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Member
(09-09-2008, 05:34 AM)
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#51
Originally Posted by pirahna1:
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Truly deserves to shoot laserbeams from his eyes
(09-09-2008, 05:35 AM)
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#52
Welcome to the fray man. Right now I am just a low-tech wanna-be cyborg but hopefully in the future I'll get some better tech installed. [Prosthetic with some other modifications :\]
All my problems are from my eyes and I've had many surgeries so I can relate in a way. I can't see that great but hey, I am not blind. Right now I have a band around my right eye [visible if I look to the sides] and the eye itself is filled with a type of ocular oil to keep my tattered retina in place. My other eye, well not much till I get an upgrade. Crazy stories.. I have a few. I've hyperventilated and had to breath through a lunch bag someone stole from an Intern walking by after my eye hemorrhaged. (Worst pain I've ever felt so far). It smelled like a ham sandwich. Post-op I had my socket tissue pro-lapse down onto my cheek due to an allergic reaction. I looked like a freaking zombie. :lol I've got more but I don't want to tell them all in one day. Hey, on the bright side you and I will never run out of stuff to tell our Grand kids eh? I wish you the best, I really do. |
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(09-09-2008, 05:44 AM)
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#54
Well kozmo I'd say your (new? I think it's new) tag is a good fit then. :lol That sounds awful, I wish you the best with it.
As to what this is called, my pain doc uses the term "chronic peripheral neuropathy" for things like insurance forms and other legal documents, but he says that doesn't describe it exactly. My problem is much more severe than it usually is and the presentation of the pain - location, type of pain - is very unusual for neuropathy. And no it's not dehydration, but I got a kick out of that post (my wife less so). |
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Member
(09-09-2008, 07:51 AM)
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#59
I must say I kinda cringed reading the op, best of luck Echoshifting.
I have been through some surgery of my own. Not to pleasant. My sternum was basically growing crooked so I decided to have it corrected. In order to do so they had to saw open my chest and break the cartilage surrounding it. Luckily everything went well. |
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(09-09-2008, 07:59 AM)
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#60
Originally Posted by White Man:
We might pay a small percentage; it's my wife's insurance and she handles it with relatively little input from me. I'll have to ask her in the morning and get back to you. |
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Birdie in the hand for life's rich demand. . .
(09-09-2008, 08:05 AM)
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#63
Originally Posted by echoshifting:
I see a psychiatrist tomorrow for the first time in almost a decade. I'm trying to see if I meet the criteria for ADHD. Small potatoes in comparison to you, but I'm nervous, heh. |
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(09-09-2008, 08:13 AM)
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#64
Originally Posted by Botolf:
Anyway, it would have to be in the particular area, since the leads affect nerves leading to a specific place. But I imagine it would since all pain is caused by the nervous system. That's guesswork though; haven't done any reading on the subject.
Originally Posted by White Man:
And hey I'm due for a win with insurance. :P My insurance has had so much control over my treatment it's disgusting. My doctor has wanted to perform this procedure for several months but he knew he wouldn't stand a chance with the insurance until I had "failed" a number of other procedures and pharmaceutical options. They control the number of painkillers I get every month (if I end up needing more than my prescription calls for I have to pay for it out of pocket) and even the number of sleeping pills I can take in a month. I wasn't even able to have this scheduled until they gave the okay, and when the permanent unit goes in they may reject the higher-end stimulators in favor of a cheaper option, even if it means more frequent surgery for me to get the battery replaced. I'm hoping for Medtronic or Boston Acoustics; they produce the best stimulators. Medtronic is the company that is providing/programming my test unit tomorrow. Good luck with your psych exam tomorrow, WM. |
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Lionheart: 1827
Cancer: 0 (09-09-2008, 12:57 PM)
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#67
Originally Posted by echoshifting:
Grr, I've never had surgery but came really close. I have ITP and if medications and blood transfusions dont work too well, they usually have to perform a splenectomy to bring up the platelet counts. I was THIS *makes small size with fingers* close to getting the surgery done, but prednisone helped considerably. Good luck with your surgery echoshifting, aka RoboGAF. :) |
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Member
(09-09-2008, 01:15 PM)
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#71
I, for one, welcome our new robot overlord.
Good luck! The condition sounds terrible, I hope the procedure goes well. When you take these powerful opiates, are you overly-affected by them, or is the pain so severe that it just makes you feel normal or disassociated from it? I've had [something I can't remember] prescribed, and (when I was taking it for pain, not recreationally) it didn't seem to alleviate the pain so much as just make it feel like it was happening to someone else. |
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Member
(09-09-2008, 01:23 PM)
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#74
Good luck Echo, my diabetes is nothing compared to your challenges. I hope you feel much better without having to use Fetanyl, that stuff kills people that try it recreationally.
maybe you can get your remote hooked up to your WiiPS360 for some truly next gen rumble! :D |
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(09-10-2008, 01:09 AM)
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#75
Well I just got home about an hour and a half ago. have two electrodes running out of my spine to a generator and a remote to control the power and "nature" of the sensation. The robocop reference in my tag is pretty amusing since I am not supposed to bend or twist my spine at all...so I kinda have to move like robocop!
The programmer said I would probably electrocute myself once while figuring this out and I've already done it twice. :lol I know a lot of people are interested in this so I will write up a full report later when I'm feeling a little better...really insanely tired right now so I just kinda want to lay here. I will also try to post a couple of pictures of the wires coming out and the remote if there is anyone who'd like to see it. |
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Truly deserves to shoot laserbeams from his eyes
(09-10-2008, 02:47 AM)
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#82
Originally Posted by echoshifting:
Ugh man, I know your pain with the insurance companies. It truly is disgusting the things they try to pull to save their butts money. I've had to fight with mine and am still in the process. They were paying for my prosthetic treatment but now they consider it ancillary [akin to a acupuncture or a massage] which is absolutely ridiculous. I'll show them once I get my bionic eyes that shoot laser though.
Originally Posted by echoshifting:
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(09-12-2008, 01:21 AM)
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#85
All right, here is the more detailed update as promised.
The procedure itself was not that big of a deal. I was on some pretty slick painkillers that kept me fully aware and able to converse without worrying too much about them shoving wires around in my back. In addition to the usual staff of nurses, techs and residents (not to mention the doctor), I had a Medtronic representative there to program the device. The doctor would position the electrodes on my spine and the Medtronic guy would then hook it up to his equipment and turn it on. I would then experience the normal "parasthesia" despite the painkillers, which I thought was interesting. We had to do this several times before everyone was happy with the position of the electrodes. The doctor and the Medtronic tech both informed me that they had to skip a vertebra to get them in a good spot, which is apparently unusual; the tech guy in particular was interested in this detail. I then spent about 30-45 minutes with the Medtronic tech designing some programs to try. These represented different types of sensation in different areas. I was sent home with the hope that I would test them out as much as possible performing activities I could not normally do, to see how much it helped and which settings worked the best. When I left I had the two sets of electrodes protruding from my back attached by a wire to a handheld generator, which I kept rubber-banded to the remote (no antenna yet so they had to be together to work). They gave me a fanny pack to keep everything in. I'm sure everyone thought I was a terrorist with a wire going out of a bulky fanny pack leading up my back (you could clearly see the wire at my side if you looked at me). It is hard to describe what it's like to have these things in your back sending a constant electrical current through your body. If you have ever used a TENS unit, you have some idea of what it is like, as the sensation of the current is very similar, but much stronger with the spinal cord stimulator than the TENS unit. For those that haven't, the best way I can describe it is as an intense tingling. Like when you put your leg to sleep and you start getting that tingling feeling...like that but, ya know. Pleasant. :P Today I went back thinking that we were just going to be realigning them (the electrodes often slip as people don't obey the "straight spine" rule). I met with another tech guy who looked at my remote and was able to see which programs I used the most. He then filled in the slots with some new programs for me to try. A couple of these programs were AMAZING. One of them sent a sensation down my legs that seriously felt like sex. You know how you get that incredible muscle tension release through your whole body after a good orgasm, right down to your toes? It felt EXACTLY like that. I thought I was going to get to go home with these lovely programs to play around with them for a few more days, but, alas, my doctor came in and told me that if I had already decided to go forward with the permanent unit, the temporary electrodes should be removed to avoid unnecessary infection risks. :( :( :( So now I am back to my old in-pain self, bleh, with a bit of surgery site pain to boot. Ah well. I did tell him that I wanted to have the "sex" program when I get my permanent unit. I made him WRITE IT DOWN. I got to walk down the street to lunch before they took it out and wow, what a feeling. He told me they would try, and that since I am pretty tech-savvy he would be open to setting my remote so I can design my own custom programs! :D In short, the stimulator works great. After spending a full day with it yesterday I am confident I will be able to resume most of my normal activities to some degree. I don't think I'll be able to drop the fentanyl or the pregabalin, but I expect to achieve at least 80% functioning with a combination of these three painkillers. I am counting the days to Implant Day. It can't come soon enough. I am going to answer the couple of questions that came up over the past couple of days later this evening...wife and daughter just walked in so I gotta go! Sorry if grammar/spelling is a mess, didn't get a chance to re-read this before posting. edit: Sorry, no pics. =/ Thought for sure I would have the thing in a bit longer than that.
Last edited by echoshifting; 09-12-2008 at 01:25 AM.
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Truly deserves to shoot laserbeams from his eyes
(09-12-2008, 09:31 AM)
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#86
Wow amazing, very glad to hear it worked out for you. You of all people deserve walking around with a 'sex' feeling in your legs. :lol
I like how you'd be able to design your own programs but I am confused a bit by that. Do you change the type of stimulation that goes on? I'd be afraid I do something that set off my bladder or something; although I don't think that's the slightest bit realistic. :lol Once it's finally in, do you have any restrictions on movement? No lying on back or twisting a certain way etc. I only ask because you reminded me of myself when you said you had to stay straight for the day. I ended up being stuck in a face down position several times while my eye was healing. Even though it's all healed [again] I am not able to lay on my back at all. Anywho, very happy to hear this worked out for you. Imagine sex WITH the sex leg sensation turned on. Although that might cause a short-out or something. :lol |
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(09-12-2008, 10:03 AM)
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#89
Can't sleep because I'm thinking about all this stuff and going over the literature again and again. :P
Originally Posted by kozmo7:
There were definitely a few weird moments - no loss of bladder control - mostly with my legs even with the programs the first tech guy set up. I had it set too high for walking at one point and my right leg started to go out with every step as though I had been hit with a taser or something. I thought it was pretty funny...my mom, who was with me at the time, not so much. When they pulled out the leads - thinking it was already off and unplugged - I got a huge rush of sensation in my legs...thought I was going to start dancing or something.
Quote:
The recovery period is 8 weeks; I am supposed to keep my spine straight during that period. After that I just have to be careful...the more physical activity the greater the risk. No Thanksgiving football. One that really bums me out is scuba diving. I am not supposed to go below 33ft. If you have ever scuba dived before you know that's not that deep at all. Scuba diving is one of my favorite things and it's a little soul-crushing to know I may never do it again. A bit weird, I know, since there's no way I could have done it safely with my untreated condition. But with the condition you can always say maybe it will be better someday, with the device it's permanent. /livejournal I would not be surprised if the day comes years from now when I say to hell with the risks and just go for it. My doctor said the literature suggesting diving would actually damage the device isn't terribly convincing. Overall, though, I'm fortunate enough that I'll basically have the entire range of motion available to me, and I'll be able to decide for myself when a risk is worth taking. One of the booklets they gave me warns that if you sit in a sauna or a hot tub you should immediately get out if you start to feel it heating up...yeah those would be good examples of risks I probably won't take, heh.
Quote:
Some questions I missed:
Originally Posted by Pterion:
And these sorts of devices are used for all kinds of things, I've come to find out, to treat pain and other conditions all over the body. Maybe you are thinking of a different procedure? If you go to Medtronic's website you can see the wide range of conditions they treat with this device or similar devices.
Originally Posted by Darkman M:
That reminds me, earlier in the thread in a reply to White Man I claimed that after my high deductible was paid I didn't owe anything, but it turns out we are still paying 20%; we continue to do so until we hit $100K. In addition, her employer matches up to $2500 put into a health savings account (constantly drained for us), so that helps too.
Originally Posted by AlexMogil:
I think that's it, if you asked a question and I missed it I scanned over it, slap me and I will respond.
Last edited by echoshifting; 09-12-2008 at 10:09 AM.
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(09-12-2008, 10:06 AM)
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#90
Originally Posted by Metalic Sand:
I would be happy to take pics of the implant site but I don't think they'd be too interesting. I'm bummed I didn't get pictures of the trial unit since you could see the electrodes coming out. I'll put up a pic of the remote eventually.
Last edited by echoshifting; 09-12-2008 at 10:21 AM.
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Member
(09-12-2008, 10:11 AM)
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#91
So are there any secondary effects? If you use it too much will it cause damage to your body or will the effect wear out? Or can you "sex" it anytime you want lol?
Best of luck mate! I usually suffer from migraines so i know what it is to have constant pain, altough not in the same extend as yours! |
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(09-12-2008, 10:16 AM)
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#92
Originally Posted by ChackanKun:
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Member
(09-12-2008, 04:42 PM)
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#94
Best of luck to you with everything :) I'll admit I also had a tough time reading the OP just due to how involved it is. I know if that were me I wouldn't have been able to sleep at all the night before a surgery like that.
Although not as complicated, or my condition anywhere NEAR that severe, I have had several surgeries on my eyes. When I was born I had cataracts so I spent most of the first couple months of my life in the hospital recovering from the surgeries I had to have for that. Then, about 10 years ago I went to be tested to see if I would be a candidate for lens implant surgery so I would no longer need contact lenses. My left eye was a perfect candidate for the procedure but my right eye was a little less so but they left the decision to me. Before I go any further I'll say I found out that day too I have glaucoma in my right eye. I had been experiencing blurriness and halos shortly before I found that out. I have eye drops for the Glaucoma so no worries there. Anyway, I went ahead with the lens implant surgeries. When they did my left eye I was completely awake and alert and it was really neat to watch them do that surgery. It was amazing one minute I could see nothing but blurriness out of that eye and a matter of seconds later once they got the implant in I could see perfectly, 20/20 vision. I finally was able to see all this stuff that was there for years but I missed because I couldn't see it well. The surgery on my right eye was a LOT more difficult. I had to be knocked out that time. I woke up toward the end of that surgery not being able to see at all out of my right eye. They had to do something extra to get the implant into my right eye. As a result of that, it caused severe trauma on my right eye that caused temporary blindness in my right eye. I got my eyesight in that eye back completely within 24 hours. I now can see pretty much 20/20 perfect vision out of both eyes so the gamble to do the surgeries was well worth it for me :) But I swear, after the surgery on my right eye I have NEVER EVER made fun of blind people. Now I know exactly what blind people who will never be able to see go through every day :( It's not fun and I cannot imagine how much bravery they must have to go through all of life like that. Anyway I wanted to wish you luck :) And let you know I've been down the surgery street before too so I can relate somewhat.
Last edited by bh7812; 09-12-2008 at 04:45 PM.
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Member
(09-12-2008, 05:54 PM)
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#95
Originally Posted by echoshifting:
But seriously, this device sounds pretty awesome, hopefully it fixes your condition |
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Member
(09-12-2008, 06:04 PM)
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#96
Thanks for keeping up with the replies and being detailed. It's not often enough that people do that.
I'm surprised you could be sent home the same day as the surgery. I imagined you lying there on your stomach on a massage-like table, with your back open to such a degree that you spine is exposed and the nurses, doctors etc rubbing their chins looking interested. |
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(09-16-2008, 12:12 PM)
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#99
One week to go before Implant Day. I am excited and apprehensive at the same time. This is going to be a very long week.
My mom asked me on the phone yesterday if I knew this was something I really wanted and at first I didn't know what to say. After considering the question for a moment I realized it's not something I WANT so much as something I need. I feel like I've exhausted my other options and this is something that could make a huge difference, but I would not describe it as something I WANT. The magnitude of this change has finally sunk in, and although I have accepted it, when I find myself looking over the edge of it I have to catch my breath. It is awesome and terrifying at once. Up all night in pain last night, was in so much pain yesterday I could hardly shift on the couch. I can't count the number of times I've done this, and I find it hard to believe this could finally be changing soon. I slept like a rock the two nights the trial device was in. /blog. hmmmm maybe I should just start a blog. |
