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severe neck/head pain post T-1 to pelvis fusion w/ hardware

jlmalicoatjjlmalicoat Posts: 5
edited 10/13/2013 - 9:15 PM in Neck Pain: Cervical
Hello everyone! I am new to this site and am looking for some who are where Im at or been there done that, or anyone who has a thought on what the next step might be. This might be a drawn out post as Ive been a scoliosis patient since 1979 and have a need for as much knowledge as I can get on the subject and since Ive became an adult (I was 12 w/ first surgery) I have searched for every Doctor Ive had to be the best doctors I could find that Im comfortable with touching my spine> Ive seen ALOT of them! lol
1978: Diagnosed with 68/42 S curve by Dr XXX was placed in a Milwaukee Brace to allow me to grow some in height. 1 year later and a couple of inches taller (Im 5' 5") I was taken in for my first surgery where my spine was fused T4 to L2 with a Harrington rod placed. I spent 9 months in a body cast. Surgery was deemed a success.
Fast forward to 1999-2001 Suffering with pain in my back above and below fusion I began my journey as an adult who made her own medical choices and spent a little over a year going from Neuro to Ortho Doctors (I believe 14 in all) before I found my last doctor XXX. After all the conversations and tests we both decided to extend my fusion to T1 to pelvis with a 2nd Harrington rod and 6 "screws" connecting it all to my pelvis. Again was successful.
Fast forward to 2012-2012 I am now suffering with severe headaches at the base of my skull pretty much on a daily bases usually from the moment I wake up if it doesnt wake me up! As I always have I analyze and research and proceed as I think is the best. And right now it seems as if alot of the problem seems to be caused from the position I sleep in and probably my pillows as well but I have only been able to sleep on my left side in the same position (as fetal as you can be with an almost completely fused spine) with a pillow between my knees since my first surgery! Pain meds only help as long as I take them several times a day and only help! I dont want to take meds for pain every day and could be willing to try surgery again if it could solve the problem but am hesitant about yet another surgery on my spine.
Thanks for listening to me ramble and for all responses! :)

Post edited by Liz (moderator). Forum rules prohibit the naming of specific doctors.



  • AllMetalAAllMetal Posts: 1,189
    edited 10/13/2013 - 11:28 AM
    Welcome to Spine Healthy. We have very similar stories. Except currently I have no more "extra" pain (cervical in our case). I do think its time to go back to a specialist and have some discussions about where you go from here. Wishing you the best.

    Also, I sleep the same way you go...lol. I find that about every year I have to purchase a new body pillow because slowly over time they aren't as fluffy and when I get a new one I'm always surprised that it helps as much as it does. Fortunately I no longer take narcotics or muscle relaxers. On my bad nights (and sadly those are frequet) I use tylenol PM and Melatonin in combination. I have discussed this with my doctors and for my body/age/condition they feel this is a good choice. Might want to consider speaking with your doctor about those meds to see if they are safe for you to try. I also find walking at night (I walk a little over 3 miles with a friend around 5 times a week) increases my night time pain but I sleep much better. It took me a long time to be able to walk and walk distances, and still it generates lots of pain, but I've been able to push through. Not sure if you have pain walking. I know it is suppose to be one of the best things for spine patients, but my surgeon didn't suggest I force this me with my issues, not sure for you.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • jlmalicoatjjlmalicoat Posts: 5
    edited 10/13/2013 - 12:15 PM
    I have bypassed the tylenol PM, melatonin combo BEFORE I went back to narcotics! Got to a point on those that the meds were disrupting my sleep so bad I couldnt get more than 2-3 hours of sleep a night. I dont take any meds for pain on a regular basis right now and havent found a better way to get sleep. Ive been through the spectrum of controlling the problem without surgery. I am at the point of surgery I know but I want to know what possible surgery techniques people have had done in this situation and whats worked and what hasnt. I am going to a doctor this week, for a follow up to another surgery I just had a couple of weeks ago (complete hysterectomy) my 13th surgery in my life! lol Im a mess and always have been! But I handle surgery well and heal well. But I couldnt find a doctor to do everything that needs to be done at this time all at once! Haha. Had to choose what came first. This time my spine actually came second. :( When I had my first surgery,in 79 they took bone graft from my right hip, fast forward car wreck in 2000, hospital said my right hip was dislocated (possible indication of fracture) placed back in socket re-x-rayed and report (I have it) said in the 2nd x-ray showed no indication of fracture but doctor did surgery anyways. :( Now Im having issues with it as well but doctor and hospital are now gone from that. Neck next then my hip! Im working on the worlds most hardware in the human body here! UGH!!! Still always have a positive attitude!!!
  • Sorry the point with my hip was I want do the walking thing but as of now I cant! Sorry was multi-tasking with too many thimgs right now! lol
  • Are we kin? lol. At 33 I've had 10 surgeries... and I'm truly hoping to not up that number any time soon.... I do great with general anesthesia under 3 hours... and pretty good at around 6hours, but I'll be honest... my 10 hour surgeries... not so good, not so good at all. I'm going to let you go for that most hardware....lol I'm stopping right where I am... hopefully for good. I have a two significant curves still but not enough issues to go for more surgery. My original spine surgery at age 9 they did the bone from my hip and it fused solid. Unfortunately for all of my recent major revisions there was no OR time for that. I had tons of pain with that hip growing up, but like I said, in the end for me it was worth it to have such a solid fusion. I'm sorry you have problems with your hips... Are you going to have them replaced? I know Ron and some others here have had to have hips replaced and probably have good suggestions on how to deal with that surgery with an already messed up spine. Best of luck to you! Hope you can at least up grade to all titanium :)
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • jlmalicoatjjlmalicoat Posts: 5
    edited 10/13/2013 - 1:04 PM
    We might be!! lol My x-ray of my spine is almost identical to yours! I still have a pretty significant curve but due to how both my surgeries were done I have no pain in my spine below my neck. Just really dont want to lose the mobility in my neck by having it fused. I am happy to report I am all titanium, so far! :) I also do well with all anesthesia. Yea! lol I am very tough with it all! I was walking on my hip before the quack (sorry) thought it was broke and did surgery and walking on it immediately upon release from the hospital. He didnt replace it but put a pin in the femoral head of it. I just recently started really having an issue with it. Doctors have learned to listen to me when Im in the hospital! Always tried to give me morphine and such. Cant keep me in bed with that stuff! Gives me loads of energy! Caught me cleaning my hospital room once! lol I expect my hip surgery to be a breeze, this time Im sure they will replace it! Think they would do the other one thats fine too just so I dont have to go back later???? J/K!!!!!
  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
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    All of this will help make your threads better and improve the times and quality of responses you will receive.

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I can't imagine all the fusion plus bad femoral heads... that would be tough! I don't imagine you are able to bend much. I have to say I'm not sure how I'd manage my life if I couldn't pick things off the floor... You'll have to keep me informed as to what the surgeon recommends.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • They told me at my very first surgery that I wouldnt be able to bend over and pick stuff off the floor. But even after having my 2nd OP I can bend straight over and touch the floor with my fingers. Maybe it was all the years as a kid when I was into gymnastics? I will keep you posted as I learn more! :)
  • I was told that too, and I can still bend perfectly too... but I don't have a messed up hip!!!!! lol. Here's to continued mobility!
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
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