#Spinal stenosis

[dissociacrip]

does anyone else with lumbar spine issues (specifically DDD, foraminal stenosis, bulging discs, and idk what me having slightly diminished T1 marrow signal implies for me at all lol) have experience with like, disabling back and leg problems with only mild findings of everything on imaging? i know that severity of findings doesn't always equate to severity of symptoms so at what point do doctors start taking the mild stuff seriously outside of emergency-type signs like loss of bladder control?

sitting is very often uncomfortable, my legs start pitching a nerve-fit if i like sit on the toilet and lean forward, in recent weeks it hurts to walk on and off in various parts of my legs sometimes bad enough to seem like my legs themselves or something are injured in the absence of trauma but that might not be related to my spine, sciatica symptoms in one leg triggered by activity or sitting, etc.

like are they just gonna laser in on the bulging discs (one has annular fissuring) and ignore everything else or something like that, i'm only 25 and turning 26 soon so "age-related degeneration" is gonna be pretty generous aside from the fact my congenital hypotonia never seemed to have magically gone away so my muscles likely haven't been supporting my body properly my whole life lol

i'm literally on oxycodone right now since i'm recovering from a surgery and sitting still hurts so i guess i just can't win

EDIT: if you've left the one (1) comment this post has i can't see it because i either have you blocked or you have my main (daevite) blocked or something, try dm'ing me somewhere or sending an anon if possible?

[chronic--experiences]

Chronic pain vent:

We’re approaching my favorite time of the year and I’m reminded on how much I’m missing out on because of my pain. I adore hiking, especially during the colder months, and it’s absolutely beautiful outside right now. Yet I can barely walk through a grocery store, let alone a hiking trail right now.

When I first started using my cane I thought it would only be for a few weeks, and here we are, months later. Things just seem to be getting worse and I miss doing the things I used to love doing.

My friend joked that she’d get me a wheelchair and she’d push me around the hiking trails, but honestly that’s a worry of mine. I barely wanted to start using a cane out of fear that it would mean that I was somehow accepting my disabled identity.

I’m not ashamed of being disabled by any means, but at the same time it’s a hard label to accept. I don’t want to think about how I might not be able to do these things anymore. I don’t know if that makes any sense. Wheelchairs and canes are for people who struggle to walk, and I don’t want that to be be (even though it already is.) I keep waiting for a miracle, hoping that each treatment my doctor tries will magically give me my old life back.

Anyway… I miss hiking. Thats really the gist of it.

[nikkeisimmer]

Access to Internet Restored

It will be a while before I get back to the story-line of my "The Chikamori Legacy". But finances have stabilized but I have to get onto disability welfare since I now have a diagnosis of severe "spinal stenosis" which is a major effect of my accident back in 2006 that affects my every day living nowadays.

Not only is it lumbar, but thoracic and cervical as well since I hit my spine in three places when I fell down the stairs outside.

My symptoms include:

Back pain

Numbness, tingling, cramping, or weakness in the legs

Loss of sensation in the feet

A weakness in a foot that causes the foot to slap down when walking. This is also called foot drop.

Severe or increasing numbness between legs, inner thighs, and back of the legs

Severe pain and weakness that spreads into one or both legs. This makes it hard to walk or get out of a chair.

Neck pain.

Numbness or tingling in arm, hand, leg or foot.

Weakness or clumsiness in arm, hand, leg or foot.

Balance problems.

Decreased function in hands, like having issues writing or buttoning shirts

The doctor has ruled out laminectomy due to it only being effective in 50% of the operations and I have expressed not wanting to lose what little mobility I have left as a result of a procedure that may or may not work.

Thank goodness I can still type although not for long periods of time due to the fact that it pains my hands and causes even more numbness and tingling.

So now, I have to apply for disability and that is going to be a joyful experience (note my sarcasm - it'll be anything but).

I have good days and bad days and well...it's hard to tell when I wake up whether it's going to be a good day or a bad day.

But thank goodness for my Star Wars the Old Republic games and my Sims 3.

...and maybe I'll get back to a semblance of "living"...at least managing the pain and the dizziness from this physical disability.

The way I look at it is.

Every day I open my eyes is a blessing.

We're not promised tomorrow.

[amireallythatcomplex]

Yesterday marked one year post Cauda Equina Syndrome diagnosis, and I had lots of cuddles from my Frenchie puppy because she knew I was upset. Then I went swimming (did my physio exercises, some walking and a tiny bit of "swimming") and walked around part of Decathlon with my mum and nieces. In the afternoon I drove (driving using hand controls rather than my legs feels so natural now) to my friend's and we went to Nando's and had a great time (and I showed off my new CESCI beanie). Then I did my first solo shop at Lidl in my wheelchair (and got soaked getting it in and out of my car).

I was stared at by lots of people whilst using my wheelchair, but I'm proud to use it. Being ambuplegic isn't bad, so why should I care if people comment on me moving my legs or getting out of my chair and taking it apart to put it in my car? Yes, I can walk, but it hurts, and sometimes isn't safe (like yesterday when it was raining badly and Lidl's floors were very slippy and I could've fallen if I'd gone in there on my crutches).

Now I'm in a fair bit of pain and pretty tired after such a busy day (for me, I did 1,342 steps and 1,501 pushes, smashing both my targets). Another positive is that I've been out of the house for the first time in months without wearing incontinence pads and not worried about having an accident because my bladder is getting stronger using the flipflow valve on the catheter, and the Peristeen bowel irrigation is working.

Now just to get through all the emotions today (and the coming week) is going to throw at me since it's the anniversary of my L5/S1 decompression (the surgeon said they were only able to remove about 80% of the compression off my spinal cord) and discectomy. And the potential PTSD caused by my stay on D8 at QMC Nottingham, especially after they nearly killed me with a latex catheter despite knowing about my latex allergy!

[brunchbitch]

So I’ve had three PT sessions so far as sort of a tune up for my back issues. I’ve been surprised at how much weakness I have in certain muscles (especially around my hips). It feels like each time I go in, she has to make the exercises even more basic to try to limit pain. And it’s so frustrating - with my job, it’s come into even starker focus how young I am to be having these issues. I spoke to my PT about that and she was like “yes you are young, but you also have a lot going on in your back”.

Today she gave me this thick belt thing that I could wear daily to stabilize my sacroiliac joints (basically sits low on my hips). I was hoping it wasn’t what I needed bc it reminds me of back braces (though obviously much much smaller and less noticeable) but as soon as I put it on, the lower back pain on my right side disappeared. I won’t wear it to bed (whereas the back braces I would) so that’s nice, and it’s just a temporary thing while we’re focusing on strengthening the muscles around it, AND it’s amazing that something so small could help my lower back pain, but it’s still hard to come to terms with.

When I was 12 and approaching this massive life changing and life saving back surgery, the surgeon told me I would be able to do everything after the surgery that I did before, with the exception of something like gymnastics or very high impact sports like football. But I started running at age 16/17 and got a stress fracture in three vertebrae right below where the fusion ended, and since then it feels like I haven’t been without some sort of pain throughout my back/neck. I was reading back through some of my medical records and I didn’t realize that even after the fusion, my curves are still 24 and 35 degrees I think? Which would be significant curves for someone who hasn’t had surgery. My PT has told me definitively that I will need surgery to extend the fusion in my lumber/sacral joints; it’s just a matter of when. I hope to put it off for as long as possible, but it feels so defeating and scary to think of how much more my mobility will be affected. And my ED brain is definitely using this as a way to argue that I absolutely need to lose weight to support my skeletal/muscular system.

[blondetta]

Spinal stenosis 2, April 2024

[neuroticboyfriend]

This is a genuine question but would epilepsy fall under neuropunk? I just haven't looked into it fully and at a distance the community is mostly focused on autism/ADHD. It's confusing because it's a thing that isn't the same kind of punkness as my ADHD/BPD with NPD traits stuff. It's something else entirely. More physical than my BPD but less physical than hEDS, if that makes sense. Feels somewhere inbetween.

yeah, it would! nonpsychiatric neurological conditions count under neurodivergent (what neuropunk is based around). that's the cool thing about the term neurodivergent - it doesn't draw a line between "physical" and "mental," or encourage conditons being boxed into one or the other.

for example, I'm neurodivergent for both my schizophrenia and my spinal nerve condition. i'm neurodivergent for both my autism and my involuntary movements (which ,I don't know if they're seizures or from the spine condition). etc. etc. and i can be neuropunk in relation to all of these things.

[fin1915]

I'm here to ask my SPN family for some help.

Two weeks ago, I had major back surgery. This was my fifth surgery in three years. I'll need to be off work for three months. Since I didn't have an option to delay my surgery, I have no savings. This begging for money is creating some self-loathing. The only solace I have is that I've always tried to pay-it- forward or "do one good deed," etc. I work with autistic teens in a residential treatment program. I was a Cub Scout leader for a few years and a Girl Scout leader for more than 10 years. I've participated in service projects and volunteered at community events. I'm the type of person who keeps dozens of pairs of gloves in my car to pass out to the homeless in winter. I have always tried to be helpful whenever I can. So, I'm hoping if you have it in your means to donate to my medical bills, it would be so helpful and would warm my heart. Even if you are not in a situation where you can send money, I understand that so very well. I humbly ask you to share this with your page and any community pages or other social media that you are able to. Thank you.

https://gofund.me/b913fd37

VENMO @Findlay19

PAYPAL @findlay1915@yahoo.com

[kyanoscanary]

um ... If anyone has a moment, can you leave some suggestions about addressing new symptoms with your doctor? Especially people who have had their doctor attribute new symptoms to an existing condition you have. Hopefully this make sense

[groverarms]

Up for my morning coffee and cry. FUCK it hurts.

For a hot minute, my bitterness had me wishing my chronic pain on my naysayers, but then I really WOULD become a supervillian out to destroy humanity. My body is destroying mine.

I think I need another MRI. I'll be paralyzed by the time im 60 and I'm no longer afraid of it because I'll hurt less. That scares me more.

Dr. Teeny says I can't feed and play with her properly from a heap on the floor so I gotta go back to the neurologist. Plus more nerve loss is more bladder control loss and I'm supposed to smell like her, not old lady pee.

Don't hate your body. It will seek revenge.

[kaidraws69]

Might have to get surgery in the future. Not looking forward to it

[chronic--experiences]

After years of putting it off, I finally got my first cane.

Definitely having mixed feelings about it. I’m worried about judgement coming from people who have seen me move around without a cane, and people claiming that I’m faking a disability because I’m young.

At the same time it’s such a relief to have something that provides me with more stability while moving around. My left leg has gotten so weak and I’m constantly scared of falling after my leg has given out multiple times (once on a flight of stairs)

I’ve got great friends who are super supportive of me finally getting a mobility aid and are willing to fight anyone who looks at me funny, but it’s definitely going to get some taking used to.

[daddysmusicblog]

How did you end up with so many spine issues at such a young age?

Well, this doesn't have a short answer. A lot of my issues are genetic. All the males in my father's bloodline have degenerative disk disease in varying levels. Mine was discovered after an accident. I was hit by a semi walking across a parking lot, and he didn't see me. It ruptured two disks. While they did films of the injury, they found out how extensive the degeneration was. I was 22 years old when I had my first surgery. The other part of the injuries was normal wear and tear. 4 years of high school football, baseball, 3 years of hockey, and 2 years of steer wrestling. I'm sure those didn't help, although I wouldn't trade any of that. No regrets. So far, at 40, I have had a fusion of L5 all the way down and my C6/C7. It's been a ride.

[amireallythatcomplex]

(Left) 15.08.24 marked 1 year since my Cauda Equina Syndrome diagnosis, ft my Cauda Equina Spinal Cord Injury beanie 💚

(Right) 16.08.24 marked 1 year since my L5/S1 decompression and discectomy at QMC in Nottingham

Küschall K-Series 2.0 chair and Ossenberg comfort grip crutches. Ambulatory wheelchair users exist! I'm #ambuplegic In other words, I'm an ambulatory partial paraplegic because of the nerve damage to my bladder, bowel and legs - I have patchy feeling in parts of my legs/feet and reduced motor function and balance, plus lots of nerve pain. The crutches are for use around the house and short distances walking; the chair is for longer distances or where walking would be dangerous e.g. I used my chair in Lidl on my diagnosis anniversary (despite it taking longer to get it in/out of my hand controlled adapted #Peugeot308 because it was raining badly and the floor was way too slippy for crutches despite me only wanting 3 things - it would've been painful and slower to walk around the shop even if the floor had been dry).

[findlay19]

I'm here to ask for help from my Gubler friends.

Two weeks ago, I had major back surgery. This was my fifth surgery in three years. I'll need to be off work for three months. Since I didn't have an option to delay my surgery, I have no savings. This begging for money is creating some self-loathing. The only solace I have is that I've always tried to pay-it- forward or "do one good deed", etc. I work with autistic teens in a residential treatment program. I was a Cub Scout leader for a few years and Girl Scout leader for more than 10 years. I've participated in service projects and volunteered at community events. I'm the type of person who keeps dozens of pairs of gloves in my car to pass out to the homeless in winter. I have always tried to be helpful whenever I can. So, I'm hoping if you have it in your means to donate to my medical bills, it would be so helpful and would warm my heart. Even if you are not in a situation that you can send money, I understand that so very well. I humbly ask you to share this to your page and any community pages or other social media that you are able to. Thank you.

https://gofund.me/b913fd37

Venmo @Findlay19

PayPal @findlay1915@yahoo.com

[blondetta]

Spinal stenosis by me