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  • 9 mos.post ACDF 4-5,5-6 Terrible Pain

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    Old 01-08-2005, 08:00 PM   #1
    valleygurl
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    Unhappy 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Can anybody help with some info or some insight? I used to post on here quite abit before my surgery but havent been here in awhile. I had disc herniations at c 4-5 and 5-6 that i suffered with for about 2 1\2 years at least before i opted to have the surgery. I had the ACDF with Titanium cages and Bone Matrix done April 5,2004. The surgery went ok, however it ended up taking quite a bit longer than the neurosurgeon had planned because he said that once he got inside that i had severe osteoporosis and my bones were so soft that he had to be extremely careful. He suggested that my GP prescribe meds and treat me for the Osteoporosis. Well i had testing done and it came back that i do not have osteoporosis at all!!!! I asked my GP how it could be that the Neurosurgeon actually worked with my bones and said that it was severe but yet all the testing came back negative. The only thing the GP could offer was that maybe i just have locallized osteoporosis only in my neck. Go figure!!! So anyway, my neurosurgeon is one of the top 15 neuro in the whole US, so i totally trusted him to do this surgery. I totally regret having the surgery, the pain is sooooo much worse now then before i even had the surgery. I have had repeat x-rays as well as MRI's and the neurosurgeon keeps telling me that he cannot see why i am still in pain. He says everything looks perfect and of course keeps repeating to me how he just dont understand how i am still in pain because he has a 100% success rate!!!!!! I am just at my wits end, i am soooo tired of dealing with the pain everyday of my life!!!! Now i guess the only thing left to do is for me to have another myelogram done and i am scheduled for that on the 19th. I am totally not looking forward to that seeing how when i had it done the last time when the dye went in it caused me such excruciating pain. I have a high tolerance to pain but i'll tell ya, enough is enough. Has anyone else experienced this same pain post op? If so, how did you manage it and what did you do? Please, any info would be greatly appreciated!!!! Thank you so much in advance.
    ValleyGurl

     
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    Old 01-11-2005, 04:11 PM   #2
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Hi,
    Well I can realte to all you have written. I had an ACDF C5-6-7 in 10/2002. Within 2 weeks post-op the pain was unbearable. To make a long story short, I switched surgeons and was sent for a myelogram that revealed stenosis at c6-7 from a bone spur and c4-5 was herniated. My life has been miserable ever since that first surgery. Was your post-op MRI with contrast??? Contrast is a must for anyone with titanium as the titanium produces shadows which can distort the mri pcitures.
    Anyway, I had a posterior laminectomy-foraminotomy at c6-7 to remove the spur in June 2003 and then a revision at c5-6-7 due to non-fusion and a new acdf c4-5 due to the herniation was done 2/2004. I am still in pain everyday, i have lost my life to a damm plate in my neck. I am now on duragesic patches, lidoderm patches and percocets daily. I go to pain management and was also given topamax to help with the tingling and numbess in my extremities.
    I really dont know what kind of advice to give you as I myself was lost when this happened but I will tell you to get a second opinion and go for a EMG.
    If you need any questions answered, type away....

    Good luck
    Lori

     
    Old 01-11-2005, 04:45 PM   #3
    zoey1
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    i am very empathic to your situation as well and share in the same woes.
    To make matters worse the worst bill we got from the shabang was the monitering company that charged more then the surgon or the darn hostpital,
    we are fighting with insurance company, and i hate to have to go back in for surgon.
    My double level fusion was June 1 and it has been a very painful slow recovery to include fighting for decent pain managment.
    My only light at this time is my rehmotogist that when its so bad i can't stand it i make appointments with her and get pain shots.
    I see my surgon on monday and resent having to go in at this point.
    I have lots of other troubles that were enhansed due to all this crud. i am at a very low point with major bills and little light at the end of the tunnel.
    Since surgery i am also being treated for diabetes, hypothryiodism, rhumtoid arthitus , have a mamogram friday for cysts found which will also be biopsed.
    I do beleive the upset nerves upset everything and it's still not back in "order yet".
    I am not sure if the surgery made everything go out of whack and the constant pain made things much worse but i am begining to wonder if there is a connection??????????
    Anyway i wish i had better news for you, but i would wonder if there were other things going on with you as well that were just "never found yet"
    My suggestion would be a follow up with a rhumotoid doc and lots of blood work to see if other happenings be affecting your recovery.
    My good thoughts and prayers go out to both of you and all of us that are still suffering months after the initial surgery....

     
    Old 01-12-2005, 09:30 AM   #4
    valleygurl
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Lori and Zoey,
    Oh my gosh, thanks soooo much for posting! I was starting to think that i was the only one who suffers post op pain. I am sorry for all the pain that the two of you have to endure everyday such as i do, i wouldnt wish this pain on my worst enemy!!! It is so very hard and discouraging for me because i chose one of the top 15 surgeons in the US to do my surgery and i still have all this pain and to make matters worse, when i go to my appts to see him he acts all discouraged and even agitated because he has a 100% success rate. So he says! The MRI i had was without contrast and of course where the titanium cages are it is indeed hazy. I have had repeated x-rays and he still keeps insisting that there is nothing wrong with me. So needless to say i am scheduled for the horrid myelogram next Wednesday. The Neurosurgeon wont prescribe pain meds because i have a GP that i see because i not only have the neck pain but i have back pain as well. My GP does prescribe meds but he acts like i dont really have pain, and as a matter of fact the meds that he had me on he is weaning me off of. I just turned 36 last Saturday, he doesnt want me taking pain meds because i am to young.
    The past couple of weeks has been hell because i am getting down on such a low dose of meds that the pain is really coming through. I am really discouraged and scared because now not only having the neck pain a few days ago the pain has shown up in my left shoulder and down my arm....scary because that is where the pain was when i initially herniated.
    I too can totally relate to the financial strain this causes. You are not alone there either. I have to pay for all my meds and at one point they were costing right around $1400.00 a month!!! Then i just found out a couple weeks ago that when i had my surgery my insurance paid for the hospital portion but for some reason not the Neurosurgeon so now they are telling me 9 months after the fact that i owe them over $6000.00!!! I am soooooo fed up!
    Ok, here is a question for you guys. When i had my last myelogram done, the part where the needle was inserted was tolerable, but when the dye went in i could feel it down in the tail bone area and the pain was so intense and then when they tilted the table downward and the dye ran up to my neck, OMG, i just wanted to die!!!! The pain was so bad! Did it feel this way for you guys? Was the dye painful for you and could you actually feel it moving up your spine? A long time ago i seen posts on here from people who had said getting that done was a piece of cake and didnt hurt. I just dont understand. When the doc said he wanted to do the test again he saw the horror in my face and asked me what was wrong. I told him that it hurt soooo bad that i had swore i would never get it done again. He said that it shouldnt have hurt and that next time to remind him and he will give me more medication. When i had it done and they had given me medication to "relax" me, i didnt feel any different. When the procedure was all done, i fell asleep immediately and i just couldnt wake up. I hardly even remember coming home!!!!! What was it like for you guys? I really do appreciate your support. I need someone right now who can understand. I feel like i am so alone. I feel so sorry for my husband, I know that i must sound like a broken record always saying " OMG, my neck hurts!". Thanks,
    Wendy

     
    Old 01-13-2005, 08:46 AM   #5
    kellyv
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    Old 01-13-2005, 10:22 AM   #6
    valleygurl
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Kelly, Thank you so much for posting and telling me your story! How old was your injury when you had your surgery? Boy, when i read your post i thought that i had posted it!lol I too am like you as far as not leaving the house or being able to do things. I feel like i am a prisoner now because i dont dare to leave the house and be gone long because i have to be able to lie down because of the pain. I dont really have many friends left either. Like you, thank God for my husband. It is sooooo hard living like this and the doctors just dont understand. My Neurosurgeon is a little over an hour away from me so i dont see mine much either. I dont really care to either, he is so worried about his wonderful success rate that he has even went as far as telling me that my pain is in my head. Reason being, I have a very stressful life at this point, I am trying to deal with my pain everyday and i have 5 children with my youngest being very very severely handicapped. Then to make matters even worse, my best frind in the whole world just passed away a few short months ago and now i am raising her two small children. (ages 4 and 7) I also have visitations of my nephew every weekend and school holidays so that takes me up to 8 children to care for most of the time. The neurosurgeon of course wants to put the blame for my pain all in my head because of my handicapped child. I told him whatever!!!!!! This whole thing is a mess and i am anxious to see what the myelogram shows. I will let you know. Just remember, you are not alone!!!!!! It is sooooo weird how our situations are soooo similar!!!!!! I have a question for you before i go, did you regain all the feeling back in your neck in and around the incision site? I never regained all the feeling back under my chin!!! Hope you start feeling better soon,

    Wendy

     
    Old 01-13-2005, 11:25 AM   #7
    kellyv
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    Old 01-13-2005, 12:14 PM   #8
    zoey1
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Update Newest NEWS as of todays visit and tons more tests

    Spondilitus, which means in time total failure of the cartlige in the spine and the good news never again fusion ( my body will do it on its own with this disease) once i have a total broomstick back supposedly no more musle spams and or neck pains ( jsut else where from rhumtoid arthitus) but certainly not as severe as now

    Even better news is that Rehumtogilst part of treatment ( no cure ) is ACTIVE pain managment no more ever begging for pain meds

    i got two supper duper shots in each arm today and lots and lots of pain stuff from musle relaxers to pain management
    I am grateful now i know They did a hip xray spinal tap and my sed rate was above 49 ( high high imflmation)

    Basicaly till pain is more under control my activites like yours are limited no more then 10 pounds lifted limited driving (10 miles) i can go to grocery store and mass pretty much unless a cab most other things are out
    but like yall my life was very quiet anyway cause of severe chronic pain

    i am grateful to know why rest of it still hurts and even more grateful the failure of the cartlege showed up visably on exrays up and down my total spine ............

    at least we have answers now and though not wonderful the not having to beg for pain stuff is a blessing and now they no why !!!!!!!!!!!!!!!!!!!!!!!!!!
    i think knowing why is half the battle one day at a time ladies,
    remember always to count your blessings being grateful for what you can do
    not beating yourself up for what you cannot do

     
    Old 01-13-2005, 06:11 PM   #9
    kellyv
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    Old 01-13-2005, 07:47 PM   #10
    deana p
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Hi yall !... I had a C5-C6 fuson w/ titanium and I did NOT do donor bone....and let me tell you , the healing of my bone graft was WAY WORSE than my neck surgery. ANYWAYS...A question was asked about the mylegram ....OMG......if youre taking ANY kind of pain medications , make SURE you take it before the mylegram. It was worse than labor pains. Ive had 5 kids. ......Your blood pressure goes way up, and if you can believe it, it almost hurts too much to cry........

    Since my surgery , Ive been to several doctors for diffrent pain treatments...PT, steroid injections, facet injections, pressure point ( I think thats what it was called) injection , electrical stimulation ( RS Medical),and some nerve test that I dont remember the name of but it hurt real bad....the one where they sick that needle thing in you and see what kind of response you get from your nerves..really hurts ......now Im seeing a Pain Management doctor. ...Im on Morphine Sulphate 90 mgs a day and lortab for break thru pain..My MRIs Ive had since the surgery show that the disks above and below the fusion are now bulging and theres bone spurs.....I dont want another surgery, tho they say Im not yet a candidate for one but will be in the near future. Just seems like a vicious circle.....


    hope all is feeling well today !

    deana

     
    Old 01-13-2005, 08:37 PM   #11
    zoey1
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    i appreicate all of you so much and hope eventualy yall find answers and pain managment

    I listed this before i had the fusion back in June here is my list once again,

    i can go to mass (but not kneel) i can go to the grocery around the corner but no more then 3 bags.

    I play mass multiplayer on lines game (small monthly fee big community)
    i meet lots of folks of all kinds and deveolped strong bonds with guilds within the game . We have voice chat so we can hear each other while playing
    I love listening to taped books ( which can be gotten at half price books) or from library

    i use small containers very small dirt bags and enjoy growing herbs in my kitchen, before all this started i was an avid gardner and had to let that go, but since i can still play with my plants in a small way i am very grateful

    I beta test new software at home and do bug reporting
    i can once in a great while still manage the short songs on guitar
    and play a bit longer auto harp

    i can't sing in the choir cause it requires standing ,up down and i had to let that go, and playing guitar at mass

    i can take short walks no exercise till inflmation/flare up under control
    i can talk lots on phone till i have to rest

    i love seraching the net and visiting Online musemes and get to tour another country every day ( when albe), oh i also visit zoos on line, aquariums and watch the live web cam , moneky watching is fun!

    i love movies and cable
    Over xmass i got to go with hubby for a few hours to a butterfly exibit that was wonderfuly done with live butterflies, and then spent a bit of time in the Japness gardens that even after a very rare snow event here xmass day and xmass eve looked lovely.
    I felt the leaves, smelled the flowers, drunk in the dukies, squirles and got to see some wonderful sage and lavender in full bloom and of all things weird, jasmine ( what a smell)
    i eat out once in a while with pals, have pals over lots, and a wonderful supportive family.
    Older son just repaited a few bedrooms wonderfuly well and even cleaned up after himself

    as far as house hold aids; got a facet with seprate hot cold levers wonderful when hands not working as intended

    got lever door knobs on all my doors, if carrying a very small load of laundry on finger touch kick door and it opens no more struggling with door knobs
    favorite helpful aid is black lids off, works on all kinds of jars and lids
    making these changes mega helps with daily living chores

    oh big rope around frig door with a knot in it ( easy to open)

    so theres my what i can do and my helpful tools list combined in one !!!
    figure out what u can do makes dealing with what you cannot do so much easier!

     
    Old 01-17-2005, 01:05 PM   #12
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Zoey...you forgot one more thing you have acquired through all this.....an ability to verbalize very important alternatives for people like us in aiding themselves...essentially you have become an occupational therapist...

    I too miss gardening...so when I move I am going to have a small sunroom and grow things in small pots that are manageable. As well some of your interventions like listening to a book vs, reading it sounds really smart... my grandfather used that for his arthritis ridden body at 83years... I find it hard to bend my neck and was thinking of having a carpenter build up a shelf /desktop in front of me to do my internet university courses. I really like the idea of sitting back and having someone read to me as my eyes are far sighted and its a struggle even with glasses after all these surgeries. It may be coincidence but they have certainly gone downhill through all this bout with spinal cord pain.

    So...you have synposized some great ideas that are actually quite brilliant and maybe you should pen them (or type them) in a sheet form and keep them on hand for others who need these interventions so you can disseminate this information...

    WELL IT IS -35 degrees up here in Canada today and I have the fireplace going and the heat up and the dogs and I are glad to be inside chowing down on healthy food and awaiting the Spring.

    You take care now... Nero

    Last edited by nero; 01-17-2005 at 01:08 PM.

     
    Old 01-18-2005, 05:33 AM   #13
    mgriff
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    I to have problems with ACDF. I had a 2 level c5-c6, c6-c7 with doner bone form hip plate with screws. I have lots pain, DR. did x-rays and said everything looks good. I lost my insurance for a year so my GP perscribed pain meds,they helped a little.

    When I got my insurance back I went back to my spine doctor. He had me do a MRI and Cat scan. The Cat scan showed a failed fusion on all levels.

    He said I need more surgery but I can not do it now,"mental and lost wages"
    I am self employed with no disability insurance. So now I am doing the pain managment thing.


    I'm glad to see I am not alone with surgery problems.

    Mark

     
    Old 01-19-2005, 09:43 AM   #14
    valleygurl
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Hi All, Just wanted to give you all an update. I left the house at 4:30 a.m. this morning to drive the hour and a half to the hospital for my myelogram. They of course drugged me all up and the Dr. was late. So they get me on the table and the Dr. is all gloved up ready to insert the needle when i reminded the Dr. about how uncomfortable it was last time and how it felt. He immediately said "well, then i am not going to do this and risk it!"
    So here i am drugged up for nothing and then was taken for a CT scan instead!!! So here i am, trying to rest but never fails, one crisis after another. I always say "no rest for the wicked!" lol I guess i will find the results of the CT in a couple of days. Will update you all then!

    Wendy

     
    Old 01-20-2005, 05:31 AM   #15
    zoey1
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    Re: 9 mos.post ACDF 4-5,5-6 Terrible Pain

    Posting,'

    i noticed a new pattern with me with that, i tend to post only to those posts that are 4 -8 month mark still in pain posts

    i do read the surgery upcoming posts, but i feel as if my views on the surgey are ascewed cause of my not so wonderful outcome.

    Do yall cringe when folks are asking should they shouldn't they?

    And knowing what you know now would you have done it ????
    i know hind site is 20/20 and there is so much the surgons do not tell us

    and how they do not get in many many cases pain lasts long long time.

    just a bit of rambeling................

    oh one really good day yesterday no meds but by last night same ole same ole and mornings bad flare up ..................
    one step at a time.....................

     
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