LizaJane, I have very little pain. My thigh hurts (the old sciatic nerve pain) if I sit too long, and my legs get rubbery when I stand too long. My doctor suggested I walk a mile a day, and I pushed myself to 3 miles a day, but not all at once --I would do it in about 3 outings a day (I am a mail lady, and my route is a 10 mile walk a day--so I went from 10 miles a day, to nothing for a while). My back feels tight, but it usually does not hurt. I do not know if walking has helped. I have not been sent to PT. But, I also just had one level fused.
My sister had a cervical fusion a few years ago, and it took a while for all of her nerve pain to go away. Like phantom pain. The nerves take a while to realize they are not pinched anymore.

Hey, if you went back to work in 4 weeks, I give you a ton of credit. I think I was just beginning to put my own socks and shoes at that point!
Carolyn

Carolyn,

I was told that it could take a year to eighteen months before they know if I have "fused"....I just find it odd that I have not "begun" to fuse yet....I had a cervical fusion last August, 360 of C4-5, 5-6, 6-7....I woke up from that surgery and all presurgery pain was gone...The numbness, the pain, etc...They intubated me overnight after that surgery and after they pulled the tube out the first thing they asked was how did I feel and I felt great. I fused after the surgery in three months.

I went to my son's football game this afternoon...My feet were numb and I still have terrible sciatica in my legs. I experienced cramping in my legs and feet and I had to get up to walk it off...My hips hurt when walking...I just expected to feel better by this time and to be able to wean off the pain meds just a little...

I am going to start aqua therapy in hopes that will help with some of the pain, but it has been a difficult recovery.

Hi, I'm not sure this is the most sensible way to post now, but I told me story first on this thread, so it seemed reasonable to ask my questions and give my update here.

A month has passed since anyone last posted here, including me. So....

I think I may be having slow, I mean s.....l......o......w improvement but it's really really s.......l......o...........w. I take taxis a lot, and I think a month ago I was still lying on the backseat all the time; now I find I can sit upright in a cab a bit more, and some days feel pretty comfortable sitting in the cab. I still prefer to lie down most of the time, as the up and down movement over bumps, or stopping short just send ripples or stabs of pain up and down. But actually, it is a bit better.

So....I'm not a happy camper, really. Even with this bit of gain. Not enough.

I've not seen my OSS since a couple of months ago. He really isn't interested anymore, saying he can see no reason for my pain. Ha! I am not fused, but he doesn't seem to think that important. He likes the internal fixation and says everything looks fine.

I've been doing Feldenkrais sessions weekly, and truly this is helpful. I'd recommend this to anyone with chronic pain, or recovering from an injury. It's incredibly easy, very gentle, and the movements the therapist makes with my body do produce immediate results. I've bought a series of Feldenkrais CDs, which I listen to and do some exercises at home. They are good. But again, it doesn't seem like enough.

I went to my old physical therapist this week who does myofascial release PT. She worked deeply but comfortably into the long muscles of my back, determined to get me some more flexibility (I seem to be stuck rigidly upright and bending is just plain difficult). It helped. She is thinking that maybe she can get me results lasting a few days, which can be improved upon by seein her again, say twice a week. There's some insurance coverage for this.

I went to a neurochiropractor who is a well-known figure to the peripheral neuropathy board, where I've posted for years now. He had helped the husband of someone in my area (NY) tremendously. The man is a wonder with hands-on work, and he looked like he was gonig to cry when he saw me, after months and months of not seeing me. He said everything was in such spasm it was hard to know where to start, but arbitrarily, he picked my hip flexors, gluts, and then a bit of hte rotator cuff. It was painful massage but immediately gave me improved motion. He, too, said twice a week. (He's $170 and insurance pays zero for him). He's really smart, and he says he would have expected me to have healed much better, but a lot of tendons are tough like leather, or hard like rocks, and he doesn't know why.

I tried pilates but it tensed me more, and similar exercise. I am doing no real exercise other than walking on weekends.

I have the name of some acupuncturists, and everyone is suggesting that, so I plan on looking for someone my insurance company might reimburse for.

Basically, I'm very very tired. I feel depleted. It's 8 months since the surgery, and I'd expected to be better. Before I had the spinal cyst, I did yoga, and thought I would recover fine, being flexible.

Two rheumatologists have said I have spondyloarthropathy and enthesopathy. While I have no abnormal antibodies, I have always had some inflamed tendons somewhere in my body for the last 15 years or so. When one area gets better, another tendon hurts. Both have suggested methotrexate. I've refused it, because it seems dramatic and dangerous medication for a problem which could be handled more physiologically, with hands on work. I thought. I've not gone to a rheumatologist for a while, knowing that they want to put people who hurt on strong antiinflammatory meds or immune suppressors. Oh, I have a genetic marker for psoriasis and psoriatic arthritis, though I don't have psoriasis.

I'm going on too long here...

I saw my neurologist, who told the medical student in the room I have "failed back". He's giving me oxycodone, which I take at night, with Klonopin. He also gave me a lidocaine patch for my shouder, which has begun to act up a bit, but isn't really too bad.

So, what am I asking? Am I a "failed back"? Anybody know a good program for recovery at this point? Anyone have experience with acupuncture or know someone in NY who has a license for something recognized by health insurance companies?

I'm just tired all the time and depleted. I feel all used up.

I'm sorry to throw out so much and so poorly organized, but it's the only way just now. I'm poorly organized about having a "plan".

Help??

I am new to this board and would like to ask the question to all of you. I had a posterior Lumbar fusion of L3-5 in July 2006. I still feel butt pain and some numbness. Is it too soon to worry yet? I ask the Dr. and he says it can take more time. Any comments? Thanks

Roberta,

I am out from surgery seven months and still have numbness and pain, so to answer your question I would not worry yet. I have to tell you though that my PM doc's PA told me that the numbness I feel now in the lower back is permanent. I hope we are talking of the same kind of numbness. The skin feels numb to the touch on the outside.

LizaJane,

I must have missed your post here since I check every day, but did not see your recent update.

I am about the same, but have had medicine changes. I think you and I are very similar with our recuperation and I do not consider myself a failure or the surgery a failure. I am still holding onto the hope that I just need more time to heal and things will get better. Some people told me that it took them five years after a surgery to feel better.

I will update about what has happened since I last posted in September. I did go to see my OSS's partner in October. They did the usual fusion ex-rays, but she then told me that she cannot determine from the ex-ray if I am fusing because of arcing so they sent me for a CT Scan of the lumbar region. I went for the CT Scan, but that too shows too much arcing and they were not able to read it. They did do a 3D picture of the spine though which is neat to see. Anyway, the films were sent out to my surgeon and though the radiologist claims he could not read them because of arcing, my OSS had someone from his office call and said the pedicile screws are where they should be, but he wants me to come in for an appt. So I go to see him in two weeks. I do not know if like you Liza Jane he will simply state that the hardware is in place and what I have is what I am left with or if there is a problem. I "think" when I look at the 3D model of the spine it shows that I am not fused at any level. Since his partner told me the non-union is the cause for my pain I have to think that is the pain generator.

What I do not understand about all of this though is that I was told it would take a year to eighteen months to heal from this surgery and I might not realize any benefits until then, but now there seems to be a push to get me to feel better. I was reading another person's post and they mentioned that they were told that a laminectomy would help their leg pain, but only a fusion would help with back pain and leg pain...I think in all honesty the fusion has made my lower back pain much worse. I also stopped the Topamax this week to go onto the Neurontin. I actually weaned off of the Topamax and then went a few days without any meds for the nerve pain. The pain in the front of the leg that you originally wrote about ...pain from the top of the thigh to the knee when you sit is back and then all of the leg and foot problems are back.

I think it is uncanny that you said you have seen Rheumatoid docs and they have suggested spondyloarthropathy. I have seen three RA docs, two in Philadelphia and then one closer to home. The two in Philadelphia have diagnosed Fibromyalgia, but the second one said she is not ruling out Rheumatoid arthritis, and I am to go back to see her is six months. She was rather abrupt and rude, not much of a bedside manner, so I do not know if I will return to see her. Anyway, the doc at home has started me on hydroxychloroquine although my number for Rheumatoid arthritis is very low. He thought it was still a positive reading and number and thought we should treat with this drug. He also sent me for a large battery of blood tests. This all happened this week. He gave me a list of things to read about and websites for Rheumatoid arthritis, but also listed spondyloarthropathy. Other docs have thought that I might have this because the degeneration in my spine is extensive and throughout the entire spine. My pcp did do a blood test for it though and I did not have the genetic marker, so I think that test will come back negative as well for this doc. He also wanted me to read about the drug you mentioned, methotrexate. I like you think it seems too scary to try. I am not certain I want to stay on the drug now that I am taking if the tests do not come back positive. The drugs for RA seem more dangerous than the disease itself and can certainly lead to other problems.

I do not think you or I am a "failed" back surgery and it is too soon to give up on us. I know I am not ready to say this surgery has failed. I have a lot of healing to do and so do you. I do find it depressing though that I do not see much in the way of progress, but I keep thinking that maybe it is there in small bites and I do not notice it because I am looking at the big picture and not the small gains...so I think we should not jump to any conclusions about failure...I do not think you are ready to say your surgery has failed and that is the important thing...I think it is too soon for your surgeon to turn you loose also. Are you still wearing your bone stimulator? I am everyday...I am want this bone to fuse...

I think that you like me...were very active before this surgery, even with pain. I went to the gym three times a week before the surgery and just exercised through the pain...so as someone said to me...It is very difficult for someone like me that was very active to just have to take this recuperation period so slowly...I want to be well and now....I also know that I am not going to be pain free...That point has been driven home to me time and time again...It is why I find it so odd that my surgeon keeps asking me about the pain...He told me himself that I should not expect to be pain free...I do not...I just had hoped by this time to have a lot less pain than I do...so that is depressing...

Changes I have made though...I am going to start an Aqua program...and look for a Feldenkrais therapist and read up on it...You have sparked my interest in this program...I have made changes in meds...going from Topamax to Neurontin...starting the new RA medicine...and two new meds for the stomach and digestion system...I am going to try vitamins also that the RA doc has suggested...I am going to have surgery on my hand and shoulder in the new year...The right shoulder and right hand are too painful to deal with on top of this spine stuff, so I am going to get it out of the way..

So to make a long story even longer...No, I do not think you are a failed surgery. You like me have had a big fusion surgery. I think you should give yourself a year to eighteen months to recuperate and then if you are not feeling better, you might want to find a doc that deals with "failed" surgeries..I think too your surgeon should be doing more follow-up...I hope he wants to see you at nine months and then a year...I would insist that he see you...I think too that you went back to work too soon. I could never work with this surgery. I am exhausted everyday and still need to take naps...so I think for you to be back to work, you are doing okay kiddo!...

Gloria--I was on the plaquenil a number of years ago; I found it easy to take, and it totally alleviated my morning stiffness. I don't think it did more. If I had a positive antibody test for RA, as you do, I think I'd take the methotrexate more easily. Clearly, the disease you have is awful--you've had such degenerative disease and so many surgeries and so much pain--with a marker for autoimmune disease, I'd say, why not try it for, say, 3-6 months, and then decide?

LizaJane,

It is good to hear that you too took the plaquenil and it got rid of the morning stiffness. I think that might be why he prescribed that for me. Besides prescribing the drug, he also gave me a few exercises to do with the hands, wrists, and ankles. He is an older doc, but I like that. I think he is less likely to put me on some of the newer drugs with the terrible side effects. I think I would have to be in really terrible pain with a very high number for RA before considering those.

Just wanted to say too that I just started my Neurontin. I am so pill phobic that I have only taken it at night so far...I am afraid to take it during the day for fear I will get the brain fog, but I went shopping today and my legs and feet hurt so badly after about 30 minutes I thought I was going to cry. I came home and told my husband that I just do not think the surgery has helped me that much. I know it is nerve pain, but I am just hoping it is not permanent nerve damage and pain. I hope I did not wait too long for the surgery. Of course, in my case it was me trying to find the right doc and the right surgery.

I am going to stay on the plaquenil so long as I do not develop any terrible side effects...I wish they would find something that would work for all of our pain though, instead of having to take so many different meds for each thing.

Liza, I just wanted to add...I have had two sinus surgeries...My sinus surgeon at Penn insists that I use a salt water rinse in my nose twice daily....I have been using this stuff now for two years...and I have to say I think it has helped with the sinus infections. I was on a steady regimine of Levaquin and steroids for a period of three weeks and then off a week for about a year and half. Since the last surgery, I have been infection free with the help of this sinus rinse stuff....It is so easy to do too...You just use distilled water and the little packets and squirt it up your nose...

http://www.unimedprod.com/products.shtml

http://www.allergybegone.com/sinus-rinse-kit.html

don't forget--with plaquenil you need to go to an opthalmologist to get visual fields done every 3 -4 months or so. I don't remember exactly how often, but defintiely regularly.

I, too, do the sinus irrigation thing. I've had two sinus surgeries and been on intravenous antibiotics in the past. Now I've gone 8 months with no infections on a combination of a steroid nasal spray and antifungal nasal spray. Just set up the humidifier for the winter....I don't irrigate nearly as often as I should---just too cumbersome to add another routine to the routines.

Thanks for the info.. I maybe am a bit too anxious to feel better. I am very active so this is hard to just sit back and not do all the things I want to do. The pain is weird.. Can't tell if it muscle or nerve.. As far as the numbness, its probably permanent but I can handle it. It really isn't too bad. Just want to get rid of the other pain. Thanks for the reply.. also I see that some of you on here take neurotin. Does it help?

Roberta,

I have been taking Topamax for about a year....and am now switching to Neurontin. You will find that most docs want you to try either Neurontin or Lyrica. My PM doc wanted me to try Lyrica, but the insurance company would not allow the Lyrica...so I am now starting Neurontin. I am just hoping I do not have to take mega doses for it to work.. They do help with nerve pain and burning pain. I did not realize how much so until I stopped the Topamax. Topamax prevents the burning in the feet that I get. My feet feel like they are on fire. It also helps with the leg and foot pain, but find it does not get rid of all of the nerve pain. I would not take megadoses though.

It is best to just take it easy and recuperate fully before returning to an active schedule.