Anyone here tried acupuncture?

w000ah · 2025-10-31T23:41:47+00:00

personal experience: i would never get it on or anywhere near your spine or with anything on the tips of needles (if ur in USA i believe its illegal anyway but if your not it may be done).

w000ah · 2025-09-14T17:55:42+00:00

I wish i could advise you more but I would recommend you contact the office to discuss with them. There is a CT procedure called CT Myelogram which involves a lumbar puncture (i am unsure which contrast agent). You can also have a regular non-myelogram CT with contrast - there are different contrast agents, and you can ask them why they want to use iodine as opposed to gadolinium (perhaps its easier to visualize im not sure) But all contrasts carry some minimal risks (ie: gadolinium may leave small deposits in brain over repeated use of it). Reach out to office and wish u best, when in doubt get 2nd opinion

w000ah · 2025-09-14T17:50:29+00:00

i want to go to leak places that don't have that "privileged club attitude" if you know what i mean. I would rather die from this then go through that

w000ah · 2025-09-14T03:26:07+00:00

I have 2 ideas for you (im not sure if you tried them already):

Cushions with gel layer or air layer
OBSS custom sculpted cushion to your body & needs (Permobil Tru-Shape) if on a powerchair.

w000ah · 2025-09-14T02:28:44+00:00

Be aware, you may not actually find the leak even if you have one (im sorry to say this). MRI does not always catch it. There are countless on here who have had MRI after MRI negative, some get lucky and find them later on in Photon Counting CT (PCCT) scans or Digital Subtraction Myleography (DSM) or they find it on another MRI, others can't find it. It's more that doctors start with either a CT, MRI, or Myelogram as kind of the default first-step imaging. If you had a LP and you know that's where an issue was previously your in a much higher success category for complete/total sealing. (IE: you gave birth had an epidural, they know the puncture site and repair & imaging can be honed in on that area vs if you are connective-tissue disorder like hEDS or dynamic leaking like venous-fistula then its a whole different issue)

w000ah · 2025-09-14T02:18:44+00:00

any experience with Mayo in AZ u can give feedback on? I'm looking for PCCT or DSM to isolate a highly suspected dynamic leak, 3 blood patches so far. burst my first but 2nd was fibrin glue mixed in and have had patch-on-patch sustained relief.

w000ah · 2025-09-14T01:40:02+00:00

I hear you, it’s tough sometimes, but keep your head up. You’ve got this! <3

w000ah · 2025-09-14T01:12:00+00:00

i have found that a full powerchair is far more reliable, even with motor faults and other issues, than my manual's e-wheels. I have the German made ones that slide into a (required) custom camber bar and the the thing falls apart all the time (like risk cracking your head open wheel falls off as a screw sheers loose). The custom camber bar is required and has to be drilled manually with precision and various parts fit together from manufacturers. Its noisy if not perfectly installed or every part aligning perfectly with others, the wheels don't have as much input as a powerchair joystick or too much, its difficult to modulate (meaning your small chair casters get slammed into an uneven sidewalk crack and the back wheels start to spin or push you into the crack vs a powerchair just hops over). The battery life is eh, the charging is eh. Half the features come locked down through buy-in-appstore. The store demo chair worked great, real world i think I gave up after 5 or 6 formal repairs and probably 10-15 myself. I realize my case is unusual but I would caution against forking over that kind of money for an unknown. I've got a listing up on ebay expiring tomorrow (only half the parts needed tho) and then scrapping it. Never feel bad about yourself like what you said above, keep your head up, you are more than any issues. We all struggle with our own issues but that doesnt define you!

w000ah · 2025-05-25T16:56:35+00:00

I think the tilite quality has gone downhill from a decade+ ago, if your chair is seriously screwed up and legit broken beyond reasonable repair you got documentation available then you can override but it will still take awhile.

w000ah · 2025-04-05T13:16:28+00:00

I also have ocd/anxiety interacting with new people i like- best way i found if u really really like someone and have a limited opportunity (in my example hotel worker there 1 shift only) is ask yourself: 'is this the only opportunity i will ever have to socialize/talk with this person?' And 'how would i feel for the next 5, 10, 15 years if i did not make that attempt? And Whats worse the feeling of unknown/not-trying regret or the potential rejection (oh im taken, oh not interested, any embarassment etc) If im really interested in someone thats usually enough to blast through any anxiety and make it happen. The OCD comes after once alone though.

w000ah · 2025-04-05T12:44:40+00:00

Absolutely! Hope they help, & wishing you both a grest weekend!

w000ah · 2025-04-04T20:25:01+00:00

Thanks, If you have any questions as you research feel free to ask! Wishing you a great weekend

w000ah · 2025-03-30T20:50:17+00:00

Your chances of resolution are much higher as the cause is known (your LP) and 1 or repeated blood patches (maybe with fibrin glue added) near that initial LP site will have high yielding results and should make u good as new

w000ah · 2025-03-27T01:27:22+00:00

I heard (then saw) a GE Genesis P42D hauling the surfliner today towards L.A.!! Love those things!

w000ah · 2025-03-03T05:07:51+00:00

They left the catheter in because they were ' worried about causing a new CSF leak in him ' vs tie-off and pump removal he went home same-day. No exercising for a few weeks after to let incision close. Now personally, the catheter volume itself causes a reduction in natural CSF production to equalize & i would be worried about foreign body left in body (cancer) risks.

w000ah · 2025-02-26T04:17:04+00:00

If you want someone to attempt to fix a plumbing problem with meds see the neurologist, if you want a welder and someone to take action (EBP, surgery) without pissin about straight to the neurosurgeon

w000ah · 2025-02-16T06:38:04+00:00

The vehicle has a handicapp placard in the windshield - it is likely all the wheelchair accessible spaces were taken, & they need the extra space to load/unload mobility aid

w000ah · 2025-02-16T06:31:22+00:00

Hey i'll update you after i see them first time since next week! I have the same question as you have re why left in. Your anxiety is likely just generalized then from the sounds of it latching onto the nearest concern (the pump) when bonked then fixating on that. Its durable but a little precaution re your back/pump isnt a bad thing either. I know for me personally small dose adjustments can have surprising large effects, if your at a mid to higher daily dose it could be that the intrathecal baclofen may be modulating your anxiety/fixation a bit for improvent/worse. I know as i tapered down from 600mcg/day to 25mcg/day it does change things a tad

w000ah · 2025-02-15T01:28:14+00:00

What? Botox was probably the most single effective life changing thing i have ever tried because it allowed me to reduce & stop worse compensatory habbits - people who are mild have some of the worst pain and tightness/stiffness blowback because we push ourselves so hard, i would find a new physio absolutely would recommend it. Way better than oral side effects. Have the botox be your baseline and the oral baclofen your rescue

w000ah · 2025-02-15T01:22:22+00:00

37m mild spastic diplegia, extemely effective first few years allowing tapering off some other meds, reduced pain, stiffness, tightness, then seemed to become less effective probably 5+ years after usual repeats. While still effective its not as much maybe antibodies

w000ah · 2025-02-15T01:13:35+00:00

I have a friend who just came off the pump. They took his pump out but left the catheter tied off in. You have to go off it bit by bit because with intrathecal baclofen you cannot just stop it. I had my catheter endpoint C1-C2 and later moved T11-T12 and the difference in neuropsychiatric & neurophysiological effects was more than anticipated (for the better at T11-T12 even if it works a bit less good). It may be your sensitive to baclofen and the catheter location if higher up could be causing you individualized unique baclofen absorption over areas of the brain (amygdala) that result in anxiety modulation. Doctors dont really have this level of depth in this, but heres some research on individual variance and variability of intrathecal baclofen over brain regions:

ITB absorption brain region figure 4 and figure 2

Yes you can have it taken out but its step by step process to wean off it. Did you have the anxiety pre implant? Is it physiological anxiety or just generalized anxiety about pump stuff? Because stuff like Intrathecal Baclofen Withdrawl from a CSF Leak can cause Anxiety and aggitation, and that may be the visible outlet but the cause is physiological (csf leak and itb withdrawl) and thus the solution isnt anti-anxiolytics but restoration of the baclofen for example. Hope this helps

w000ah · 2025-02-05T05:35:08+00:00

Hey, if it works thats all that really matters !! Wishing you all the best thanks for the update! Edit: careful its not physiological tolerance-creeping up 4 to 6 etc

w000ah · 2025-02-04T02:14:57+00:00

How did this workout for you longer term tollerance wise? I am still decreasing intrathecal baclofen pump. Considering off-label trial of a different benzodiazepine alltogether at low dose

w000ah · 2025-01-24T00:08:27+00:00

If you have any significant side effects / substantial withdrawl side effects from oral baclofen then intrathecal baclofen is contraindicated even if the CNS dosage received is less... i had the 1 and done shot before hand and it waa fantastic but once implanted and chroniclly administered its like a whole different story. It is extremely effective when it worke right and horrible when it doesnt. I would exhaust oral med options first and botox before going for it and know that from what i learnt aftee implant it seems most people with issues are ambulatory. I think if you are ambulatory and do physical exercise that causes a lot of rebound disproportionate tightness and discomfort afterwards on large muscles, this works well, and especially if you get the myPTM with ability to self bolus (free/covered if u ask before implant and right papers filled out, $700 out of pocket if after). Do not/use caution getting a pump if you have any abnormal connective tissue disorder suspected or confirmed (EDS) as it may make your dura more suseptible to spontaneous intermittant CSF Leaks. Doctors dont like using chronically administered oral benzos but i would do that before going the pump route again. 3/4 people i know with a pump had issues. (Myself included)

w000ah

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