Mayo Clinic Connect
Has anyone suffered from lumbar spinal stenosis and the severe pain that goes with it? Did you have surgery? Mayo Clinic?
Liked by Mamacita, Volunteer Mentor, jewel8888
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.
Liked by barbarn
It sounds like yours is alot worse than mine. My family med Dr. ordered my PT. I hope you can find some help soon.
Liked by GailBL, Volunteer Mentor, patriciajennye
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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!
Liked by GailBL, Volunteer Mentor
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?
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. .
Liked by GailBL, Volunteer Mentor, barbarn
Liked by GailBL, Volunteer Mentor, barbarn, rachalanne Shelley
Greetings, all. I am a member of "My Chronic Pain Team" website but stumbled on the page as well, so I thought this would be a good place to seek an opinion. Or two.
Here's what i posted there (wondering what you guys think as well):
My surgeon said no surgery. Said he didn't think it was necessary. I got to say, with so many other doctors saying I need surgery, and the pain getting worse, not to mention quality of life, I was a bit taken back, and disappointed.MRI report below, in case some of you haven't seen it:IMPRESSION:
Moderate degenerative canal stenosis and moderate bilateral foraminal
narrowing at L3-L4.
Mild multilevel canal stenosis and foraminal narrowing at L2-L3 and L4-L5.
Disc degeneration from L2 through L5 most significant at L3-L4 with Modic
type I changes.
Your concern is certainly understandable. First, I’d like to underline that although we cannot diagnose medical problems on Mayo Clinic Connect, it is Mayo's longstanding history to share information beyond our walls through patient education, shared experiences, expert video, and much more.
You may also notice that I moved your discussion and combined it with this existing discussion on spinal stenosis as I thought it would be beneficial for you to be introduced to the many members who have discussed similar conditions.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
There are quite a few different discussion threads where members talk about spinal stenosis. Here are few that I’d encourage you to view:
– Laser treatment for spinal stenosis? https://connect.mayoclinic.org/discussion/laser-treatment-for-spinal-stenosis/
– T.E.N.S. for spinal stenosis pain https://connect.mayoclinic.org/discussion/t-e-n-s-for-spinal-stenosis-pain/
– Chronic Pain members – Welcome, please introduce yourself https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/
In the meantime, I’d also like to invite @barbarn @leslie324, @gailb, @mamie, @shoregal45, @annmerc @trishanna, and @lollypop to share their experiences and the treatments they have found to help them.
@davidstory, how are you managing the pain? Has your doctor explained why they feel that surgery is not necessary?
I have also been diagnosed with Spinal Lumbar Stenosis and I am having an MRI in a couple of weeks! I cannot have Surgery, because I have Epilepsy and am allergic to Anesthesia! I also have Asthma, and Osteoporosis; so my only choice is Physical Therapy and walking! I absolutely sympathize with your pain, and hope you feel some relief soon!
I need some help I can’t find any doctors willing to help me because I am young and Medicaid denied another MRI even though it has been 3 years and I was suppose to have one after 6 months I have cervical spinal stenosis I can’t lift my arms up or I get tingly and lose feeling I’m my arms which I am 25 I have 3 babies which is very hard to manage considering my diagnosis. I have a cyst inside my spinal cord from t7-t9 which wasn’t compressing on my spinal cord at that time I have multiple lateral process transverse fractures on the right side with chronic Pseudarthrosis so they don’t heal themselves and arthritis which I don’t even know what kind I was never told I was just told these diagnosis shouldn’t be causing me as much pain that I am in which I had never taken pain medication at the time and they were the only thing that made it so I could walk and care for my kids at all which I have a lot of addiction in my family and now my body relies on them and I used to lose feelings in my legs and fall all the time which I haven’t fell in almost a year so that is good news but I feel so weak and like my muscles are getting so weak and I don’t know what to do anymore I need help from someone and I feel like they just left me for dead cause everyone is too scared to paralyze me because of the cyst most chiropractors won’t even touch me and now the crack down on medication. I understand it I really do but where do I go from here?
The cure sounds worse than the pain. Is ART very painful?
@chas93 No doctor I, but I was getting to the point of not being able to grasp things, or lift heavy, slippery stuff, or other stuff. Long story short – went to a physical therapist and am getting the help I need. You will need an order from your doctor for insurance to cover, and your doctor will also know if this is a safe activity for you. Well worth a try, please?
I went for 2 months I didn’t help but my dr wants me to try a different physical therapist and see if that works. I want to find someone that will try the nerve block so I can do physical therapy even that is hard on me to do I just feel weak and tired and just not myself anymore I have had these issues for 4 years and I feel like it is really starting to take a toll on my body and every like 6 months I get really sick with 106 temp and horrible stomach pains I don’t know if it is related to the blunt force trauma to the stomach that cause the spine to fracture from the inside because the right colon has asciatic fluid and wall thickening and usually with those injuries you have a internal injury also and I was never told from a dr about some of my diagnoses I went and got my car scans and mri scams on my own cause I felt like not everything was adding up and I have had interest in the Mayo Clinic but I live so far away from there. I know there is someone that can help me just don’t know how to get there?
I feel like all of my mucsles and joints are locked up and it’s extremely hard for me to get going especially in the mornings.
@chas93 Really can't talk about some of your problems, but I would not be walking without my physical therapy. Diagnosed in 2007 with spinal stenosis and told most women with that problem use a cane. Well, this is 11 years later and still no cane. Had to fight to get PT, bit it was worth it. After PT, I feel like the Tin Man in the Wizard of Oz, with all my rusted joints oiled!!!!
@chas93 You mentioned you had or have back fracture Have you gone to an Orthopedic Dr? for this? You do need to be under Dr,s care if your not I hope@ Colleen Young the connect director will reply as she can give you information on the Mayo Clinic in Az,Mn,and Jacksonville Fla also satellite Mayo,s .
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