I was wondering if any of you have had a spinal tap to look for orexin deficiency or during the process of eliminating other possible sources of EDS/cognition issues. I'm really thinking about wanting one, despite how much I've heard they hurt, because I really think there's something wrong with me besides N. I would just like all my neurotransmitter levels to be ascertained and also check for parasites, microbes, etc while their at it. I just don't think N can explain all the CNS symptoms that I have, so it feels prudent to me.
This Is Spinal Tap
Posted 18 February 2013 - 10:40 AM
I have not had a spinal tap, but before my diagnosis I had a CAT scan with contrast dye to check the placement of the electrode from my spinal cord stimulator. It involved a lumbar puncture, withdrawing a small amount of fluid, replacing it with magnetic contrast. The whole process was not exactly painless, but definitely hurt much less than the injections that I have had in my upper back.
Posted 18 February 2013 - 06:56 PM
Lumbar Puncture = Spinal Tap
Had one as an infant, in 1980, before my Severe Hyperinsulinemia Hypoglycemia was recognized at 2 months old.
Wish I could get the results but all of that is perhaps in some facilities basement file cabinet, if even anymore such exist?
Was offered one a couple years back, to have sent to Stanford Center for Narcolepsy (after my MSLT and blood work HLA test were done) and it would have been supposedly free of charge; I was curious but at the same time I get enough severe headaches from allergies/sensitivities/arthritis and what-not else. Plus, they worded it as though it would give me a 100% versus the 'probable' diagnosis. Yet, in my mind, nothing besides that would be gained. It sort of scares me too, that they remove fluid, from the limited amount of fluid; and just the common headache effect or headaches there after effect (maybe explains a few of mine?) is not of interest.
Now, as far as the CNS, mine is awfully screwed up, most all of the time. But, things come and go, some persist. I have a strange, rare, form of apnea (being 'central' - sleep or awake - the brain and respiratory system do not always work in sync or something - they actually admitted, as they did about both Narcolepsy and Cataplexy, that the 'understanding' is very limited and new, in other words 'unknown'). I can't help wonder about things like Lyme disease, Candida, blood diseases of bacteria and/or viral; it's just impossible it seems to get either a broad scoped enough doctor to, listen fully and/or connect the dots. I often am insulted, for knowing anything about my condition, maybe that's because I seem to be more (or near as) on top of info, then they.
This was at a world re-known Clinic; who confirmed and seconded so much, and cost thousands (that I have no income towards) for only that...
As I've said in many post, my N is way more than a sleep disorder; yet I can't begin to connect what to what considering the roller coaster my life has been.
Good and bad days are often, good days are rare, bad days are common. It's a day to day, deal.
Posted 18 February 2013 - 10:33 PM
Spinal cord stimulator? What is that used for?
The spinal cord stimulator uses small electrical impulses to cover up the chronic pain from a damaged illioinguinal nerve. I now have back pain from the implant surgery. This all happened before I was finally diagnosed. I think the lack of quality sleep was what led to poor healing from the implant surgery, and the original surgery that led to the damaged nerve in the first place.
Posted 18 February 2013 - 10:57 PM
Lumbar Puncture = Spinal Tap
It sort of scares me too, that they remove fluid, from the limited amount of fluid; and just the common headache effect or headaches there after effect (maybe explains a few of mine?) is not of interest.
The amount of fluid that they remove is quite small. Spinal headaches occur when the puncture leaks. From what I have been told they are very rare these days. They use an extremely small needle, and rest immediately after the procedure to limit the chances of leaking. If leaking does occur they can treat it with IV caffeine or by injecting your own blood back into the puncture area to form a clot.
Posted 19 February 2013 - 10:32 AM
Hmm, interesting and good information to know. Thanks!
The way in which they worded it, at least to me at the time after I'd said yes (before deciding soon after that I'd rather not), included a 'we must mention there are un-predictable rare side-effects, which typically include or involved persistent headaches.' -something like that.-
If they'd offered a more 'thorough' sort of evaluation of the many other possible things they could discover with the CSF, and that is without a tremendous out of pocket cost/s on top; I'd perhaps definitely have followed through and taken it.
Perhaps one day, I'll feel more comfortable with it.?
Having cervical disc degenerative disease (near continual, at least some daily, aching and real discomfort, constant sensitivities - of the neck/shoulder/head too)...
Sort of responding to the below post here.
Having a good broadly wise doctor, that actually 'consciously is caring, as well as focusing on more than a quick fix of a symptom/element/specific/piece alone (and I mean focusing outside of the tunnel visioned space that too many seem to be -held- within, today more than yesterday; and for a plethora of 'un-health'y related reasons -[cough cough] quotas, guidelines, boundaries, profit/s at times, ego at times, procedural norms, ridicule, relations, standards, and so much more behind the scenery-);' having such though 'may only be a' key to getting perhaps actual help, and having or finding such is beyond rare (at least it seems to be, for me).
And, the link below goes into a very serious, and related, matter.
Objectives and mistaking, the obvious; such goes way WAY beyond only radiologist, and even the systemic structures, we all seem to be doing such more and more unconsciously. - I'll include myself there, as I feel we must recognize things and admit them consciously first and foremost, rather than not. -that all felt off topic?-...
Posted 19 February 2013 - 09:06 PM
It's like most procedures. They always tell you the worst that can happen. Sometimes it comes out sounding absolutely horrendous when the actual chance of a bad outcome is minuscule.
I have had numerous therapeutic and diagnostic injections in my back over the last two years. The risks are always there, but I have a really good doctor that I trust. The radiologist that did my CAT scan with contrast was well respected also which made me feel better about that procedure. Things do happen though, like that compounding pharmacy on the East Coast that spread a fungus to so many injection patients before the source was found.