What the hell? or 70+mph bike vs Barbed Wire Fence (updated with bike pics)

Discussion in 'Face Plant' started by trc.rhubarb, Nov 22, 2016.

  1. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    It's nice to go for a ride, even if just for 15m each way. I feel balanced, agile and even a bit elegant when on the bike... then I get off and go back to walking like the killer in most every slasher movie.
  2. CavReconSGT

    CavReconSGT Just the right amount of evil.

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    You are unfortunately finding out the limits of what medicine knows about how to manage pain. My wife has been a patient with diagnosed Complex regional pain syndrome almost 20 years. Hers came from a fracture of her left ulna and radius. A simple compound fracture from a fall in the winter in our own driveway had turned into a lifetime disability. Pain that has never subsided and eventually traveled throughout her body. My only suggestion is to FIND ANOTHER PAIN SPECIALIST. Another doctor might have other answers or treatments.

    Good luck,
    KR
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  3. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    That's a good idea. Apparently they are in short supply out here... something to do with being busy with the tons of people hooked on prescriptions.
    Not to say there aren't legitimate but I could easily say more than half the people at this place were addicted. You could see the desperation when they asked for refills.

    I'm hoping the EMG will show something but if not and it's just body pain... well, then I will own the pain.
    I can't with the head pain though. It's too much for me and will drive me insane, so I need a solution for that.

    That appointment isn't until 10/6 though. And I need to find a Neuropsychiatrist as pointed out by @flei in another thread.
    The Neuropsychologist won't have the right tools or background to help me properly. It's all starting to make sense now.
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  4. CavReconSGT

    CavReconSGT Just the right amount of evil.

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    Unfortunately, most of the pain specialists tools are related to drugs. That is all they have for serious long term pain. My wife also has an implanted simulator, basically an implanted TENS unit that is attached directly to the nerves in her arm. It was an experimental surgery at the time. She was the first they ever did this to. She is written up in the journal for it. But, it did give her, the use of her arm back. It use to hang uselessly at her side after the fixator was removed. Even with that, she takes narcotics to help block the body pain she has when she tries to sleep. Again, they can tell, qualitatively that she has a real problem. They can measure her nerve conductivity and see that there is a problem. THEY DO NOT KNOW WHY THIS HAPPENS to some people and not others. They also do not know the mechanism involved in these issues.

    Again, I wish you the best.
    KR
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  5. flei

    flei cycletherapist

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    haven't read this whole thread; what is the "head pain" you cited? migraine headache? or are you describing your psychological pain?

    re: pain management. imo, chronic pain is serious shit; it can really fuck up your life; i have seen this many times. in my opinion there are a lot of people getting lousy, inadequate treatment for their pain. sure, opiates are at times over-prescribed, yet i have worked with people in severe pain who could not get opiates possibly only because they looked "sketchy" to some doc. because pain is purely subjective and cannot be described well or measured at all, it is difficult to convey to docs your pain, and they have difficulty understanding it (and are these days, with good reason, are pretty gun-shy about prescribing opiates). therefore, you need to find a doc who trusts your self-reported pain and who will work with you to manage it well. this unfortunately will likely be thru trial and error, as what works great for one person may not work at all for another.
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  6. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    wow... That's amazing. I'm glad they were able to help her.

    I think I have 1 or two vertebrae left that aren't somehow damaged... so I've got room for more pain :lol3
    When it's fairly constant, I can tune it out. When it's like a catscare scene... jumps at you out of nowhere shrieking like a hawk, I haven't built any kind of defense for that crap.

    I may yet end up on some sort of pain killers but I will fight it as long as I can. I really think if I can get the tbi pain controlled, the rest I will figure out.
    We shall see what I say a month from now though :D It's easy to be brave when I'm not in the pit.
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  7. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    Sorry, didn't mean to drag you into hell island :)

    I have head to toe pain, with limited exceptions. The pain, if you're referring to my crazy rant... that was as if someone hit me with a rod on top of my head, ear to ear. I felt like my skull was caving in and that pain was so intense and lasted for days, well... it led to the rant.

    I don't have what I would call psychological pain, but I might and not know it. I'm generally in good spirits unless I just hurt so much I can't sleep.

    I've ordered a couple more books that fellow inmates have recommended and I'm working on the doctor front. For now, paramount in my world is whatever is causing these debilitating headaches. Sometimes migraine but often intense pain without all the fun stuff. Today was neat, in total darkness, some color blobs came out to play. It only lasted for about 5 minutes though, then the nausea and other regular migraine stuff came in.

    Anyhow, this place can get very weird and maybe a little dark at times... I should probably get some sort of warning tag set up to keep people safe.
  8. just jeff

    just jeff Long timer

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    15 meters doesn't seem like much of a ride.....It's good you are enjoying the driveway anyway.....:hide
    JJ
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  9. flei

    flei cycletherapist

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    1. s'ok, you didn't drag me in; i've been reading this thread off and on since the day you started it, just have not read every page (for me, it's too much like being at work :1drink) and didn't post until i couldn't stand it any more.

    2. fairly needless to say, your condition (physical and psychological) is NOT GOOD. it has been almost a year since your accident. your pain sounds terrible. you are hearing voices. you are depressed. etc. etc. etc.. this is not likely going to get better on its own. it could get worse.

    3. i've got more recommendations (some repeats from your other thread): you need to get really aggressive about your care. join that (or another) support group and get recommendations for doctors and therapists who are noted to do good work with tbi. you live in the Bay Area and there should be many very good providers (tho you may have to travel to the East Bay or City, etc.). FIND THEM! you especially need one medical person who can serve as a "case manager" for you and direct you to all the providers you need (it sounds like your PCP is trying but may not be particularly knowledgeable about TBI). you also need an advocate; someone to go with you to your appointments, support you and help you communicate your problems/needs. if your health insurance is an issue (e.g., it is limiting who you can see, what care you can get, etc.), and it appears it was earlier in the thread, either fight them (i.e., get a lawyer) or get better insurance (or move to that other CA - Canada). although i know you do not want to, you may need to (try to- these days there's no guarantee you would get it, especially since you have continued to work) go on disability so that you can get MCare/Caid which, imo, will allow you more flexibility in care options.

    4. the only charge for my services is, after you feel better, when i am in CA (my sister lives in Berkeley) you have to buy me a beer at one of your fancy Cali. micro-breweries.
  10. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    Today I'm going to shoot for 20 meters! :-)

    I get to go about 10 miles today. Physical therapy isn't too far.
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  11. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    I'm sure like many of us, you work too much already, so cut it out! :-)

    I hear you on the other stuff and care is getting better. I'm supposed to be able to see any doctor anywhere I want without issue. The biggest challenge has been finding them and then waiting forever to see someone just to find out they aren't able to help. Today I will be more aggressive with figuring out BIACAL. Yesterday was too busy and I couldn't give it the focus I needed.

    You're right about the advocate... I'm so used to taking care of myself, I made light of everything and didn't let my wife know how bad things were until recently... about the day the pain got too bad to handle. Thee is a lesson here in that "suck it up buttercup" does not apply when you get hurt like this. I didn't want my wife, daughter, mom, brother, etc. to worry, so like a wounded animal, I hid it as best I could. Bad move.

    Thanks to all the great folks here, I am making positive, albeit, slow progress. I'm also finding that I have more vocabulary than I had even a month ago and although I am often using the wrong word, before that word wasn't even there.

    It would be my pleasure to grab a beer with you. We have beer so fancy, some requires mustache wax on your handlebar mustache, a lumberjack beard and flannel just to drink it :lol3
  12. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    Reached out to BIACAL again today, yesterday I just plain forgot...
    They pointed me to a place called Schurig Center who lists one localish resource for me.
    I called but they don't have a Neuropsychiatrist that sees people, just the executive director.

    So back to calling Schurig again tomorrow, they are only open 10-3, 3 days per week.
    This search has been all consuming, very difficult and I'm left weak and drained, yet it's only 330pm.
    When I do find good information, I often can't understand it and have to set it aside for another time or ask my wife to read it.
    I try to not scare her, so I still don't give her all the details.

    If any of you are ever thinking of a career change, a private patient advocate seems like it would be huge. I'm continually lost, confused and frankly weak minded... ready to give up because it's too hard.
    The only problem would be the ability to afford the help.

    This is just one of those things in life that is never discussed and isn't "supposed" to happen to me for 30+ years still... I'd go live with my wife's grandfather in his late stage memory care facility, but he's started crapping on the floor and I prefer a roommate to be slightly more hygienic. Pissing is one thing, but I draw the line at pooping.

    anyhow, fun stuff. I called the place I'm getting the neuropsych assessment because I thought maybe they would have someone but they don't. Then I asked about the paperwork they said I have to fill out before going on the 6th and she got angry with me, like I'm a child. "I told you when we scheduled the appointment that I would send the paperwork two weeks before your appointment. I will send it then so please wait until then" and then she said goodbye and hung up. Crap, I've become that guy...

    Owell, I guess if people are going to treat me that way, I can start acting like I'm 75 and go into crotchety (I can't remember all my words but I remembered how to use thesaurus :lol3) mode!

    PT was a bust but I'm going to give it one more shot. It's more geriatric feeling than what I need. 3 small exercises and some Estim (I still hate it) and something that felt like a slab of meat that "dilates your blood cells and stimulates blood flow to improve healing". They have no idea what it is or does, but seems like an infrared heating pad sealed in a 10lb silicone mat. Seems to me, it was a way to bill for an hour but leave me locked in a dark room for 30 minutes and lying on a rock hard massage table only caused more pain. I'd like to not repeat either of those 2 activities. - Damn, I do sound like a grumpy old man. I've found my calling!

    My ortho is a sports medicine guy, I was hoping to get sports medicine style, kick your ass and take you to within inches of your life style rehab so that I can get on with life but I got a kinder, gentler approach because they don't want me to have pain doing it. No amount of explaining that I hurt all the time, every day, a little more means nothing, bring it on... well, it didn't help. I did get in trouble because they started me on a recumbent bike with so little resistance it sucked to pedal, so when he walked away, I cranked up the resistance really high. I guess I'm not supposed to work on strength, just motion. Gah!

    I incorrectly assumed that a licensed Physical Therapist has knowledge of injuries, anatomy/physiology, etc. It seems that EITHER you only need one and I've not met that person yet OR it's a 90 day certification course with no education requirements. Very nice people, and I'm sure they would be great for the nursing home crowd but I don't feel aligned in goal or method.

    also, I've thought about things a lot and I'm strongly considering at least getting paperwork in order for disability, just in case I need to do it. Right now, I think I can cope but some of my bad days are really bad... my good days, well they aren't great but they give me hope.

    Thanks to recommendations here I also have two books coming so thank you to those that insisted. I need that kick in the ass at times... most of the time... ok, all the time lately.
    New Hope for Concussions Tbi & Ptsd
    YOU CAN'T AFFORD THE LUXURY OF A NEGATIVE THOUGHT


    More recommendations and I apologize for not remembering who... I think a few people actually recommended hormonal checks.
    I saw my endocrinologist today (because diabetes) and asked her what her thoughts were. She said 'absolutely' and ordered the labs.
    If I can remember to not eat anything when I get up tomorrow, I will go do them then. It's a 12h fasting lab.

    PT tomorrow and EMG #1 on Friday.

    Motto for today: Whatever doesn't kill you but keeps fucking with you every day, is probably a giant invisible cat keeping you alive for its own amusement.
  13. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    I'm going to post this one other place for someone who isn't reading this thread but needs to see it.
    I met a really great ADV member today that made me genuinely smile today for the first time in... well I don't know.
    Not a quick smirk but he gave me a future that I just couldn't see was staring me in the face.

    He also shared this with me and I think it's going to everyone I know.
    His was printed but I found it online - https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know
    also, equally important: https://www.brainline.org/article/9-things-not-say-someone-brain-injury

    @SPX - Thank you. You may know it already but your time today was eye opening, to say the least. (this isn't JoMomma so don't go there!) :beerd
  14. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    upload_2017-9-15_18-52-6.png

    Small recap, I'll keep it short.
    Monday was pain mgmt. doctor. He can't help me unless I want narcotics. I don't.
    Tuesday - PT - was a little better but not great.
    Wednesday - got lab order from Endocrinologist for pituitary function
    Thursday - Labs then PT. Getting better. We talked, I think he understands I need more than getting out of a wheelchair style therapy. He pushed me some, I felt much better about it
    Friday - EMG #1, Arms. No detectable nerve damage, no neuropathic damage, all is good. So that's awesome but still no diagnosis on arms/hands. I'm ok with that though.

    Tired, sore, need a nap or 2. I've been up since 230am today! I think I'll sleep well tonight.

    Next week, I have PT and EMG #2 scheduled.
    No contact yet with a Neuropsychiatrist... more elusive than a Jackalope!
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  15. CavReconSGT

    CavReconSGT Just the right amount of evil.

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    Is the pain worse in one arm or leg than another? Another words would it be easy to decide which limb would make the biggest difference in you day to day activity? If this is the case have you asked if a nerve block could help? A nerve block might help do a pain reboot for you. Again, I'm no doctor but these are some of the procedures they tried on my wife. Asking questions, and knowing what to ask is very important with doctors.

    Good luck,
    KR
  16. trc.rhubarb

    trc.rhubarb ZoomSplat!

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    Ahh, yes... Thank you. I forgot that fine point. The pain doctor did offer to try some experimental epidural injections to see if it would help. He then offered that if they helped, we could cauterize the nerves which would last longer than the epidural. He said I should get the EMGs done first because they might shine light on stuff.

    For me the pain moves around all the time. It's weird like that and somewhat confusing to the docs. Sometimes lower back is fine but upper right is bad, or lower left, legs, you name it

    The worst pain is top of my head when it comes around. Short of amputation, he can't help me with the head pain and he didn't recommend the amputation.
    He said it's guaranteed to relieve the pain but it carries strong risks of speech impediment.
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  17. cprbusa

    cprbusa Adventurer

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    "but it carries strong risks of speech impediment."

    They make these little blue pills for that...




    Ummm...
    Not that I would know.
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  18. SPX

    SPX Been here awhile

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    It was a true pleasure to meet you and talk with you. I'll get in touch next time that I'm in town as I would enjoy stopping by to say hello.

    Until we meet again, know that your future is bright, you're not alone, others have traveled this path before, and you WILL be ok!

    I'm here for you any time that you need an ear.
  19. JimRidesThis

    JimRidesThis Local celebrity

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    Wow, this is a long and winding journey you're on @trc.rhubarb

    I have a back condition that has meant varying levels of pain from the last 15 years or more. Sometimes I'm in my own pit of agony, most of the time it's a dull ache which I've learned to block out. I've tried all sorts to alleviate the pain to try and get back to a 'normal' life from prescription medicines to meditation (I'm no new-age type, but it sometimes works). The depression you feel may well be due to long term pain and how the brain deals with it, or not.

    I have to say +1 on the TENS machine - brilliant devices if you can isolate the pain centres.
  20. husqvarna

    husqvarna Been here awhile

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    I feel for you trc. You are in the motogp of pain - I've been in the pit bike division with, of all things, shingles. Now I've had the usual motorbike / bicycle related injuries; properly smashed knee, crushed vertebrae, broken ribs, collapsed lung, broken collarbone etc but all were controllable. Not Mr Shingles; he was insidious after a slow start made my life misery, destroying my sleep and hence my work hours; and I'm self-employed.

    Now I tried a lot of things; a few doctors, many, many pills (I swallowed more in 4 months that the rest of my life I reckon), some "herb" oil (from a doctor friend) and smokables, nothing really helped. Some things masked the pain, nothing controlled it. Whether by luck or timing it started to wane after a visit to, of all things, a homeopath who'd had shingles herself and confidently prescribed some little pills!! But it took 4 months. My next trial would have been a recommendation to dose myself with a specific brand of gun oil; I kid you not.

    My lesson; try find someone in the medical field (ideally a doctor - I had two; a friend and my GP; both really tried) who takes your case personally and keeps trying different stuff; making and evaluating others' suggestions, trying to get to the bottom of your problem and will work within your parameters.

    The very best of luck.
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