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New here and desperate for relief plz read

BarbAug1BBarbAug1 Posts: 23
edited 06/11/2012 - 7:40 AM in Back Surgery and Neck Surgery
Hello ev1 my name is Barbera I am 29 and in dire need of "real" human advice. when i was 12 i was in 2 major accidents the first i was in a hatchback of a car and we rolled it 7 times. broke my shoulder and clavicle and "stress fractured?" the discs between my shoulders less than 6 months later my father and i wrapped a international truck around a tree and i was stuck in between the tree and truck again braking my shoulder clavicle and doing a number on my back . all my life ive had anyone who would walk on my back as it is only way to give me any relief.for the last five yrs its gotten terrible i wake up all nite over and over sometimes it gets so aggrevating i cry. i wake up every morning without fail in absolute pain. i dont mean the typical stiff neck and achey feeling ive dealt with all these yrs i mean actual pain the kind that makes u get up there is no waking up u gotta move it hurts like crazy.. feels like it broke in my sleep or lack of.I have had steriod shots so many times i lost count .. this last time i was givin 10 shots from the back of my neck to my shoulder blades and to be honest it only made it worse. I am no cry baby ive played sports and last few yrs been coaching i thought coaching would keep me at least as part of the game but even the simple act of teaching a 7 yr old how to swing a bat properly is far more painfull than i am willing to deal with anymore.. i had a mri last week and i get results on 7th {my dr is on vacation} i am concerned as to what they want to do and what it is.. see i have very bad luck im on my 5th yr of remission from cancer ,, they took all my plumbing and some intestine and multiple fibroid tumors... my concern being ive been told several times that i could have fibromyalgia that my back should of healed by now. can someone pls give me a lil insight as to what im looking at and what fibromyalgia is really..i live in a very very small town and my dr is a smalltown private dr sooo.... ive read up on it and yes my symptoms are on the nose but i just dont think my luck is so bad as to have a blown out back and that? i have 4 children and a husband on niteshift who relys on me for everything down to picking his outfit out everyday.. I really appreciate those of u who take the time...


  • Can you be specific as to what damage has been done to your back Barb? Do you have the benefit of an experienced orthapedic surgeon caring for you - you say you live in a small town. It sounds like you need an experienced surgeon urgently.

    Hopefully someone who has been diagnosed with fibromyalgia will come along and give you some advice about that. I am unable to help but saw nobody had replied to you and you sound so desperate.

    Sounds like you need some help, starting with your husband. He's not your 5th child, he's an adult and working is not his only responsibility in life. I hope this forum can offer you some support and good advice. Hoping for some progress for you in 2010. Good luck!
  • Sounds like you are being consumed by all your pain. Sorry to hear you are suffering so much. Agree with the above post about seeing a spine specialist. Don't jump to any conclusions until you get your test results. Keep us posted.

    Best wishes,

  • I unfortunately cannot offer advice, but can offer well wishes and prayers that you can get some help and relief by some of the folks here.

    Best of Luck,
  • Welcome to the forums! I'm so sorry you've had such bad luck in your very young life!

    First off, JenG is right. You need the opinion of an orthopedic surgeon or a neurosurgeon. I, too, live in a small town, but we have specialists that visit our Specialty Care Clinic, and I very rarely have to leave town for a specialist. You may want to ask your doc about this, and ask for a referral.

    As far as the fibromyalgia goes, you need to be diagnosed by a medical professional with that, too. I've dealt with this dread disease for many years. But with the pain you're dealing with from your back, it may give you many of the symptoms of FMS, but not actually be FMS. After I'd had my surgery, I felt a lot better for a time, including my fibro symptoms. My rheumatologist said that it may not have been a true FMS, but the result of the pain from my neck. Sadly, a bit further into my recovery I discovered this wasn't the case. But everyone's different, and our bodies all deal with pain in very different ways.

    First things first, though. Get your doctor to give you a referral for a spine specialist, and a pain management doctor. They are more qualified to interpret the MRI findings, and may be able to alleviate your pain. And JenG has another very good point...get your husband to help out a bit more. It's very hard to function when you're in such pain, and he can do many things to help you out, beginning with picking out his own clothes :LOL:
  • unfortunately i dont have a specialist near me my dr said ide have to go to seattle for anything they find and as far as being specific on damage done to my back i was so young i dont know exactly what they told my mom but my dr said my old records said stress fractures around the tspine.. to me this is spanglish lol thank goodness for google lol. as far as surgeans i am n the first stage i guess cuz to be honest after the cancer last thing i was willing to do was look for someone to cut on me again.. i went thru 7 operations in 2005 lol i just dealt with the pain lol.. and yes especially today im feeling concsumed by my pain.. im just sooooo tired and i do get depressed when i get badly flared but im not going to lie to you ppl i turn into a very grumpy zombie.. im always so dam tired i feel a fog and like my body is 100 pounds heavier... and yes i just feel really let down going thru this with all these kids and no support has finally got me down to my final straws i just cant do it any more.. I need help
  • I'm not surprised you turn into a grumpy zombie. Having good health and four kids (5?) would probably do the same to me, let alone with all the pain and worry you've been through.

    Do you have family nearby? Is there someone - help agencies - you could appeal to for help? I'm in Australia so don't know what's available to you in the US. Other than that, you need to sit your family down and tell them that you've reached the end of your tether. That another long medical journey is beginning which will take you away to Seattle for help. That you are going to put things in motion because you can't go on the way you have. And that you're going to need all their support and love that they can offer. Directly to your husband, you must ask him to help because you need to rest more and have less stress. Then put into motion the chain of events that will lead you to better health. You're so young, but don't waste another day.

    Easy for me to say, I know! Good luck Barb!
  • and no i have no family i refuse to have them in my life they killed my mother.. I have one homeless brother who would give me the world if he could but he has a drinking problem i cant have my kids see. i grew up watching my parents do it i refuse to allow my kids to see that.. ive laid down the law ive cried and begged i give i dont know what else to do.. some ppl are genuinely self appointed royalty and dont care what u do for them as long as u keep on doing for them lol.. im sorry im just at a total loss today i feel very betrayed and sad and just done..
  • I feel for you in your situation. You must stop trying to feel responsible for everything. How old are your kids? Can you take an hour for yourself everyday to rest in your room with your door closed? Would you rest? Or be worried about them? Please see your doctor asap and get a referral. These things take time...time to get an appt with a surgeon..and you may need to get a few opinions if you're not happy with the first one. If nobody is going to help you, you must help yourself. You owe it to yourself. If you go to Seattle, would you need to be away overnight? There are too many things I don't know to be able to offer specific advice, except you do need to help yourself. Being not so available to your kids and husband can only teach them a little more independence, hopefully. Which is a good thing. If you have surgery, for example, they are going to need to stand on their own feet for a while.

    Is there any sort of community help available? Help in the home, help to get you to Seattle and maybe help to stay there overnight if necessary? Emotional support? Help with the kids if they are young? Salvation Army etc. offer all these types of things here but I don't know what's available in your home town. I just hope you don't have to go through this "alone".
  • in life all we can truelly depend on is ourselvs and even then sometimes we are let down.. i want to believe they will help they r 16 12 11 8 and 41.. i suppose i should just breath , research my options after the 7th as far as operations go and as far as my family i guess if i cant get up to do it then either they do or itll be waiting for me when i can.. lol thank u soooooo much for ur advice its nice to hear im not the only one going bonkers over owies lol
  • It'd be nice to just wave a magic wand and get it over and done with. The search for the right surgeon, the tests and all the waiting is laborious and frustrating (and costly) even if you have support. I hope you find that support Barb, but you will probably need to explain why you need it and ask for it. Sometimes families can really come to the fore. Perhaps you've been too stoic and they haven't realised how much pain you're suffering. Let us know how you go, but don't waste any more time to get the ball rolling. I hope others here might come in and offer some sort of advice as well.
  • and yes i think u nailed it i have played tuff for so long that they dont know what my limits really are.. just the last year have i really let my front down.. i grew up in a ruff family and whining was a waste of time.. i forgot to to mention in my earlier posts that part of the annoyance and pain is very wierd.. the "briskett" or breast bone between my breasts isnt solid or secure it crackles pops and feels out as well.. its associated with a bad headache and the base of my head feels stoved up.. does anyone else experience any of this? see now that im a whining i cant stop haha.. hope all is well with ev1 tonite and again Jen u are very kind...
  • Jeepers Barb, that's not whining! That's what these places are for, to say what's going on with our backs and how it affects our lives and hope that someone out there understands and can offer some advice which might help, or lift our spirits. There is always someone out there who's doing it tough and knows exactly what you're going through. Some of us have come out the other side and are happy to show some understanding and support. I hope you get that referral soon.
  • again u make me think lol as funny as it sounds i keep my phone on all nite and am always willing to lend my ear out for those who need a friend. yet when i reach out i feel pathetic lol,,i feel very humbled . Thank you,, todays been a ruff one. my husbands been sick for a few days and now our middle boy is sick also,, i dont know if its my back or whatever they got goin on but i am wearing sunglasses to look at screen my head feels like a migraine again i mention that feeling of fire at the base of my head,, i think the last few days that my backs been at a all time high in flare ups that the gaurding i do is causing my headache,, meaning like when i lay down i can only lay on my stomach with a pillow under my chest and head hangin or on my back with small pillow to support my neck and ima side sleeper lol so im up and down i tried testing myself to see if ide let myself lay there or what like u asked me and sadly if i could find a spot to lay in without the sharp stabbing ide totally stay down maybe even sleep,, but i couldnt lol dang it, so now i know yes i can shut my door and lay down regardless if they want me to or not, i was just fed up enuff i really didnt care i knew i needed to try and now i know i need to try more lol welp im off for tonite i appreciate your genuineness thank you everyone and especially Jen
  • SpineAZSpineAZ WiscPosts: 1,084
    It's hard to tell what may have happened and how it could be affecting you now. If you had stress fractures of the vertebrae these would be healed and might not be seen on an xray as an old injury as stress fractures are very faint in xray findings and once healed often not seen. A complete or more severe fracture can be seen even after healing as there is bone delineation where the healing was. But the younger in happened the more likely fractures are harder to see on later xrays.

    If you had disc damage from any of the accidents or cumulative further injury over time then that should show on the MRI. Disc can bulge, herniate, or desiccate - all indicate different types of disc problems.

    Once you get the MRI ask for a print out of the radiologists report. It will likely start with discussing all the findings and then the "Impression" area is a summary of the findings that we may be able to help you with.

    Given your past problems make sure to get MRI of all levels of the spine if possible. Is your pain more lumbar, thoracic, or cervical (or perhaps all of the aboove)?

    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • that is something i didnt consider. i am glad u mentioned that, yes i will get a printout and first thing ill do is run it down to u guys, my pain is primarily in between my shoulders from where my neck meets my shoulders to below my shoulder blades and my neck in general,, i have been reading so many posts and the one thing ive found is that some ppl got pain in one area and the actual source is somewhere else for example the sciatic [sorry if misspelled}hurts in leg but actual injury or problem is in lumbar? like ive said before this is all spanglish to me.. now if u ask me about baseball or private investigation i can sit for hours and bs and tell u statistics that noone but me cares about lol,, This is one reason i am so thankfull to have found you guys,,I will definately post as soon as i get back from the app,, again thank u ..you guys are alot of help
  • SpineAZSpineAZ WiscPosts: 1,084
    You should so some research on dermatomes. There are dermatome charts that show "if damage in this nerve then it's felt here" with a diagram. And you can see a chart of how the spine runs from cervical to sacral. I highly recommend you just absorb as much information as you can. Spine Health has some good basic back anatomy information on the main page that may help.

    My cervical spine problems (neck) was felt mostly in numbness, tingling and pain down my left arm and into my index and middle finger. That fist with the levels I had fixed (C5-C7).

    When you see the doctor ask him to write down what he foresees as your actual diagnosis. As the others have said it's important to see a Neurosurgeon and/or Orthopedic Spine Surgeon (they only do spine, no hips or knees, etc). Even if you have to travel it's worth it.

    Yes, the sciatic nerve is affected my nerves in the lower back (lumbar
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • yep i know that one and the shaking in my arm when i hold it up to my chest,, thanks for the suggestion ill look it up now.. i have until the 7th before i get my radioligist report ,, i know it dont usually take that long but he is on vacation,, i am not fond of small town docs especially this one he thinks i am odd cuz i will only take the pills at nite but he also dont have kids,, i will never put my kids in the danger that my parents did that ended me up here,, pills scare me. not to mention the itching and sick stomach ugh no thanks what i got going on now is enuff, i take what i he says at nite only yes i know i am supposed to follow directions but i also know since the cancer to listen to my body first.. im barely 1oo pounds and everything hits me like a freight train.. i wanna wake up and i wanna get to and from safely, maybe im paranoid or uselessly in fear but ide rather feel pain and know my kids are completely without a doubt safe,,
  • Barb,

    I'm new to this site but I've been Through a lot in the past 9 or 10 years. I've had hundreds of injections, a few surgerys and some radiiofrequency. I've even done some experamental treatments. The best thing I can tell you to do is find a good pain management doctor. If you look up they're names on line you can see where they when to school and what the studied. Most pain management doctors are from India or surounding countries. (that's just what I've run accross and I live in the midwest)If a pain management doctor cann't halp you then he'll referr you to a surgion who can. Most pain management docs In my area anyway are wonderful. There are a few that aren't but you just don't go back and look for another.
    Good Luck
    I'm so so sorry your in pain.

  • hi barb
    it takes many exams many many tests to exclude everything else...and a specialist to diagnois fibromyalgia..after treating my back to waistful time shots and pill pusher pain managament doc..i went to neurologist...who put me thru alot of blood test over 68 test..to rule out other things..many exams ..checking tender points..
    full mri's..he then diagnonis with fibro..he was only doc that was listening to all of my syptoms.i believe the esi injections in lumbar area made things worse for me...pls feel free to send me pm anytime ...family kids hubby can stress ya to tears and ya cant be stressed if you have fibro...
    i also got another diagnosis from a rheumo doc..so many hellish things come with this..when ya get to docs and they know what ya got then work from there..
    just asign each person in your house duties and they will do it or they dont eat..plain and simple...my 9 yr old son is the most helpful..he has read up on fibro so he knows what i can do and not...and affoidin stress is key...and get in swimmin or yoga class..
    i have alot of great ideas for ya..
    sorry ya goin thru all this hell..i found ppl thru here that i talk w/daily and we help each other get thru...
    hang in there
    you are not alone
    you got us to help ya
    vent to me anytime
    send pm it ya like
    take care
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Yay Mary, you're just what Barb needs! Someone who's been there, done that, to give her some direction and understanding and what to expect.
  • ok so here are the results and ill be honest the dr kinda made me mad and concerned first ill post what the results are and then y im mad,,,t2 hemangioma, reactive signal within endplates of t7-8 t8-9 and t 9-10 interverbreteable discs, mild diffuse bulge at t 6-7 causeing minimal canal stynosis and minimal anteriour cord flattening. Impression,,,multi level thoracic Disc degenerative disease ..minimal anteriour cord stenosis secondary to minimal diffuse disc bulge at t6-7.. ok so i have no idea what it means ... Just that my dr said ill have this back problem all my life that itll only get worse and operations would only cause more pain? wth? all i understood was the hema thing is a benign tumor and that i have a small bulge??? why isnt it treatable.. dr set me up with appointment to see Physical therapy and put on traction and massage? frustrated here anyone got some advice as to what i should do or what this halabaloo means?
  • I have no experience in this-I just want to tell you to keep us posted and we are here for you
  • I can't offer any advice but I just wanted to say that I hope you can get your pain taken care of asap. I know how badly it sucks to live with pain for extended periods of time, and you are only 2 years older than I am. Do you have any way to get to Seattle to see the specialist or a pain management doctor? It's incredibly important that you go see a specialist.
  • I told my dr i will let him know what i think tomarrow that it didnt taste very nice hearing the whole forever speach and pain management info and that i have to accept this very pain forever and that ill get used to the meds ,, theres gotta be some sort of answer .. im not lookin for a miricle operation to relieve me of back pain forever .. i just want the back pain to be the occasional i overdid it ache . im tired of feeling like this. lastnite i woke up yelling at my spouse to stop cuz he put his feet to the back of my legs and it hurt like bruised feeling . theres gotta be something/s i can do to aleve a great deal of the pain.. i dont wanna be hopped up on meds to feel comfortable its not me,, the sad part is the findings so far are just my middle back i still have my cervicle spine mri to go and that should be a lot like the thoracic,, ugh,, it would be awesome if any of u have some advice from experience to bestow me with like relieving pain and whats beneficial and what procedures are worth it and those that arent and so on.. Thank you everyone
  • seen the nuero today for the first appointment i got a lil insight into the fact that this horrible pain isnt going anywhere. That Thoracic DDD that I have going on isnt really treatable besides pain meds unless my body functions are impaired and not just pain impaired.. He scheduled me an MRI on my c spine FINALLY my family dr said he didnt have the clout to get it approved. the dummy shoulda did them both or the c spine first considering the majority of the incredible pain and misery stems from the back of my head that first vertebre to between my shoulders.. He mentioned something called carie malformation i havent really looked into it yet I dont want to scare myself not until im told this is a real issue. He also mentioned c spine ddd and the possibility of it being a part of my t spine stuff.. Ugh I dont know many answers at this point i hope i get er figured out soon but i do realize that for some ppl it can take a long while... If anyones out there that knows bout all this feel free to drop me a line .. ide luv to hear some good ways to help it stop hurting.. Even the medicine isnt helping tonite.
  • I'm sorry to hear that Barb. It's terrible what some people (you) have to go through before someone will help. I hope someone with experience with the same kind of problem reads this and can give you some hope. Good luck.
  • I hope so ide luv to hear some good stuff on how to help and so on
  • SpineAZSpineAZ WiscPosts: 1,084
    Chiari Malformation may be what he was talking about. You'd need to have a head and neck MRI to see if this was even a possibility.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • and im hoping he is wrong i looked it up and sypmtoms are similar but i think its just the herniated disc....
  • I ended up having 4 discs replaced with cadaver bone and bone marrow from my hip feb 24th. they put SWIFT plates and screws in my neck. I have a nifty scar across the front side of my neck. 3 months later I am in more pain than i was. the word cascade sounds like the word i would use in describing the pain lol. each week a new area starts hurting or the old ones return even worse than they were before. it is as though the discs are giving out due to them taking on the load that was shared with what is now my imobile neck lol..I still have a rediculous amount of responsibility so my healing process has been hectic. I still cant stand pills and I still push myself past the point i should. I spend many hours each nite waking up hurting. my newest addition to the pains is me waking in the night with the horrible stabbing pains in my middle back. I wake up and it is so bad I sqwerm like a child rolling from side to side crying. the feeling is as though my back was broke in my sleep. so bad it makes me vomit. my only warning is the migrain headache that put me to bed early to begin with. I just dont like how this ddd stuff is looking. Im afraid i made a mistake having my neck fused. i should not have listend to the nuero surgean he had me believing ide be riding and climing and running in a matter of a few weeks and ide wake up pain free.. im still waiting. I cant even hardly walk. i have an appointment in 2 days but some reason i am feeling like hes gonna ignore me like the last appointment. i still have a raspy voice and lose it completely when i raise my voice or speak to fast. i have to be deliberate in my speaking and moving or i spend days regretting
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