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Has anyone suffered from lumbar spinal stenosis and the severe pain that goes with it? Did you have surgery? Mayo Clinic?
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?
I was diagnosed with Lumbar Spinal Stenosis 10 years ago. At first I just got shots in my back and they did help for quite a while. A lot of the pain and the weakness was in my legs. I reached a point where I could not stand on my legs for 10 minutes at a time. I couldn’t stand in line at a store even if I had a shopping carriage. I did decide to have surgery as I wanted to be able to walk I had been active all my life. I had a laminectomy and a fusion on my lumbar spine, which was a success. I was walking again everything felt great and it lasted about 3 years then My arthritis in my back got worse, and my legs started to bother me again, the stenosis was moving up to. L3 so I ended up getting shots in my back. Over the next couple of years the arthritis became severe and so did my scoliosis, and I also have degenerative disc disease, so I have a terrible back that the Drs can’t do anything to fix because of all the problems, iand they just recommend facet joint shots and epidurals. I can do these shots about 3x a year and they do help. I am 78 years old and did not have problems with my legs and back until I turned 67. Although when I first went to the Dr about my legs and back and he diagnosed Stenosis he told me I didn’t just get the Stenosis I had it for a while, He was a Physitrist. After a few years I ended up with a Spine Surgeon who did the laminectomy.
@annmerc Sounds like me. My stenosis began to hurt at about age 15. A doc told me I had injured my back somehow. I knew I had, so I did not really question him. I gave up sports for a while, and that did not help so I started again, and that helped a little. Eventually I had the shots, then several operations before I learned that this was some disease I had. Only in the last couple years I have learned it is an autoimmune thing, ATTRwt, which I will always have. Anyway, there is treatment now, Patisiran. I hope to start on it soon.
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I too had been active all of my life. A much slower pace has been an adjustment. Also a challenge in acceptance. You are wise in stating that doctors cannot fix everything. This is part of the battle.
I have had it bad for a little over a year. It has now progressed to where I have extreme pain and numbness, unable to walk. I haven’t been able to lay down in bed for over a year. A hospital bed only made the nerve pain worse. I’ve been in a recliner since Jan-Feb of 2017. My chiropractor referred me to an orthopedic surgeon who said he won’t touch me and sent me to an orthopedic Dr with the same group for pain management. He just gives me epidurals which don’t last long and are just a band-aid on the problem. Last week I saw a different chiropractor, that came highly recommended, with my recent MRI that my PCP had sent me to have. After reviewing the MRI he adamantly refused to treat and said I need to see a neurosurgeon. He reviewed an x-ray that also was taken and explained the growths are pressing on my spinal cord. Justin I am scared to death. I don’t want to be a cripple the rest of my life. He gave me a referral to a neurosurgeon. My family says “go to the Mayo Clinic” and I agree. However I have heard it’s very hard to get an appointment and I can’t wait for months or years. I am scheduled for another epidural Thursday the 15th but that’s as far as I’ve gotten. I thought I would try to see what other patients of the Mayo had to say. Thank yo so much for getting them involved. Patsy
Well, I just called the Mayo Clinic and was told they are scheduling one year out. So much for getting the best. Very sad!!!
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
@patriciajennye Hi, Patsy. Over the last couple of centuries several members of my family, including me, have experienced tough times with spinal stenosis. Various kinds of arthritic nodules have formed in the spine, putting pressure on the nerves and blood flow in the area. Now we are learning this is a hereditary disease, at least for us. We have some form of Light Chain Amyloidosis which shows up differently in different individuals. Mine is apparently systemic primary hereditary Light Chaim Amy. I have about 220 distinct symptoms and signs, with some more probably showing up in the future, as long as I live. Back in about 1890, a young woman was diagnosed with “arthritis nodules and stems around the spinal column, putting pressure on nerves and bones and blood flow.” I have and have had the same stuff, complete with epidurals and every pain killer you can think of. Now it is all over my body, especially my brain, throat, lungs, heart, liver, kidney, skin, spine, etc. I also have 4 of 6 sisters with it, and several nieces and nephews and others with it. Almost everyone over 70 shows, and many in their 20s. You can read my story freely at https://bit.Ly/1w7j4j8 “Amyloidosis” I suggest you find a good hematologist, and check your misfolded protein levels in your blood serum, urine and spit. Also, biopsies of skin and other tissues will be necessary, and have Mayo do the lab work on them. Also, your cardiologist can and should do a 12-lead ECG with a good machine which clearly shows enlargements of your QRS tracings. A sawtooth pattern means it is in your heart, a very dangerous sign. It seems like a lot of work for what could be nothing, but it could let you live an extra 10 or 20 years. In our family most of us die at about the age of 70, when the stuff is just getting going good. You probably do not have it, but if you do, treatment with Patisiran can give you extra years.
I have spinal stenosis, scoliosis, degenerative disc disease, and two herniated discs. I was a self-referral to the Mayo Clinic in Rochester in 2016 but I only had to wait about 6 weeks to be seen. I will need to gave a spinal fusion sooner rather than later. Keep trying at the Mayo Clinic….the time frame for an appointment might decrease!
@patriciajennye. Please know how much I hope you will find an answer that will alleviate your pain!!! My stenosis is of a different nature than yours, so I’m afraid there’s nothing I can recommend to you based on my experiences. However, I would encourage you to pursue Mayo Clinic – make a pest of yourself if necessary. Also ask if any of their other locations would be of more benefit to you (I do not know where you live, but Mayo has several locations). And please keep us posted!
@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!
@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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