactly sure I'm replying where and how I'm supposed to be but, oh well......To answer some questions: I never really had any back pain. I did have a massive muscle spasm after going for a wide forehand without warming up but the truth of the matter is that I had had episodes of mild pain and tightness in my low back for a few years. Its noteworthy that this pain never was bad enough to make me go see a doctor. Rather, I noticed weakness in my legs, then nurabness and tingling, then more weakness. This was when I went to my doctor and said "I think something is wrong". The weakness was pretty pronounced. I found myself taking the elevator and dreading the stairs. The problem has always been with the nerve. The surgery made the nerve even angrier but it was nerve pain--that burning, searing stabbing, crying "ouch" outloud nerve pain that is my nemesis. The surgery didn't "fix" my back pain. The spondy --or brokern vertebra was pressing on the nerve and caused nerve damage (hence the pain in the legs and butt---funny (ha ha) my butt muscles were not receiving any messsages at all from my brain due to the nerve damage. Other, smaller muscles were kicking in to help me walk. These muscles, in turn, got angry with their workload and began to hurt themselves. Now, since the laminectormy took the pressure off of my L5 nerve, I have sensation in mu butt, specifically MY BUTT HURTS. It feels like knives being stabbed into my gluts. Thanks, Dr. Surgeon Man! I've tried EVERY NERVE DRUG in the PDR and have had serious side effects with all of them The Lyrica really really helps the pain but my feet are the size of hams and I gained 5# in one week. (I gained 30# in one year with Neurontin). The Cynbalta made my stomach sick. the Effexor made me anxious/panicky (as do most OPIOIRAB, by the way-- i KNOW eFFEXOR IS NOT AN OPIOID). I saw my surgeon today almost a year and a half past my surgery date. He, too, thinks I can get better its just as the more time that passes, the less likely my chances and the higher the pain level I will have to tolerate. Maybe the nerve was too severely damaged and it can't come back. Today, he gave me a DVD and some info about a neurostimulator. The thought of seeing another doctor or having another procedure makes me want to barf but............Through this all I'm working full time but have dropped all my fun activities, except, apparently, eating sweets. I'VE GAINED 50 POUNRAB. Yuk Ich. Yeach. Thanks goodness I wan't heavy when I started. I am depressed. (Not taking anything).
 
I'm a newbie to this site and am amazed at the similarities I'm reading in the experiences of others. I don't have a lot of insights into nerve meRAB but did try Neurontin briefly - I wasn't able to tolerate it. I just had a two level decompression - L3/4 & L4/5 on May 15. Had 2 glorious days without leg pain but it's back. Dr's office tells me this is normal since there's swelling and inflammation of the nerves but my worst fear is that I'm going through all this and will still end up with the leg pain. I can really relate to your saying you gave up your favorite things except the eating thing. I was a work out fanatic - did kick-boxing, step, running, etc. Now I can't even walk my dog and can only do stairs by pulling myself up by the railing. I've gained 25 lbs and have been feeding the depression with junk food. You sound like you have a great sense of humor which is really an inspiration to me. I have definitely not reached acceptance as yet and understand I may not know for a year if this worked. Dr felt I'd have a good outcome with the decompression and didn't need a fusion - not sure if I should still consider that if this doesn't work. He also mentioned the neurostimulator as a last resort and said he has patients who have had a very good result. Guess it's one day at a time for awhile -
 
I remeraber reading Shawley's posts after my surgery (when I was just a health boarRAB voyeure). Yes, I believe a neurostimulator and a spinal cord stimulator are the same thing. I don't really know why I'm being so thrown by this. I think I've run out of courage. I've been through so many procedures, medications and even the most brutal surgery and nothing has helped. Every morning when I wake up, I open my eyes and, in an instant, feel that pain and hope its a weekend so I don't have to go to work. Life seems to offer such little happiness when you're in constant pain. I know that I have to have this little pity party before I'll muster up the wherewithall to deal with this new circumstance. I think my surgeon giving me the brochure on the neurostimulator was an admission that my surgery is a failure and he' s not expecting that damaged nerve to ever be well. I also am not happy with the idea of having this device implanted by a pain managemnt doctor. I haven't been impressed with that particular specialty though I do believe that in a few years there will be some really good docs in that area. Right now, so many anesthesiologists decided they want to do something else and -boom presto-chango they are now PMs. Anyone on this board who has this device, was it implanted by a pain management doc or a surgeon or a physical medicine doctor? I'd appreciate your comments. I've read most of the "neurostimulator" posts and think I would wait until after summer to do it.
 
TP,
I think you had surgery 12/07? this makes only 5 month after surgery, not a year and 5 month... unless I missunderstood something?
The reason i remeraber your date becase yours were on 12/19/07, mine 12/20/07...

I wish I could help you with your pain, but i don't have the answers for myself either... I am so sorry you suffer so much.

The only thing I can repeat again is: it can take up to 2 years for nerves to heal. The good thing is that your back is not bothering you that much. Lets hope your nerve pain in your legs will get better.

Did you try Tense Unit? It helps me very well; my PM gave me prescription and Physical Therapy place ordered it for me.
I wish you all the best!!!:angel:
 
Moldova: You're right. My surgery was in 06. Time sure flies when you're having fun, right?
 
Well, I have had 3 back surgeries and the final one did most definitely solve my back issues - and I am 100% solidly fused. However, I have permanent nerve damage and that pain is no picnic. I go this Friday to discuss the spinal cord stimulator myself.

Have you had an EMG and Nerve conduction studies? I did in Noveraber, and was diagnosed with acute and chronic S1 nerve irritation/damage. So, I will never get better and there is no back surgery that can help.

Also like you, I tolerated NONE of the nerve medications at all. Neurosurgeon says SCS is my last option, only hope so to speak, of not living the rest of my life completely doped up. I will certainly try this and have positive feelings and thoughts regarding it.

Surgeries and procedures are scary, I agree. And after even just one failure, the average person would be hesitant to do anymore. I believe in multiple opinions and following your gut instinct. Even if a doc has all the credentials in the world, I wouldn't go with him/her if I wasn't at peace. I think this is where some of us spineys have gone wrong in the past.

In my case, my first 2 doctors (orthopedic surgeons) came so highly recommended that I ignored my wiggle nerve. One was the team doc for local major sports teams, for pete's sake.

I finally traveled 2 hours one way to find a doc that not only was highly recommended and commended, but that my gut said "Yes, this is the one" and I felt completely at peace.

Good luck with the SCS - hopefully we will both find relief with them!
 
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