Questions About Spinal Stenosis

Back in 2008 I was having a lot of hip, back and leg pains and I had a MRI.  I thought I was going to need a hip replacement but the hip doctor said no, and sent me to another back specialist, one who specialized in pain management.  He told me I had arthritis in my L5 vertebra and physical therapy exercises would help.  They did.  I had to stop walking for exercise because it flared up my back and made my legs numb, but if I did my PT I could keep the pain under control.  In 2010 I went back to the doctor to ask if there was anything I could do to fix me so I could go back to walking for exercise.  He said no.  He then told me I had spinal stenosis and I should be prepared for a slow decline.  He said when things got very bad he could do nerve block shots, but I should put off thinking about surgery as long as possible.

Having the label “spinal stenosis” gave me something to research on the Internet, and generally I found the same recommendations to hold on off surgery for as long as possible – but with reasons why.  Many people ended up worse after surgery.  I even watched videos of surgical techniques for spinal stenosis.  Mucking around so close to the spine scares me.  By the way, how do surgeons know what they seeing, body parts aren’t color coded like in books and the old Illustrated Man model.

I decided to bide my time and see if new surgical techniques would be developed.  A few months ago I started seeing sites on the Internet advertising laparoscopic surgery that promised miracles for spinal stenosis sufferers, so I set up another appoint with my doctor.  I was hoping he’d have good news.  He said microsurgery was still surgery and warned me that a lot of places made a business off of selling procedures and they might not work for me.

The time I can spend standing and walking has greatly diminished.  I’m now down to 15-30 minutes.  My doctor said before I thought about surgery I needed to try a nerve block shot, but also said I was controlling my pain so well with PT that I could still put that off too.  I asked him if I could go back to walking after a shot, and he seemed iffy.  He thought a shot would extend my standing and walking time but it would wear off in months.  I asked him how they worked, and he said they reduced the inflammation in the nerves near the stenosis sites.

My doctor and internet sites warned not to do surgery until I was facing a quality of life issue.  That’s sort of vague.  I can go to work, but I can’t walk between buildings.  I can’t do much shopping.  I don’t want to go on vacations.  However, I’m a bookworm and TV watcher, so I’m reasonably comfortable for that.  I’m surviving without pain by walking a razor’s edge with physical therapy and not aggravating my back by standing or walking too long.  I could risk the surgery, but what if it causes permanent pain of another type?  Right now my feet and legs go numb and I have other weird sensations, and sometimes my back tightens, but I’m not suffering real pain.  I’ve been there, so I know.

If I had surgery how many holes, passages and paths would have to be widen?  And how long will it be before they fill in again?  I’m really fighting arthritis.  Are there ways to fight arthritis in general?

I also got to thinking about inflammation.  If steroids shots would reduce inflammation why wouldn’t other things do the same thing?

My doctor did tell me something that I totally wasn’t expecting but I should have.   He said arthritis was now affecting my L4 and L1 vertebras too.  So things were getting worse.  I didn’t ask, but did that mean I’d need multiple surgeries?

That’s the thing about this condition.  I have a hard time picturing it.  I haven’t seen the MRI or X-rays.  I have seen photos on the net but they aren’t me and they aren’t specific.  I would like to visualize how arthritis degenerates the spine.  I did find this at AAOS.org.  The caption said, “When we are young, disks have a high water content (left). As disks age and dry out, they may lose height or collapse (right). This puts pressure on the facet joints and may result in arthritis.”

This explanation doesn’t explain why steroid nerve blocks would help, but it makes me wonder if inversion tables would?  It also makes me wonder if there are diets to help stop the degeneration, or foods that make it worse.  I am overweight, so I also wonder if losing weight would help, I can’t imagine that it wouldn’t, but two doctors have said it wouldn’t.  The trouble is I’ve been trying to lose weight for half my life and haven’t succeeded.

I also wondered if chiropractic techniques would help.  Physical therapy exercises have saved me from years of pain.  I can limit the pain to almost nothing with daily exercises, and that might be the same as what a chiropractor could do.  The trouble is the arthritis is also building up deposits that squeeze the spine, and squeezes the nerves branching from the spine to my legs, which I don’t think would be reduced by manipulation or exercise, unless exercise reduces inflammation, or causes the nerves to rub against the arthritic growths and kept it from expanding.  But that’s just me wondering, I have no evidence of that.

But I do have a lot of questions, especially for people who have this condition.  I’d like to hear from people who have had surgery, of any type, and people who used chiropractors or other alternative medical techniques.  Do inversion tables help?  Got any diet tips?

I know I need to lose some weight to see if that can help.  I wish I could be as disciplined with my weight loss as I’ve been with my PT exercises.  I need a diet that is non-inflammatory in general, causes weight loss, and is anti-arthritic.  I bought a Bow-Flex to see if more exercise and stronger exercises would help.  All my life I ran or walked for exercise and I can do neither now.  I should swim, but that ain’t in the cards.

I’ve known since I was a kid that getting old means breaking down physically, but I always pictured it happening fast.  I never pictured not being able to walk – I always pictured dying of a heart attack.  When I was at the Campbell Clinic I saw lots of people that looked much worse than me, some were in wheel chairs.  In recent years I’ve noticed old people having trouble walking, the ones with canes, or wheelchairs, or those little scooters.  I’ve seen a lot of people struggle just to go out to eat or or see a movie.  I suppose there are even more that stay at home.  There are millions of people worse off than me, and the thing is I need to pay attention to them, because they are my role models and trail blazers.

Unless I find a miracle cure, and I will try, I’m starting to see my future much differently than I ever imagined it.

JWH – 1/18/12

16 thoughts on “Questions About Spinal Stenosis”

  1. Jim, I’m sorry to hear this.

    One bright side is that medical research is advancing daily. Who knows what procedures might become available in a few years?

    You mention inflammation. Are you on anti-inflammatories, then? Even over-the-counter medicine? I think I’ve heard that diet can help with that (ground flax seed, for example). That’s just what I’ve heard, so I wouldn’t go by that. But if inflammation is the problem, there’s been a lot of research into that, recently.

    My point is that things might seem bleak now, but medical science is advancing by leaps and bounds. Do what you can to keep your quality of life high, and try to stay optimistic. There’s just no telling what new procedure might be right around the corner.

    Good luck!

    1. Yeah, when I went to the doctor’s on Monday I was hoping he’d have news about a new surgical technique. Last night I watched a documentary about Ray Kurzweil and he has unbelievable optimism about the future – but we have to live long enough to take advantage of future magical technologies.

      I’ve gotten a book on anti-inflammation diet – I’ve just got to read, study and apply its advice. My new goal in life is to really lose weight. I’ve said that many times before, but this time I hope I mean it.

  2. If the weight loss is a discipline issue you can try keeping records or a food diary. Make this easily available to you (and maybe even to others) so that you can keep track of what you are eating and when you are eating it.

    Keeping records means it will be more difficult for you to ignore it. But don’t overdo it. Do it gradually. I find that i lose weight permanently when i am on a more sustainable type of diet rather than on a more extreme one for a short period of time.

    Good Luck from me as well!

  3. The anti-inflammatory diet is a definite possibility. It should be easier for you since you are already vegetarian. Let me know if I can help.

    Have you looked for forums with other people that have spinal stenosis? They might help you answer some of the questions you have about what works. I think patients are generally better than docs at knowing what ‘out of the mainstream’ ideas work.

    Also have you looked at who is the big authority on spinal stenosis in the country? You might think about being evaluated there.

    1. I’m trying to find forums for spinal stenosis. I haven’t thought about trying to find the big authority, but I should. Just don’t know how to go about it. One idea that occurred to me was to contact BCBS and see what they recommend. With all the computers and networks we have, and all the millions of people with problems, you’d think someone would have a database on each condition and statistical studies.

      1. I agree with Mr. Harris. I have spinal stenosis both in my neck (the worst according to what I saw in my MRIs) and in my lower back (liveable, but my walking is now very much hindered because my legs won’t go where my mind tells them to) and I could find NOTHING! Considering the percentage of older (and even young) folks are living with it, it seems that NO ONE is talking about it except the doctors! I know what I have–I just want to know if the symptoms I have are typical and how to work with it. I go to a wellness gym attached to my local hospital, and I am sure without it I would not be walking today. If anyone finds anywhere we can get info, please let all of us know!

      2. Mary, one thing that’s helped me a lot is Z-Coil shoes. They look very weird – they have springs for heals. But they act like shock absorbers when I walk, and that allows to walk a little further than I could before. I wrote about there here.

  4. I was diagnosed with spinal stenosis last year when I was having a lot of pain in my lower back. I’ve always had hip pain and thought some of the back pain was actually my hip, but an MRI showed that it wasn’t the hip. I was sent to pain management for epidural steroid injections 3 times, but the pain relief lasted less than a month each time. I have a very high tolerance for pain, but the constant back pain has really started to wear on me. OTC anti-inflammatory drugs don’t touch the pain, so I’ve been taking Percocet. It’s such a relief when the pain disappears, but I don’t want to become dependent on narcotics or get to the point where my body is so used to the medication that nothing works anymore.
    I’m only 46 and really do not want to have surgery on my back, plus I’ve read that surgery on spinal stenosis is not very helpful. Do you think a dry climate will help keep the inflammation down? I currently live in the northeast and am moving to Arizona in a couple months.

    1. Yeah, I thought my problem was the hip too. I figured I needed a hip replacement. But when they did a MRI they said the hip was fine and sent me to a pain management doctor.

      I can control my pain with physical therapy exercises and Bowflex exercises. I have a harder time controlling numbness, but I do that by trying to stay off my feet or walking. I can walk but I limited it to activity at work. But if I do a lot of walking at work I end up with a numb leg and stiff back. If it gets really bad both legs go numb. If I let it get that bad, usually I do end up with a lot pain. I’ve just learned to slow down before it gets bad.

      I had a four day weekend last weekend, and when I went back to work I was almost numbness free.

      I used to take anti-inflammatory meds, but recently they started upsetting my stomach and intestines. So I’m taking nothing now but Tylenol just when things start getting bad. My doctor prescribed Lortabs, but I’ve never used them. I’m afraid I’ll get dependent on them. I’m saving them for when things get really bad.

      My doctor says I should delay surgery as long as possible. I haven’t tried the nerve blocks yet. Right now I think the best way to avoid pain is doing the PT exercises. If I don’t do them I do have pain, so that’s a big incentive to do my exercises.

      I have no idea about how climate might affect inflammation, but after you make the trip and find out, please write back and let me know. I do have books on anti-inflammation diets. When I avoid junk foods, eat good, and not eat too much, I feel stiffness.

      Oh, another thing that’s really help me to fight numbness is vitamin B supplements. I’m going to see my doctor next month and ask her about B12 shots.

      I saw on CBS Sunday Morning a couple months ago a surgical procedure undergoing trials that re-inflate herniated discs that’s having a lot of success with lower back pain. It’s a simply outpatient procedure. They hope to have it widely available starting in 2014.

  5. I am a 44 yr old woman and I was diagnosed with cervical spinal stenosis when I was 28 I have the kind that you get from a parent not from wear and tear some things that I have done is first and foremost if your over weight loose the weight this helped me a lot even thou my doctor said it wouldn’t it did I was 45 lbs over weight when I was 28 and lost the weight and didn’t really have any problems with it again until now. I am loosing controlled of the movements of my arms my feet are numb my face well eyes swell I have lost a great deal of vision and am in a great deal of pain a lot. I can’t sleep more than 45 min at a time no matter what I take can’t walk very far and suffer from terrible headaches. I am out of options my last MRI showed sever compression of the C3, C4,C5 so I see the spinal surgeon on the 20th of May. I eat right exercise as often as I can but don’t know what else to do. My quality of life is declining to where I can almost not work to take care of myself. I am so scared to have the surgery but do not know what else to do. Any suggestions? My dad has this condition he’s who passed it onto me and he’s had over 7 surgeries in his life time and always seemed worse not better I have other back problem like bone spurs and arthritis but my major problem is the stenosis

    1. Tanya, I feel very sorry for you. You have it way worse than I do. All I can say is my doctor told me to avoid the surgery as long as possible, and then when it’s time I would know. Do you see a pain management specialist? Like I said above, I take vitamin B12 which helps fight the numbness. I do my physical therapy exercises faithfully. I also avoid walking much. The more I walk, but more I get numb, or have pain. Since I’ve retired my pain has almost disappeared, but then I don’t do much other than hang around the house. I also wear the Z-Coil shoes that act like shock absorbers. They are butt-ugly and expensive though. But they allow me to walk further and longer than I can without them.

    1. Sue, I’m doing pretty good. I’ve learned that exercise is the best medicine. If I do my physical therapy exercises faithfully, I can control my pain mostly without drugs. I also eat a plant based diet and that controls inflammation. I sleep in a chair. I’ve also discovered that Z-Coil shoes help a whole lot.

  6. I wrote you in April 2012 about my spinal stenosis. I had an MRI after a useless needle test and it confirmed both cervical & lumbar SS. My dr. first sent me to a spine center where I felt like a number, and who were not the least bit interested in the exercises I was doing. I got a 2nd opinion at Johns Hopkins as they work with patients to be as strong both nutritionally & physically as they can be before surgery. My dr. there said I HAD to have the cervical surgery or not be able to get out of a wheelchair in 6 months (one of my arms had frozen, my neck was badly skewed, and I had no balance to speak of), but NOT to have any lumbar done unless I wanted more numbness & pain than I had. He also said that no surgery would stop the disease, but he felt he could knock it back 2-3 years. In Oct 2012 I had the cervical surgery at JH (they worked from the back which is probably why I progressed so fast) ; within 4 days I was using my arms 75%, my head had retreated 2″, and I was walking (tho not far for the first week). I stayed at JH to do my therapy and 11 days after surgery I used a walker to walk out to the car and ride 2 1/2 hours home. NOTE: if you are a smoker—STOP. I was, and quit for 6 months before and 6 months afterward–I saw my symptoms come roaring back with a vengeance after I went back to smoking. I was a dumb-ass, don’t you be!
    I still go to the local gym at our hospital’s rehab center 3 days a week and can really tell if I am not faithful with it. I go there because you have to have a Dr’s ok, all the attendants are PTs, and they know what you can do that will help and what not to do that would hurt.
    My upper body is better, tho my head is pushing forward again and my right arm is still numb. My lower body keeps tight muscles which still make my balance & walking uncertain (I walk with a cane now); and the limits on standing & walking time is lower. I have low-grade chronic pain, which irks me, but I still push myself to go to work 3 days a week (I am 72 and a historian).
    Hope all of you all a doing well.

    1. I’m glad you wrote Mary. You have it much worse than me. Or I would have it much worse like you if I didn’t do everything possible to delay the effects. I can tell that even with my improvements, I am on a slow decline. I feel like I’m walking a tightrope, and have to keep everything perfect, or I’ll fall.

      My doctors have told me to avoid or delay surgery as long as I possibly can. Whenever I ask them about new techniques I’ve heard about, they say they won’t work for me. Besides the PT exercises, the best thing I’ve discovered is the plant based diet. I did it because of my clogged arteries, but it helps tremendously with anti-inflammation.

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