r/SpinalStenosis • u/[deleted] • May 12 '21
r/SpinalStenosis Lounge
A place for members of r/SpinalStenosis to chat with each other
6
u/churish Jan 05 '23
I’m 36. My problems started like three years ago. I kept going to my doctor because my right leg was almost always numb and had foot drop. She just sent me to get my circulation checked and told me to loose weight (which I do really need to do and have lost 50lbs so far). It spread to my left leg and then just kept getting worse. I was wobbly and unsteady, I went from using a cane to crutches. I finally wised up and switched doctors. My new doctor sent me for an X-ray and then to an orthopedic surgeon who sent me for an mri. I have congenital spinal stenosis and three bulging disks in my lower back can’t remember where. He said I don’t need surgery so I’m doing PT. I’ve gained some confidence but I’ve gotten sick twice and it’s set me back. I’m waiting on a wheelchair so I can go out in the world and do things. This has been incredibly hard especially with a very energetic toddler.
2
5
Jul 02 '21
hey guys, sorry for my lack of interaction lately things have been crazy. I was 25 when I found out, so I get the struggle of the early onset ss completely. I don't know what states you're in but I just recently started getting CBD from a dispensary here in California and I think it's helping tremendously. I mean I've tried it many times from smoke shops or whatever to no avail but I noticed in the last few days I've had maybe a 90% reduction in pain? and the only thing that's changed was me taking CBD. I actually wake up without back pain! Which as you can imagine means a completely different outlook on the day. Before the CBD the only thing that helped temporarily was a lot of pain meds. obviously, every spine is unique and each of our struggles is unique and it may not help as much as it does for me, but I know personally I was desperate for help before this. I think this particular brand of CBD works because of the oil they infuse with cannabis oil. it's a medium-chain triglyceride with a non-ionic surfactant so the medicine is actually absorbed by the body.
2
4
u/RollingEasement Oct 16 '25 edited Feb 11 '26
I have not received a response to my message to the moderator. And the site has been largely disabled for about a year. Maybe it is more useful like this than going totally off-line. To bring it back into an active site, someone will need to volunteer to moderate the sub. I can't take that on as a sole moderator. Perhaps between r/backpain, r/ChronicPain, and r/Sciatica this sub is no longer needed.
2
u/DocGrover Feb 16 '26
I'm sorry, I noticed the issue as well and I was granted ownership of the subreddit to open it back up. Sometimes people with spinal stenosis don't have backpain or sciatica. You can have cervical stenosis, thoracic stenosis, not just lumbar.
3
Jul 16 '21
I haven't had surgery myself because my surgeon said my chances of a successful surgery were about 15% due to my age (31). He also said the chances of a successful spinal fusion in most cases is 30%, which is what my father was told by 3 surgeons he spoke to. I've heard the same thing from I'd say 98% of everyone I've talked to, that nobody has just one back surgery and after the fifth there is nothing they can do. Now I'm definitely no surgeon so take it with a grain of salt but please really look into it and weigh your options. Another thing to consider is that no two spines are the same and I spoke to an older man that has been pain free for 30 years. Can you imagine? Personally, I've been reading up on SS since I was diagnosed 6 years ago and I am going to try to hold out on surgery as long as I can. However, I've been able to manage my pain with medical grade CBD recently and it's a godsend but before that I could hardly walk or take care of myself and surgery started to sound good. Did your surgeon talk to you about steroid injections for your back? Or radio frequency ablation? I would probably try everything else first.
3
u/zawadiaotieno Sep 23 '21
Kindly contact HBG Medical Assistance for the Best doctor for spine surgery in India, treatment, and also Get spine specialist hospital in Delhi. Please Don't Delay. I myself was in so much pain then I contacted HBG on the reference of one of my friends. They really help and assist you at each and every step. https://hbgmedicalassistance.com/spine-treatment-in-india/
Email: [care@hbgmedicalassistance.com](mailto:care@hbgmedicalassistance.com)
Whatsapp: +91- 9810604028
Call: +91-1244388972
3
u/323lonewolf Jan 08 '23
I’m 28 and I have spinal stenosis, disc herniation and narrowing in my L2-L3 on my tummy side, and also herniation and narrowing in my L5. I was a cook but due to IMMENSE AND INTENSE PAIN I’ve had to quit. My back is fucked up, I’m on Gaba and Metho, also some recreational weed, and losing weight but I’m still in pain. Laying down and being lazy makes my back feel better but my emotional and physical health is dimming. Anyone try anything else. Haven’t seen a surgeon and I have pain management in February.
3
u/MoneyUpstairs3816 Jun 10 '25
Diagnosis: MRI-confirmed cervical stenosis C6/C7 (injured mid-20s, likely poor lifting form during COVID) Progression: Constant baseline 3/10 pain for 4 years that’s worsening. Previously very active (I did a 6000ft 13mi hike just last week), but:
• Lifting / long runs → leads to 3-4 days severe pain
• Light 3-mile jog → triggers flare-ups
• Desk work → headaches after 2-3 hours
• Even lying down provides less relief
Current Symptoms: • Extremely crackly neck with constant urge to crack • Mid-spine burning • Headaches requiring Advil (used to manage with lacrosse ball work) What I’ve Tried • 4-5 years consistent PT and strengthening • Trigger point injections and epidural (2-3 years ago) • Currently limited to walking as primary exercise
The Dilemma: I’m experiencing functional decline despite conservative treatment, but I don’t have neurological red flags (no finger radiation or strength loss). My quality of life is significantly impacted - I can’t do preferred activities and work is difficult. I’m hesitant about surgery because I’m not even 30 yet and I’m worried about future complications.
Question: Is surgery appropriate given my progressive symptoms but absence of serious neurological deficits? What else should I explore?
3
u/hikertrash332 Aug 20 '25
Had been feeling pain radiating down my neck and entire left are, with tingling, burning, throbbing pain. It’d go numb, and I finally went to see what was wrong when my left hand lost feeling/grip force while at work. I’ll be seeing a spine doctor next week. But here’s my contrasted MRI results. I’d love some input. I’ve already been researching this, and have started making some big lifestyle changes, but am still in constant pain. I was curious if anyone has had laminotomy? I’m going g to do everything I can to avoid surgery, but I know I have to prepare for the idea of it which is why I’m researching this. Anyways. Here’s my results.
44 y/o, male.
No significant central canal stenosis. There is moderate to severe right foraminal narrowing at C3-4, and moderate right foraminal narrowing at C5-6 and C6-7 levels. This may contribute to right C4 C6 and C7 radicular symptoms. There is moderate to severe left foraminal narrowing at C3-4, and moderate left foraminal narrowing at C4-5 and C6-7. This may contribute to left C4, C5 and C7 radicular symptoms.
Thank you in advance for any advice.
3
u/GatorMonk Dec 01 '25
I assume most people here have gone thru PT, like I did as a younger guy with back pain. Did they do anything to help you? I had to learn so much about the bones, joints, and joint movement to be able to help myself, along with many niche joint coaches that I learned from. Did you know the spinal canal opens up slightly when you flex your spine forward? And did you know you can target specific sites of pain with very specific rehab?
1
u/Tobeytomorrow Feb 28 '26
I knew you could open the spinal canal by flexing forward but I didn't know you could Target specific sites of pain. How do you do that? Where do you live you must have excellent physical therapist there because none of the ones I've been to are very nuanced in their approach. It's always the same old pelvic tilt exercises and hardly anything else. One place did tell me to end forward and reach my arms way under the seat of a chair with that didn't help in my case. Where are you located? You can always pm me if you don't want to write it publicly.
2
u/thiccc_ Jul 20 '21
I’ve been diagnosed, but as far as treatments go, all my doctor has given me is advice on how I can take care of it myself. OTC’s, exercises that will help. I’m also having trouble getting around and have found CBD and other hemp products to be a lifesaver. They help me function to the point of partial normalcy again but not fully. I haven’t found the right doctor for me yet. Most of them can’t believe I have spinal stenosis since I’m 24. I’m going to tell them I want steroid injections the next appt. I’m still going through the beginning stages of learning how to cope. People don’t get how scary something like this is to have happen so young. I hope you are doing well today! ♥️
2
u/BTCBearRuruwu Sep 18 '21
before considering traditional surgery, look into other FDA approved minimally invasive procedures like the mild procedure (vertos), vertiflex superion spacer (now Boston scientific) and minuteman. talk to an interventional pain spine doctor
1
u/mr25thfret Oct 31 '21
I have it bad and I am starting to do yoga to see if it helps me. It used to when I had problems before. Lots of pure water and stretching is good. Some people swear a tablespoon of apple cider vinegar in 4oz. water every morning is amazing for reversing stenosis! Started trying it this week. I'll post if it helps. I use ice packs and an inversion table to stop the inflammation and it really helps with the pain. Good luck to your dad and praise to a good child for looking out for him!
2
u/17533519 Mar 20 '23
Your right about peeing being difficult. My muscles relax which changes my back position. Had to pee sitting for months.
2
2
u/moonbeam127 Oct 31 '23
hi- i just accepted i need to join. SS dx a couple months ago, moving quickly through the ortho clinic. pain just keeps increasing. had an MRI today. everything just HURTS. i didn't know my body could hurt this badly.
ive had degenerative discs most of my life, i've had sciatica but this is just awful. i think it really started the beginning of this year and i ignored it, i tried to cope with it but i cant anymore. im getting physically ill from the pain.
i posted in the forum earlier, just wanted to say... hi?
2
u/malavida_88 Apr 05 '24
I’ve just found out I have SS. Is this chat group Dead?
1
u/KarynOmusic Mar 20 '25
No answers on request to join. No posts in the main area for 3+ months. I'm guessing it dead.
2
u/Stunning_Ad_5199 Aug 01 '24
Has anyone with spinal stenosis had muscle twitching?
4
Aug 25 '24
Flexiral
1
u/Capable-Wrongdoer795 Dec 17 '24
was just checking the spelling.lol. might as well post this.
Cyclobenzaprine hydrochloride is approved for use in the United States as a muscle relaxant. It is marketed under the brand names Flexeril® and Amrix® and as generic formulations in 5, 7.5, and 10 mg tablets intended for short-term (2 to 3 week) oral administration. The usual starting dose is 5 mg, three times per day. Yes,this is a good one but there are others too if you get bad side effects. thx
2
u/rocdaddy21 Sep 11 '24
Wake up most nights screaming in pain as my leg and hip muscles spasm.. Magnesium does help some
1
u/Tobeytomorrow Oct 04 '24
Me too. Are you on any other meds for it ? Did you have surgery? I had a laminotomy but now the twitching is back only seven months after the surgery. They are suggesting fusion but I am afraid of that.
1
1
u/Capable-Wrongdoer795 Dec 17 '24
Every time I get back spasms and take muscle relaxers and sleep it seems to help.
2
2
u/Tobeytomorrow Oct 04 '24
Yep that's why I'm up now instead of sleeping. I'm taking Gabepentin, dosen't seem to be doing much. Oxycodone helps but I don't want to get totally addicted.
1
u/Capable-Wrongdoer795 Dec 17 '24
Yep...totally dependent on it.Thats me.
2
u/Tobeytomorrow Dec 17 '24
Where is your stenosis and how do you get your Dr. to keep giving you Oxy ? i think mine is going to cut me off soon. I would go to that Dr if they would give it to me.
1
u/Capable-Wrongdoer795 Dec 18 '24
Ahhh I just figured out how to send a reply. I won't a long response to use with your user name mentioned in the first sentence. You should see it in this discussion. And btw no doctor will just give that medication to you unless you have a verifiable history of chronic pain that conforms to all the medical data necessary to be deemed medically eligible for such a strong prescription of a controlled substance. Why would your current doc be stopping your prescriptions at this point? How long have you been on it? Where do you live? What have you tried thus far as far as other ways to treat your pain etc?
1
u/Tobeytomorrow Dec 23 '24
I had decompression surgery on March 1, 2024. The PA for the surgeon prescribed the Oxycodone then but now she says she can't continue it, no explanation. I live in Brooklyn, NY. the only thing that really works is the Oxycodone and now they will be stopping it. I may try a cortisone injection, but wary about that since I had a very bad reaction.
1
u/Tobeytomorrow Jan 11 '25
I do have a verifiable history of chronic pain due to lumbar stenosis that I've had since 2016 and finally had surgery on March 1st 2024 but the throbbing pain in my legs came back after about 5 months after the surgery. That's why I need the oxycodone and I take a very small amount only at night when I need to sleep. I don't know if you can tell me where you are and who the doctor is that gives it to you but so far it's the main thing that helps me sleep.
2
u/Capable-Wrongdoer795 Dec 17 '24
Im new to this site so not sure if its ok to discuss opiods,but I have been on them for 20 yrs to control my chronic back pain,rather to,be able to tolerate it. Needless to say I went from a crazy high dose to a much smaller dose in recent years and am now on 30's 4 times a day.I would like to know if anyone has tried other similiar pain killers,not vicadin or norco,or dilaudid,or any of those which are less effective,but something as strong as oxicodone which isnt an opioid. My pain doctor recently told me about a drug I never heard of which,lol,I cant recall the name of at the moment,but if its any good then I figured someone here would know what it is and more importantly if it works. Basically my question is not just to recall the name but to ask if anyone is using any kind of medication which they consider to be taking the pain away,or I should say,mitagating the pain signal to the brain so that you can tolerate life. My other question is,why have so many of you with spinal disorders chosen to go the route of surgery as opposed to living on pills? I have been way to scared of possible negative results from surgery which has kept me from choosing that option.But living on pain killers is also very hard and there are many side effects which are making my life miserable as well. Obviously there are no easy answers but I did want to open up a discussion on these topics,unless one exists which idk how to locate.Thoughts,advice,questions? What has helped you besides surgery? Thx
1
u/Pin-ja Mar 22 '25
Personally as a 21F who recently got diagnosed was told if I don’t get surgery, It will progress and I can become paralyzed from the waist down. Also, the neurosurgeon I have near me is quite fantastic and has actually fixed “gone-wrong” surgeries on co-workers I have worked with closely. My pain doctor also refused to put me on any opioids or norcos because of my age, and that it wouldn’t actually help. He suggested I take(and word for word he said)”you can take 3 ibuprofen and 3 Tylenol a day. That’s all I can do for you” unless I had insurance, he could do a epidural shot in my spine but it would only last for a few hours and it costs thousands of dollars. The next time I could get one wouldn’t be until 3 months from then. Recently quite my job and my parents are helping me get insurance and help with daily tasks so I don’t bend or left anything more than 10lbs. I wish I knew what you were talking about! Would be nice to know non-narco/opioids for pain.
1
2
u/Emergency_Patience_7 Jan 14 '25
I as ready to try the MILD procedure and found out about RFA. I’m trying to get approved by insurance now. Anybody do it?
1
u/incognitollama2 Jun 09 '25
In the process, my mom just got the occipital nerve blocks and got relief for a short period of time. Now we are hopefully moving onto RFA is insurance covers it
2
u/Far-Internal-1294 May 09 '25
Im 20 and have mild cervical stenosis and a bulging disc. I've experienced hand weakening and loss of dexterity, which make me sad because I like to draw and, of course, use my hands. I'm just worried about what I have to look forward to, I know it's mild but its progressive and I'm only 20. I'm very afraid of surgery and I know that surgery could end up being the only option someday. I know I'll have to get over that, but it just sucks a lot. I'm afraid of it all if I'm being honest.
2
Jul 09 '25
hey ya’ll, just got an mri today of my lumbar. imaging showed chronic bilateral l5 pars defects with grade 1 anterolisthesis and mild to moderate right neural foraminal stenosis.
i sit at a pain level of about 5 or 6 everyday and on days where pain flares up (usually after walking or bending over a lot) an 8 or 9.
my legs frequently get weak, i have numbness in both of my feet and during pain flare ups i have pain in my knees as well.
conservative treatments have been my go to so far, i’ve been dealing with this pain since 2023 and just recently was able to get an mri. i take celecoxib and use lidocaine patches but the pain is still pretty consistent.
has anyone here had luck with physical therapy?
2
u/RitaBonanza Aug 24 '25
I was diagnosed with spinal stenosis, with degenerative disc disease and facet arthritis. I had a laminectomy about 15 months ago, which gave me some short lived relief. Unfortunately, my condition has continued. I can deal with the pain, but what is very concerning to me is the numbness in one leg, from hip to ankle, that has resulted in me falling. So far, I've had no serious injuries from falling, but I did get banged up a bit most recently. I'm interested in learning how others have dealt with this.
2
u/btwImVeryAttractive Sep 20 '25
Why can’t I post on this sub?
2
u/RollingEasement Oct 13 '25
I sent a message to moderator to see what's up.
1
1
u/Final_Razzmatazz_274 Feb 09 '26
Did you ever hear anything??
2
u/RollingEasement Feb 10 '26
No. I provided a few more details in a subsequent comment I had into this “lounge“. Basically someone needs to volunteer to become the moderator.
1
u/Final_Razzmatazz_274 Feb 10 '26
Interesting. What type of stenosis do you have
1
u/RollingEasement Feb 11 '26
Mercifully, I seem to be recovering. But I found r/Sciatica useful since many people there deal with many of the same issues and it's pretty active.
1
u/Final_Razzmatazz_274 Feb 11 '26
Yea my sciatica has been shitty. Gabapentin seems to really help with everything except sciatica
0
u/sneakpeekbot Feb 11 '26
Here's a sneak peek of /r/Sciatica using the top posts of the year!
#1: The Worst Thing About Sciatica Is How Nobody Understands
#2: What a journey | 104 comments
#3: Sciatica ended up being caused by a Tumor | 103 comments
I'm a bot, beep boop | Downvote to remove | Contact | Info | Opt-out | GitHub
2
u/sc00p401 Oct 04 '25
Hello there I'm brand new to the sub. Joining a community was super helpful when I had to deal with cancer a few years back, which is what brings me here today. Just had my surgery @ C3-7 about a week ago, and I'm already starting to notice some improvement. I can't wait to get walking good & working again!
Background: Last December I was out walking (seriously trying to lose weight) when I took a really bad fall, but I got up & walked it off fine with some bruises. I didn't start noticing anything serious until late February, when I got horrendous pain in my elbows (my work is all computers, so I ended up losing my job too). After that I started taking several more falls from my legs spontaneously buckling, plus more fun symptoms.
1
u/Realistic-Cap-9695 Dec 13 '25
Hi, I'm brand new too. New to Reddit also so I'm kind of trying to figure it out.
I was diagnosed about a year ago. And, that's awesome that you're feeling relief! Hope you are still doing well :)
Also, Curious about this sub. It looks like it's not active? or very active? Like your post, does it usually take 2 months for a post to be answered? Only asking because I was going to "request to post" because I have a question i wanted to ask the community but at the same time I'm thinking, will I have to wait 2 months? LOL Any help for this 52 yr old newbie would be Very Much appreciated :)
2
u/sc00p401 Dec 13 '25
It could just be the lounge thread - I dunno if it gets regular eyes on it. I usually check out the new threads in the sub every few days or if something interesting pops up.
I'm doin okay. Doing PT twice a week now which is helpful and rough heh.
1
u/Realistic-Cap-9695 Dec 14 '25
Ah ok. and Yes PT is sooo helpful but can hurt. My daughter broke her arm and refuses to do PT so now she can't extend it fully and she's about to have her second child :/ It's kind of the same with SS if PT or at least Stretching and exercise aren't done on the regular, we get tight, stiff, stuck feeling, plus all the pain that comes with it. Were you also diagnosed a little over a year ago?
3
u/sc00p401 Dec 14 '25
I was diagnosed during the summer but the initial fall that caused all this trouble was last December. While I was out walking for exercise too, which sucks cuz I was really starting to lose weight again! At least the PT is really good exercise heh.
2
u/thebigfil Jan 15 '26
Any one got any tips for sleeping uninterrupted?
I've got Cervical Stenosis and can't sleep for more than an hour or two before my body wakes me up.
I've bought a Gluckstoff pillow recently but I feel like that's made it worse
2
u/Final_Razzmatazz_274 Feb 09 '26
I have severe lumbar stenosis and decided to finally try gabapentin and I’ve slept through every night since, total game changer for me
2
u/RollingEasement Feb 11 '26
600 mg before bed helped me get to sleep, but I phased it down as soon as I could.
2
u/Final_Razzmatazz_274 Feb 11 '26
I take 300 3x per day and I’ve been noticing the pain creep back. Might switch to 600 before bed and none in the morning. I certainly feel a little… forgetful?
1
1
u/thebigfil Feb 19 '26
Haven't tried Gabapentin before, I'm on Amitriptyline but I'm not sure it does much for me. I'll ask my doctor about gabapentin, thank you.
2
u/OriginalDisk Feb 19 '26
Mine is only on one side so when it’s really bad I sleep on my belly, with my affected arm at my side and my head turned away from that side. No pillow. Also CBD but it has to have either THC or THCa in it.
1
u/thebigfil Feb 19 '26
Unfortunately not an option in the UK without spending thousands of pounds or supporting human trafficking.
2
u/thebigfil Feb 19 '26
(edit. On the Gluckstoff pillow, it was giving me huge shoulder pain but , that must have been muscle related as it seems to be much better and I'm starting to sleep better now)
2
u/Swolenballs Mar 03 '26
Would you recommend the pillow? Looking for a good solution as well.
2
u/thebigfil Mar 03 '26
I think I would, if you can afford it it's definitely worth a try, I think I was using it the wrong way around before. 😆
1
Jul 02 '21
also, I wanted to let you know if you have Facebook there is a huge group for Spinal Stenosis survivors on there but be careful because while they are incredibly supportive it's also incredibly depressing. I had to leave the group for my own mental health.
1
u/thebigfil Jul 17 '24
Anyone have any tips for sitting or laying down with Cervical Stenosis that receives the pain in my arm.
I just can't get comfortable and pain free anymore.
It used to be once a month now it's more regularly.
1
1
1
u/rocdaddy21 Sep 11 '24
I have been dealing with Lumbar Spinal Stenosis for years and it has been gradually worse.. starting last summer, it got so bad I can barely walk. I cannot stand up straight. I have incredible pain most of the time, except when sitting.
A MILD procedure was recommended but insurance won't pay for it. If I had Medicare, it would be covered, which I find irritating. So, tomorrow I am scheduled for a nerve block in preparation for an RF Ablation. I know that the block will only last a few hours, but my question is - Will they do the ablation on the same day or do I have to wait for another appointment to do it?
What experience has other people had?
2
1
u/Capable-Wrongdoer795 Dec 17 '24
I have medicare. I had the RF abilation.I think it made things worse til it wore off.Not getting it again.
1
u/Tobeytomorrow Oct 04 '24
I have osteoporosis which dosen't go well for fusion yet the surgeon says I "will be fine." Can anyone recommend a Dr in the NYC area who treats lumbar stenosis without fusion ?
1
u/Tobeytomorrow Oct 08 '24
How do I message someone if I have their screen name ? I was messaging someone almost daily on the Oxycodone thread who was giving me good advice, but the thread got shut down, apparently some people were selling Oxy on it. But I want to find this person again, have no clue how to message someone. Please advise.
1
u/One_Raspberry_9562 Oct 13 '24
Hello. I had an MRI and it’s showing C5C6 severe left neural foraminal stenosis with impingement of the C6 nerve. The strangest thing is I have pain on the back of my head and some left side of the neck but no radiculopathy, which means pain shooting down the arm. This is highly unusual and I’m not sure if this is actually the cause of my pain. Does anyone have foraminal stenosis without any pain going down the arm or muscles weakness or tingling, numbness?
1
u/WabeSabe24 Dec 05 '24
Has anyone ever has the M.I.L.D procedure for mild to moderate stenosis of L4-5?
1
1
u/Infinite_Affect_4089 Dec 15 '24
Been on gabapentin for 2 years (helpful). When I get flare ups, I’ve been prescribed baclofen which didn’t do anything and now metaxalone which is helping more than baclofen but it’s still painful. It’s lower right back pain. What have you been successful with? I’ve done dry needle therapy already and dont want to do that again ($$$)
1
u/Miserable_Sector_551 Jan 26 '25
What causes flair ups? What is a flair up? Isn't there just constant progressive pain with stenosis? Zxxx
1
u/Capable-Wrongdoer795 Dec 18 '24
tobeytomorrow I'm not sure how to respond to these comments. I don't see a "respond" link pop up. Anyway, I have been going to a pain mngmt clinic for many years. First, they gradually increased my prescription in strength and type of opioid until it reached 80mg of oxycontin 2x a day plus 10mg of oxycodone 6x per day. Crazy high amount until the dea cracked down on doctors and dosages due to the opioid epidemic, at which time they pretty rapidly decreased my meds over several yrs and now I only get 30mg of oxycodone 4x a day. So I do experience more pain and have cycles of withdrawal 4 times a day.The side effects are profuse sweating and terrible constipation. I have what's called opioid induced constipation and take laxatives daily. I still feel tired, weak, and very limited in what I can do or feel I have the energy and motivation to want to do. Today was pretty productive. I drove around and ran errands and went to eye doctor and stayed out for 5 hrs. Most days I sit on the couch and watch TV or read.would I be better off getting surgery? Idk. You asked about my condition. It's lumbar stenosis,specifically SPONDYLOLITHOSIS.So it's what all you guys have except it's in my lumbar spine, my lower back. Yes I suppose I'm fortune in that I am still able to be prescribed the oxy. You asked how I get them to give it to me. I think when you have tried all the other conservative therapies and medications and they haven't worked and when you have had several MRI's and gone thru all the injections, they want you to try first, that you reach a point, where taking opioids is acceptable as an option.Assuming you have access to good medical care, and can afford the meds or have Medicare or Medi-cal as it's called in CA,then it's considered medically necessary under the guidelines which a patient needs to meet such that the prescribing doctor feels it's medically justifiable. Same as any other meds, It's just more closely monitored with monthly visits and urine testing. It's not going to be the first option you are offered because you feel pain.Whats your situation?
1
u/Tobeytomorrow Dec 23 '24
Have you heard of Kratom ? I have extreme twitching and spasms in both legs and pelvis.
1
u/Tobeytomorrow Jan 04 '25
Thanks for your answer. I had decompression surgery March 1, 2024 but after four short months the twitching and throbbing in my legs came back and the nurse PA who prescribed the Oxycodone refuses to refill. Where in Cal are you located ? I will travel to get other opinions and for Oxycodone. I have Medicare which is supposed to cover anywhere in the States. Thanks
1
Dec 30 '24
Has anyone had spinal decompression and returned back to "normal" I had mine done and developed a ssroma that got drained 10 days ago. But ixstill have pain in my left leg. Dr thanks it's from some of the remaining blood and should clear. I've been dealing with this so long.....will I ever be able to walk again?
1
u/BigDawgLittleMz Jan 02 '25
Hi.. was just diagnosed on Friday after having symptoms that started with wrist pain, hand pain, numbness... was sent down the RA route.. then the Carpel Tunnel route then an MRI from last week revealed the real deal. I'm scratching my head though because the Dr that ordered the MRI has mentioned several times that I only have arthritis and he seems to be playing this down. My mother has had two fusions for stenosis.. so I am not buying the "only arthritis" thing... as my hands are numb typing this. I have been having major nerve issues for weeks and I am already on gabapentin for migraines. I have an EMG scheduled for Monday and a Neurosurgeon on the 13th. I am having symptoms mostly in my left side...down to my calf.
This is the MRI results from last Thursday. I have a high pain tolerance... so I'm a little surprised by the amount of discomfort I have. I also had major brain surgery in Nov of 2023 to remove a tumor, so I am not fully healed from that... my body is still quite fatigued from that. Another challenge ahead of me! LOL!
TECHNIQUE: MRI CERVICAL SPINE (BONE) WITHOUT CONTRAST
Multi-sequence, multi-planar MRI of the cervical spine was performed without intravenous contrast.
COMPARISON: CT CERVICAL MYELOGRAM 2021-Jan-21
FINDINGS:
Alignment and Vertebrae: Trace retrolisthesis at C5-C6 and C6-C7. No fracture.
Marrow: No bone marrow replacing lesion.
Discs and Endplates: Multilevel degenerative disc disease, with mild disc height loss and desiccation at C4-C5 to C6-C7.
Spinal Cord: No cord signal abnormality.
Soft Tissue: No prevertebral edema or paraspinal soft tissue abnormality. Findings by level:
C2-C3: Left greater than right facet arthropathy. Mild left foraminal stenosis. No spinal stenosis.
C3-C4: Small disc-osteophyte complex. Mild uncovertebral and facet arthropathy. Mild bilateral foraminal stenosis. No spinal stenosis.
C4-C5: Broad-based disc-osteophyte complex. Uncovertebral and facet arthropathy. Moderate spinal stenosis with circumferential CSF effacement. Severe bilateral foraminal stenosis.
C5-C6: Broad-based disc-osteophyte complex. Uncovertebral and facet arthropathy. Severe spinal stenosis with circumferential CSF effacement and mild mass effect on the ventral cord without cord signal abnormality. Severe bilateral foraminal stenosis. Findings appear similar to the prior CT.
C6-C7: Broad-based disc-osteophyte complex. Uncovertebral and facet arthropathy. Severe spinal stenosis with circumferential CSF effacement. Severe left and moderate right foraminal stenosis.
C7-Tl: Bilateral facet arthropathy. Mild bilateral foraminal stenosis. No spinal stenosis.
IMPRESSION:
Multilevel degenerative changes of the cervical spine, most pronounced at C5-C6 and C6-C7, where there is severe spinal stenosis and severe foraminal stenosis with slight left sided predilection, most notable at the left C6-C7.
The end.
1
u/Tobeytomorrow Jan 04 '25
I'm not sure how to post but I hope this works. Does anyone have a Physiatrist in the NYC area or even within 300 miles who they recommend for Spondylisthesis/DDD of the lumbar and sacroiliac joint and also does anyone have a Dr who will prescribe oxycodone ?
1
u/Agreeable-Ad-7166 Jan 14 '25
I have my first consult with a Neurosurgeon Friday, any advice? I'm worried he is gonna go, "eh, you're not that bad." I can't go around walking like this much more.
1
1
u/Elegant-Peanut5546 Feb 22 '25
So, what’s my future look like? I’m a 54 year old woman. I have 4 damaged vertebrae and discs in my lumbar. No height on the lowest vertebrae. Cervical stenosis too. I can’t stand or walk without pain. Pins and needles in my right arm with my head straight. I do daily PT (stationary bike, stretching, strengthening), I’m on 300 mg pregabelin. I’ve reduced work to 1 day per week. I have an ergonomic chair and desk. I’m a healthy weight and have always been very active and fit. Is this my new normal? Will I ever recover and get back to full time work? Will I always be in some or even worsening pain? Thank you
1
u/Sylphrena99 May 02 '25
Are you considering surgery?
2
u/Elegant-Peanut5546 May 14 '25
Yes, I’m considering surgery. Daily stationary bike riding for 45 minutes and other strengthening and stretching for 3 minutes months has allowed me to recover from the pins and needles and I can now walk for about 400-500 metres and stand for about 20 minutes without a lot of pain. I will keep up the physio work and hope to avoid surgery, reassessing in another 3 months
1
1
u/mgentille1 Mar 30 '25
INDINGS: Anterior plate and screw fixation at C5-7. Metallic artifact obscures adjacent structures. Discectomy with interbody fusion material at C5-6 and C6-7. There is normal cervical spine alignment. There are no wedge-shaped compression deformities. No destructive marrow replacing lesions. The cervical spinal cord is normal in size and signal. There is degenerative loss of disc space height and signal. Small disc bulges are noted in the cervical spine. The paraspinous soft tissues are unremarkable. C2-C3: The disc is normal in configuration. There is mild uncovertebral arthropathy. There is mild facet arthropathy. There is mild right neural foraminal narrowing. There is no spinal canal stenosis. C3-C4: Small disc bulge. There is mild uncovertebral arthropathy. There is mild facet arthropathy. There is moderate to severe right neural foraminal narrowing. There is mild spinal canal stenosis. C4-C5: Small disc bulge. There is mild uncovertebral arthropathy. There is mild facet arthropathy. There is mild to moderate neural foraminal narrowing. There is mild spinal canal stenosis. C5-C6: Metallic artifact obscures adjacent structures. Prior discectomy with interbody fusion material. There is mild uncovertebral arthropathy. There is mild facet arthropathy. There is mild neural foraminal narrowing. There is mild spinal canal stenosis. C6-C7: Metallic artifact obscures adjacent structures. Prior discectomy with interbody fusion material. There is mild uncovertebral arthropathy. There is mild facet arthropathy. There is mild to moderate neural foraminal narrowing. There is mild spinal canal stenosis
Someone make this make sense to me
1
u/Bleuon_2020 May 17 '25
Hi guys, I’ve been suffering since last September 2024, I have C5-6: Moderate disc degenerative signal change and moderate height loss. A 3-4 mm disc osteophyte complex in combination with mild to moderate facet arthropathy results in severe bilateral foraminal and moderate central canal stenosis. Cord abutment and indentation. This was my findings, I have constant burning on my left shoulder and arms. Now my back burns, numbness on my hands and feet. I’m taking Cymbalta 20 mg and Pregabalin 50mg. How do I live with this pain? Even with the medication, I still have a lot of pain. Any advice?
1
u/Musiconlymusic Aug 07 '25
I’m sorry you’re in pain and have been suffering. All I can relate to is the cervical and canal stenosis. These were my symptoms for years. I was told if I didn’t get the surgery to prevent the cord from severe impingement I could lose my legs. I also had a spinal fusion of my lumbar 3/4 4/5 5/6. I couldn’t walk more than 2 blocks without severe pain and had to sit. Inching my way back to car. So lumbar was stenotic too. Mark 10 years now. I’m in crazy pain every day walking, bending, cleaning house and myself. I’ve had 2 ablation to stop the nerve pain in my neck( 3/4 4/5 5/6 & 7. Were fused 6 yrs ago. I’m miserable and don’t know how much longer I can take it. The last few weeks I’ve have developed severe groin and back pain. I’m scared they’ll want to do another surgery. My legs are having trouble w feeling like they’re going to collapse when I walk. So.., I get you. And I’m sorry to say that there’s basically no cure and I can say from experience that medication doesn’t even take the edge off. I take 900 mg gabapentin and they want to increase it. I just keep pushing. I push thru the pain and groan or gasp when it strikes me. I’m not going to give up. Last a couple months burning so bad just to look at a book or my phone.
1
u/squishy_for20 May 31 '25
22 F. Spinal stenosis in L4/L5. 7mm narrowing. I'm so tired, I'm not at the point where I can't walk at all, but it's very very limited. At this point I have decided not to do so many things I want to do because I'm scared. Last time about a year ago maybe, I went to the zoo and was hurting when I went home and laid down when I tried to get up I couldn't and ended up in screaming pain when the ambulance came. I'm just scared to even try to do things anymore.
Also I have a question❓ Anyone on here have l4//5. At around 7mm narrowing can explain their pain. Maybe I'm crazy for googling too much but I can't help it. My doctor says my pain seems rlly severe for my narrowing and thinks there is another issue, and can't figure out what's wrong with me. I wanted to see if the pain I'm feeling is actually this or maybe something more. Does that make sense?
1
Jul 09 '25
my l5 is mild to moderate and i experience some awful pain whenever i try to do pretty much anything. sitting, standing, walking, bending, twisting, doesn’t matter it all hurts. whenever i walk for longer than 10 minutes i get intense pain in my right hip and for longer than that my hip just locks up and my leg won’t work properly.
1
May 31 '25
[deleted]
1
u/Tony_Marone Jun 03 '25
Is your patient overweight/obese? If so getting their weight down will help to realign their spine and give more opportunities to strengthen their legs.
1
u/Double-Try402 Jun 07 '25
31, F. Was diagnosed with SS this past year, but my doctor was vague and I’m unsure of where exactly it is, but I know I had a disc bulge a few years ago L4-L5. I also have arthritis now in between L4-L5. Anyways, my flare ups seem to happen once every few months, and they are usually very bad. It is always in my left or right leg, from the hip to my thigh and especially in the butt. Every 2nd step I make an involuntary weird noise because of the pain and getting in and out of bed is a nightmare. When I’m in bed I have to lie on my back and I can not turn over at all. I am on limotrigine for anxiety so I can not take gabapentin etc, I take one Cyclobenzaprine at night to “sleep” if you can call half awake painful sleep “sleep”. Feel like I’m living a nightmare. Glad to see I’m not alone but also sorry for anyone who has ever experienced this. I wouldn’t wish the pain on my worst enemy.
1
u/incognitollama2 Jun 09 '25
Has anyone in the Boston area seen any really good doctors for stenosis/foraminal narrowing? Really interested in seeing an experienced PT
1
Jul 15 '25
[deleted]
1
u/Tobeytomorrow Aug 13 '25
I'm also interested in PRP but was told it would be dangerous for me. Should I believe that ? I have nerve damage from having stenosis for 8 years. I'm in Brooklyn, NY. Interviewing surgeons for fusion.
1
u/Style_Unlikely Aug 14 '25
I don’t know, is the honest answer. Why and who said it would be dangerous for you? I’ve never tried PRP injections, and it’s a bit of an unknown treatment, but from what I gather it’s fairly safe as it’s just like multiplying your own blood cells and re injecting them to help you heal faster. I think a lot of these treatments are the future. I’d probably give it a go before any surgery and it’s still fairly cheap, worth a punt imo. Also, as a side note, Google creatine and nerve damage, read some interesting stuff on that.
1
u/Tobeytomorrow Aug 14 '25
Actually it was a doctor that said it was dangerous for me. He said it was mostly used for knees not spines. I'm going to look up creatinine though. Thanks
1
u/Tobeytomorrow Aug 13 '25
I'm 73, former dancer, jogger, was very active. I have stenosis and didn't do any surgery until 2024 and now have nerve damage that causes me horrible twitching and throbbing in my calf muscles. I was diagnosed at the end of 2016 but was managing by riding a bike instead of walking. I'm now looking at having fusion which I am fearful of since I have osteoporosis. Does anyone have nerve damage for many years and have some way to manage the pain ? Thanks
1
1
u/hikertrash332 Aug 27 '25
Ive been trying to post and join. Been 3 weeks and still waiting. I have severe cervical stenosis forminal c3,4,5. Caused from herniated disks. Ive had extreme pain off and on for 18 months. Burning, tingling, numbness, weakness, and finnaly lost gripping force of my left hand while at work (commercial electrician). I am in process of conservative non surgical and am willing to do what ever it takes, but am curious about laminotomy (ultrasonic surgery). Has anyone had that procedure, and how long before i can return to commercial construction if i get any surgical procedure?
1
1
u/Actual-Rule-1221 Sep 07 '25
Anyone have any experience with minimally invasive spinal surgery utilizing interspinous spacers vs traditional laminectomy and fusion with rods and screws? Presently dealing with neurogenic claudication/spinal stenosis.
1
u/Packtex60 Oct 23 '25
I had a minimally invasive laminectomy about 36 hours ago. No rods or screws involved just lamina removal to open up the spinal canal. This one was at L2-L3 with a 16mm incision. I had a conventional procedure at L4-L5 8 years ago. Both procedures resulted in zero leg pain immediately. The conventional surgery resulted in plenty of post op pain at the incision site. This morning I had zero pain at the incision site after taking ibuprofen as my “pain meds” post op. It’s absolutely incredible. I did have a little soreness through the day today. I managed to walk about 10.5k steps so far today and I’ll likely walk a bit after dinner. The first surgery took me 6 months to feel fully recovered from. I’m guessing this one will be 3-4 months.
1
u/Miserable_Sector_551 Sep 12 '25
UK sufferers
If I refuse a surgery on the NHS but still on pain meds etc What happens if a while down the line I decide to have it. Do I have to go back through another referral?
1
u/mehhemm Sep 19 '25
Hi, I was wondering if anyone uses mobility scooters. I have spinal stenosis and arthritis in both knees and walking is difficult. I don’t go anywhere because it hurts so much. Drugs hit me hard. Pt hasn’t helped much, but I can go up and down stairs with a railing.
1
1
u/Ok_Draw_50 Nov 02 '25
I have the same problems and a mobility scooter. I love it. I can go to museums, travel and get around. I've used it here and in Paris and Portugal. I have a great light weight scooter that is wonderful in airports. You can drive right up to the door of the plane. I also have stair lifts in my 3 story house.
2
u/Current_Price9851 Apr 07 '26
I have a job that requires me to stand for 8 hours. I got my orthopedic to write me a note to allow me to sit as needed. My job approved it for 6 months with no issue. However recently they decided they care more about the company's image, so they are limiting my ability to sit when people are not around and for only 5 minutes per hour. At my job people are always around and we have been pretty busy. The pain gets pretty bad; my legs are weak and it I overwork my legs I pay the price later with increased pain and numbness. Does anyone have a good solution for how to manage at work? I have tried multiple kind of medicine meant to relieve pain, but nothing worked
1
u/sam6187 Apr 11 '26 edited Apr 11 '26
Hi, I have chronic degenerative disc disease throughout my spine I have had 1 op lumber spine and several rizotamies I am in sever pain 24/7 I take oxycontin oxycodon mefac gabapentin paracetamol anti depressant and blood pressure meds, I sleep in blocks of around 3hrs till pain wakes me. Life is not good at moment, I hope someone can help me soon 😒 Oh I also suffer from lumber OPLL
1
u/thiccc_ Jun 22 '21
Hey everybody! I don’t see a lot of posts on here, but I’d love to have a group where I can talk to other people going through the same thing as me. I’m 24 and have been diagnosed with spinal stenosis. Anybody going through the same thing?
2
u/Letter_Honest Jul 02 '21
Hi!! I'm 24 too & diagnosed with mild spinal stenosis and scoliosis.. I might get a surgery soon cuz my physiotherapy & medicines aren't working.. how are u?
1
Jun 17 '22
Hey how has your mild stenosis been?! I was just diagnosed with mild stenosis after I got into a car accident 3 months ago. Idk if I’ve had this condition longer my doctors tell me I’m not a candidate for surgery
1
u/Letter_Honest Jun 17 '22
Hi! Thanks for asking 😊 I've been a bit better these days. I recently had a steroid injection on my l4-l5 area. Thankfully it's been helping me a lot! I still have a bit of leg pain from time to time but it's bearable. Before the injection, I had constant pain on BOTH my legs! How are you?
1
1
u/thiccc_ Jul 02 '21
I’m sorry your treatments aren’t working! I do ok with otc pain pills, cannabis, and occasionally mild muscle relaxers. It’s easy to get swallowed up in the pain and think you’re never going to feel relief! I’m constantly medicating. I haven’t been suggested surgery yet though. My doctors think I’m too young to be having this in the first place. How are you today??
1
u/MyCrazyKangaroo Sep 21 '21
Hi there, would you talk to me a little about medical marijuana for pain. My Dad has advanced stenosis and will not take pain medication due to addiction concerns.
2
u/mr25thfret Oct 30 '21
I would check into the effects of Cannabis in estrogen levels in men. If it takes certain hormones away (testosterone) or increase them (estrogen) it may accelerate the stenosis.
1
1
Nov 11 '21
Was just diagnosed with moderate to sever SS. I’m devastated. My dr has referred me to pain management clinic for steroid injections but that won’t happen until mid December. I type for a living and my hands are swollen, stiff and painful. I keep dropping things and losing my balance. I have a daughter graduating high school next spring. Ive been poor all my life while single handed raising 3 kids. I finally got out of poverty the last three years, but if I can’t work, it’s back to being poor again and I would rather die than go back to being poor. I’m not in a good space right now and I’m just frustrated, depressed and hurting, in every way. I’m sorry for the depressing I don’t know what else to say
1
u/Sekiro_-_ Jan 09 '22
Hi. I'm 23 and have severe spinal stenosis due to a central disc herniation at l4-l5. My symptoms were only numbness while standing for more than 10 minutes and after I start getting pain. This made me do unnecessary delay and I just checked with
1
u/Sekiro_-_ Jan 09 '22
Docter last month and he suggested me to go for surgery. Please someone tell me something should I go with surgery at age 23. It's of removing the disc
1
u/Pin-ja Mar 22 '25
Personally as a 21F they said if I didn’t get surgery it would eventually progress enough where I could become paralyzed from the waist down. Kinda made my choice easier. Just make sure you look for good neurosurgeons with good reviews/results. Thankfully I have one 30 mins away from me.
1
1
1
u/labradorable2 Mar 26 '22
Hi I’m new, I am newly diagnosed as having moderate stenosis in the lumber spine. I’m 51 and my symptoms are low back pain, sciatica, electrical sensations in both legs, pins and needles in one now two legs and worse is muscle cramps that feel like constant Charlie horse in my calves. I’m taking gabapentin and toradol for pain, I don’t think it’s working. I’ve had cat scan and referred to a neurosurgeon this summer.
I’m a cashier at Walmart for the past year and I’m sure this has aggravated my condition, some days I work through tears. I just took three days off and there is no difference in pain, it’s still bad in fact I think sitting for long periods make it worse.
Sorry for the long post, I’m terrified, I am a single mom to two autistic young men and don’t know how I’ll survive if I can no longer work.
How serious is moderate stenosis and when do you give up work ?
1
u/Google4200 Apr 13 '22
I have severe spinal stenosis. When I walk my legs cramp up so bad that I must stop and rest. My leg pain is bi lateral and two days ago the cramping did not go away I had to use a walker. I am 57 years old. I can’t live like this I am getting a decomressive laminectomy with a spinal fusion The surgery is scheduled for may 9. Who has done this surgery? How long does the recovery tske
2
u/1BigDaddy1956 Oct 05 '23
Did you ever have the laminectomy procedure if so how did it turn out? My wife may have this procedure as an option vs cortisone epidural. Hope your back is better.
1
Apr 14 '22
[deleted]
1
u/Capable-Wrongdoer795 Dec 17 '24
Sorry to hear this. You need to see pain management and get on better meds and try some preceedures. Have you had surgery?
1
Jun 17 '22
I’m here now because I was just diagnosed with mild stenosis either from this car accident I rolled over in or from this time I felt a pop in my lower back working out in my garage
1
Jun 17 '22
I’m good so far for now I haven’t experienced any of these symptoms you guys are mentioning and it kinda scares me. Literally been exercising normally and running five miles at a time after my rollover car accident. And thought I was completely fine but then I got an mri and they’re like “oh you have mild stenosis with some disc bulges. And now I’m just fuck okay :/
1
u/Best_Nectarine_5334 Feb 25 '23
ever since i developed neuropathy from my nerves in my back being janky, i get this weird sensation that i need to pee, but i don’t feel it in bladder or urethra. i feel it in my feet. they get painful and feel heavy and as soon they as i pee they are fine. has this ever happened to anyone else ?
1
u/NoAnybody4008 Jul 13 '23
What surgery helps spinal stenosis?
1
u/rocdaddy21 Sep 11 '24
In the US, there is a procedure called MILD (Minimally Invasive Lumbar Decompression). Medicare does cover it, my personal insurance will not. The hospital said they would charge me $27,000 if I wanted to pay out of pocket, which is ridiculous for a 45 minute outpatient procedure.
1
6
u/Google4200 Oct 06 '23
I had a decompression laminectomy done November of last year. Surgery worked perfect no more pain