recovery from surgery
 

I'm not sure how many folk from the old board are back here, so I don't know if there are people reading here with this issue...the old board had been quite helpful.

I had a laminectomy and fusion of L3,4,5 in February, because of a spinal synovial cyst. I still have pain.

I was definitely improving until around May, when I developed new pain in my butt, and then radiating down the front of my thigh. It gradually got worse. There's also a "gripping" sort of back pain, and a "catching" when I make a sudden movement.

I had a CT and MRI done which show that everything is healing according to plan. There is no fusion yet, but the bone is forming. Apparently, it's okay to not see fusion at this point. The instruments are all in place and holding me nicely.

My surgeon, seeing there's nothing surgical, is not terribly interested in what to do now. My neurologist says my symptoms are almost all L5, but there's nothing obvious going on there.

He put me on a medrol dosepak to see if that helped, and it did. I ended up on a second dosepak a week later, because my sinuses acted up and my sinus guy wanted me to take them again. (this is complicated--but my adrenals aren't working because of steroids).

I have found physical therapy not useful. I tried Pilates, but ended up with more pain. I found a Feldenkrais practitioner who has been very very helpful. She's helping me learn to move in ways which do not cause pain, and sees her work as re-patterning. It does work.

But I'm still in more pain than I'd want. I'd like to know what people's experience is with healing from this surgery. Is this within the range of expectable? What did you do to help?

That moving without pain has been unintentionally self learned by me. I know I look "funny" getting up from sitting, getting in and out of a car etc. I autmatically go into "very apprehensive" mode say getting in and out of my truck and especially someone else's car that is low to the ground. I use my arms and shoulders a bunch to help me up and down. I walk with purpose and direction all while thinking how the whole skeleton is moving. Never planned on any of this just a survival thing I guess.

So much good luck to you on recovery and improvement!
jb

[QUOTE=ejbpesca;3523]That moving without pain has been unintentionally self learned by me. I know I look "funny" getting up from sitting, getting in and out of a car etc. I autmatically go into "very apprehensive" mode say getting in and out of my truck and especially someone else's car that is low to the ground. I use my arms and shoulders a bunch to help me up and down. I walk with purpose and direction all while thinking how the whole skeleton is moving. Never planned on any of this just a survival thing I guess.

I guess this means the pain remained?

Liza, do you think you may have changed your gait, or the way you sit, stand, or walk, using muscles and parts of your body differently, that may cause pain in these areas? Also, it is my understanding, that nerve roots remember pain, and it can take quite a while for them to realize they are not compressed any more. Kind of like phantom pain, where an amputee feels pain in the lost limb.
I hope you feel better!
Carolyn

It feels like all the muscles of my back no longer attach where they were accustomed to attaching, and they just don't know what to do. So I might bend from the hips, but the back muscles get involved and cramp up. Or I twist a bit from the waist, and the hip muscles pull. But when I say pull, I mean Pull, suddenly, just pull.

And also, there's this pain down the front of the thigh to the knee. It went away with steroids, but is coming back.

Yes Liza, pain is evidently with me for life. I won't list off my spinal ailments but they add up to hurt everyday in some way or another. I am 54 and just don't think I'll ever be out of pain. I always have to be careful and limit activity to such short time spans. Kinda pathetic but I could have been (should have been) a quad...so I'll actually lucky.

Feldenkrais
 

For others who are still in pain after surgery. The thing which has helped me most--more than physical therapy, pilates, and more than pain meds, is Feldenkrais therapy. I am improving--I don't want my post to make it look like I am not--and all the improvement is attributable to this treatment. There's a feldenkrais website explaining something about what these folk do, but mainly, it is a muscle re-integration treatment.

They say, or at least my practitioner says, that it's possible to teach the brain patterns of movements based on the reflexive way we move as children, and that teaching the brain these movements reminds it it does NOT have to use other muscles while doing tasks.

For isntance, my back was all gripped when I went into treatment today. The practitioner found that my head was slightly tipped to the left, making my eyes look more right to keep straight ahead. This was what she noticed. I noticed it once she asked me to attend to my head. A session spent with me lying on the table and her making very very gentle movements of my body from side to side, while I sometimes moved my eyes as if I were turning, and sometimes the opposite was the extent of what she did.

When I got off the table, I was straightened out again. But besides that, I had more rotation to the left, which had been limited, and the gripping was gone. She then had me focus on noticing things about my body while it was sitting and walking painlessly after the treatment. Where was my chest in relation to my pelvis? Where was my weight when I changed where I was looking. It was obvious then that I could self-correct. If my back is hurting, check where my shoulders or head are, and see if I can make adjustments which allow me to sit with less effort.

This process is beginning to really make sense.

Unlike physical therapy and pilates which focussed on stengthening the core muscles, this work is focussed on getting those muscles to STOP working when they are not needed. And helping the body align so it needs to use fewer muscles to do any particular job.

I highly recommend this as part of a package of pain-treatment for back pain, including post surgical.


LizaJane

Hi Liza Jane
 

Liza Jane, I do remember you from the old boards of BT.I am one who adivsed you to seek out a surgeon for I was sure you needed surgery. My answer now is to say you may always have some pain. I know I do.

I have just had two more fusions, making a total of seven. I was just full of scare tissue that was covering my nerves also. What a mess! I also had to have spinal decompression. I had surgery Sept. 5 and my pain is very bad in my groin, front thighs and down to my knees. I did let my surgeon know that was the reason I had surgery in the first place. I had to bad spells while still in the hospital They like to never got the pain under control. My pain level was a 10 on the scale.

My surgeon now is sending me to a Dr for Femerol Hernia. I don't know if I have this or not, but something it wrong. I feel when pain level stays high, that is your body telling you to seek help.

It sounds like you know a lot about the problems you have, and that is key to learning all you can. Be careful with the pain tho. It sounds like you are experiencing what I am.

Take care and do keep a hold on the pain. Keep in touch. I'll let you know what they say to me after this Monday.
Billie

sad
 

i realize that everyone who has had spinal surgery and is still on the board is likely a bad outcome, and that there are people out there with good outcomes.
But it's sad and discouraging to read about continued pain and deterioration. I understand that 25% of people with fusions have repeat surgery within about 2 years. Yipes.

I know I needed the surgery, and that I am better off with it. Afterall, I had severe spinal stenosis even WITHOUT the cyst making it worse. I'm able to walk. In fact, walking is more comfortable than sitting.

But I really hate to think that this is my life, or worse, that I have a progressive problem with degenerative disk disease and arthritis, and will likely have mroe surgery. It is likely, as I did have my neck done in 1997.

At any rate, this is liveable.

FANCYLADY: Yes, I remember you writing me when I first posted. I am sorry you are so much more dificulty--that sounds so bland---but really, I am. I don't see why he thinks you'd have a femoral hernia--just because the pain is down the front of your thigh? But that's consistent with L5 pain, and why couldn't it be from an arthritic facet at L5? Maybe you could get an injection into it to see if that improves things?

Have they tried the medrol dosepaks with you? My neuro says he'd try one every 3 or 4 weeks, to total 3 rounds, in the hope that they will help break the inflammation/pain/spasm cycle.

But really, if you can find a Feldenkrais person where you live, I'd give it a try immediately. It's painless, relaxing, and does seem to help teach the muscles to "let go". It's so much more reasonable than all the physical therapy, and seems to come from a deeper understanding of how the brain works with the body.

http://www.feldenkrais.com/

There's a place to look for practitioners in your area.

Yours,
LizaJane

LizaJane,

Hi! I had a fusion in April so we are just a few months apart. My fusion in the lumbar also, L1 to S1. I learned at my last appt, 4 months, that I had not started to fuse. My doc told me that was the reason I was feeling so much pain. I feel I am in worse pain now and not feeling much better. I have not done much in the way of PT. I was waiting for the kiddos to return to school. I do a lot of walking, but that is about it.

I did tell my husband tonight though that I just do not think I am fusing. I have too much pain and too similar to presurgery pain. I still have sciatica, the numbness in my feet has returned, the pain in the legs and feet has returned. I have more back pain now then before the surgery.

I asked what happens if you do not fuse and I was told more surgery. I would not do more surgery. I have decided this is it for me, unless they tell me it is dangerous for me. I have cages and screws and rods as I guess everyone does, but I do not think I could stand the pain again. It was just too horrific.

People tell me it is too early to tell with a surgery this large whether or not it is a success, but I just do not feel differently or better. I am just so disappointed. I had a cervical fusion and that was so different...I felt better immediately, but of course, I am now having problems from that area again as well....I was convinced that would not happen to me...I do not know why, I just thought I would get it fixed and be on my merry way. I thought it was all about attitude...I guess I was wrong...I thought if I smiled all the time it would keep me healthy...I guess not...

Wishing you the best ~
 

Hi Gloria,
I know what you mean when you say worse pain you could get. I have walked in your shoes. I have had 6 spinal surgeries, and 7 fusions now. Some of mine didn't take either. My doc said he really studied my case before my last surgery Sept. 5 th. He was going to use titaium again and I reminded him that he had to go in and take it out in a year. So he told me the day of surgery he wasn't going to put anything in but artificial bone. He had used my bone three times and it just crumbled away. This is some kind of new stuff they mix. I know what he called it, but I can't spell it. It can take up to a year to heal. Right now I am sitting on a gel pk. from the freezer to kill the pain. I will not take much of their pain meds. I have went back to driving and am not doing to bad for in the past I was using a walker at this stage. Their seems to be no easy road. Even now, I have to see another Dr. for he thinks I need hernia repair and doc made me this appointment tomorrow. I sure don't want more, for I'm not healed from this one yet!

I too, have leg pain.Mine starts at the groin and goes to my knee. It is about a 10 on the pain scale. I thought the back sugery would take care of it but it didn't. That's why I got to see this other Dr. What a bumber.

Your surgery was very large to be done all at once. I never heard of that much all at once like that. I have had all of those same fusions tho. I don't blame you not wanting anymore. I do wish you the best of luck.
Blessings,
Billie:)

Gloria, I have not seen any posts from you since I found this site. I am sorry you are feeling so bad. I remember the updates on your surgery, and thought you were so brave to go through that! Does the doctor tell you why he thinks you are not fusing?

I had my fusion done at L5 S1 in July, have had 2 sets of x-rays taken, one last week, and my doctor says it is too early to tell if I am fusing. Then I see posts on people who know after 3 weeks post-op. So this kind of scares me. How can they tell?

Gloria, I hope things get better for you. You have gone through too much to not feel better! Have you used a bone stimulator? I did not get one, but know many who did, and thought that it helped.

Billie, it seems you have good days and bad days, but you always keep your positive attitude, and your faith. You are an inspiration! How are things coming with the sale of the farm and the house?

I hope all of the recovering from surgery people do better recovering. It is always nice to come here and see posts from you guys, even though it may not be good news. It's just nice to have someone to talk to that knows exactly what you are talking about!

Carolyn

Carolyn and Liza, (I love those names!)

I had a cervical fusion last August. He fused C 4-5, 5-6, 6-7. He took ex-rays at six weeks and told me I was starting to fuse and showed me how they could tell. To be real honest, I could not see it, but if he said I was fusing it was good enough for me. I felt good and the pain was gone. At three months he said I was completely fused.

Unfortunately, I started having problems in May and set up an appt with him. My OS thought it was cervical so he sent me back to my OSS. We did an MRI and I now show changes and degeneration at C2-3, 3-4, and T1-T-4. In truth, we new C3-4 was problamatic, but it was not symptomatic so I think for that reason he left it alone. I see him in two weeks...I think he is just going to keep an eye on things for now...

Anyway...He did not think my symptoms matched the MRI so he sent me back to my OS. My OS sent me for an MRI of the shoulder. I have a rotator cuff tear in the right shoulder and arthritis in the AC joint. I need surgery in the right shoulder and right thumb for arthritis in the basal joint.

I called my pcp last week to ask a question about my daughter and burst into tears when talking to the nurse about these new problems. I told her I would not care if these surgeries actually corrected what they were supposed to and we felt much better afterwards, but I am am just afraid of having the surgery and then not feeling better. The hand surgeon told me the thumb will be as "good" as it gets after the surgery and he is supposed to be the best.

Carolyn, Yes I am wearing a bone stimulator twenty-four hours a day. I just hope it is the right size for such a large surgery.

I was talking to a friend and we were discussing the fact that many of us seem to have rotator cuff tears after these surgeries....The surgeon I saw last week about my hand seemed to think I have one in both shoulders, though my OS only had the one shoulder ex-rayed. I have been having problems with both...

Billie, What did they do when your fusions did not take? Originally, one surgeon I saw wanted to do a bone on bone fusion, but people told me not to allow that type fusion because it would not work, but it sounds like that is what your doctor did in the end? Did he remove the Titanium and pack it with bone? I absolutely cannot imagine going through this ever again.

It is so good to be able to talk to people again who understand what we have been through, isn't it?

Wish I could tell you more~
 

Hi Gloria & Carolyn,
Gloria, I can't tell you exactally what My OS done. He did refuse me. It was called Morific Or something like that. They get bone out of the Bone Bank and it is ground up or chipped up. Anyway, it is mixed with something else and then put in. If someone knows what the correct word is, please correct me. I am sure I don't have it spelled right. The titanium I was allergic to, so my body just covered it with scar tissue. Just what my OS did, I don't know. I am going to ask about the stimulator he removed too. I bet it was covered with Scar T. too. I just let him do as he pleases Gloria. He has studied
all over the world. His bio says: he studied in Switzerland, Italy, France, Hong Kong, and Singapore plus the US. I just trust him. He knows all about me for he has done all my surgeries but one.

Carolyn, I have several interested in our farm. I have several things to look into to be sure things are handled correctly. I am sure I can get a house too. it's just a matter of time. So I am being patient and trying to rest all I can. It will come out ok in the end so why worry. I have tried that & it don't work. Thanks for caring though. It is a big responseability.
Billie:)

Billie,

I think the word is morphogenic....I may not have it spelled right either...I will look it up later...but I think that is what you are referring to...I am certain both my surgeons, well I know the first for certain used it in my cervical fusion. I am not certain about the second, but I would be shocked if he did not....They took my rib out for the lumbar fusion and used that as well so they should have had plenty of bone....Good grief...Billie...God certainly has given you a heavy load to carry....You are in my prayers...

Holy Cow This is Depressing!
 

This thread is awfully depressing. It reinforces in my mind that I am at the beginning of a journey with pain, not at the end. I hate that idea.

I understand that the artificial bone, BMP, bone matrix protein, or bone morphogenic protein, heals and fuses better than bone grafts. But I'm not fused yet. My OSS doesn't seem concerned, and in the articles I read on outcomes of spinal fusion, it seemed that whether or not the surgery was a success had no relationship with whether the xrays showed fusion. It was odd.

I don't know at how many months a fusion is considered a failure, or what they do then. Do they leave in the hardware expecting that it will be enough to hold the spine steady? I thought the reason for using bone or bmp was because the titanium can't be expected to hold a lifetime, but the bone can.

Anyway, I guess I"m better than before the surgery. The synovial cyst I had and arthritis caused pretty severe spinal stenosis, and I couldn't walk more than a couple of blocks. I can now. While my back aches, and "catches", I can be more active than before. My complaint is that I'm not back to "normal" as I'd expected to be, not that I'm not improved. This pain is clearly different than the pre-op pain. I'd like it to be gone--it's amazing how much more energy and cheerfulness I have on days when the pain is low, or I've taking oxycodone---and it's not.

LizaJane

LizaJane,

You were told something different than me. I asked why we do not fuse and at first I was told they do not know. Then I was told that sometimes they use too much BMP....If that is the case then they have to go in make things right so that you fuse. I was told at the last visit that I am still in so much pain because I am not fusing.

I still have much of the same pain that I had pre-surgery. I went grocery shopping with my husband today. He does all of the work, while I simply walk along. I still have sciatica which is very painful. I am now getting the pain in both hips again making it very painfu to walk. My legs and feet start to ache after walking about ten to fifteen minutes so much of my pain is very much like what I had pre-surgery and it makes me feel very depressed. They put me back on Topamax about three weeks ago because of the leg and feet pain. I think they think that must be nerve damage. My pcp wanted me to use Neurontin this time, but I know what Topamax does and did not want to switch.

The last few days my pain is so bad that I am taking extra meds, so this needs to be explained as well. I almost called my PM doc this morning to ask him if we could sit down and discuss other pain control methods because what I am using is not working as well. I just decided to take some extra breakthrough meds instead.

I have always been told that I will never be pain free. I have accepted that, but I wanted to have things be a lot better than they were before the surgery. I do not think I would do another surgery though...It would depend on a lot of things...like loss of life issues...

Do you have the cages? Do the cages move? Or are they in there forever? If they are, then I have nothing to worry about...

Thanks for the help on that word~
 

Thanks LizaJane & Gloria, for spelling morphogenic for me. I do think you are right. I have had a bad day today. Lots of pain from surgery and the left leg pain had me out of bed at 6:30 this morning. I hate spasms and they were in both legs part of the day.Then the numbness started in from standing. I have had it for two years.
Girls, I don't think there is an end to all this pain. My first surgery was in 91 and it is much worse now than. It was only a severe bulging disc pressing on the Spinal Cord.
Gloria I don't know much about cages. One OSS told me why bother when there are screws. I also know of one in our church, that the screws wore bigger holes in the rods and they had to go back in and put bigger screws in. I saw the ones they took out for they let him have them, and they were big.That may be what they do when fusion doesn't heal. Just a guess. He is now having more problems. :eek:

I believe the Dr's do try to relieve your pain. Mine have been sincere and he really studies my case. He brought it before 5 other Dr's trying to come up with good decisions. If we only knew all the years of study and the long hours they put in. Then we go to them because the pain is bad, it's no wonder they try to help us. I do hope someday there is a answer for all the pain we are going threw. That's about all I can say.
Good Luck friends,
Fancylady:)

LizaJane, I hope you are not too depressed! I do not know much about fusing and timing, and would like to find out more about it. My OS took more x-rays last week, but said it is too early to tell if I am fusing. I was almost 8 weeks post-surgery, too.
I am glad you have improved, and hope that you continue that way. I was told this requires a lot of patience, more than what we anticipated! Before I got serious about having the fusion, my OS told me it could take 9 months to a year to heal. I planned on 3 months off of work, and 3 months of light duty. Now, I am working 4 hours a day. My mental state needed it so bad!
The depression got to me, too! BAD!

When was your surgery? And did the Faulkenrais(SP) stop working for you? It sounded so reasonable. Our bodies do so much compensating, especially after what we have all been through! We end up overusing muscles and body parts that are not used to being used, and they let us know about it!

Billie and Gloria, how are you doing? I hope all of you are having a better day today. I don't know how the weather is where you live, but we have had beautiful, cool sunny days here. It certainly helps the mental part.

Gloria, if a fusion does not happen, is it necessary to have surgery again, or is this an "IF"? Did your doctor give you a time frame as to how long he will give the bones a chance to fuse? This seems like such a grey area, it's almost a little scary.

Billie, when is your surgery for your hernia? You will have to let us know so we can all keep you in our prayers! It would be nice if we could come help you out, too. We will have to just keep sending cyber well wishes to each other, and big cyber ((((((((((((hugs))))))))))))))!
Carolyn

Carolyn--I had the surgery in february, and took off 4 weeks from work. When I went back, I worked fewer hours, but I went to physical therapy twice a week, which took a chunk of time. The Feldenkrais helped a great deal at the beginning, and I think it is still helping, although the improvements are much smaller and don't last as long as when I began it. My practitioner is suggested buying audiotapes to do some work at home between visits to her.

How much pain do you have at this point? I find it manageable; I just wish it gone.

LizaJane

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.

update
 

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

plaquenil
 

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.

more update
 

I now feel I've made great progress, and am almost pain-free, in terms of the "surgical" pain. I've used a lot of bodyworkers, and have found Feldenkrais, and deep muscle massage both very helpful. Yesterday I had my first acupuncture, and immediately was able to bend easily and put on my shoes to leave. My back had been stiff, and achy, and that totally lifted.

But I still have pain in my left butt, going down the left leg, which began several months after the surgery. I had an MRI in August which didn't show a cause, and a CT which showed I wasn't completely fused yet, but the rods and screws were okay.

Today I saw my neurologist, and he says that the butt pain is definitely due to spinal stenosis at the level of L4. He doesn't seem to think that this means surgical revision is the only answer, and tells me he thinks I'll be okay to take an active vacation with my kids in January. He thinks the MRI will show the docs where to put a needle for an epidural. But I can't help thinking that if it's spinal stenosis, there will be a re-do surgery in my future.

Yuch.

HAs anybody shared this experience of symptoms occurrnig about 3 months after surgery?

BTW: I am feeling very good. I've gotten back my flexibility and do not have unremitting pain. I just have pain with sitting (butt) and extension. If I'm a bit flexed, I'm okay. And my overall health seems good, so I am still optimistic. I think the healing from the surgery is near complete, and that's good.
__________________
LizaJane

www.lizajane.org

LizaJane,

Maybe I am being stupid asking this question, but how could you have spinal stenosis at L4 if you had a fusion at that level? I thought the fusion would eliminate the stenosis.

GZ--

Well, yah, I'm wondering also. Originally, I had stenosis caused by two things: a cyst, AND hypertrophy/arthitis of the long ligaments. But with the fusion, there shouldn't be any more cysts forming, and there's no bone to cause stenosis.

Yet the thing is, when I carried a heavy package in my left arm, both legs just turned to jello. In the shower, twice, when doing my normal morning stretches, which involve elongating myself, my legs turned to jello again.

The pain is worse if my back is extended, less if I'm hunched forward. That's a sign of stenosis.

So, I don't quite understand.

I received an email from a woman who has had many spinal surgeries and has been very supportive, and she tells me that it could just be swelling.That there could be areas of inflammation and swelling from the surgery which "mimic" stenosis.

But I'm hoping to hear more thoughts from people who have more experience iwth this.

more update
 

Acupuncture and deep tissue massage are helping extraordinarily! I'm very pleasantly surprised. In a way, it seems everything helps, at the right time.

Liza,

I saw my surgeon on Thursday and I told him exactly what you are saying. I am still needing my cane. He said that if I go to PT I will not need it. The PT will strengthen the muscles in my back. They asked me to bend backwards for the ex-rays, but that is an impossibility.

I just know if I do any bending at all, I can not straighten up at all. I walk hunched over and need my cane to walk. I also need the cane after sitting for any length of time my legs are stiff and do not move right away. This could not be from muscles in my back since I had this problem before the surgery. For the first time the other day my legs felt heavy as you described. I had this pre-surgery though and thought the surgery would eliminate it.

My surgeon now tells me that I am fusing, but there is not much bone in the cages. He told me I did not have to wear the bone stimulator anymore. I really do not know how he can see that, since his partner told me there was too much arcing on the films and they could not tell if I was fusing. They sent me for a CT Scan and I do not think he knows that I got the report from the radiologist telling me that there is too much arcing and they could not tell if I was fusing. They could not see the spinal canal at all and most of the pictures are just bright white. So I guess he saw something the others did not see, but I just find it odd that I am still on pain meds when he said I would only need them for three months. It is now almost nine months. He said once I heal more I should not have as much pain, but I seem to have the same pain. It is not as intense as immediately after surgery, but they had to up my meds after the first visit with my PM doc, and when it is time for another I am in so much pain I would not be able to walk at all, so I am just a little worried.

What happens if bone does not form in the cages? I see him again in six months. There was a woman in the waiting area bragging to everyone how great my surgeon is...Yes, he is...She had L3 to L5 fused...She said she could not walk before the surgery and now she is walking without a cane and fused at three months. I am ashamed to admit I was a little angry with her. I know I should have been happy for her and I did express it to her, but a part of me wanted to tell her to shut up. She just went on and on and was telling some fellow that he was the greatest surgeon in the world...He is, I know that, but I want to walk without pain too...

Dec 2 update
 

No real good news today. I've been having more sciatic type pain, and my lower back has been gripping more. The "sciatic pain" is a shooting pain from my butt down the side of my leg that occurs when I do anything twisting. If I roll onto my left side, or bend to the left, it's a pain that knocks the wind out of me and near brings me to the floor. On the other hand, it's not constant. My right butt has caught some of this pain, and now there's some aching there too. And because of this, I think, my lower back is gripping more, undoing most of the good results from feldenkrais and acupuncture.

why did I get worse? a bit of activity 2 weeks ago? Overdoing it?

I had an MRI and CT last week. And saw my neuro today. He said there's evidence of irritation at L4, L5, and S1. My knee jerk is way down, and I've lost sensation on the top of my foot. I get tingling down the back of the leg. That's a lot of irritation. He moved me around and saw that it was all positional and said this is clearly something mechanical. Since the MRI and CT were read as healing perfectly, he couldn't find a reason for it. Maybe, he thought, a pedicle screw was irritating the nerves, and taking out the hardware would be required. At the time, he was thinking the fusion worked.
It's not arachnoiditis, and everything is in place, so he was puzzled.

But he just phoned me. He talked more iwth the radiologist, and I'm not at all fused. This leads them to think that maybe I'm unstable. I shouldn't be being held together by the nuts and bolts, he said. So Monday I have to call to set up plain films with bending and extension and such.

In the meantime he offered me Lyrica, and then thought that maybe since Soma works for getting me to sleep (and I'm scared of being tired during the day) I'll be okay with what I'm doing now: Soma, Klonopin, and Oxycodone.
But I do need more Oxycodone to pull the level down down.

I've just rethought this, and think maybe we should have gone with the Lyrica, and starting on a weekend would be good. So I"ll call and ask him to phone my pharmacy.

That's where I"m at. I'm not pleased, but people/patients who know, say this isn't that unexpected, and reallydoesn't qualify as Failed Back yet, being under a year. I don't know--it feels like a failure to me. Like it's going in the wrong direction, if any direction.

Liza Jane,
I am so sorry to hear that you are having problems with your fusion. I really wish you were feeling and doing better.

Are you going to go back to see your surgeon or has he dismissed you before the year was up?

I am told that you are not unstable so long as you have the rods and screws to hold you together. It is when they do a bone on bone fusion without hardware that you have to worry.

Hi LizaJane,

I too have benefited from body work for my back/neck problems, specifically from Myofascial Trigger Point therapy. So much so I changed careers later in life and went back to school to learn how to do this profession.

Your ongoing glut and leg pain may be from the QL muscle(s) and paraspinals (multifiti and rotators) in your low back.

Your chronic sinus infections may benefit if your SCM and jaw muscles are worked on by your massage therapist or PT trained in Myofascial Trigger Point Therapy.
Best wishes.

turns out the butt pain is from the L5 facet, which is now arthritic, being the joint below the level of the fusion. Last week I got my first facet block, which is taking the edge off it. I'm told that next time, they'd recommend a radiofrequency ablation of the nerve from L5.

seems it's hard to stop with one fusion--the problems keep marching on.

360 lumbar surg w/2 fusions 2 lamenectomys/2 corpec
 

Hi all and hope u can answer this question for does anyone think its normal to have severly swollen ankles and feet and semi my hands and terrible arthritic pain from this recent surgurey had it nov 10 06 please send me your opions and or if u have encountered this problem too thank harleymom:Sigh: