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Benign spinal cord tumour

  • 05-02-2015 11:47am
    #1
    Aye Bosun
    Registered Users, Registered Users 2 Posts: 349 ✭✭


    Hi All,

    Just wondering if anyone on here has had benign spinal cord tumour like myself. I was first diagnose in 2008, initially it was thought to be MS but after an MRI it was confirmed as a benign tumour, T11 - L2. I had my first surgery in 2008 in which they removed about 50% but due to the nature and position of the tumour they left the remaining 50% in there. I recovered well from the first surgery and regain full functionality. Unfortunately for me it returned last year and I again had surgery in Sept 2014. This time round i have not been so lucky and have had some nerve damage down both legs and as a result have a lot problems walking etc. They did remove about 90% this time round but to the expense of functionality for me.
    I am just looking to chat with anyone else who has a similar issue as myself because I have yet to meet anyone else with this issue.
    The only cause I have been given to date is that is may be associated with Spina Bifida Occulta, which makes sense as there is a history of Spina Bifida in my immediate family.
    Anyway if there is anyone on boards.ie with the same condition I would love to hear from you.


Comments

  • #2
    piperh
    Registered Users, Registered Users 2 Posts: 989 ✭✭✭piperh


    Aye Bosun wrote: »
    Hi All,

    Just wondering if anyone on here has had benign spinal cord tumour like myself. I was first diagnose in 2008, initially it was thought to be MS but after an MRI it was confirmed as a benign tumour, T11 - L2. I had my first surgery in 2008 in which they removed about 50% but due to the nature and position of the tumour they left the remaining 50% in there. I recovered well from the first surgery and regain full functionality. Unfortunately for me it returned last year and I again had surgery in Sept 2014. This time round i have not been so lucky and have had some nerve damage down both legs and as a result have a lot problems walking etc. They did remove about 90% this time round but to the expense of functionality for me.
    I am just looking to chat with anyone else who has a similar issue as myself because I have yet to meet anyone else with this issue.
    The only cause I have been given to date is that is may be associated with Spina Bifida Occulta, which makes sense as there is a history of Spina Bifida in my immediate family.
    Anyway if there is anyone on boards.ie with the same condition I would love to hear from you.

    My son has a spinal cord tumour diagnosed and operated on twice late in 2014. Like you they got some but not all of it the first time and then went back in for more. It's attached to quite a few nerves. They haven't got it all and we know it will regrow but when is anybody's guess.


  • #3
    Aye Bosun
    Registered Users, Registered Users 2 Posts: 349 ✭✭Aye Bosun


    Hi Piperh,

    Sorry to hear about your son. How has he been getting on since his surgery? Has he been given any reason for the tumour?
    The chance of regrow is always hanging over my head and I assume the same for him. I got 6 year between surgeries this time around and found the advancements in the surgery and technology greatly improved. I am hoping next time it causes a problem there will be more advances. I am really concerned about having more surgery as each time I lose more functionality, there is research going at present to see if Radiation treatment would help, my surgeon has said that when we see regrow they try radiation first as it far less invasive and less chance of damage.

    Hope your son's recovery is going well! If i can be of any help let me know!


  • #4
    piperh
    Registered Users, Registered Users 2 Posts: 989 ✭✭✭piperh


    hi Bosun. He has some numbness in the one leg and pins and needles in his foot but mobility wise he is doing ok. He is only young (20) and he was in such a state before the first op that he thinks its a small price to pay. We are hoping the same as you that by the regrowth time technology will have improved because the complications will only get worse. He has been told it will keep reattaching itself to nerves.

    He was told the type of tumour but they couldn't give any reason for the cause or how long it's likely to have been there. The specialist was very good and honest but didn't have many answers. Were you treated in Dublin?

    I think it's as much a mental thing for him now knowing he is a ticking time bomb waiting for the next hit.

    Good luck with everything and if we can be of any help just shout.


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