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Thread: Back again needing more removal surgery

  1. #1
    Join Date
    Jun 2016
    Location
    London, England
    Posts
    12

    Back again needing more removal surgery

    So im back again, its been a few years since i was here last, by my recollection i think it was 2018 after i had my first lot of metal work taken out of my neck... Well, even more i playing up now with it all, yay for softer bones due to my NF1. Currently on the waiting list to be seen by a specialist clinic before im referred to a consultant near my new place of living as I've moved away from where i was when i lived with my parents.

    My question to you all is who has experience of multiple revision surgeries where they removed metal work? How did your body react and how long did you need to take out of work to fully recover. Mine won't be until 2022 (yay for covid and the NHS) at the earliest but I want to make sure I can go to my work place with something to make sure they can get cover for me while off. If anyone on here happens to be from the UK and knows of where a list of consultants can be foound that would be ace too!

    any advice would be greatly appreciated.
    my fusion is from c5-t12 (with a few fancy bits of work done by my amazing surgeon)
    Last edited by JayMoe; 09-16-2021 at 04:16 PM.

  2. #2
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    1,080
    Removal is fairly easy. Depending on the amount I would say 4-6 weeks. If you don't have to have removal, it is better to leave it.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,447
    Jay, Sorry to hear this....What's going on with pain? Have they shot any x-rays?

    Here are a few links...

    https://sauk.org.uk/

    https://sauk.org.uk/supporting-you/find-a-specialist/

    https://www.ctf.org/news/fda-approve...eatment-for-nf

    I am fortunate to still have all my bits and pieces...

    Say Hi to the Queen for me

    Rod
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Jun 2016
    Location
    London, England
    Posts
    12
    Quote Originally Posted by jackieg412 View Post
    Removal is fairly easy. Depending on the amount I would say 4-6 weeks. If you don't have to have removal, it is better to leave it.
    Yep, but this is best in my eyes as i get lots of tension headaches and neck pain because of the protruding metal work. I just don't want to be taking pain killers for no reason as i don't want to be dependent on them. (i joke im the office drug lord due to all the ibuprofen and paracetamol i carry with me LOL)



    Quote Originally Posted by titaniumed View Post
    Jay, Sorry to hear this....What's going on with pain? Have they shot any x-rays?

    Here are a few links...

    https://sauk.org.uk/

    https://sauk.org.uk/supporting-you/find-a-specialist/

    https://www.ctf.org/news/fda-approve...eatment-for-nf

    I am fortunate to still have all my bits and pieces...

    Say Hi to the Queen for me

    Rod
    Pain most days is non-existant but the days i have issues its bad, can lead to a small migraine which makes me just want to be vom.

    No x-rays just yet. Still waiting to hear from the clinic, I phoned and left them a message on my lunch break at work as the date has been and gone. I should hear back from them in the next 2 days now.

    Hopefully not too long until i have a few questions to my answers i don't like being in limbo like this.

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,447
    Jay, I feel for you as I have had some light degenerative cervical troubles (disc herniations) and still un-fused....and I must say that the neck problems are tough to deal with. It completely wipes me out sometimes and have to lay down....

    They will probably want to shoot MRI's also....

    Hang in there and let us know what happens. You are the only NF1 case posting...

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
    Join Date
    Jun 2016
    Location
    London, England
    Posts
    12
    Quote Originally Posted by titaniumed View Post
    Jay, I feel for you as I have had some light degenerative cervical troubles (disc herniations) and still un-fused....and I must say that the neck problems are tough to deal with. It completely wipes me out sometimes and have to lay down....

    They will probably want to shoot MRI's also....

    Hang in there and let us know what happens. You are the only NF1 case posting...

    Ed
    I feel you there with the neck issues. Had terrible neck and back pain the last week, mixed with knots all the way down by right shoulder blade. Only way to relieve it all is with pain killers. Just willing the winter to go now as its got very cold so my neck is constantly seizing up

    Good news though is I've finally had my referral through from the doctors. I'll be seen on the 1st March as they are fully booked until then. I'll be giving the booking office a call to see if anything can be done about being seen earlier. The surgeon I'll be under seems to be good. Also, not a huge travel too to see them, only in the next city to me which is a 45 min bus ride away (about 10 miles) so at least i no longer have to travel 4 hours to London to be seen each time I need something.

    I thought with having all the metal in me, MRI's were no longer a viable option? I thought it would only be a CT that they could do?

    I'll be on again with more info as to what they will be doing once I've been seen.
    Neuromuscular Kyposcoliosis, fused from C5-T12 for S-curved spine.
    Halo traction- 1 May 2014
    Surgery 08 May 2014
    Illiac strut graft around the T3-5 ish region because of sharpness of curve there. undertaken 5th June 2014
    Revision- neck hooks pulled off so got those taken out 3rd July 2017
    Underlying issues with Neurofibromatosis.

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,213
    Quote Originally Posted by JayMoe View Post
    I feel you there with the neck issues. Had terrible neck and back pain the last week, mixed with knots all the way down by right shoulder blade. Only way to relieve it all is with pain killers. Just willing the winter to go now as its got very cold so my neck is constantly seizing up

    Good news though is I've finally had my referral through from the doctors. I'll be seen on the 1st March as they are fully booked until then. I'll be giving the booking office a call to see if anything can be done about being seen earlier. The surgeon I'll be under seems to be good. Also, not a huge travel too to see them, only in the next city to me which is a 45 min bus ride away (about 10 miles) so at least i no longer have to travel 4 hours to London to be seen each time I need something.

    I thought with having all the metal in me, MRI's were no longer a viable option? I thought it would only be a CT that they could do?

    I'll be on again with more info as to what they will be doing once I've been seen.
    Hi...

    Steel implants will distort MRI images by producing artifacts in the general area of the implants. They will actually also distort CTs in the area of the implants. Titanium implants will distort the images less than steel. So, if you have spine implants below the cervical area, the images should be clear. Nonetheless, be sure that the technicians know that you have spine or other metal/titanium implants.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,447
    CT and MRI are both safe with scoliosis hardware, and it's all about the optical distortion as Linda states. Halos and white spots around the hardware. I had CT's done looking for gall stones and you can see the brightness on the screw heads.

    They might do an MRN which is used for looking at nerves.... It's a modified MRI.
    https://en.wikipedia.org/wiki/Magnet...ce_neurography
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367943/

    One of the things I do now is to go on standby for a cancellation. That way, I don't have the guilt should I miss an appointment, and I fill the spot when somebody misses an appointment. You just have to be ready to go in when they call you. This might get you in quicker.

    I would also ask about other pain medication options.

    Do you think your pain is all weather related? Do you notice that its worse before a storm moves in?

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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