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.

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

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

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...