Has anyone suffered from lumbar spinal stenosis? Did you have surgery?

Posted by patriciajennye @patriciajennye, Feb 4, 2018

Has anyone suffered from lumbar spinal stenosis and the severe pain that goes with it? Did you have surgery? Mayo Clinic?

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@leslie324

Patriciajennye,
I have lumbar spinal stenosis in L3,4,5 plus damage from an old fracture around S1 which I reinjured in a fall in November. Orthopaedic surgeon said surgery would fix one but the other would get worse. I investigate laser therapy and serum injections. I chose laser therapy. I had over 2 months of laser and spinal decompression therapy and can now walk, do yoga and Zumba and housework. I go once a month to a chiropractor for a tune up. Am very glad I did this but was prepared to go to Mayo Clinic if it did not work. Cost was $6000 in Rochester NY area plus $98 for tune up. My Medicare advantage plan does not cover it. You are in my prayers. Leslie324

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@leslie324 , my problem is very similar. L3-4, L5-C1. I've had the problem for many years and managed to stay active. I retired 2 yrs ago but that last job was fairly sedentary. Things got very uncomfortable with too many hours sitting. I got active again with retirement and things were ok that first year. I got the shots when I retired which helped a lot at the time. Plus my continued chiropractor visits. I've been seeing him for over 12 yrs. Then I had to have surgery on my left hand twice and left arm. Arthritis, they even had to chisel a bone out of my hand and re-route a tendon. Too much down time....pain picked up. Had the shots again (last June). Not as successful this time.The holidays were rough and I also gained weight which did me in completely. I'm looking into local neurosurgeons because I can't wait a year. I'm already at the point that I don't want to live if it's going to be like this. My second great-grandchild was born a week ago today. A boy this time and I couldn't travel the 3 1/2 hrs for the event or to meet him. Every day is difficult and I'm losing my mind being stuck in a recliner 24-7. If you have been active your whole life those of you reading this understand what I mean. Leslie I recently switched from my Advantage plan to a supplemental. It's effective March 1st and I hope it covers most of whatever can be done to help me. Thank you so much for your kind words!

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@JustinMcClanahan

Hello @patriciajennye, welcome to Connect.

I would like to invite @leslie324, @gailb, @mamie, @shoregal45, @parus, @trishanna, and @lollypop to share their experiences with spinal stenosis and the treatments they have found to help them.

@patriciajennye, if you don't mind sharing, how long have you had spinal stenosis and what sort of treatments have been discussed with you?

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@bernese53 Thank you for your kind words. You've heard I'm sure the old phrase "getting old is a bitch"....I can without a doubt agree with that statement!!

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@JustinMcClanahan

Hello @patriciajennye, welcome to Connect.

I would like to invite @leslie324, @gailb, @mamie, @shoregal45, @parus, @trishanna, and @lollypop to share their experiences with spinal stenosis and the treatments they have found to help them.

@patriciajennye, if you don't mind sharing, how long have you had spinal stenosis and what sort of treatments have been discussed with you?

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Oh, yes. I like to say that my mind and spirit are young but the rest is about 226 years old.

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I have spinal stenosis also. I have received cortosone shots and Physical Therapy. This usually helps, just need to give your body time to heal.

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@franknstein

I have spinal stenosis also. I have received cortosone shots and Physical Therapy. This usually helps, just need to give your body time to heal.

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@franknstein unfortunately it's gone too far for me already. The shots aren't working anymore and the pain has gone beyond unbearable. Since Mayo can't see for soooo long I've been researching neurosurgeon's in the Central FL area. One of the doctor's that saw me, before I tried to get into Mayo, finally showed me and explained exactly where I am.The growths are actually pressing into the spinal cord. The severe edema it's causing is contributing to the additional pressure and consequently the severe nerve pain. How long have you been getting the cortisone shots? No one ever ordered physical therapy to me. I wonder why. I've been willing to try anything for several years. I've been getting the shots since 2007 or 8.

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@patriciajennye @franknstein

I have had back problems most of my life. When I was younger, I pretty much ignored it. However, about 7 years ago, my trips to the chiropractor and for massage no longer worked to ease the pain. I had taken so much ibuprofen that I got ulcers from it. I can never take it again and at the time Tylenol wasn't helpful. I reached a point where about once every 3 months my back would "go out" and I had acute pain and used a wheelchair until it got better. I had an MRI an MRI 6 years ago and the doctor told me I had 4 herniated disks in my lower back. I refused to do anything about it in terms of surgery as I had heard horror stories from my brother about his back surgeries. I simply tolerated the pain and I started back into Yoga which had helped me for years. I also started seeing a chiropractor again when I was having acute problems. Massages were pretty regular to keep me going.

This most recent acute pain was MUCH worse than previous episodes. I decided to see my new doctor St. Jude's in Fullerton, CA. He referred me to the Spine clinic there, and they did an MRI and xrays. They explained to me that I have spinal stenosis, degenerative disk disease, herniated disks at L4, L5,, L3, L2, spondylolisthesis, amyloidosis, and a compound fracture at my C7. I was shocked to see how bad it was. My L5-S1 was impinging on my spinal cord, and my L4 was extremely out of alignment. We decided to take care of the L5-S1 first, with outpatient Laminectomy surgery to fix the impingement on my spinal cord. It was very successful and all the pain on my left side, hip thigh, knee, ankle and toes was/is gone. However, my L4 was still causing chronic pain on my right side, hip, thigh, knee, calf, ankle and foot. The surgeon said it would take major surgery with rods and pins to repair it, and he recommended I try everything before taking that step.

So, I tried acupuncture, physical therapy (2rounds), and pain medications, i.e., Tramadol 50mg 4x day, Gabapentin 900mg 3x day, Baclofen (I don't remember dosage or strength). It was about that time that I found Mayo Connect. I read on this site early on about a treatment called ART, Active Release Technique that some people found helpful. I decidedto research it, and found that the theory is that muscles and nerves get bound together after a trauma of some kind at some point in your life. This therapy uses very very deep muscle massage at the same time your body part is moved. It is focused on one spot at a time. I decided to find a practitioner in my area and try the ART. When I looked I discovered that some chiropractors used ART. I found the most qualified Dr. of Chiropractic in my area and saw him. He told me I needed 2 sessions a week for 3 weeks, and it would cost $95 a session. Medicare doesn't cover it. That's a lot of money for me, but I decided to try it anyway. After 3 weeks, I was nearly completely pain free, much to my delight. I continued to go every other week for a couple more months and was pain free. In the meantime I got off the Baclofen, and the Gabapentin. I continued the Tramadol until this December when I began withdrawing from it. I now only take 1/2 a Tramadol when I need it. I've been traveling a lot lately so that has me in some light pain. I go for a tweeking about once a month now. I see Dr. Andrews for my ART on Wednesday this week.

I cannot tell you how much this treatment of ART has helped me. I walk with no pain, even up stairs. The part of my body is causing pain right now is my neck an left shoulder from my C7 fracture. I get cervical radiculopathy in my left arm that is excruciating. I don't get it as often as I used to, and we are using ART to work on that right now. My chiropractor also uses laser treatment to heat my muscles before he works on my muscles and bones. It's working for me. I'm hoping to avoid surgery again for a long time. The surgeon I had was wonderful, so if you live in Orange County CA, and can't get into Mayo, I can provide his contact information. I too prefer Mayo, which I have been to 3 times in the past (once with my husband's heart attack), but my surgeon here is excellent.

Let me know how things go for you and if you decide to follow up on anything I have suggested here. As a Volunteer Mentor, I am not a medical professional; I am here to offer my real life experience and to support you in your decisions about what will work for you. I hope you find relief from your back pain.

Gail B
Volunteer Mentor

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It sounds like yours is alot worse than mine. My family med Dr. ordered my PT. I hope you can find some help soon.

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@gailb

@patriciajennye @franknstein

I have had back problems most of my life. When I was younger, I pretty much ignored it. However, about 7 years ago, my trips to the chiropractor and for massage no longer worked to ease the pain. I had taken so much ibuprofen that I got ulcers from it. I can never take it again and at the time Tylenol wasn't helpful. I reached a point where about once every 3 months my back would "go out" and I had acute pain and used a wheelchair until it got better. I had an MRI an MRI 6 years ago and the doctor told me I had 4 herniated disks in my lower back. I refused to do anything about it in terms of surgery as I had heard horror stories from my brother about his back surgeries. I simply tolerated the pain and I started back into Yoga which had helped me for years. I also started seeing a chiropractor again when I was having acute problems. Massages were pretty regular to keep me going.

This most recent acute pain was MUCH worse than previous episodes. I decided to see my new doctor St. Jude's in Fullerton, CA. He referred me to the Spine clinic there, and they did an MRI and xrays. They explained to me that I have spinal stenosis, degenerative disk disease, herniated disks at L4, L5,, L3, L2, spondylolisthesis, amyloidosis, and a compound fracture at my C7. I was shocked to see how bad it was. My L5-S1 was impinging on my spinal cord, and my L4 was extremely out of alignment. We decided to take care of the L5-S1 first, with outpatient Laminectomy surgery to fix the impingement on my spinal cord. It was very successful and all the pain on my left side, hip thigh, knee, ankle and toes was/is gone. However, my L4 was still causing chronic pain on my right side, hip, thigh, knee, calf, ankle and foot. The surgeon said it would take major surgery with rods and pins to repair it, and he recommended I try everything before taking that step.

So, I tried acupuncture, physical therapy (2rounds), and pain medications, i.e., Tramadol 50mg 4x day, Gabapentin 900mg 3x day, Baclofen (I don't remember dosage or strength). It was about that time that I found Mayo Connect. I read on this site early on about a treatment called ART, Active Release Technique that some people found helpful. I decidedto research it, and found that the theory is that muscles and nerves get bound together after a trauma of some kind at some point in your life. This therapy uses very very deep muscle massage at the same time your body part is moved. It is focused on one spot at a time. I decided to find a practitioner in my area and try the ART. When I looked I discovered that some chiropractors used ART. I found the most qualified Dr. of Chiropractic in my area and saw him. He told me I needed 2 sessions a week for 3 weeks, and it would cost $95 a session. Medicare doesn't cover it. That's a lot of money for me, but I decided to try it anyway. After 3 weeks, I was nearly completely pain free, much to my delight. I continued to go every other week for a couple more months and was pain free. In the meantime I got off the Baclofen, and the Gabapentin. I continued the Tramadol until this December when I began withdrawing from it. I now only take 1/2 a Tramadol when I need it. I've been traveling a lot lately so that has me in some light pain. I go for a tweeking about once a month now. I see Dr. Andrews for my ART on Wednesday this week.

I cannot tell you how much this treatment of ART has helped me. I walk with no pain, even up stairs. The part of my body is causing pain right now is my neck an left shoulder from my C7 fracture. I get cervical radiculopathy in my left arm that is excruciating. I don't get it as often as I used to, and we are using ART to work on that right now. My chiropractor also uses laser treatment to heat my muscles before he works on my muscles and bones. It's working for me. I'm hoping to avoid surgery again for a long time. The surgeon I had was wonderful, so if you live in Orange County CA, and can't get into Mayo, I can provide his contact information. I too prefer Mayo, which I have been to 3 times in the past (once with my husband's heart attack), but my surgeon here is excellent.

Let me know how things go for you and if you decide to follow up on anything I have suggested here. As a Volunteer Mentor, I am not a medical professional; I am here to offer my real life experience and to support you in your decisions about what will work for you. I hope you find relief from your back pain.

Gail B
Volunteer Mentor

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Thank you Gail! I live in Central Florida. I've never heard about ART. I need to check on that. I've been to two different chiropractors (my ongoing one - 15 yrs) and one recently recommended as "the greatest." The new chiropractor deals with 'whole health' and was great. After reviewing my newest MRI and x-ray he explained what he saw and stated he can do nothing for my lower back because of the protrusions onto the spine. He was my first recommendation to see a neurosurgeon. I've been researching neurosurgeons ever since.
I just broke from writing and found an ART practitioner close to my home. I'm going to call. Thx again!

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I was recently diagnosed with Spinal Lumbar Stenosis. I am in constant paid in my lower back, right hip and down my leg. I don't have a doctor's appointment until next Friday. Has anyone else had the epidural steroid injection for this? If not, how do you control the pain?

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@seldredge

I was recently diagnosed with Spinal Lumbar Stenosis. I am in constant paid in my lower back, right hip and down my leg. I don't have a doctor's appointment until next Friday. Has anyone else had the epidural steroid injection for this? If not, how do you control the pain?

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Lumbar stenosis is the narrowing of the spinal canal that houses the spinal 9nerve) chord and thus pinching of nerves; it is due to disc narrowing or collapse and the "wings" of the vertebrae pinching the nerves. If the vertebrae moves forward relative to the others is leads to anterior (forward0 listhesis or the opposite. in any case it all leads to acute pains and even immobility.

Twice I had epidurals, 2003 and 2017; the wait to full effect is 6 weeks. Following failed epidurals, I had two laminectomy (removing bone from vertebrae "wings" to open up the spinal canal) if this fails, the wait time is 6 months to later fusions, L4-L5 (2003) and L2-L3 2017. From MRIs the radiologist writes a report diagnosing the condition; a neurosurgeon follows (by contract) insurance protocol to stage first the epidural followed by a laminectomy and then the fusion if one is required

I have known of a close relative that the epidural releive the pains but paired to opiods. This combination worked for theperson. In my case, i preferrred to cry to taking pain opioids; I lrespect myself, my body more than the pain can make bend to it. Eventually, w/o the pils, one develops a pain threshold relatively high due to the body being led to make it is own endorphins which relieve the pain. Pains moved form groin to buttocks, down to the upper lower limb and often I could not stanmd or walk; I had to sit. but proudly i do say, never pain pilsw. thy damage the pancreas, kidneys etc.

In my cases, due to double herniated disc (2003) and later the same (2017) neurosurgeon decided to due the fusion. Now, here is the kicker. In Germany they replaced the disc w/o any post-surgery physical limitations if any (with over 75000+ successful surgeries of disc replacements). Hhere in the states the FDA does not' allow the German disc replacements to be used ( there are few hospitals that may due it experimentally though) instead they approve fusions (practically time-consuming calcium welding 2 adjacent vertebrae) and thus the surgeons hands are tied by FDA. The outcome of the FDA approved procedures cited above are lengthy recovery, restrictions to movements like lifting and twisting. and other. Whereas the German disc replacement's recovery/release is much faster, the surgery is much less expensive, it takes about one-hour+ to replace a disc (as opposed to several hours for laminectomy and more hours for fusions 6+ hrs). Longer time on the surgery table, longer hours of anesthesias and collateral cognitive effects. End result, in my case, I walked away from of the bed after every procedure andafter the first fusion, I lived pain free for 14 years and currently pain free (but with significant limitations) after the later fusion. Hope this narrative helps you. .

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