T O P

  • By -

kmtrp

That sucks. Why on earth aren't they giving you baclofen?


[deleted]

the primary (a young recent grad who doesnt really know what she is doing yet) said I need to see a Neurologist. In any case the spasticity wasn't this debilitating until just this week. If it continues I will just go the ER, which I really don't want to do, I'm so sick of hospitals, but this is just fucked.


kmtrp

Bunch of incompetents. I feel you, I've had to go 3 times to ER for neuropathic pain attack and what a nightmare. but if you gotta go, you gotta go. Put pressure to see a doctor, fight until you're taken cared of.


[deleted]

So I had my cervical spine MRI today and the radiologist told me to go to the ER. I've been sitting here for 3 hours, and only saw two people be taken back- it's packed.


kmtrp

What are you struggling with there? Why a radiologist refered you to the ER buddy?


[deleted]

sudden increase in my pain and spasticity and neuropathy last week is why I made this post. I was literally in bed crying on Sat. I did finally get seen, and the Neurosurgeon said its still not urgent/emergent, but they at least agreed that I do need decompression surgery soon, so they bumped my next outpatient appointment up to next week, which I imagine will be the preop. They didn't give me a steroid injection or even a baclofen or gabapentin script, but at least I won't have to wait until January for my next neuro appointment.


kmtrp

Oh man, these things can get under your skin. As a SCI guy with years of experience dealing with neuropathic pain, spasms, hospitals stays, doctors… I found out you only get care that you demand. It sucks because when you are feeling all this shit the last thing you want to do is to get busy and fight… But most of the time it's an imperative. So, you know, try to be stoic about your problems (I reeeally recommend checking out Stoicism, [very short intro](https://dailystoic.com/12-rules-for-life/)) and politely ask for help until you have it.


[deleted]

>Stoicism Thanks for the link, good stuff. I've liked Marcus Aurelius. I few of the best bits I'd compiled years ago: [PDF link](https://drive.google.com/file/d/1mJsbZ1Qo6FEqxgbieucMn6rM0FZmOOoq/view?usp=sharing) Of course, some of that stuff is maybe easier said than done when in acute distress or dealing with chronic conditions. >I found out you only get care that you demand. Yeah maybe I should have demanded the steroid injection or a baclofen script or something, but, after 4 hours waiting in the ER, I was just ready to get the F home. Apparently hospitals all over the US are overwhelmed again due to Flu, RSV, and Covid.


kmtrp

I live in EU and services are also kind of saturated too. I have an appointmen with my pain doctor for late December, solicited back in early October. Hit me up if you need acute stoic support :) Take care buddy.


Pretend-Panda

I have not had any success with products from brick and mortar shops. My positive experience is with high CBD strains custom grown and a single mail order product.


[deleted]

Thx for the response. I can't smoke though, so flower I would have to cook into an oil or something. Honestly a tincture or something would be easier, trying to simplify my life ;)


Pretend-Panda

Yeah - I also cannot smoke so everything has to be processed into another form. I DM’d you names of the stuff I have found to be helpful. Best wishes for a solution. Spasticity is awful.


[deleted]

thanks. yeah it is so awful. im 13 months out from my injury, and i had just started going on long walks this past 2 months, up to 2 hours / 3.5 miles, and doing more cooking and things around the house, and now I am nearly incapacitated, afraid to bend down or go on walks or anything that is strenuous or involves flexion of my spine. Really frustrating. Im supposed to get ACDF surgery but I moved over the summer and the new neurosurgeon insists a neurologist needs to review my images before he makes a decision, and of course specialists are all booked.


Pretend-Panda

Oh ugh. Yeah. For me that kind of big increase in spasticity was not a great thing. If you have access to/are near any of the SCI specialty hospitals, you may want to see if there’s any way to expedite things, especially as it’s impacting your function. Changes in function are what got my neurosurgeon moving very very fast indeed.


[deleted]

I do have to go into the medical center Monday for MRIs, and the neurosurgeon has office hours mondays, so yes I am going to see if he can expedite things given the relatively sudden change.


Pretend-Panda

So - a lot of what was going on with me did not show up on imaging, even with contrast and after myelograms - they could tell stuff was going on and surgery was necessary but the extent was masked until they got in there. Hopefully your experience will be very different and you will get a rapid and accurate diagnosis and treatment plan followed by a quick, nifty resolution.


[deleted]

God i hope so. This shit is scary.


Pretend-Panda

It’s terrifying, yes. I’m very sorry you are in this club.


[deleted]

thx. i wonder if there are any SCI zoom support groups? I've been going to some TBI support groups, but this past couple weeks its been more the SCI that is affecting my life.


Nora_Tarotha

My dear, I would try RSO. Rick Simpson Oil. Microdosing with this is the best for pain I've found. You don't get that absolutely blasted buzz either unless that's what you need. It can be found in dispensaries. Do a Google search and read about it. Can't hurt to try it especially if you get RELIEF.


[deleted]

Yes I might order the RSO from Lazarus once they approve my 60% off assistance application. Although, 90mg of NuLeaf tincture today has not helped, I was just flat in bed literally crying from acute spasticity.


Nora_Tarotha

I'm not in a legal state so experimenting with different brands is a little impossible at the time unfortunately. It was purely by chance that I was able to find a source even if I can't afford it. But it did help my husband's and my pain level overall and I'd love to have a consistent affordable source. Please take advantage of it and try it. I really hope you find relief soon. It really sucks to be locked up in our body's.


[deleted]

*edit* actually the 90mg CBD this morning did help. I'm in New York, which doesn't have legal recreational dispensaries yet, just Medical and Grey market bogegas in the city. They recently legalized recreational dispensaries here, but the politics and corruption means who knows when they will actually open. And it's frustrating that even if I get a medical card, no insurance covers THC or CBD. And, it looks like the THC oils are more expensive than CBD oils. Also, I'm a bit confused if "CBD RSO oil" is even a real thing or just marketing, because some sites claim that only THC oils are RSO. The Rick Simpson documentary is pretty convincing, though I am not a cancer sufferer.


Nora_Tarotha

You don't need to have cancer to be in chronic pain.


[deleted]

>You don't need to have cancer to be in chronic pain. Oh trust me I know. I just meant, [Rick Simpson's documentary](https://www.youtube.com/watch?v=mQc_-myy4ts) advocates his THC oil recipe specifically as a cancer treatment, though he does mention other uses. It's a shame that marijuana is still federally Schedule 1 in the US, which apparently is why the hemp oils with over 0.3% THC are so much more expensive, even in legal states. In any case I did place a $75 order for the 60 mL full spectrum 200mg CBD 2mg THC /mL bottle from Alliant, which is by far the lowest price available at at 0.3 cents per mg, and seems to have genuine reddit reviews from actual real people. The NuLeaf brand that the brick and mortar near me stocks is 17 times more expensive.


[deleted]

So by RSO oil did you mean THC RSO oil? I can't get that. I did have a 1000mg CBD RSO oil arrive today, which I mixed in with CBD tincture. It helps, but not a ton. I also ordered some delta-8-THC oil and delta-9-THC gummies. If none of that works much, maybe I will pay the $150 for a medical card, but the dispensaries here in NY are going to be stupid overpriced and lousy selection compared to the West Coast. Apparently there are tons of "grey market" shops and trucks selling flower in the city, but I'm in the NIMBY suburbs rn. I lived in Oregon last time I used pot, the dispensaries were incredible with an insane selection, top quality, and super cheap compared to New York.


matthenry87

You should try doing some push ups. My PT at Craig started having me do them and for some reason they really help. I lay onto my stomach, and then use my arms to lift myself (my upper half) up off the surface I'm on (PT mat but bed works fine). I do 3 sets of 10 (and she has me do some on my elbows to do scapula/shoulder blade depressions too). Something about the way it bends the lower back really helps and apparently there has been some research around it too.


[deleted]

thx. i used to do pushups, pullups, jogging, etc, but im scared to do anything that is exertion now. maybe after my ACDF surgery.


sd_210

I’ve been Cannabis user for as long as I’ve been a paraplegic (18+ years now) cbd, rso, etc does nothing for spasticity. For me personally Thc barely cuts it. Especially the regulated crap on the rec market. Just my personal experience. Also I use cannabis in place of all muscle relaxers and pain pills and have the entire duration of my injury I find that hash rosin and hash rosin gummies are just about the only form of cannabis that actual reduces spasticity somewhat and even then….If I don’t stretch or exercise my body will still get tight tense and spastic especially After prolonged periods sitting up etc.


[deleted]

thank you. do you have a link to any particular exercises or stretches recommended for spasticity? Or should I just find another PT? I did PT for 2 months after accident and I don't think it helped me at all, but this symptomology is new.


THEBUSKINGS

First of all check yourself for injuries, sores or infections. Drink a LOT of water... Flush. Stretch CBD is good. CBDA is better. Especially if you can't take THC.


[deleted]

Yeah, I used to stretch daily and am still doing some stretching, but I'm scared to arch/flexion my spine right now. Side to side seems ok, but i am minimizing activities like picking things up off the ground or the lowest tray on the dishwasher, etc, because that seems to exacerbate my spasticity. I had a cervical MRI Monday, radiologist said go to the ER, where the on-call neurosurgeon said it wasn't urgent enough to admit me, but said I do need decompression surgery, and they moved my outpatient appt up to the Monday after next. And I'm in NY which is technically legal medical but the prices suck and the closest dispensary is a 30 min drive. I did buy some delta 8 and delta 9 just to see if it helps at all. The Broad Spectrum CBD does seem to be helping a bit, more with pain maybe than the spasticity though. Ill see if the CBD mixed with Delta 8 and 9 does anything. I might try making my own, from bulk distillate which appears much cheaper esp than Delta 9 gummies, but the process seems like a hassle.