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    Old 03-24-2007, 07:26 AM   #1
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    Help Me Please Anyone

    I am at my wits end. I don't write much anymore but did once under a different name. I am an air force wife based in florida now. I was in a high speed, head on collision 4 yrs ago in England. when the driver just forgot which lane to drive in at about eighty miles per hour. I know everyone has their list so here's mine if it helps someone help me. I had multiple >12 pelvic fractures (verticle) from just inside the sacroilliac joint that ran in a connect the dot pattern along the neural foramina toward the tail bone. Despite the number of breaks none were displaced greater than about two mm so they opted against surgery but orthos now say that was a wrong move that locked me out and left me like an "old house". I was in a small military hospital in the country without highly sophisticted care. I have a few horror stories if the 6o'clock news wants them actually! The biggest injury was to the nerves that feed through the area (cauda equina)like a large circuit system. I was largely unconscious, but for the moments I woke and afterward I was grossly undermedicated by a doctor who was fresh out of medical school and hadn't had a residency (military remember) I felt I was hanging by a meat hook in a horror movie. This was very different from the sciatic nerve pain I had experienced through my proudly natural pregnancy and since but it's relentless and there is only so much grating nerve pain anyone can handle before they are just going to snap. I have Cauda Equina Syndrome. I was a dancer and a pilot. I worked in Broadway theatre and only 26 when this happened to me so my emotional strength has wavered. I've lost my career (aviation actually, not theatre), like most of you here. I'm now turned 32 and can't imagine another year of showers or meals or laying in bed all the time when I want to be skiing. This past month I simply tried to do some toe presses with very light bands and within 24 hours you could see my legs cripple up in random muscular patterens. I couldn't feel my legs for the first two weeks so I should feel lucky, I know, but i don't, I'm sorry. I still feel very unlucky. My seven year old is unlucky to have a cranky, edgy, tired mom with no time for her. It can seem like just listening is asking too much. I am terrible at asking for help because I hate to sound like I'm complaining and I am usually told how I should feel glad that others are worse off than me but that just makes the meaning of life seem to be suffering and pain. I still know I have something to live for if I could only feel better which is why I want the spinal cord stimulator. I have been through four full courses of PT, I had 18 yrs of *real* yoga, before it was exploited by the soccer mom and sticky mat boom. Now, I couldn't find real yoga anywhere anymore even if I could do it. I was a born meditator. I can't approach it or a page of reading from the pain distracting me and also b'cause I had a brain injury from the 130combined speed impact. I used a great osteopath in England for body work. Accupuncture by a good Chinese doctor with the prescriptions he would make for me, lots of self harnessing of natural forces that I discovered ( falconry time with my birds of prey, inertia, distraction, PTSD therapy, the LOST island haha) so I have the fighting spirit I'm just tired of fighting. I also have to differ with some approaches on pain control. some people push so many routes before allowing any narcotic. I couldn't approach the other methods without having some of the pain delt with. I have had to retype over and over because I am so ditracted by the sensations of pain. It's impossible to use the techiniques that got me through 19 hours of natural childbirth. If you think that doesn't hurt, try it. But it was nothing compared to what these injuries have been like and the emotional road my husband and I have been on ever since.
    MY current meds: methadone 30-40mg/dy after fentanyl patch at 125 every 48 hours failed, Gabapentin now switching to Topamax. Sleep is dreaded because no position is comfortable even with a tempurpedic mattress. I have Ambien, Soma, Valium, Rozarem, Restoril. I've also tried Elavil but years ago and Cymbalta at the same time as Lyrica and felt like I wanted to rip my clothes off and jump off a bridge. I thought I was going crazy. I was a solid, professionally driven, young mom at the time of the crash. I also had my L5 broken with disk herniation at L5/S1 and L4 and up to L3 but I almost feel I could handle that pain or at least live with it without jumping off a bridge if they could just fix my pelvis and legs. It's the peripheral nerve pain from the sacrum damage that causes my legs to look like my leg muscles are at war against me plus they always feel like a tooth ache type pain only on a much larger scale.
    I went to my pain doc this week and said, "that's it, I want the electronic spinal cord stimulator". I don't want to mess around anymore and I fear that for my own safety I must ask them to intervene ASAP, which is what is leading me to swallow my pride and write and reach out for help. It just seems that everyone else has others that understand their type of surgery or disease or complaint but Cauda Equina Syndrome is known precisely for being so isolating. I welcome any response even if it doesn't apply. My little girl loves me so much and I just know my soul looks like her face. I'll tell you guys anything if you think you may be on to something. I appreciate it.

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    Old 03-24-2007, 09:32 AM   #2
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    Re: Help Me Please Anyone

    Oh Jennelle-
    My heart goes out to you sweetie. I am so, SO sorry you are living with so much pain. I understand how you feel when people tell you to be thankful that you don't have it as bad as others. It kind of makes you feel like your pain and suffering seems insignifigant to the people who say this to you. I KNOW there are many other people who have it worse than me, and yes I am thankful that I can at least do some of the things I love to do as a mom & a wife, BUT that doesn't take away from the fact that I live with pain each and every day of my life. Some days are better than others, but there are days that I just can't function. Sometimes I go for weeks with very high pain levels that just don't want to ease up even just a little. I know some people are just trying to help when they tell you that others have it worse than you, but they speak from inexperience because they don't know what long term, intractable pain is.

    I can't give you any of the answers you are seeking because my pain issues are totally different than yours. I wish I could give you some answers. Please do continue to check back because there are people here who can help you.

    I just wanted you to know that we are here for you and you can come here any time for support, guidance and information. I will keep you and your family in my thoughts & prayers. Don't give up hope sweetie. You sound like you have a wonderful daughter and family and I and keeping postive thoughts that you will find the help & relief from pain that you truly deserve. Take care!

    Last edited by HBMod07; 03-24-2007 at 05:33 PM.

    Old 03-24-2007, 09:34 AM   #3
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    Re: Help Me Please Anyone

    Welcome to the board, again. I'm sorry to hear your story. I'm sure someone with more knowledge of back pain will come along soon. My husband has RSD in his legs from a side impact MVA, but just had an MRI that also shows "multi-level degenerative spondylosis and multi-level disc desiccation L1-5", etc. Now he knows why his back is hurting, despite being on Methadone, Lyrica and Norco. He cannot sleep in a bed at all. We even bought a new expensive bed a few years ago because we thought that was the problem (not knowing how bad his back was). In any case, a suggestion might be to try sleeping in a recliner. He says his back does not hurt at all when he does that, and sleeps well (too long actually--12 hours). He did have a trial of a SCS and could not get coverage to his ankles (some people have had good results, so be sure to do a trial first).

    Last edited by HBMod07; 03-24-2007 at 05:33 PM.

    Old 03-24-2007, 04:17 PM   #4
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    Re: Help Me Please Anyone

    I am so sorry about your situation.
    I just wanted to say I think we all understand. Especially the 'unrelenting' part. Sometimes when you have no relief you tend to 'lose it'(if you know what I mean). People don't understand that the 'not going away' part of the pain is almost worse that the actual pain. Am I making sense.

    Hang in there and good luck. Maybe Dave will pop in with some insight.
    undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

    Last edited by HBMod07; 03-24-2007 at 05:34 PM.

    Old 03-30-2007, 10:36 AM   #5
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    Re: Help Me Please Anyone

    Hi Jenelle, I guess you name cought my attn because it's how my wife spells her name. Not everyone is able to find relief in a matter of months or even a few years. If you were injured prior to 96, opiates simply weren't used if you weren't dying or for imediate post op pain. It took me 7 years, 3 surgeries that failed, 3 PM clinics where I spent a month 8 hours a day learning all the techniques you have mentioned. I saw a dozen other docs that used chiropractic, acupucnture, trigger point injections, nerve blocks,epidurals, myofacial release. I've done 3 comprehensive psych evals and they sent me to several PM psychologists before the first opiate was offered as a last resort.

    I was told I wasn't going to get better, I had met maximum medical benefit from PT and surgery and my prognosis was further loss of function and intractable pain before I met a doc that believed some people do benefit from opiates.

    Even to their surprise, after 3 -4 years on high dose oral meds, I had a pump implanted and I have gotten better as each year passes. My spine didn't heal or fuse , the hardware is still broken, But I am able to manage enough pain to engage in activity that distracts me and allows me to feel productive. The pump was a miracle for me and I could be the poster boy for the benefits of Intrathecal med use. I went from being able to stand no longer than 10 minutes without breaking into a sweat, every muscle going into spasm and looking for a place to lay down, to excercising a half hour twice a day and returning to work part time. It's part time in # of days worked, but I do work 8-10 hour days 3-4 days a week. I do pay for it that night and all the next day. However the benefit of not being isolated far outweighs any pain I experience after working 10 hours on my feet.

    There are things aside from a SCS which is certainly worth a trial. You also may be a candidate for a pump. Baclofen is the drug of choice for MS and muscle spasticity, It's far more effctive when delivered by pump and you simply couldn't take enogh oral baclofen to benefit the way IT baclofen works. OPiates are also far more effective when delivered by pump into the intrathecal space where you have exponentially more opiate receptors. Have you had or tried nerve blocks, sometimes just a break from the pain and numbing things gives you a chance to clear your head and rethink what you want to due and are willing to try.

    If your are still in the military or still using Mlitary/VA hospitals, a pump may never be offered, you may have to go outside your present loop of docs to get a different opinion on when and who pumps should be used on, But it is by far the most efficient way to deliver any medication with the least side efects.

    My daughter was also what gave me strength to get through what I proabbaly couldn't have without clinging to that life force. I used to call it honey bun power, She will never know what she was able to do for me as far as keeping the strength to continue through years of poor treatment and denial of any pain medication or even an acurate DX untill hardware snapped that was undiniable proof of the failure of surgery and cause of the pain.

    Once I had the pump, It took several years to find the right med, the right dose. Then I had to realize, I was going to be in pain whether I spent the day on the couch or I pushed myslef harder than any doc or PT would have ever asked. I was also told I was lucky to be able to walk and should be greatful, but for some reason that's not comforting when you have no quality of life.

    However, there is life after these types of injury, there are meds and doses and techniques I'm sure you haven't tried and may never be offered untill you get a fresh perspective and go outside the military/VA system of pain management or your present group of docs that just won't offer what they don't believe in.

    Dancing may never be a reasonable goal given your inuries, but many things other take for granted, can be acomplished once your pain is stabalized and at a level you can function at and cope with.At that point it is your decsion to stay inside or to get out and experience life whether it causes a flair that night or the next day.

    Your right, there is nothing worse than the isolation, feeling your not contributing to society or when you have nothing to talk about other than what you saw on TV that day for the 3rd time in 2 years. Part of the equation is what the docs do for you, but an equal part is what can you do for yourself to learn to cope with your new life and accept your new limitations and overcome those you thought you couldn't.

    It's not a happy analogy, but the only difference between a drunk in a bar, mad at the world and a jerk to everyone he meets because he's confined to a wheelchair and the guy in a wheelchair that struggles to shower, get to work and coaches a rec league basketball team for kids is 90% attitude. My basketball coach in the 5th grade was confined to a wheelhair, he couldn't dribble a ball because his hands were curled from paralysis. He had a brilliant mind and worked with my dad as an engineer developing new airplanes for the navy and he made time for the things that gave his life meaning and value. That's something only we can do, no pill can give someones life meaning. It may reduce the pain, but how we take advantage of that relief is entirely up to us.
    Take care and don't give up, David

    Last edited by Shoreline; 03-30-2007 at 11:03 AM.

    Old 03-30-2007, 10:18 PM   #6
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    Help Me/pump/stimulator/pain docs

    I want to thank everyone who wrote to or otherwise inspired me. I was in such a pit of despair. I had no hope left. I wanted to reach out to everyone and yet there was one person in particular who's written over 2,200 posts that I just knew I had to speak to. Everyone here has something to offer each other even if it's just a seed you plant but never see grow.

    I had my fifth set of nerve blocks on Tuesday. They have never helped me but this time he entered seven or eight areas including the caudal nerve and so far I do have some relief and Dave was right, I needed to have a moment to catch a break and think about what's next. I noticed that I've been putting up with a bad doc for far too long out of desperation. He shouted at me (again). He looses his temper with his nurses and his patients and I think he needs to retire but I find myself defending him when someone accompanies me to his office and questions me about him. My husband thinks the days of doctors that sit down and listen to you are over but that's just because he's an active duty air force pilot, who's healthy as a horse so he doesn't know to demand that from specialty PM docs for me now and really, I think we were so naive when we started all this 4 years ago. He gets out of the air force in two months so we switch to "normal" insurance which we hope will be a better road. I know how many people out there don't have any insurance at all. When we were living in Europe we were alway questioned about our system. They don't understand it when everyone there has guaranteed coverage from birth. I also found that our current military coverage doesn't cover the spinal cord stimulator through pain management but still may cover it through a neurosurgeon. I didn't know that they are different procedure codes and PM docs install it so they can be removed but neurosurgeons put them in in a more permanent manner. I don't know much more than that so anything you guys can offer I would welcome. When I was still in the UK, my Pain doc said that I would meet docs here who would want to put them into me but that he really felt it was the wrong solution for me. I don't think he knew about the different options for insertion here? Is that possible?

    I am meeting with a new PM doc on Thursday. I found out he actually sits down with you for 30 to 60 minutes! I'm so angry right now after I waited for nearly three hours for the blocks and then my doctor got angry with me that he had to wait for me to get my shoes back on to go to the surgery room and he shouted at me for not being ready! I cried and cried over such a silly thing. It's amazing how broken you can become when you aren't working or fulfilling yourself the way you want to be.

    The biggest headache happened yesterday though in the middle of all this. I had to get new scans for the neurosurgeon. The radiologist was at the base and I was brought back alone. I got stuck on the table unable to move with the tech hitting on me. He ended up assaulting me. Not ****** just groping and I noticed he put me into a bunch of positions that did not require a film and were very painful like deep back bends. I can't write what he did on here. I spent the night tonight in the police dept. I'm okay. I just don't want that to happen to a young girl and he was alone with a girl just prior to me going back with him. I think he could end up in jail. It's such a waste.

    I will be asking about the pump when I see the new PM doc this week. I just know there has to be a better solution for my legs in particular.

    I hope I see things I can give an answer to here and there as well.


    Old 04-01-2007, 05:23 PM   #7
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    Re: Help Me Please Anyone

    What am I to expect from the new pain doc I see on Thursday? It's been so long and under the same insurance policy that I don't know what is normal anymore. I have fresh nerve blocks that are working for the first time and this is the fifth set. I have also had about five or six sets of trigger point injections that have also failed. I've been ready to fight for the Spinal cord stimulator but if this new doc, in concert with the neurosurgeon I am seeing feels there is a better alternative, then I am open but I was just so tired of the fight. Now, I have some fight building back in me but I still don't know what to get from a doctor anymore. I know they are as varied as the stars and that this one will spend about an hour with me. Given my conditions, listed below, anyone know what what they think I'll get out of it?
    Thank you. I really wish I could read uncensored thoughts. It's hard to know what someone's answer is when so many are adjusted but it's not my site. -jenelle

    Old 04-01-2007, 07:24 PM   #8
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    Re: Help Me Please Anyone

    Hi Jenelle,
    I am so sorry you have gone through such a horrible ordeal. Your pain comes through loud and clear and let me say you are in a safe place to vent all you want, We all know what its like to get sick and tired of 'counting our blessings' and needing to spend some time mourning the loss of the lives we loved and worked so hard to have.
    Anger is a good thing too, I punch my son's kickboxing dummy until I know I better stop or I will be in agony, but some days I wish the thing screamed when I hit it so I would feel better faster, LOL

    The other thing that comes through loud and clear in your post is that you are a woman of extraordinary talents and imagination, I know that whatever life throws at you, you will find a way to be and do and have the things you need not only to be happy, but to bring happiness to those around you.

    One thing someone told me recently that made me smile was 'when life gives you lemons, find someone whos life has given them tequilia and have a party'
    You strike me as the kind of person who will always find a way, maybe you will write a book, or go on to help others in our situation in another way, But I have a strong feeling that the last chapter of your story has not been written yet, not even close.

    Hang in there and please keep coming here, Its so helpful at least for me to be around people who really truly understand what chronic pain does to your entire life.

    Thanks for posting so poignantly and honestly, I look forward to hearing more from you,
    Your Friend, Fabby
    PS~ As far as what to expect on Thursday, I would say if you just tell him everything you have told us here, and ask to be treated at a whole person, rather than a set of symptoms, you have every right to expect to be treated with compassion and respect, the fact that they allow so much time for new appointments is a good sign that they want to hear what YOU think, rather than just telling you what they are willing to do. Hold your head up and tell them everything, we'll be sending good thoughts your way, please post after your appointment and let us know how it went.

    Last edited by Fabrashamx; 04-01-2007 at 07:35 PM.

    Old 04-02-2007, 09:28 AM   #9
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    Re: Help Me Please Anyone


    How my heart bleeds for you and for your daughter who deserves to have her mother back...Honey, if I could take some of your pain, I would just scoop it up and add it in to the mess I already have and bear the burden for you for awhile.

    One thing. My husband is retired career AF. We have found that the TRI CARE is great as a secondary insurer, but I am not sure that I would care for it as a primary. Also, if you are using the flight surgeon at this time, it will be an adjustment for you, care wise.....

    When you go to the PM doctor, take with you a list of what you have used, or tried, what you felt helped, what side effects you had, what you would like to see happen over a period of time. We would all like to be pain free, but the goal of most PMs is to get you to a reasonalble quality of life, say 4-5 range...which can be pretty good you know...

    Personally, I would take your husband with you. Not only because he is in this with you, but it is an extra set of ears, and it is easy to mis-hear - or should I say, mis-wish? things? And also, because, please don't take offense at this...if this is an active duty get my point. You are the dependant...and yes, I have had that said to me...only once..I might I add. I precluded any sensibility training But, it does help to have the "shirt" with you. Moral support if nothing else.

    I would be glad for the time allotted. It shows that the PM is willing to listen and to try and get to the bottom of the issue to try and start building a support system for you. Please don't be discouraged if he doesn't want to start off with the pump right off the bat.

    And Janelle, don't let that old bat yell at you again. I don't care how good he is! Next time tell him, fine, you put my shoes on and I won't keep you waiting!

    Hang in there girl! If it's a group of fighters to help support you, you have stumbled on the right place, and that is the way most of us got here. We all seem to have had a guaradian angel gently guiding us here when the time was right.....


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